20 Episode results for "talking cancer"

End of life care and coronavirus

Talking Cancer

22:25 min | 5 months ago

End of life care and coronavirus

"What end of life support is available in a global pandemic. Hello i'm a and welcome to matt. Mullins corona virus series of talking cancer. You might have already listened to previous episodes in the series in which case while combat. And if it's your first time joining us. This is a podcast from mellon and boots. Well i talked to experts to get answers to the questions. Million is hearing the most today for our final episode in the series. I'm talking cancer with adrian. Betty who is the strategic advisor for end of life care at macmillan if somebody is pushing into the life they are entitled to benefits this the fifteen hundred which is a banish it for people who have got candidates. We're going to talk about coming to the end of your life. And what support is out there now. Corona virus is in the picture. And i do just want to let you know that. This episode contains content which might be upsetting for some business for anyone in need of support. Please do contact the macmillan support line. it's open seven days a week. Atm till eight pm and you can reach them on. Oh eight eight. Eight double zero double zero. We'll also hear some words of advice from the lovely dany bell. You might recognize her. From previous episodes in the series she's mcmillan strategic advisor for treatment and medicines and she's going to be offering some practical suggestions for those coming to the developed during the pandemic. if you have already started conversations with your family or people that are really important to you about what your wishes are out really encourage you to do that. women melon. I'm talking cancer Lovely to have you with us. Thanks so much for joining us. On the podcast. Great to have you with us today as we've done throughout the series. I'm gonna time stamp. This how you feel but i to me. The information guidance seems to be changing daily. We're recording this room on the twentieth of november twenty twenty and everything we discuss is correct at the time of recording. Now we're discussing a really difficult topic today and of life and i got no doubt that the pandemic has massively debated thoughts around this and i. It's a really emotional time for people at the best of times so adrienne telus wars. The pandemic meant for those who are coming to the end of their lives are still able to visit them at home. Can they get the hospice care. Support for example so many questions. Where do we salt. Okay so i guess amer. It's really worth acknowledging that irrespective of a pandemic so difficult for somebody that is approaching end up ended alive and for their families. The loved ones around them. So that's being made a million times worse for people. Obviously because of all the as he said the government guidelines changes in them. It really difficult to understand what you can and can't access from a support perspective and that's been really hard people another thing i i just wanted to talk a little bit better as well as what we mean by end of life care because i think sometimes people think he's just those last days minutes of life but actually you know when when health professionals talk about end of life care and particularly somebody with cancer is more about somebody who's got for instance an incurable cancer. But they may well have quite a long period of time to live and it may be year months weeks days hours of life. It can be any of those things where it's important that people do get. The supporters areas is possible to then have that continuity to develop relationships with the professionals. So what's what. Impact has the pandemic count. It's obviously made it more difficult. For people. I think particularly the owning the pandemic. It was really hard because people couldn't go to hospital thought they couldn't access services. Were really frightened. Which didn't take you help. People in accessing the support the need but i do want to racial people. They can get that support they can have. District is coming into their homes. You can still go to a hospice. You mentioned hospice daycare. So the helping some services that had to have to be adapted for instance oh some hospices have had to use that daycare and adopted and change into impatient provision in particular when there were more beds needed to clear early on in the pandemic But some of the services is still being delivered in moore's and outpatient and i guess the other thing is to acknowledge that actually health care professionals. Visiting people hiding particularly they really are trying to reduce contact so they don't want to spread the virus the being really cautious so the maybe situations where people are still accessing the services but it may be in a virtual way it may be by telephone it may be a video call and they have less face to face contact which is obviously hard for people. Because they won't see you know a real person in the flesh so to speak But they are still able to access all of those services. There's just expanding a little bit on the palliative care that people can expect at home and yeah that's been a particular concern that we've been hearing mcmillan. Can you just maybe dig a little deeper into what people can expect. And who they might talk to those pathways of communication in order to get the best out of that. Politics can expect at the moment so particular home. The are very different aspects appellative. Kelly can access to palliative care that they can get through the gp through that district nurses community. This is coming to their homes. Could be physio could be occupational therapist and it could be for instance mcmillan special peleliu team which may be especially pud canada's when things are more complex and i guess if people already struggling there are lots of other means of support as well so through local hospices in some areas not areas. There is a million support line which is available seven days a week eight. Am to eight pm. That can offer guidance and support. We got amazing web site. You know you can get all sorts of information on that and also boots pharmacies which rebelled sport people with a urgent supply and delivery of medication which is absolutely vital for people. Because obviously you know the moyal condition deteriorates more likely. You're going to need more complex. Medication can also get virtual -pointment with boots mcmillan information pharmacists. Who can give you and your loved ones and carries information about medication and any potential side effects as well as guiding people most fascist information support. So you can. Book of virtual appointment with boots boots dot com slash. One of the things that's creating the most things -iety amongst people patients relatives harrah's is consistency. A dream would it be fair enough to say. I think with the changing landscape as frequently as is On various areas of the country dealing with this pandemic in their own way to a degree area to area. The is still really important to check with your healthcare professionals. Because what might be a okay. One place isn't the oak is an okay in in another for example. Yeah absolutely fat to say and so there is different provisions across the uk. Know even the fact that we've got four nations who have different guidance so it's really important even within your own country within your own local area if you're being provided support by a healthcare provider for instance they may have different rules and regulations so each hospital will have their own policies about visiting things like that. The community teams will work slightly differently again to fit in with the local needs in the local services. So you absolutely do need to check in with whoever. Your point of contact is whether it's a specialist punter cavernous whether it's your melon nurse that the hospital and whichever the provider is it might be. An acute oncology nurse for instance but but do speak to them about what you can access. We're in the middle of a pandemic. And i guess one of the biggest worries seem so obvious really Is that what happens if somebody is coming to the end of their life and they catch corona virus. What what happens. Then i mean. That's it's hard to believe that. But i'm of course it is in a might happen. What should they do if they're getting symptoms. Yeah so obviously somebody who potentially might be having still palliative chemotherapy approaching their ended. The lives in his going to be for instance. You're more susceptible but that would be the case. If we went in mitzvah pandemic can they could be more settled. Things like a chest infection. So don't feel too alarmed. You know lots of people managed to cope with coronavirus have not. Don't have extreme symptoms. Sometimes people just have lots of taste with might have you know a persistent cough or whatever but it's really really important that you notify your health provider and try and get tested as quickly as possible and follow all the government guidelines as you would in any situation too so it's about reducing any contact about tran stain isolation but i want to reassure people that can still get the support that they need even if they were to get grown virus and they were tim. Instance I don't think it's a news tool that. Of course the pressures on the chest and the pressures on healthcare services are immense during this time and how everybody is dealing with. This is definitely affecting people's care for all sorts of different conditions war if people are being discharged to go home but feel that they haven't been sent home with the right support the right care package. What happens if you are a relative or a career and your concern that people have been sent. I really confident that everything is being done. That could be yeah. I'm not. I can sometimes happen. Even monotony pandemic. so it's really important to get in touch with your local. Gp surgery who can put you in touch with the community nursing team so you can expect to be able to have a visit from a community staff nurse or district s who come out and do listrik assessment. That look all of your needs in your home. they'll think about. Do you need a bed. Downstairs for instance you know how you got access to a toilet or the really practical things as well as you need tools to think about new all you getting the right benefits because that's really important particularly in the current climate when you know people really struggling financially And if somebody is pushing into the lives they are entitled to benefits. So there's the fifteen hundred which is a benefit for people who have got punditry candidates and that can be fast tracked if you are approaching into your life and your gp can sort that out all your melon s But again if you're not sure then please do get in touch with on sport line and they can point in the right direction and sticky on the support line around the finances and we do have benefits gieco which is fantastic. You can do an online check if you getting your benefits or if your loved ones getting the right benefits so i would really urge people to to make sure they do get the right support but it is out that and they can get it. So what are the effects of the pandemic as you. You know clearly explained is that they you know there was pressure on resources and contact is reduce which means that sometimes there may be family relative friends who find themselves in the carrying role That would normally begin by end of life care to buy healthcare professional. She's quite. it's quite scary overwhelming experience for a lot of people. How can they best support their loved ones the end of their lives. And what does the guidance so faw allow for so again. Even when we're not in a pandemic often people do get involved in the care and support of delon's at home because the there isn't usually the twenty four seven support the e would hope to be able to get when when if you are looking after somebody you may get involved in doing some of their personal care things like that. You may be involved in supporting giving the medication for instance but they can still access the support from the community teams. You can talk through all of this whether it's virtual whether it's you know kamala show them how to do things said the won't be alone on a really. Want to reassure people than not to learn and also we need to make sure the carries themselves supported so they're entitled to a carries assessment. The may be other sorts of support that they can get and again they may be entitled to to benefit from sowell's so again it's really worth phoning pau madman support line to see what and talking to and what they can get on like practical basic question so for example if if relative needs to move in with Somebody that they they are then going to look often. He's the i mean. Is that allowed at the moment. So people are still allowed to provide that care for somebody at the end of life and they do have to follow the guidance but the best thing they can do particularly to ask the healthcare provider so speak to their specialist. Patrick kane is for instance millionnaires millionnaire speak to their gpo district. S and just ask what what is feasible. But nobody would stop somebody being with their loved one at home if they were caring for him and obviously people are using their own sensible pragmatic judgment about supporting loved one. Because it's so important to be with somebody isn't it is absolutely crucial. So just just to be clear at and if you are finding yourself in the carrying Role at the moment during the pandemic not expected to take on that role as the healthcare professional. All you oh absolutely not so you may end up doing some practical things supporting your loved one. I home but that wouldn't mean you do bidding really complex things like you know administering high doses of medication or dating with really complex kassar. Anything like that. That would be delivered by a healthcare. Professional will still be delivered by a healthcare professional just briefly as well you mentioned. Obviously we need to make sure that all carriers are looked after In terms of Support out there for carriers you know this is someone only ended the line if this is all too much on occasion and you need you need to offload and and really on some support that way. Yeah unusually The community teams who are providing that support are also there for the karen not just the individual themselves but there are lots of the sources of support so again almonds port line. Is that a people. Please do phone up. Get that support their other sources of support. So there's booklets around carrying for somebody at the end of life is a guide about that is also abbots mcmillan information pharmacists. Who mentioned earlier. It can also support carrozza loved ones so do make him an appointment. Virtual was beaten in store and there was some fantastic organizations as well like an uk who will offer support and advice address. Please go anywhere. Stay with meat. We'll talk more in just a minute questions about cancer. The it's a mcmillan. Your side from the moment to diagnosed through your treatment and beyond our beads mcmillan intimation pharmacists on hand when specialists support from helping you make sense of your diagnosis to advice about living with cancer you can find them. In your likud's fomc online via video appointment visit dot com forward slash mcmillan for more information subject to pharmacist availability at gm. We've been talking a lot about what might mellon. Support line is hearing from Colas walking people do to feel more in control at a time when everything fails uncertain. Even when we're not in a pandemic there is so much uncertainty about and life care and autumn living with 'em constitute treatable but not curable they are living with uncertainty and trying to maintain hope one thing that people find really beneficial is having a really good conversation with your health care professional and it's really important to have open discussions that the professional will tell you around. You know about your prognosis about what you can expect. What treatments choices. There are one of the best ways to do. This is to have what we call in advance care planning conversation. is wilson. Scotland anticipate very care planning. And that's where eighty about nurse or dot talking to you and saying what matters to you what's important to you then being able to write down your preferences and wishes and think about things like if you lose capacity he would you want to make decisions on your behalf And actually naming that person things like would you want to refuse specific treatments at the end of life and when people have those conversations of really really hard conversations to have but actually people feel quite empowered and it does almost instill a sense of hope because people feel is sensitive. Okay after not of soltau fares and will dry would have also written by will talk about my funeral. All of those things then enables them to think about the here and now on the quality of life and trying to get the most out of life so that is a really empowering thing to do and i really would employ people to have those really good conversations and taught elephants about what matters to them as well. I mean it seems like that would be one of the most difficult things in the world to do. But i instinctively understand the kind of Space to breathe that it gives you once. That's once that's done have to say with my mom. She went when she was dying. She had suffered. You'll cancer and she went upstairs with him nurse and had a private conversation. I felt a bit left out to the time but we talked about it afterwards and when she came downstairs she said oh adriana she said i feel so relieved. I didn't realize i could die at home. I plant which batum going to die. Don't want to be in the same bed as you dad. I know what support can get such a sense of relief to have out in the open to talk about it into know what to expect. And that's hugely powerful people. I guess as well. I imagine never forgetting Family members There's always somebody on the end of the nine am a. We know that million. If you're struggling absolutely and i would urge people to do that and particularly for those who are bereaved well so bereavement support is variable across the country. Sometimes how people have to wait to access it. But the and support line is a really great sense for peop- great source to people to actually phone up and just have a listening ear at the other end because sometimes that's all people need just some digital to how they're failing because particularly for grief and loss it's a normal part of of living and dying isn't it you know we we will experience it. Of course of course of course an amazing to talk to you especially with such a sensitive and difficult topics such a bizarre time that we're having at the moment. Thanks so much you take thank you now took to dany. Who is back to give us some practical advice for people coming to the end of their life in a pandemic. I everyone on dany. Might recognize me from previous podcasts. On mr tj adviser and i work commitment said just a few For people around and of life care my first hip. And i'm probably the most important is if you haven't already to compensations with your family or people that are really important to you about what your wishes all round where you want to be careful as you want to do. Except that i would really encourage you to do that. And we have some really good tolls. That can help you do that molin. We have an advanced care plan planning booklets on it. Gives you general information on how to talk about your preferences and your wishes with your family any legal issues so if you need to give power of attorney to anyone against the second tip would be that it would be really nice view to involve people that you care about in the practicalities so that you do things alone. If you haven't got will it's really nice to involve you'll family in that. Say that they know and also kind of think about the support services that you want to draw ronal would help your family and i guess finances is often the thing that people worry about and we do have a guide for end of life care but again has sections in around Getting financial help and also some information in that for you relatives on a guest. Lastly is really important to maintain contact with people on maintaining activity on. It's hard. it's hard at the moment with with restrictions but they're all ways to do things safely to still enjoy that human contact and get fresh air and undertake other activity. So was it's a really difficult time. Probably for you and your family. You know i would. I would absolutely stresses kind of those sorts of things are really important. Thank you so much for that day. Nisam really useful advice. That for more information about the topics adrian and i have talked about in this episode head to our website. Mcmillan dot org dot. uk forward slash talking cancer. There are lots of really helpful resources on there as well as details about where you can reach advice and support. Please use them. It's also where you can find out more about donating to macmillan now that takes us to the end of this series and the last six episodes of gone so quickly it's been so fantastic talking to so many different experts at mcmillan and boots to answer your questions. Remember you can still reach mcmillan on my support. Line seven days a week eight. Am to eight pm on oto eight. Eight hundred eight double zero double zero all reach out to a boots mcmillan information pharmacist. And you could do store online. If you've enjoyed the series. Please give us a rating overview and helps others defined. The full costs more easily. Thanks so much for listening. I'm a talking cancer is a macmillan. Cancer support cost.

mcmillan cancer Mullins corona talking cancer dany bell adrienne telus seven days tran stain amer macmillan adrian Betty millionnaire kassar harrah matt carrozza moore slash mcmillan delon
We're Talking Cancer

Talking Cancer

00:58 sec | 1 year ago

We're Talking Cancer

"I'm Abi and this is talking cancer. A new podcast for Matt Millen Cancer Support. Well I'll be meeting real people to have honest conversations about living with cancer. We'll hear some amazing people be very candid about their experiences of diagnosis treatment recovery and the end of life at the end of every episode also be grabbing coffee with a million professional share advice and information to help anyone living with or affected by cancer to find their best way through way. Mcmillan and we're talking cancer. Click subscribe now to get every episode. When they're ready on apple podcast spotify or wherever you get your podcast from a

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Coronavirus, work and cancer

Talking Cancer

20:53 min | 6 months ago

Coronavirus, work and cancer

"What are my rights at work during the pandemic? Hello, I'm Abby and Welcome to our coronavirus series of talking cancer a podcast remote Millen and Boots where I talked to experts to get the answers to the questions about Molina's hearing the most off today. We've got Liz Egan joining us again. And you might remember this from series one. She's McMillan's work in cancer expert and we'll help the answer some of the questions coming through to McMillan support line questions about like what your rights are at work. If you're living with cancer during coronavirus your employer needs to think, you know, creatively and you can think as an employee creatively about what sort of changes could be made to ask you to stay at work. So what to expect after the job retention scheme ends will employers they should talk to staff about plans to end for a low as early as possible and they need to encourage staff to raise any concerns. They have we'll also hear some top tips from Richard get in touch with the manager speak to him about how you think you can do your role in a slightly different way where McMillan and We're talking cancel. Lee's welcome back. It's so lovely to see you again as any other episodes we've recorded I'm going to time stamp this we're recording on the 9th of October 2020 and all the information we talked about is correct. As of today Now ladies we've spoken before about your rights at work if you're diagnosed with cancer and for anyone who would like to hear more about this, it's just it's really brilliant. I would really recommend going back to series one and listening to our work and cancer episode Soul is what's changed apart from everything for people living with cancer. Lung coronavirus is in the picture. Well, yes, absolutely. Everything has changed Emma as we know anybody who has a weakened immune system is at risk of being more seriously ill if they get coronavirus juice and some people with cancer may be at a higher risk of coronavirus as result. And so when you have cancer and you're also coping with with that and coping with work that can be Really difficult and can be even more worrying four people. So yes, so people's lives have changed very significantly because of the coronavirus. It's a super stressful time is near and it must be it must be really nice to people who were at one time told to Shield or that they were more vulnerable because they were having treatment and then to have to go back to work if their employees, you know, say well home phone for business now do people have to go back. I mean our people are obliged to go back to work if they don't feel safe to do so or do they have choices to keep working from home. Well, so I suppose the first thing to say is that the government affected its guidance on shielding in August of this year, which means shielding has now been paused so that means in practice you can go to work and if you cannot work from home as long as there's business is what they call covert safe now and it's important to note that this guidance is advisory. So what I would suggest, you know, the first step really is you should just first of all have a discussion wage Employer and agree your plan for returning to work. Now where you work is a question mark you know, so as I've said with the previous series, you know under the equality act which applies in England Scotland and Wales and the disability Discrimination Act which applies in Northern Ireland. Your employer has a legal obligation to make what we call reasonable adjustments to help.

cancer McMillan Liz Egan Millen Molina Lee Richard England Emma Northern Ireland Scotland Wales
Money worries and financial support

Talking Cancer

21:06 min | 5 months ago

Money worries and financial support

"Won't financial support is available for people living with cancer who are having money worries during the pandemic. Hello i'm abi and welcome to wa- corona virus series of talking cancer a podcast from macmillan and boots where i talk to the experts to get answers to the questions. Mcmillan is hearing the most today. I'm joined by. Eve burn head of campaigns and public affairs at macmillan cancer support to talk about the money worries people with cancer may be having during the pandemic the financial support available. It's really really important that people are tailored and personalized advice for their own. Set of circumstances will also hear some words of advice from ruth. I knew about a week because my hair richly come out and they were fantastic. They took me through all the guards. Get women melon and we're talking cancer. Eighth welcome lovely lovely to have you with us and thank you so much for joining us on the podcast series. Now i'm as in all the other episodes we've recorded. I'm gonna time stamp this. We're recording this over zoom on the sixth of november twenty twenty and all the information we talk about is correct at the time of recording so since all lost episode since the last ten minutes there have been some major changes to the government guidance so before we start delving into the financial impact of covid eve. Do you wanna give us just a brief update on what the latest guidance means for people living with cancer. Yes absolutely so we know. The prime minister is announced new restrictions to cover england. I think the big difference here is that previously over the past few months we've had local restrictions local areas. The difference now is that these are national so across the whole of the country and people are being advised to stay at home. Unless you can't do your job from home and you have to go to work unless it's for a medical appointment or central shopping. Everyone is being asked to stay at home and for people with cancer. The big difference here again is for those who have clinically extremely vulnerable. So these are the people who in the first lock down where the shielded group. Those people are now being asked to stay at home so apart from medical appointments or medical care an apart from exercise that being asked to stay at home. The big thing here is of course for work so even if people with cancer who are clinically extremely vulnerable and can't do that job from home. They're being asked not to go to work. And i know we'll be talking about some of the financial support available those people today. It's such a roller coaster for it really is but with people with cancer diagnosed as this is being turned from pillar to post with so many different concerns and worries is people with cancer in lots of different ways. One of those as you mentioned is obviously going to be financial tied up with. Were what other kinds of things that matt malin have been hearing about people's financial concerns during this time. Well as you would imagine. This is an incredibly anxious. Time for people with cancer and support line is getting lots and lots and calls from people about lots of things to do with coronavirus but also about money worries in in particular people who previously would have gone to. Their banks are now worries because they don't want to go too. Busy places will get on public transport or worried about how they can speak to someone about their financial worries. Were hearing calls from people who are concerned about being made redundant or the people were helping access benefits for the first time. So there's a lot of different situations affecting people in different ways at the moment and on mcmillan support line Is the to help. So has caused some short term financial difficulties for lots of people with cancer out there including those who had to miss out on work that you mentioned earlier in order to shield or care for someone shielding and people on furlough may perhaps have lost their jobs and now with the second lockdown all their special financial resources all support on offer for those people who are finding themselves in one of those situations during this ongoing nightmare pandemic. yes there is so the good news is that the fellow scheme has been extended until march twenty twenty one so we know that that support is available for those people who can't do that job because of the restrictions and they could be eligible thilo pay if they are not eligible for that on they are clinically extremely vulnerable than people could also be eligible for statutory sick. Pay as well and you mentioned a lot of the short term pressures penal facing maybe. They're out of work temporarily at the moment because of the restrictions and we know that there's a lot of support that banks put in place whether that be flexibilities around mortgage repayments so potentially by short-term three-month mortgage holidays or also a flexibilities with loan or credit card payments as while at this lots of different measures out there an more information is available on the financial conduct authorities website. I think the most important thing to remember is that the situation is different. For every body in its radi- radiation poll that people i get tailored and personalized advice for their own set of circumstances as it is so complicated isn't it. I mean i think from an emotional point of view. You know the big change. Knowing that furlough is extended till march. It must be a massive relief because one of the things that do so much anxiety is not being able to plan a not being able to look ahead. And that's you know that's that's at least a handful of months into the future that's going to help all the benefits that you've mentioned that are available. I is this the same process as before covert has. It changed slightly. What are the differences. So there's been lots of new and good things of happened with the benefit system because of corona virus so previously a person with cancer would have had to have gone to a job center. Maybe for a face to face assessment or face to face appointments. Because that's not safe anymore. People are now having assessments over the phone or not needing to travel into a job center to have that face to face assessment or appointment on people with concert telling us that is much much better for them because they It's more flexible. And if they're having treatment for example. Chemotherapy and that just too ill to travel somewhere. It's much much better for them to be able to pick up the phone and do the assessments that way or the Flexibilities the of happened because according coronavirus is around the type of medical evidence that's needed sometimes to help people with cancer complete the fire applications and again because of coronavirus because clinicians and doctors and nurses are so busy at the moment at this bit of a reduction in the type of medical evidence. It's needed to make it less onerous a process. There's been a reduction. That's very encouraging. Yes very encouraging. Any simplification of massive complicated situations always welcome. Also i think as well. It's important to say that many people with cancer the financial impact of the pandemic is in addition to or you know the the cost of cancer. The existed normal life as well. What the cost of cancer that people should be aware of and what kind of support for them. You're absolutely right. And i think one of the biggest thing that people with cancer tells about the financial cost of cancer is it so i won't expected no. No one expects for accounts diagnosis and certainly when they do get one. No one then expects for the additional costs. Come with that so that could be anything from needing to pay high heating bills because you feel the cold more because of your treatment or needing to pay for car hospital caulking angle transport to your treatment and your all your hospital appointments or indeed losing your income. Because you've had to give up work or you've had to take time off work to help you get through the treatment so the big combination of different factors here from loss of income but also additional costs was seeing because of coronavirus again. Those costs the becoming more exacerbated. People are now feeling unsafe to get on public transport so the taking taxis to their appointments instead all because then not going outside. They're at home all the time. So the heating bills are going off as well. So it's almost a double whammy of conseco's unkovic costs together you know. We know that the fellow's been extended we know that there are benefits available but these hidden financial casa cancer. You know they are obviously going to be west during the pandemic. You've mentioned public transport. Taxis are there specific grants for example that are available to cover those additional costs. That you've mentioned we do have a grand scheme that can help people with those one off kind of discretionary costs and if people do feel as though they need that extra help orrin emergency grant of support. Then i'd encourage them to get in touch with mcmillan and we can have that conversation so there are some charity schemes out there. We've got dedicated support line. So we've got a team of welfare advises. We've got a team of financial advisors and we've got team of energy advisors so whatever your financial worry whether that be keeping up the repayments on your mortgage or which benefit to access or indeed how to get the best energy deal. We've got the right people there to help people with those questions. I do say this in pretty much every cost. Because i know that there are one of the things that we've been highlighted during the pandemic. Is that not. Everybody has got a lovely new laptop and not everybody is tech. Savvy is confident you know on the internet and although there is this huge amount of information there it is really important to know this. You can pick up the phone to you is there. Are there are people you can talk to. That's absolutely right and we're hearing from people all the time saying you know. They missed the face to face contact from having someone to talk to so in the absence of that. The off support line is fully staffed. It's been seven days a week. I'd encourage anyone who's got a question about cancer. All who struggling with the pandemic to give us a coal to help answer questions and support people through this so similarly people in active cancer treatment or shielding we mentioned miss might be understandably reluctant or unable to go too busy places like banks to see countback financial support. So what's what's what are their options. That's right and of course. A lot of people are really worried at the moment about going out going too busy places. The good news here is that there's lots of online support available for people to do that by king so online banking mobile banking and even video banking f people to have video calls with that buying. So there's lots of solutions out there and alternatives to actually physically going into your bank branch an also lots of support from banks at the moment to help people with setting up online banking particularly for those elderly people at the moment who may not have online banquets before i used to going into that. Brian show speaking to someone face to face. The rededicated teams that banks providing at the moment to support people to set up accounts. My dad is in his eighties now. if he can't speak to somebody face to face just has a mild panicker every single tones. So that's good to know. There is a little dark side to the situation. Which i think many people have heard about Sadly have fallen victim to but there are scammers taking advantage of the pandemic situation when people are banking from home or doing a lot more online shopping. Generally what are the warning signs of the red flags that you should look out for. Yes said this is really sad. Consequence of more people banking online. Even though it's never been safe to bank online of course there are people that are trying to take advantage of the situation. So what we would say to to. Everyone listening is if anyone is asking for any personal banking details whether that be your pin code or or your bank account number all of the past no details that would be very very unusual and we would encourage anyone to not give those details out over the phone in any way to either up or or and nicole unter report at that bank It would be very very unusual for someone to ask details over the fines v. That is happening. It's really important that you report that to your bank and particularly from a people who are phoning gave so unsolicited phone calls from people who are either claiming to be your bank getting in touch all and we've even had situations from people who have had people claiming to be from the nhs getting in touch as well again if anyone is calling and asking for personal banking details over the phone. Don't give them to them. Hang up the phone and unreported. mto by dongo anywhere. We're going to be back with you shortly next. Then we have some words of wisdom from ruth who is sharing her advice and ideas on how to cope with money worries during the pandemic with the cancer diagnosis. My name's ray. I live in norfolk and stike master breast cancer in some twenty nine thousand nine hundred one. She get your diagnosis closely. Go hospital appointments. Which has car parking fees petrol fees and she might be stopping working. I asked mellon unit because my heritage literally come out and they were fantastic. They took me through all the guards. You can get then you can use that for. You'll wake seek news. It too old transports. The check is fantastic. Because the came out of hospit- heating and it was march so that one hundred pounds are able to talk which was just just the right. Timing always ask for help. If you see out in a so s people will really help how i have. People come back and said no. I'll joy if you have monday. l. joy. pfc fries a view. So i hit is asked christian seconds hip is is go to macmillan. Because they advice there was phenomenal. They can set you up. And they have financial advisers that sabet were ready to tell me if i stop questions about cancer macmillan. Your side from the moment to diagnosed through your treatment and beyond our debates mcmillan intimation pharmacists are on hand when specialist support from helping you make sense of your diagnosis to advice about living with cancer. You can find them in your local boots. Fomc online via video appointment visit bates dot com for slash mcmillan for more information subject to pharmacist. Availability some really useful. Tips from rue des. Now one of the wonderful reasons why matt millen is able to do this. Please wonderful things that you mentioned is because you work in partnership with a number financial organizations to support customers. He may be impacted financially following the concert diagnosis. What can these partnerships that you guys. I know works so hard to maintain and and to create. What can they offer for people living with cancer while we're really proud of all partnerships and particularly our partnerships with some of our biggest banking partners so for example the lloyd's banking group. This is a really fantastic partnership that helps us get help to people with cancer as soon as possible when they end to the bank so this is a dedicated team at lloyds banking group not to refer people with cancer to macmillan support line so as soon as they come in and show that they've had this considine gnosis all that struggling with whatever it may be whether that be debt all their mortgage all potentially losing their income the partners at lloyds banking greet notre refer than over to was and we can help them through it we've got partnerships as well for example with scottish widows and we know that people with khansa sometimes struggle to get their insurance paid out when they need to so again all brilliant macmillan nurses work with scottish widows to ensure that we can verify the claims and get that those insurance claims paid out was quickly as possible. Won't you've talked about that. From from lloyd as an incredible setup all that any other partnerships for those people listening who don't pops back with lloyd's yes. If you bank with the nationwide building society you can call and speak to the specialists support team and the service can help you if you've got money problems or if you're struggling to keep your mortgage loan or credit card repayment and similarly if you've got a bank account a mentioned lloyd's but also how the fact some bank scotland you can speak to that dedicated cancer support team and ellen show that they can help you with whatever questions that you've got an all of the numbers and all the details of operating partnerships are on the financial support and corona virus page of our website. They're always through this. Just you know. Just make sure that you pick up the phone and speak to somebody. That's me. I love that partnership with lloyd's it's just it's so banks can be scary the best of times but with a cancer diagnosis and going through what we're going through at the moment. It's an absolute lifeline. To know about that partnership that there's a lot of information and and i guess for some people listening it's all good information but it might be quite nerve wrecking about. If you've just been recently diagnosed where do you start And if you have been affected financially how do you. How do you start doing that. How'd you start organizing and planning your finances during this time. What's your best advice. 'have course and it's such a anxious time for people with cancer when they get that diagnosis a million things going through people's minds whether that a tweet men all work or where to start so i'd encourage anyone who's listening to take the time to know that mcmillan's there but also to know that there's lots of steps that they they can take so You could start. I completely budgets. Really having a good understanding of what's coming in Money wise but also. What's going out that would put you in a radi. Good position to start having those conversations whether that be with your buying coal with macmillan to help you understand what type of support is out there you could check your insurance and what insurance protections that you've got of course you can contact your bank. Can i'd encourage everyone to do that as well as soon as possible to ensure that they understand that. You've got this diagnosis. And that could start to have an effect on your income on your finances. Pensions under the ready. Good one to start having a think about a soon as you can. On of course completing i will no one likes to talk about completing a will and it's one of the most difficult things as part of a cancer journey. We know that a lot of people say it's a big weight. Lifted off their mind if they know that they've gone through that. And that's all up to date and mcmillan-scott dedicated guide. It's on our website to help people right. There will and know that everything's going to be taken care of if they need it to be as always so full of information helpful support and advice. Thanks so much for joining us this week. Thank you for having me for more information about the areas. Even i have talked about in the episode head to our website. Mcmillan dot org dot. Uk forward slash talking cancer for resources advice and support. And it's also where you can find out more about donating to macmillan join us next time for a final episode of the series account. Believe it were the end token kansas series to already subscribe. If you'd like to hear that an every new episode whenever it's ready and if you enjoy the series please give us a writing or review because it helps others to find the cost more easily. I'm emma bay talking cancer is a macmillan. Cancer support podcast.

cancer mcmillan macmillan cancer matt malin unkovic ruth Mcmillan ten minutes three-month nicole unter zoom conseco dongo one hundred pounds sabet england lloyd bates dot rue des seven days
Life After Cancer

Talking Cancer

31:55 min | 1 year ago

Life After Cancer

"What does life cancer look like? Hello I'm Abi. And welcome to talking cancer a podcast for Macmillan. Well I'll be meeting real people to have honest conversations about living with cancer in this episode. We're talking cancer with errol had it not been for. My wife are probably wouldn't be sitting here today. Having this conversation ten years ago errol McCullough went to his. Gp To do something about his snoring. He picked up a leaflet about prostate cancer while he was waiting and it was a decision that would change his life. They said to me Mr Michaela. I'm afraid to say your prostate is covered in cancer. When I sat in my car and I'm not trying to say just burst into tears errol had his prostate removed. And he's now being in remission for ten years he's made it his life's work to educate men like him. Look I'll give you twenty percent discount. If you're GONNA get your prostate checked. Two weeks later. When he came to pick up his car he was waving if piece of paper and he had twenty five percent cancer. Prostate is very funny. He's driven but he's also incredibly open about living with the side effects of having his prostate removed. Plus later Dany on McMillan professional is giving us some practical advice about life after cancer but cancer nurse specialists will would much prefer somebody just ringing and checking and more often lot. They can relieve anxiety over the phone. Women Melon and we're talking cancer Welcome it's lovely to have you here with us. We've spent maybe two minutes together but I'm kind of getting the lay of the land with you. Big Personality extremely driven. Will you always like that before your diagnosis? I've been driven a think since I've had this prostate tissue. I'm actually in the Fast Lane Nassar. Yes I'm much more driven. What was life like for you before the diagnosis? What were you doing well? Qualified mechanic an MIT tester. So I used to run a Gary H in eastern London and part time for all coach at Leyton Orient Football Club. He just throw the football thing away but we know there was more to it than that for those people. Who Don't know very much about you. You have coached them. Names we would know Yeah Yeah I've been very privileged in my football life right to work with the young. David Beckham Ashley. Call Sol Campbell. Liba Jermain Defoe but everyone I've worked with is on an equal par for me when it comes to football. I mean I was just very fortunate to work with some very very good youngsters who have grown up to be complementary adults as well then the the in your line of work on both levels so be you know working in the garbage doing. Mit's and you made this analogy perfectly yourself and then working with young talent you got quite good ears and eyes to to pick things up. Did you pick up anything about your prostate situation before you went to the doctors? Do not so interesting. You say that because had it not been for my wife. I probably wouldn't be sitting here today having this conversation because I only found out about my issues because my wife was complaining about me. Snoring in my sleep ascension should and this is a lesson to all men right when these lady start nagging. Please listen because is painful. If he don't okay to be very clear to be very clear snoring is not one of the symptoms of prostate cancer. So so you went to the doctor to talk about your snoring and nothing else exactly. I went to the doctor because so the nagging at that. My wife didn't quite say I just said the Milwaukee disappointments. I'm here I hadn't you know when you're sitting in the reception room waiting to see the doctor. You know that can be a little while so need to find somebody to occupy your time and I picked up the leaflet purely by accident to this day. I still don't know why picks it up picks it up. Read the leaflet. There was things in that leaflet. The author all this could be something to do with some things that's going on in my life like what getting up three or four times a night to go to the toilet. I'm having lower back. Pain lower abdominal pains. And I thought well you know. By the way they're describing. It's a simple blood tests so I thought. Let me go make an appointment. I wasn't planning on doing anything there. And then I thought if I spoke to the reception lady and She was happy to talk to combat than I would. Come back and but the shock for me was when. I approached her she she turned to me Mr McKenna. You don't need to make an appointment. This is a simple blood test that takes less than ten minutes. You know we can do it now for. Okay let's do it and so none of those situations that you hear so much about about if you want to go and see your doctor. You need to wait. It's impossible to get an appointment. You have to wait months and this is something that can be done by one of the practice nurses quickly I have learned since my journey with prostate cancer. That discount sometimes. We are difficult appointment to get but my messages be persistent and get it done. Can I ask you a question? How old are you now? I'd like to say twenty one but I'm not GonNa get away with that when I look at. That's the idea. Yeah yeah unfortunately. I'm looking sixty two and someday feels sixty two. I'm I'm just wondering as well because you know if you're an active person and you know the the boys amongst us hate going to the dogs anyway and we'll talk more about that but you know some of those symptoms that you described. I just put things down to always as I'm getting older. It was that part of your thinking. You know what you've spot on because everybody. I've spoken to has a classic excuse for every symptom that I mean in my job as a mechanic a here in There was a a delight came up on the dashboard of the car and I ignored it as for. This is very similar to what we do has been particularly as men. What did you expect to hear back as well art? Expect to hear anything else back. But what sort of started alarm bells ringing this week. After that first blood test got called back to do a second one and I also questioned in. The doctor said to me. Now this is just you know routine check. We just want to follow up on what we've done. Okay but then the whole thing to start to sort of escalate in a very rapidly. You know after that second blood test. I'll go phone call. Could you come into biopsy and allow US remember the conversation I said to Dr? So when do you want me to do as well? We've made the appointment feed this morning. And which is quite interesting. Because I'm I put the phone down and I find my wife and said look after phone call from the. They won't meet to come in and do a biopsy and she said to me. When did they want to do that? And I said well. They want to do that today this morning so she turned to me and she said okay. Don't worry if you get a cab to the hospital. I'll meet you at the hospital and just before I put the phone down. An attorney said Oh your body. What's a biopsy? Well who's to say? What point did anybody start talking about? Psa's which you have to explain for and and possible prostate cancer. None didn't have a conversation about any of it until apart from what I read and as the journey went on then I start to get more bits and pieces of the conversation but I still didn't understand the graphics of what it meant. How serious a problem it was. I supposed to say that. You must've been shocked as a massive understatement. Yes because I had a biopsy and that that went. That wasn't very pleasant but it's something that we have to do. I almost immediately after the biopsy then they called me into skin and then things start to unfold. You know because off the scan they called me and my wife in size both down and said to me Mr Michaela I'm afraid to say that your prostate is covered in cancer. Well I'll go up on a walked out of the room because I it. I didn't actually think he was talking to me at the time. came out the building a went and I sat in my car and to this day. I don't know whether I was scared. Frightened DOLE above freely. You know and I'm not trying to save it. I'd just burst into tears. I don't know how else you deal with that kind of news. Because it wasn't a tiny little bit of cancer either was. It was quite serious and in that car. Crime is and and this is why I always encourage mental. Listen to their partners and for mental. Listen to the women in life because you know my wife came in and she sat in the car with men and she looked at me and she said look old years I've been with. You're never seen you quit on anything that you've ever done and they're quite powerful words when you open your eyes out because I stopped crying immediately and I looked and I thought is this her way of motivating because if it is then I need to take it and together we go up and we went back in spite to the doctor said right talk to what do I need to do to deal with. This program said the treatment that you had has has been successful yet. Was that treatment and whether any side effects for you well. The situation for me was When I spoke to the doctor he said look in. If we don't remove your prostate you could be dead in six months so I said okay. Let's let let let's do it. And he said well you know there will be some issues you have to to deal with. They'll be some side effects that you have to come to turn with but you know had your peration agreed to have the operation because there was no point in me trying to save the little piece that was left but after the operation There were still traces of cancer in in and around the area so I had to have navy three months of radiotherapy to burn away the rest of the cancer issues and that was difficult. That was probably the the that was the most because it makes you feel terrible. Yeah I mean it drained me physically and it drained me mentally which was a difficult part to deal with. I'm sure I and you know especially when you've you've you go from being so active so busy to having to you know to sit still and feel terrible. I mean on top of that I mean I was out of work for six months. The body's not used to sort of sit instill for one day let alone. Nearly six months talks about finding out. You're in remission. The light at the end of the tunnel. Well I think the end of the tunnel for me was when I went back to work and a gentleman came into my garage. And we go into compensation and to this day. I still don't know why asked them the question I asked him. I just looked at what was the last time you had your prostate checked. And he looked at me quite short talk about the indicators happy you know he turned to many said. What the BLEEP BLEEP BLEEP GEARBOX? Not Working on my car and while you say that you're able working and then and then on top of that. I turned to him and I said Look Attila are give you twenty percent discount on the work. I'm going to do it in your car. If you get your prostate check. Well I clearly didn't think I said didn't think it fruit because two weeks later when he came to pick up these car he was waving his a piece of paper and he turned to me and he said look he said. I took your advice and did that. Test and to this day I think he must have realized why because I looked up in the sky and looked at him and I thought crisis is just cost me two hundred so so but you know. He turned to me and he said. I don't want you to give the money back right. I want to donate to charity. But he said you need to read this letter. When I looked at the letter that he had he had twenty five percent cancer. And he's prostate. Oh my you are kidding me. But he was the first of forty eight guys that walked into my Garrett was diagnosed with prostate cancer of which two are no longer here. I am so journey. My journey for me you know and dealing with prostate cancer is by talking about every day. Yeah and I decided to set up the mckellar foundation to get mental can and the reason why did that was you know by one hundred of my lady customers in mcgarry and said goals. When when's the last time you went to see a doctor in a year and eighty nine out of the hundred doctors I also same question to my male customers and one and what was frightening about him is not only wind because his wife was moaning. Amy Said and she's decided she's not going to give him any more sex until he gets himself. Checked out Larry's smart journey now to raise this awareness and that's how I've had to deal with the bits and pieces that goes on with it and that and this is I suppose. Lots of people talk about their new normal. Your Journey Newell. The projects that you have in the foundation. The talking that you do is is that the new normal for us this errol now. I think it's just amplifying the stuff of done before but it has to be very direct because not helping people to pursue a career. I'm hopefully helping to save lives and you know and and I can't do that on my own. It's great people like yourselves. The fantastic support I get from my wife Sharon and also family and friends because I found out about prostate cancer by accident while I say to people now is is reading lots and lots of reading to find that because so many different different conflicting things that people talk about. But the most important thing I've learned from the reading I've done is. The numbers are very very high and getting higher one. In eight European men get prostate cancer. One in four effort cabin men get prostate cancer. It's important to talk. This is important to talk it out also as well. Can you explain what? Psa stands right. Psa stands for prostate specific antigen. So that is what is produced inside the prostate in order for you to help with your reproduction and exciting things that men have and dream about so yes so the. Psa We know. And that's the count and that's how they measure whether or not there is something going wrong. This is a simple blood tests and it's important that all men make a point of getting himself tested whether the doctors happy to do or no insist on getting it done because this is something if you try and catch early. You're more likely to stay alive with it. Do you think that what's the work that you're doing in and around prostate cancer in Bringing bringing the discussion to the table getting people to talk more about it has been helpful to you in dealing with the experience that you went through personally often. I think the help has been absolutely massive and I didn't realize how big an issue this was until I started to be involved in and you know and why it's important to talk is because I'm what I've learned from talking. Is that if it's in your family. Then it's very important that the generations know about issues because my dad. When I had the conversation with my dad when I was diagnosed a turnaround to mainly suggests on. I had that issue five years ago. Oh my goodness mainly reaction. Oh my goodness May. That was angry. Upset couldn't speak to him for nearly six months. I'm sure that. What have you come to any conclusions throughout this about why men aren't very good seeking help or being aware of their bodies? Yeah Yeah I have two issues with that. The problem with men as opposed to women is that we suffer with two things ignorance and silence. You know so if we have this issue. We go into denial. We find every excuse to accept that it's not happening and then on top of that we completely shut down. We just go into silence. Women I mean you know. Women are very very good at snagging. Whatever time or do you WANNA put it. You know when they have something wrong for me as a mechanic. If they got problem with their cars they come in straightaway with men we wait. The car breaks down but it is interesting. Isn't it nothing women as well? We can. Because we whether that's to do with puberty and starting periods right through to pregnancy. I think we're much more used to our bodies changing. There's a lot more. We talk about a lot more I am more proactive. But but this is. What you've been doing is made such a huge and significant difference. This is not gone unnoticed. Has IT I hope you hope our can make a difference but I always used the word we because one person's not going to make this change. I know you say way. There was only one and h s hero. Would do I rec- when I when. I told me that they were GonNa give me this award. As I said to them. I will only accepts award. On behalf of all the people at the going through the battles with prostate cancer older people that we've lost fruit issue and for me really. I wouldn't have accepted of the not because I felt that I was taking it on behalf of all the people that are involved in this campaign as well so it's People's award for me more than his personal. I'M GONNA come back to you personally just for a second. Because there's this this is amazing. Work that you do this fantastic foundation. Clearly this work is helping you. Arrow and looking forward into the future. When you were going through that who did you look to for Support? Was THAT FAMILY FRIENDS. Was there any outside? Organizations will else's out there for for for young men in your situation fortunate people at the melon prostate cancer UK but it's forums forums more and more foreign online forums. Yeah see that's a really common thread that we're to WIG IT and you know. Actually there's a lot of very valuable support you get from other people in the same situation. Your in House mustering came from my wife and family. They realized a long time ago that they were happy to share me with everyone so I wouldn't couldn't and wouldn't have got fru. I've got to now without that help and that network and the treatment that you had has there been any lasting impact on you and your health. Yes there has been lasting impact. My situation is that You know I have probably less than twenty percent. Feeling BELOW MY BELLY BUTTON. Erectile function is probably non existent. Okay right but what? I've learned through modern with this. Is that some people will get a lot more than that. It's how you manage what you have. I mean and housed on a day to day basis. I mean you know. That's you love. Your wife is that that's complicated and difficult. If it only difficult if you sit down and and decide to do nothing about it I may not be. What call you same boat. I can still be Mo Farah because that makes sense so you have to you have to improvise the best way possible. But you can't beat you. You know what you have to do is and that's comes to. Why South the charity I say is because by talking drought? You realize that you're not the only one going through this challenge you know and somebody you know a lot of times. People say things to me that our massive help you know so. I'm learning every day to do and I think he's well particularly with with prostate cancer. An with men and they're reticent to talk about talk about things that there are. I'm sure all lots of lots of medicine. Lots of concerns about. What makes you a man that may be gets in the way of of of of going to the doctor and do does that make sense a great great question and I'm glad to have asked the question because a lot of men told me that raw not go through this because if it means they're gonNA lose erection then more issues with continents? And what would you say to those because it is real? That's a real concern. I've had the question and what I have said very frequently is look if you have a chance of being alive and maybe helping somebody. It could be your children. Your grandchildren isn't that more important. Do you ever worry about it coming back. I do worry about coming back. I don't have a prostate now. So you know if the cancer comes back it would be probably more aggressive somewhere else but my challenges is to save somebody from having to go through the battles the ave to go for every day. That's more challenge so I try to be positive and give give the love to other people. You're a magnificent human being. It's been an absolute pleasure to speak to you. I will thank you so very much. Thank you Dany Bell McMillan Professional. Hello Lovely Lady. It is great to have you back again. What an inspiration errol is. Would you make of his story? Oh absolutely an inspiration. I think For men they're not great at talking of a now. We talked to him about life after cancer. Can you please explain remission versus cancer free? Okay so they are very different things But unfortunately sometimes professionals or public perception intertwine them so when somebody is in remission and you can be impartial remission or complete remission And it's really that remission is really that the Kansas not active partial remission is where maybe you've still got some cancer cells but they're not causing you any problems and complete obviously is the Kansas being held at bay or clear. Tends to come when you've been in remission for period of five years with no active cancer and then your condition may be enough to say you are all clear at that point so it's really important to understand that during this remission period from the moment that you'll cancer treatment stops through those partial remission to clear what are the kind of what does recovery look like You've had this incredible trauma the treatment. Whatever that has looked like for you individually What can period then begin to look like so? It is very different for different people. And we've talked about this. Before different types of cancer and different treatments have different impacts so that makes it very individual but there are common things that people struggle with energy I'm fatigue is a is a big one And that can take some while to actually recede but some people struggle with it long-term anyway. Some people have problems with pain as a result of treatment and unfortunately some people will have long term problems With pain just because of the impact of the type of treatment. They've had on their body. And and pain fatigue can be quite intertwined and then unfortunately have a knock-on effect on your emotional wellbeing. Well I was I was GONNA say because they will talk quite quite openly about the effect that his cancer had On his sex life. How do you maintain your emotional health as well through this other places to go? Is it an again something that you should you should talk about when you go back to see your? Gp OVER YOUR CHECKUPS. I think GPA is a really good starting point. Sometimes people aren't necessarily comfortable with talking openly about things that they find embarrassing would prefer to talk to the GP about two and GP's are Used to talking to people and helping people that have like arrowhead erectile dysfunction after Treatment so certain types of cancer treatment have a physical impact on how your kind of sexual activity happens but also some people have has psychological impact on their body image and so there are lots of different reasons. Why my impact on your sexual health and your sex life which actually has a massive emotional impact and there's there's all the people say that GP can refer counseling you join groups where people who've experienced the same thing and learn how they've overcome some people find that very helpful to once you're in remission you own sort of send out into the big world and let go there will be checkups. What does what what do they look like is that is that a visit to the GP say how you feeling a return to the oncologist for Something a little bit more invasive so that's a really good question because historically people always went back to the hospital for a clinic appointment and then they would have their surveillance tests but things have changed and we recognize that actually for some cancers particularly Kansas that very low risk. Gp's manage and monitor them and so you may just go and have a blood test regularly and the GP let you know the result of that and actually we even have electronic systems now where I can actually look up their own blood results. And there's lots of information that goes alongside that so they know how to interpret them so PSA which is our talks about is one of those where they're in some areas. They have a remote surveillance system that patients themselves have access to for other people is going back to see the specialist on every sort of You'll find it will be three to six monthly the first year and then actually wants your kind of two years with stable disease. You'll have an annual check. So you know the the longer you're in remission so to speak that the less frequently you go but you will always have an annual surveillance tests and that can be a scan a blood test or both whatever is needed all just absolutely overflowing with positively such great guy to be around but he he he has worries that it might come back at so. There are emotional scars that it leaves as well. I think that's what we highlighted is a very common problem and you'll often hear people say once you've had you always have cancer even when you don't have active disease because it's always in the back of your mind and You know when a scan or an appointment coming up people will get more anxious than normal and and that's understandable in reality. You know that fear of the cancer coming back is very genuine and people need to find their own ways of of dealing with that for some people it might leave hypersensitive to any ailment. That might be you know a around Wendy you. When do you know whether it's something serious that you know? It's not just it's not just a cold. It's something you need to go and get checked out as a hard question. No no no but actually There are indications when you've had a particular cancer what the likely recurrent symptoms will be I'm people should be informed of those by their specialists team and the GP should be aware of those as well so You can be more vigilant about those and of course obviously if you have something persists for three to six weeks then you shouldn't hang around really it's always best to get it. Checked out was most. Mina almonds will recede within that time. And it's just you know so if you have a back ache because you've heard you back it shouldn't last for a protracted period Unless you've done some damage but then you would need to seek help anyway but so You know so if you have a back ache and you have had cancer where Secondary Bone cancer risk. Then you should know that if if that back pain persists you should go and seek help. So he should be given information so that you could monitor but equally put get very anxious about every ache or pain A maurienne someday. There are lots of telephone support services now so even the specialist teams the cancer nurse specialists would much prefer somebody just ringing and checking and mortar. Not they can relieve anxiety over the phone. Finally Dany if you're a friend or a relative of someone who was recently in Remission. They can still offer support if there's somebody listening. What's your advice to friends and family? I think I think the biggest advice as to carry on Life with that person you might need to make some adjustments if they're fatigued but tight make big delivered be understanding and still do the things that you enjoy doing together equally some people with cancer CEO. No one more talk about it. You know and I'm struggling with all this. I look okay. It's okay to ask people if they're all you. Okay today you know. Is Everything all right so An most of is normal behavior. So don't be afraid to have the normal conversations that you would you would have and do do the normal things that you like doing with your friend or your family member. Danie thank you so very much and my thanks to Arrow for coming in to tell a story to get more information about what we've talked about in this episode go to our website. Mcmillan DOT ORG dot. Uk forward slash talking cancer. Next time we're talking about dealing with the end of someone's life with Max we're sitting Rhonda hostile bed in Coventry are then one of the start cry and immediately do the same thing that lows Boudin. Sorry Straightway I think as my daddy said no it's gonna be rubbish is so we cry together. Subscribe if he'd like to hear that and every new episode whenever it's ready and if you enjoy the series why not give it a rating or a review? It helps other spun the podcast more easily. I'm an obey talking. Cancer is a cancer support podcast.

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Treatment

Talking Cancer

45:00 min | 1 year ago

Treatment

"So what does treatment for cancer actually entail? Hello I'm Moab and welcome to talking cancer a podcast from Macmillan. Well I'll be meeting real people to have honest. Conversations about living with cancer also be meeting McMillan professionals who will be sharing advice and information to help anyone living with or -ffected by cancer to find their best way through in this episode. We're talking cancer with Ben. There was a nurse that came over to me introduce expecting along things on a look down a name Badge and seven Macmillan on it without my God things to start really really real really quickly. Two days after his fortieth birthday benzedrine was told he had cancer of the esophagus. The tube that connects your mouth to your stomach and for someone who loved his food like Ben. It was a devastating blow. We all eat together and I was suddenly taken away from not everybody else would be finishing and it would really highlight to me. I'm not well and I'm not normal anymore. Physically Ben who is a nurse himself is now on Chemo. At the end of which he's going to have surgery to rebuild part of his esophagus. You don't really realize how many chemotherapies the row out there. You just presume. It's like a Paracetemol. We talked about the INS and outs of his treatment. The information he received beforehand and we talked about living with cancer and all the things that keep him going like cooking and baking and later Dany one million professionals is joining me to talk about the treatments available when cancer is diagnosed is mind boggling but they are fairly standard treatment regimes for different types of cancer. Women Millan and we're talking cancer Ben Welcome. It's lovely to have you here very well. Thank you Ryan Sparkley. How are you today very good? I'm halfway through Chemo. And I'm about two weeks since last summer so at the moment I pretty much side effect free. Which is nice. It is nice. I slick sparkly healthy and that's great. Thank you for coming. We're going to talk a lot about your cancer treatment Shortly complex and super interesting and specific to you and I wanNA know all about that I it would be really lovely to try and get a picture of you before November last year. So you've just reminded me your forty and you were just turning forty weren't you? Yes so When I got my I guess. My first preliminary diagnosis. It was deer two days. Atma fortieth birthday through the twenty first of November then got my formal diagnoses fight the thirteenth. Thirteen kidding me. Really IT WAS. That was the of carved in Stone Day just turned forty. You kind of expect you to to be a bit life changing and you get into a positive things so it was. It was weird. It was a weird concept. Just suddenly finding out. You've got concert who days after you fought in the run-up to that a year. What was what was life like for you. What kind of a person where so I would consider myself quite healthy person. I'm relatively active. Have a dog that I walk every day and I'm really involved in Yoga. Do Yoga Retreats Healthy Diet healthy weight. DidN'T SMOKE DIDN'T DRINK TO EXCESS? I basically didn't take any of the boxes related to US. Offered you'll cancer so I was really looking. Gp said let's send you some tests you probably won't you probably wouldn't have cancer. Beat the possibility that anybody in your family The had worried you had anything like this ever crossed your mind. No nothing no emily. History of cancer. No family history for software. He'll come sir. I think one of the main causes of of salvager countries acid reflux too. I don't have any reflex either but my brother does. And he's on medication for that so I I was always seems to make sure you take image. Makes you take your meds because the OSCE can cancer cells. Ironically needs no more about your case. Where did you love baking? Come from so. I've always loved cooking because we go. Just Manteris is here today together. Yes so as a kid at always be brought into the kitchen. They would let me help the in the cooking and a more of a savory coke so I do lots of them like breads main meals. I thought actually I'M GONNA try and branch out a little bit and do something a bit sweeter so it's not come naturally but I really enjoy is really good about myself. Stunned Mixer. There's no sending back. What color is it? She's black block and Sparkley. She's called Sinead. I'm really envious of your Mexico. Should I really must meet it. So we've got we've got a healthy active food loving fairly happy man definitely a hurtling towards the fortieth birthday and you get A little sort of rumbling. Something's not right. What at what point did you know that things weren't quite right so I just moved house and with the surface rounded by Boxes Hunt. Set the dining room table up and all of a sudden. Just thought you know what? I'm finding foods quite difficult to swallow but put it down. To the fact that was rushing Mahfoud down because needs to empty boxes tidy rooms hoover and surfer in a position that I guess he's not conducive to healthy eating. I suppose you hunched over. But he continued and it got worse and I thought you know what I'm going to to doctors because painful. I just difficult to swallow the only way I could describe. It was if you've got a really dry beget the take a massive by outfit and it kind of gets stuck in your throat just how to swallow. It was not it all the time and I just thought actually this isn't right. I need to explore this with my. Gpa Bit Mars. That's what did it. Maybe my point with. Gp was it a case of when you were there struggling to find the words to describe it did he. Did he understand he or she understand? Immediately what you were trying to tell them he was asking me different things. Have you been to a lot of stress recently? Had well have display with my partner of just moved house and I've got a new job all all within three weeks of each of the address. Yeah and he was like it will probably be the book. I'm going to instead of sending me away insane. Combine two weeks come back in a month. He's coming to send you for an endoscopy Indus. Get that checked out because I'm not happy with it and I'm so pleased. I'm so look at aided straight away. How long did you have the white between him saying that going? He said you'll probably get an appointment within two weeks within two weeks at Hud. My appointment at Hudson dos copy at biopsies taken a preliminary diagnosis of. We think you've got cancer but we're not to shelve until we get the biopsies back I'd been referred to Macmillan at Maitland millionnaires and I'd been referred to my Dietitian all within two weeks. It was like a whirlwind. It was and in one sense obviously. That's absolutely brilliant. And the way it should be in another sense coping with the enormous amount of information such a short space of time. So you leave you went to the GP on your own. Didn't tell anybody I was going because I didn't think it would be anything and I didn't want to worry. People went mendacity all by myself. And one of my really good friends actually works hospital and she was like up to when you finished your you department. Allah finished works media. Just remember walking up to a she was in the corridors and she said how are things things okay isn't it. I said I think about cancer. I said what do you mean what comes to so the doctors just said. I think you've got come so so you go to have you endoscopy. Did somebody mentioned the cancer word off immediately. After that after I was due on the bed what had been laying having my band occupy. Kim. A SETUP WPS my mouth because you've obviously come down your throat. Dribble everywhere CPR uncomfortable. Yeah and the guy that the doctor went over to the computer hardware look at the images taken came back said these biopsies. I was really interested. Being a nurse. Wants to have a look at the little bits of this growth that taken away and then he said I believe if concer those words ring in your head probably for the rest of my life so yeah it was. It was it was. It was a shock. Can you remember much? After that word of that day it was all a blur so after you get put into recovery for a couple of hours to make sure you're okay you're on your own at this point and I'm by myself. Yeah in this recovery Bay and I remember there was a nurse that came over to me and she explained that she was the specialist per genus. And sat down with me and spoke to me for it is and then I remember. She was expecting a lot of things on a look down a name Badge and seven Macmillan on it and I thought Oh my God things have really really real really quickly and until I saw the words McMillan nece it was just a blur. It wasn't real rarely that really hit her. Because obviously you know my gosh. I've got cancer. So who'd you call? Who did he go into? You bumped into your friend at this point. Have you spoken to anybody so one day? I didn't in fact I was actually out by evening with rugby so met with another friend and said of not told anybody but I just need to know. I think I've got come and you make a list of people that you need to tell a Melissa Person I like it written to next question what do you do. How do you then handle this situation? You would expect you would write down everybody's name and take people's names off as you get them and you tell the important people. I work your way down the list and it wasn't like the all you kind of work. How when you seen people so much? Leo told some people before I would wanNA tell other people but you want to tell the important people in your life face to face rather than a phone. Call 'em so yeah. I told my parents the next day I went to go visit them. Just make out that. It's coming down to visit high. You Work here and then guys I've got some things you need to talk to you about and it all got very serious already quickly either. That's really that was that must have been what kind of information about So tell so tell us what explained to me what you have them at that point. Won't you have been diagnosed with so I was told the I had come say in my Asaf. Agha's thought growths. They said we think you've got some years off against uncomfortable. Needs to make as well the initial information that I got you then sent for a couple of scans later when I was sent. Ct Scan a nice it. Actually you haven't got to grow. You've actually got one growth. Which was relief can show. It's in the base of my asaf ago. Which is where you started right. So it's in that kind of I dip underneath your ribs here. You're you're where you're soft meets. Your stomach writes it grown into my stomach. Thought they thought got to the fired. What he must have mcwilliam s office actually turned out to be would love that grown around and then after another scan which is called a pet scan they could see that it was actually my lymph nodes as well. I was told that didn't know whether I thought it'd be stage. Three arrested for the three means they can treat it with chemotherapy and then get rid of with surgery stage Faris. They can't get rid of it with surgery and they can treat with what they call policy of chemotherapy. Where is it aims to hold in place and shrink it am and hopefully stop it from growing? But it's time limited and becomes the I've got is the people mainly diagnosed with that a man in the sixty seventies and eighties. So there I guess. They don't have great outcomes because of not they've not got youth on the side and some that don't have health from the side and so the information that you're giving is not based on my category. They're like twenty thirty years older than myself. So yes it's difficult. It's difficult to know the right information to believe. Not believe that information for me really. It was a completely different context completely So when you when you end up having that conversation with mom and dad which must have been really hard for them as well obviously and view how much about how they wanted to treat it. Were you able to tell them at that point all I could tell them walls the doctor things. I've got cancer. And then as soon as you say that then wanted to back you up with loads of positives to try and stop them from worrying so much so as I come from a good age. I'm healthy if I'm taking all the boxes that you would want to take if you had cancer basically but then my parents being the having living people that they are wanted to be involved as much as possible so from then on. My mom came with me to every single appointment. She's driven me to hospital. She's hey with me today in. London says dishes so she's got involved. She wanted me to move in with them. I've got a dog who sometimes I can't walk because of the chemotherapy the Amazon and the side effects got the looked after the dog. So they've got involved wholeheartedly. Really did you feel as well? I mean it's something that's kind of coming through. It's quite common taking somebody with you. Indifferent pair of ears really helps to to properly understand what's being said exactly some of whom turns up. She's got little notepad that she writes. She writes down in the Middle Pad and then with the departments that have had you have the appointment with the doctor and also you McMillan. Nason there as well. The the doctors doctor talk she kind of understand but not everything. Then go to another room with Melanin. Andy McMillan nist gives to in Layman's terms makes it more digestible already. Bite size and then minimum our notebook and says this in Comanche about Mason. What could this mean another last year? It's good to have somebody else there. I mean you know this. This is the thing though. Isn't it a New York you know you're used to these environments your the new vocabulary that comes pouring out when you had your first meeting with your oncologist? That was to confirm your diagnosis and to start talking about how they wanted to treat it. Yes so what was said at that first meeting about how they hoped to treat it so by that point at. Hutt my foam diagnosis. So I knew there are definitely cancer and the meteorologist. He basically just explained the type of Kmart. Beyond and what that chemotherapy medication consisted of. And what side effects had probably encounter is just a barrage of information. And it's it's funny until you either have. Cancer are some media? Family has cancer. Are you work in an environment or company that million the involved in cancer? You don't really realize how many chemotherapies the out there you just presume. It's like that's a mall. Everybody has chemotherapy. How did you find out that there were different forms chemotherapy? We told or was it something that you observed found out a thing. Yeah just research online really and also when you go and chemotherapy you in obey with a number of the of the people and above them is a whiteboard with their name and what chemotherapy that on and you look around and nobody is on the same thing and he was like. Oh my gosh. There were so many different types obviously because it needs to be specific to the person and specific to the cancer. You just don't realize it is so I open is yeah. I didn't know that either I did. You know you just wouldn't know exactly so is so eye opening and is partly consideration of the treatment. The you know the kind of person that you are obviously age. What you do you know can we? Can You keep working? Can you know keep working? Are you moving around because tell me tell us then about the treatment that that you eventually agreed on view? The chemotherapy that I'm on is called Flt L. O. F. Teams Ninety for that type of sorry and basically it's an acronym. Epilepsy is mid perform different medications. And I get every two weeks for two days and I have a four times. So it's a period of eight weeks 'em and basically going to hospital on day one and have three medications and then because the chemotherapy that I'm on I come home with off which is in a pump. Which is we expect it to be full of cogs and battery operated or plugged in. But he's just looks like a baby's bottle okay. There's a balloon inside of it yet fully medication and basically the balloon slowly. I guess deflate and push easy medication now. So how was it administered to you? So I've got a pick line in which is basically a Catheter. Straightens in my vein. Okay which is there the whole time. Okay and I'm just so it's just above my elbow a bit. Different to be higher than you would hubbard taken from. And yes. He basically carrying around this baby's bottle full of chemotherapy for twenty four hours and then a district. Eskom's detaches you pump takes off and then you wait two weeks the next law. It's amazing being able to have your medication at home in your own environment around loved ones not in the clinical environment in a clinical environment. It's amazing how far it's on at night. I guess you know the comfort of your own home with the support of loved ones around. You is is is priceless as absentee prices. I'm sure but also. How quickly are you feeling the effects of of those of those treatments? Are you able to kind of Baker home? A you're able to do that for a short while until it really kicks in. Yes so you side effects come in stages and the change each time. You have chemotherapy. So the first time had Makina therapy I was side effect. Free for two days which you didn't expect a little bit tired. I was told to experience nausea which I didn't have either time and then the second time they came on a lot quicker the side effects so had lots of tingles in my extremities. Which would painfully if it was cold out of tangles in my mouth how to call drink so now is Emma. Gin and tonic awful. Oh renders you would have an upset stomach. The in between each side effect you'd have couple of side of fact free days three. It's kind of the same stages it doesn't all hit you at once and different people experience different things as well so this time round. I've had hair loss so member who is naturally behold and has all the equipment said. Get Round here as soon as you start losing your hair. I'm going to Brazil Australia because you. You're very proud of you. Have you have equipped to grow back at some point? Yeah so I've always loved hover. Thick have always lived my hair and always been really proud of my quick and it's almost become like a mask up. That's how I've been known the guy with the quiff gas knowing that it was going to fall out and losing. That control was difficult. Because you can walk around our. I felt I could walk around. Nobody would know. I had cancer. Unless you see pick line in my arm our start talking about it but when you see somebody who has no hair and no eyebrows of. They've lost the beard and you know a person's chemotherapy and it meant that I was certainly very visually constipation. A patient and nuts ahead laughing. It's difficult to get head around. I mean thankfully the moment I do I still have my kid is coming out and I just thought I didn't accept this and I think a major decision from a very early age not to let the come to define me and not be controlled by cancer and not be somebody suffering from comfortable living with cancer and so I thought right. I'M GONNA get shaved off. I'm going to be bald and it's going to be fine and it's I know that the chemotherapy is working and at the end of the day I mean for the long run a minute for the surgery at the end to become a free to lose my hair at the lose quick mascots not there awhile. It's fine that's the great thing about hair. It grows back but it's really interesting and it's really nice to speak to a man about it because I think people often Ashim that men would find it somehow. Easier to lose their And you know it's something that that that maybe only women will really struggle with but but not so an. It's good to be reminded that it's you know it's it's still visually important as a means of identification is made to who you are. It's part of who you are. You're speaking to a guy who he doesn't shave his head completely but had it really shot anyway and he was saying people thought that he wouldn't affect me that much because I really really short hair anyway crew. But he was like it affects everybody not the same but your hair style defines the person that you are. It's almost like the crown on your head foot matches the fashion that you every needs. It's the defines who you are as a person definitely whether it shot whether as long as difficult year did they did the schedule of treatment and the way that they spelt it out to you. Did that give you some comfort? Was that helpful. Yeah definitely so I. I was saying before that things just kind of went really really quickly and I was saying to people that probably have me in for surgery next week. Because everything's gone so quickly but then after that initial investigations that you have there is a period of waiting and you are just left in limbo anything. When am I GONNA get my results? What my results going to be an as soon as you meet when as soon as results of come in an Easter meeting with the doctors in aces and a gift shop timetable of his. When it's GonNa stop this is when it's going to happen bum-bum-bum-bum-bum-bum-ba you can stop pointing your diary and you do feel a little bit more in control. That really really helped knowing saints fans are probably what we okay on this day. So probably can't me up back in the day after the the week afterwards because I think it'll be a bit better than to definitely helps to get control back. Really what goes what goes through your mind in the waiting time. I think everything I think initially like I was saying a did A. I wanted to have this positive outlook. I guess to support myself also to support others as well but you do. Have you bought days and you mind does one? Do you do think what if the chemotherapy doesn't work and I can't have surgery and then a really limited life basically in terms of time. What if this doesn't work? What if it comes back again? All these things go through your head and I think it's healthy to think about these things because you can get mentally prepared for it and you have to come to terms with. Maybe things weren't won't work out as people are saying they might do our as as well as the. I hope they're going to do because it's always a what if you do? You mind goes dark places and I think that's healthy. I think you have to do that once they once. The treatment kicks in. You've got that framework to hang onto and you start doing that. Yes a comedy on Saturday and however you how have you personally found the treatment how how apart from me losing your beloved Quiff How have you found in dealing with it because you're so three doing three number three tomorrow? Yes tomorrow yeah my goodness me. I'm excited I've only just that I mean that's got to feel good to feel good do you do you? Do you. Approach ANOTHER CHEMO. With a sense of dread. Or is it just something that you go to do? So people are saying how you feel about going for your chemo tomorrow or next week. It's it's almost like you are stepping up the ladder to get to the end point. So it's a mixture of feelings. I am excited to be going from chemotherapy tomorrow. Because you know it's chemo three or four and it's a bit closer to an message with is going to be happening but you also know that it's GonNa come with side effects in. It's GONNA come with its downsides. So the party that dreads it but it is a for me. It has been about focus on the positives and accepting that there are gonna be about days physically and mentally and that's what you friends and family life. That's who you pull on when you're having a bad day so it's a mixture of funen excited dreading the fact that you might have to be rushing to the toilet You can have tingles. Ekoku outside or you might be a bit tired. It's it's it's a strange concept. Audi you practically prepared because I know who packs the chemo bag. So I'd actually not even thought about Chemo back until somebody said on twitter Chemo Chemo. Bag is basically just like a bag. You take to chemo. That's basically of anything and everything that you can do to pass the time. Okay so when you've been hospital. Get Chemotherapy you there for about seven seven and a half hours. Oh my gosh. That's a long time as you keep my chemo. Lasts ABOUT TERRITORY? Takes about five hours to fully infuse. It's a bit like a long haul flight bug. You'd have a pack of cards in. You'd have banana grandma scrabble to non time. There's been talk a good game. I like it. You take a book anything that you can find. Comfort in you take the necessities Utah. Might tickets beat my downloaded a few programs on etc. Okay A bit of music and then you take things that are going to help in terms of making yourself feel better so I've got a little pencil case. It's got hand cream it's face what Scott face moisturizer it's got spray missed a glass. Brim is essential rural. On's hunger likes signed censor yourself a little bit? It's just anything and everything you don't use fifty percent of the stuff that you take with you but it's there in case you need topped absolutely talked to did somebody. Somebody suggests that to you on twitter. Somebody suggested on twitter and I'm really pleased the date because you can be prepared and he can be like. Oh yeah might freshened up now and white cream. Ya here. You are absolutely right though. You know you all those little things matter matter when you get when you get home is there because obviously your cancer is a really awkward place for you to eat and you love your food so i WanNa talk about your blog. How have you coped with that side of things? One of the most difficult things I found was not being able to eat food properly and finding difficult to swallow. When you're a big Foodie and you get a lot of comfort food. I got a lot of comfort. Cooking far. People can fall myself and it's almost like ever De Stress. At the end of the day you come in from work you get your sauce pan out you make something and you can kind of reflect on the day and not having now it was really difficult and mealtimes we sit around the table. We all eat together. That'd be big pots of stuff in the middle of the table. You're leaning over. You get any self some pasta some wedges and etc. I was certainly taken away from not and have a plate of food. That would take a long time so we everybody else would be finishing and it would really highlight to me that I'm not well and I'm not normal anymore physically and that was really difficult. I mean at one point. I couldn't eat any solid foods at all and it would take me an hour and a half to of really smooth soup tomato soup hour and a half savings really difficult in thankfully. That's one of the things that I got back really quickly when aside chemotherapy so from day three I love chemotherapy. I certainly bet. And 'cause I couldn't babe and that was one of the things that let's talk independent burke that happened to try and make myself. I thought I can. I eat now tied eating certain things. Like Oh my God the chemotherapies where can I can. Now sit down my family and have a small bowl of pasta with them and finish almost at the same time instead of feeling rushed or pressured. There was no pressure from anybody. But you put pressure on yourself because you wanted. You want to be normal at all you want from this. You've mentioned as we've been speaking. So the chemotherapy sessions finish. And then there's some surgery yes. Tell me about how that scheduled what you expect to happen after my last love. Chemotherapy have a fall to six week period. Where I'm going to recover from chemotherapy. My immune system gets back up and running the way it should do. And then the beginning of April is the planned dates for my surgery because where my cancer is basically. They're going to be taking the bottom of my Asaf. Agus off the top of my stomach off getting rid of that and then they're gonNA join the rest stomach. Optimus Africa's create a whole Safa. Guess and yeah. Basically our smallest Michael have to eat smaller portions more often about five or six times through the day when when when the surgeon was telling me they explain that and he said all right. I said Yeah. That's fine. You do what you need to do. Just going with the flow. So long as you can get me cancer-free that's absolutely fine. You just do what you do. I'm I'm very excited for you. Does it feel like there's light at the end of the tunnel definitely and north of people? They don't have that light and the have through my twitter feed through a blog have connected with people and have met with people who unfortunately asked edge for and this definitely at the end of the tunnel for me. It's difficult because it's it's not there for everybody but there's there is an when our meet people they're saying things like. I'm going to make the most of the time. Now I've got some glimmers of light for everybody it's just it's just different light for different people. One of your lights has been your blog which is brilliant and funny gorgeous and lovely and and I'm sure has has made a massive difference to how you've dealt with all. This was an immediate thought. Did you think I've gotTA write this down? I've gotta write this down you. Are you a writer knowing? This lights? a holiday twitter feed 'em a dump that quite quickly and then got a new twitter feed and that was specifically focused around me and cancer. One of the main things I wanted to do when I was diagnosed was I guess to help with is being a nurse. You want to be able to help with is in terms of their healthcare and it also gave me a purpose as well so. I worked fulltime and when I started my chemotherapy I stopped and I thought what am I going to do? So I started writing these these tweets and quickly got to realize I've got a lot more to talk about. Then they set number of characters. That twitter's giving me on a tweet and people were saying writer blog right blocking us in Conrad a blog of never written a blog. I don't even read blogs. Do People read blogs in him? I didn't know so a very quickly to start. Actually you guys are right. I'm going to start writing a blog. So focus them around very specific areas around concern around. Saggio CANCER RECIPES THAT. Make it easy to swallow what my slots been like. How pick line was done to give people a bit of a a timeframe of all right? This guy waited for weeks for this to happen. Are This is what this person experienced. And it's quite therapeutic for me as well because I get to write down. What's in my head so I get a bit of something positive for me as well. Getting out getting clear people come back. Say and that was really helpful. Mud Scott they saw I'm experiencing they really good to know what might happen to me as well. So there's definitely positive feedback coming from which is all I want. I'm actually just thought no one's going to beat this. My friends might join not state. But there's so many people that read in the recipes. Tell me about the recipes. I see a master chef challenge so one of the things that I found quite difficult knowing. What would be easy to swallow and things that you wouldn't even think would eat as well as people say. Toast anything what toast is dry. Thanks crackers really easy to swallow. That doesn't make any sense. It makes no sense so one of the things I wanted to do was put some healthy recipes out there that would try and stay away from things like refined sugar. Try US more. Natural things like Maple Syrup or honey also things that are going to be easy to swallow really am so things like jolly prawns seafood with was with me for longtime fish and seafood because it was easy to swallow so golic King Prawns garlic mushrooms. Similar is a bit of lubricant in. La Books at our oil. That's that's going to be easy to go down and something that's got taste as well so thankfully my tastes and the moment haven't been affected but I know that the might do in the future but people generally have like a bit metallic taste when the things off throughout the day. So I wanted something that's spice or something flavor to kind of take that away. It's really lovely to meet you and speak to you in you know And share such a positive outlook. And what's the what does the future look like more immediate future? I guess is get through treatment. Get through surgery an Komo on the other side hopefully and things so it quite positive one of the things that has really hit home is a really enjoyed making connections with people who were in the same situation as me. I been through something that somebody is going to be through. And you do almost connections and it has made me think to myself actually. Is there a future in this for me of really enjoyed it and looking at at things like McMillan is this? This is something I can do in the future to be working with a million future. I'm definitely going to be raising money at some point of raise MARINA PASTA FERRUM. Mcmillan before I did the National. Three P twenty four hour challenge back in two thousand and nine. So this is your from Yorkshire. You do this in your city. You guys it's like literally going for a walk for everybody now. I'm very impressed. Yes so are you. Are you saying we are you? I mean could there be milliner in possibly who knows what's the space. It's definitely something I've thought about. Fish are definitely million in and the really helps me unto for me to continue my journey. Hopefully being cancer free with somebody like McMillan would for me would be amazing because I've enjoyed it so much. So yeah maybe on the cards listen. You are literally the that you are literally the perfect combination of of of having experienced natural instinct for caring as a nurse and you can bank coffee mornings exactly. Come on and on that note. Ben Thank you so much. We wish you the best of luck with the rest of you treatment and we will speak to you again. I'm sure in the future but fundraising activities way or life has found itself in Q. Hello date lovely to see you. Dany Bell is one of our magnificent McMillan professionals. What were your thoughts on listening to Ben Story? What he describes really is a lot of people experience when they get a diagnosis in go through treatment with with cancer. So I'm sure a lot of people identified with Ben. He had an interesting combination treatments as well. He had chemotherapy and then surgery And he had no idea that there were so many different types. I know I mean is mind boggling but they are all fairly standard treatment regimes for different types of cancer. And as I said before they're they're given acronyms to make it easier for the professionals to understand but it's not an unusual process for some cancers to have what we call neo atrovent than surgery and some people. Then have something after that as well so it depends on the type of cancer and your response as well to treatments Ben. We know took his fantastic with him. Who took a notebook and a pen to write things down? Don't Google obviously answer some questions for some people If you WANNA find out more about the treatment you've been prescribed. Is this better to go to. There are lots of information sources out there about the different treatments. Essentially the treatment center will have fact sheets or information about the types of treatment that you're having but what they need to understand is what type of side effects that you're likely to get just in case you need support hours equally going to go and hopefully Hitting on one of our web pages We'll give you understandable information. And there's lots of downloadable information of the Internet from our website. That people can use Dania. You entitled to a second opinion. If you don't want a certain type of treatment absolutely you can ask your specialist. If it's possible to be referred somewhere for a second opinion and sometimes you can go to your gp for that as well but the specialist likely to know some people will actually look it up and they will look up their condition and they will compare to other hospitals so but you you do have to have a referral. Unfortunately you can't just rock up so my advice would be if anyone wants a second opinion than they just have to have an open and honest conversation with with their consultant. Ben gave us a super tip about his cancer bag that he took. What are the kinds of things that you see that you you can tell us about preparing people for treatment? One one of the things that people often struggle with is the traveling to from treatment. That takes its toll loss of appetite feeling tired and so sort of planning for that around your kind of Treatment regime can help And just making some adjustments to kind of make it easier for yourself I mean if someone like me I'm always rushing around and I have to do everything but appropriate wouldn't be up to do that and I'd have to make adjustments and not have to accept help and for some people then used to accepting help so I think it's Having an understanding of what your treatment regime as what the potential side effects might be and then also after you've had the first treatment you'll have a clear indication of how it might impact you So that you complain talking about side effects then bless him did lose his beloved quiff. Quick thing about Harry goes back so we will see the quick again taste. Buds are okay. But what are the common side effects of a generalized chemotherapy radiotherapy plan so nausea and? Dara our common one for some people they have Harry saw mouth and added to losing your taste that can be really really challenging in terms of eating some people get issues with Sensations the tingling didn't he yes yes so you can also get something we call it hand on. Foot Syndrome where you get painful sore palms and sometimes blisters. It depends on what type of drug regime you're having and I've heard people say in terms of treatments of all of the treatments. The chemotherapy is what they found the hardest cope with. Tell us a little bit about losing your hair because it was really interesting talking to a man because I think everybody assumes that it's it's just women and we all the people that would care about it but it is a common side effect other alternatives now available to to reduce that to help that there are. I mean there is the coke cap but not in itself seems like an experience that you have to kind of be resilient to coping with just to keep keep your and when you think about how great some wigs are out there made of natural hair and you know. I've come across people and you wouldn't even know that. They're wearing a wig It's very individual really very individual. But I think the the thing to remember it's not just the hair on the head that they lose. They'll lose their eyebrows and their eyelashes. And so it's that whole look really That's tough year. How do you know when you treatments working? Do you feel better How do they tell you yes? This is going to plan the do that by monitoring. So they'll do that with blood tests scans And generally they. I mean because you obviously have to have blood test to make sure you're well enough each time to your body's well enough to cope with the chemotherapy Site before each cycle. You will have a blood test but usually about three months in. If you're on six month regime they'll do a sort of a stocktake and see what the impact is. Do you have regular meetings with your oncologist during that time? Will you dealing with treatment centers? So so you will have monthly depending on the Thai again the type of cancer but generally you will have a a regular visit to a clinic just so they keep an eye on you the GP will be informed. Hopefully that you've you've started treatment. Although sometimes there's communication processes aren't as efficient as they could be but you know ideally the GP will know but equally again that's why we've put roles in specialists because if you're struggling and you've got problems you can phone them and they can even give you advice over the phone or just bring you in ad hoc just to kind of support you with whatever you're managing or struggling with we Met Ben when he was number three or four so the light of treatment was definitely. He was at the end of the tunnel. Amazing what happens then. When treatment stops finish a treatment or the plan treatment has ended what happens then so people often find that rare lyrical. They've had lots and lots of support through treatment and you often hear the term slide falling off a cliff because they suddenly have been given a three or six month appointment to come back for a checkup and then not having that regular interaction out that at that time. I think a few plum yourself into Sapporo. Right from the point of diagnosis. You will still have that when treatment finishes so whatever works for you as an individual in terms of support whether that's peer support or focusing on your health and wellbeing and doing that with peers or whatever is just to keep doing that But if you kind of start out before treatment and I am maintain it then that's helpful. I mean there were always places to drop in like the information and support centres all ringing support worker or a specialist. But it's not the same as peer support and having that support in locally to you they need thank you again as always and our thanks to Ben for sharing his story to get more information about what we've talked about in this episode. Then you can go to our website. Mcmillan DOT ORG dot. Uk forward slash talking cancer. If you enjoying the series why not give it a rating or a review? It helps us find the podcast more easily. I'm GONNA be talking. Cancer is a Macmillan cancer support podcast

cancer Andy McMillan Ben Story Macmillan Chemo twitter Gp nausea US OSCE Dany Bell Ryan Sparkley Paracetemol Women Millan Stone Day emily Dania Google
Practical support and how to access it

Talking Cancer

27:06 min | 6 months ago

Practical support and how to access it

"What practical support is available to me during the pandemic and how can I access it? Hello, I'm M abhi and Welcome to our coronavirus series of talking cancer a podcast from McMillan and Boots where I get to talk to experts to get answers to the questions. McMillan is hearing the most off today. I'm joined by McMillan's chief medical officer the brilliant Rosie Loftus and Boots his chief pharmacist Mark Donovan to talk about the Practical support available for those affected by cancer and now people can access that support. I know our colleagues really value their ability to make a difference in people's lives as they go through their experience with cancer will all touch on the latest government guidance and what it means in practice for people living with cancer. If you are asked to attend an appointment, please do keep it and feel confident in doing so we'll also be hearing some updates from Mandy things that keep you connected with people. It's not the same as in person, but it is a good substitute if these are your circumstances now, we know that these recent changes page. Make some people feel very anxious and worried. Please have a listing back to episode 2 of the podcast if you're looking for some guidance and helpful tips about managing your mental health during the pandemic. We're McMillan and we're kicking cancer Rosie and Mark welcome back lovely to have you with us now as in the other episodes we've recorded. I'm going to time stamp this and we're recording this on the 23rd of October 2020 and all the information that we talked about is correct at the time of recording in episode one we discussed what people can do if they're struggling with the new often virtue of two ways of interacting with GPS Specialists and Healthcare professionals, the millions support line team are still receiving some calls about this. So I'd recommend that anyone worried about that particular issue liquid back to episode one for more information loads of great advice there. However, for some people physical appointments and treatments in hospitals GP surgeries and pharmacies are going ahead but Standardly people may be feeling very anxious about the safety of this while covid-19 is still very much present Rosie what precautions are in place in hospitals and Health Care settings at the moment and how are they making these environments as safe as they possibly can for patients? Yeah. Thanks emigrate to be back. Thank you very much. And as you say we talked about some aspects of this last time obviously, it's totally natural to worry about going for appointments. All of us are anxious at the best of times where when doing this but of course now, there's all the added concerns and Logistics on top of that but you know, he was telling me that actually they're really reassured by all the precautions that they see once they arrive. So again last time we did talk about that shift from not quite so many face-to-face appointments and some telephone or video. So that does actually help because that means there are actually less people going through the hospital and of course when you get there, you'll might have a timed entry you might be asked to log In your vehicle until your appointment time and some places are even giving page or alerts out. I know one of our McMillan information centers that same close to one of the hospitals. In fact, right next door. They've opened up their car park to allow people to part there and indeed if you aren't traveling by car, they're also allowing people to wait inside and the hospitals just buzzing straight across when they're ready for the patient off. And of course, there's all the cleanliness precautions Jetta at the doors PPE and for the staff in particular and then the red and green channels in the hospital so areas where cancer patients would be kept well away from potential infection risk and deep cleaning is just going on relentlessly. So I suppose I'd say there are so many precautions in place. The most important thing is that if you are asked to attend an appointment, please do keep it and feel confident in doing so and one last thing just following up on some of the conversation we had last time about the challenges of not being dead. Take someone to your appoint. Yes. Yes. Some of that is lightning up a little bit in some particular circumstances not across the board, but it it's really important so do ask because it might actually be possible that you can take someone to some of your appointments actually from a personal perspective a friend of mine one for her yearly check-up post treatment for breast cancer yesterday and the situation about taking a couple had changed so so she was able to take somebody with her not all the way. That's great. You make sure you ask. Yeah. Absolutely you did just touch on that lightly not everybody is able to be picked up from the front doorstep and dropped at the at the door of the hospital her many people public transports. The only way they're going to get to these appointments and that has its own level of risk and its own level of anxiety as well. What steps can patients take to ensure they are traveling safely themselves really understandable that you're going to be worrying about this and actually you might be worrying about it and feel I really can't bother people. Hospital or my health care teams to talk about this but actually you absolutely should it may well be that there are options that they can do to modify something simple like Changing Times of appointments. So you're not traveling that busy times and might be able to actually organize things so that for example a blood test might be closer to home. So so please do ask if there are any options to explore if you do have to travel then definitely follow the guidelines travel in a bubble where possible if you've got to travel in a taxi, for example where a mass can open the window and not follow the guidelines which you will find online and I know also that some of our McMillan information centers have been linking locally to see what transport services are available. So again, just whereas to assist with this if you're worrying about this ask there's so much talk of what's online and there's so much information online and I know for for some people who maybe don't have access to computers job Or a little bit older and there are people on the end of a phone on there at the hospitals at appointments that and people are willing to talk and explain through the processes that you might have to that. You might expect them very definitely again. I can only reiterate that on that men and support line. Is there also and we'll be able to answer these queries a direct you to any of our local services. So absolutely people are available at the edge of a phone be that your health care team or indeed the mcmillans support line. So absolutely you don't have to go online that there will be someone at the end of a telephone line. And so please pick up the phone and asked I think you know, when you have a cancer diagnosis, it's again creating levels of anxiety. Very basically though. How does the shielding measure that one place in lockdown Mary with these the the new three-tier system that's been introduced by the government recently. So, I think the most important thing is that you do need to check the local restrictions and guidelines. For your area and if you've got any specific concerns about this, then do check in again with your health care team. They might be able to advise about any adjustments and be able to reassure you about precautions. We are advised that there will be a letter coming from the government to people who are on the extremely vulnerable list and to explain to them what advice they need to take and that length is is immanent but I think it's really important at the moment with the rapid change. We're seeing and different geographical areas that you make sure that you're up to date on what the local advice is Margaret. Yes, Rosie mentioned obviously for pharmacies across the UK the changing restrictions and tear system is meaning that you guys as well having to be quite reactive quickly to to make the experience of being able to get along bonuses or access to information from you guys available quickly and safely. Yes. I am I Rosie it is confusing isn't it? And t as in England firebreaks lockdowns in in school? Northern Ireland and Wales. It is very important that you stay close to the local guidance and guidance on travel but for pharmacies are open as as they have been all along through this pandemic and and we continue to be open for advice and you can access your medication and there are rules and support on on doing that. So so feel free not only need to access them physically on the High Street, but also ring ahead and to Rosie's point, you know pharmacies are available to advise. If you have any questions on on how to access medicine or get them delivered or how to help order your prescription with your GP too. Lovely. Thank you. If there was one starting point that people can go to what's your advice about the first starting point for God in your local area many people will have already been on the gulf. UK website which is updated regularly, and actually you will be able to look for your local area on there. What I would also say is we talked on the phone. When we were talking previously about the map milenkovic Hub, which has lots of information to support cancer patients through the pandemic and on that Hub. You will find the update option but also with a link straight through to the gov UK because obviously if things as we said last time sometimes things get changed on a Saturday evening at 10:00, but you can get to the gov UK website from that map milenkovic and Mark once again, you know, the Practical resources available to be able to access medication from your perspective where where do people go immediately to find jobs that well, you can contact your local pharmacy. Of course, they will still be access and support for medication access for food delivery slots are still available etc. For those people home building or a vulnerable. We also have launched recently a virtual boots McMillan information pharmacist, actually. So so you could go Two Boots.com forward slash McMillan & Pub. An appointment with a pharmacist to be able to help talk you through any concerns or questions that you have around medication or wider issues with your cancer experience and we'd be able to jump in that way which is something that we started to bring in at the beginning of the pandemic earlier this year and something that many patients have hand care is to have have begun to access. So it's another way of life some of that advice there's lots of ways and lots of support available. So look at MacMillan support helpline and website as well as the boots website to be able to access that support Boise. It's always a difficult conversation and subject matter, but we need to talk about a very sensitive area that people are struggling with which is palliative care and especially palliative care in the community and the the vehicle T in contacting the appropriate Healthcare professionals, what practical steps can people take to understand more about their own or family members palliative care options during this time? Awesome, as you say palliative care is so very sensitive at all times and even more so a more challenging with all the restrictions at present, but I think the first thing I want to say is that for more than thirty years as a GP a really can't emphasize enough how important it is to actually have conversations understanding how very difficult that is the actually it's really important and I don't mean they're just conversations with your health care team, but also with your family and friends it's not easy starting those conversations, but over the years, I've seen a huge benefits as a result of those very open conversations. So in terms of practical, you know you it's important to say that palliative care is still available whether that's through District nurses GPS and Specialists or or at the hospice and some of these Services may be doing less face-to-face visits right now and trying obviously wrong. You reduce the risk and the spread of infection, but they all still there. They are still accessible and they have so much to offer in terms of supporting with physical symptoms and also emotional and practical support. It's a very isolating times, you know, without the pandemic. So to to know that this is still available and with conversations and bought some some persistence and supports that that kind of level of support is still there. Yeah, and and I I just had that I think also be really clear when you're engaging with these surfaces off then we'll contact numbers or available to you and and you know, which ones to use for when in many instances there will be a 24 hour line for you to access for queries. So do it may ask, you know to to know where people will be at the end of the line. And again, of course McMillan website has lots of information relating to palliative care some of it that would help you start those conversations job. And of course never forget that you kind of course contact the support line as well. Thank you Rosie. Thank you. Mark questions about cancer boots and McMillan A by your side took the moment. You're diagnosed through your treatment and beyond our boots McMillan information pharmacists are on hand with Specialists support from helping you make sense of your diagnosis back to advice about living with cancer. You can find them in your local boots Pharmacy or online via video appointment visit boots.com for more information subject to Farmer availability. Amanda and I was diagnosed with breast cancer in 2011 and June first phase of code reader was classed as extremely clinically vulnerable. So shielded at home for a hundred days. We have much contact with anybody. I found it really hard to get a food slot start with but then through the local Council I was able to get a secured time slot on the supermarket of my choice and also they would check just to make sure and make me aware that there were local charity group setting up to do shopping as he needed it and the hospital how much they're covid-19 case on Point Break arrival clean masks temperature check kind of the questionnaire every visit temperature again, when you got to the department you were going to hand sanitizer of a sanitized within an inch of my life during that that particular. If there's a standard if you need if you can't find it you need to be able to ask someone you get quite resourceful as your cancer experience goes on to me. That's where my job I mean you all like the 50 mergency service you're on speed dial. It is developed making connections with people the online Forum on McMillan website for me there a secondary support groups stay connected with people things that keep you connected with people. It's not the same as in person, but it is a good substitute if these are your circumstances them some really useful tips there from Monday Mark. Now this episode on practical support you mentioned earlier a law, which I want to know a little bit more about cuz it sounds very exciting. It's the perfect opportunity really right now to delve into the wonderful support on offer from the partnership between boots and McMillan. So tell us a little bit off more about that. Well, yes the partnership started actually in in 2009. I was there at the beginning seems an awful long time ago, but I remember being really excited about this partnership as a wage. Started together McMillan's a wonderful charity and as a pharmacist the whole organization got behind the partnership and it was raising money through doing silly things of colleagues up and down the UK you through all of our different stores, you know, I at one time a number of years ago. I I even ran the London Marathon my legs are still recovering actually eight years on thought it was but but we were all behind this wonderful partnership and raised a lot of money over nineteen million so far with her boots McMillan partnership, this partnership has created found deeper connections than just a fundraising partnership and and soon after the partnership started sadly, you know, I had a real close up experience of the power of the partnership. My father was just diagnosed with cancer a mesothelioma, you know a cancer the lining of the lung developed over many years through exposure from asbestos and and he was diagnosed in the birth. And sadly passed away the following March and he was he was you know, my hero. I loved him so much and and lots of other people loved him too. And and he had a quite a complicated life experience of cancer. It was it was painful and he was in and out of hospice and there was lots of lots of messing around and and I had been a pharmacist that point for a number of years and I dealt with people, you know affected by cancer on a on a day-to-day basis I guess but it wasn't until I was on the other side of that experience. I realized that we could do better as pharmacists as pharmacists teens Rosie just mentioned it earlier about the power of conversations and and I couldn't agree more that didn't like to talk about things. He didn't complain about anything. He you know, he didn't want to worry any any of us really but I do remember having a conversation with him about dying, you know, and and like I said Rosie said it's so important. Have you know many of our conversations when he was going through? This was was you know, I've had a good day or a bad day. And then occasionally we we had some opportunities just to talk a little bit about deeper and I value those conversations and I remember a conversation turned out to be 2 weeks before he passed away. I promised him something then that something good would come out of this experience that he was having. You know, I I saw how much of a difference that his Pharmacy made in taking some of the hassle out of his experience, you know home is it's a whole load of things to cope with when you go in through cancer and I I know the pharmacy didn't think that they were helping that much and having that much of an impact, but they really were so long. So we we took that away and developed this boots McMillan Information Program just to take this partnership to a deeper more connected sort of level and and and then, you know recognition Using that beauty and feeling good is important for people when experiencing cancer as well. So we then developed boots McMillan Beauty je vais a role as well. And and as of the end of August, we we have over 2,000 boots McMillan information pharmacist. We have over a thousand boots McMillan beauty advisors, you know, they fundraise they advised they improve local connections with cancer teams and connect Healthcare professionals too. And it's wonderful to see it grow. It's wonderful to be a partnership that is more than just fundraising because I know our colleagues really value their ability and to make a difference in people's lives as they go through their experience with cancer. What was your dad's name? His name was Grenville Grenville. Thank you very much a legacy a legacy and home. Such an incredible journey you and melon have had together. Just tell us a little bit about as well that the boots McMillan information pharmacists another it's a very specific role that has been created. What could what can somebody expect if they are hoping to have a chat or an appointment with one of these guys? Will they get extra training for MacMillan, you know wider support or pharmacist own know about medicines and can advise around side effects and what to expect but you know, there's there's other things isn't there, you know, the fatigue the I was fascinated, you know that how to look after your skin if you're going through radiotherapy and watch soaps to use and you know, we we've trained our Pharmacists and our Beauty advises to to help on those more practical different areas that perhaps wage who who are affected by cancer don't want to ask their consultant about that they fear or they hadn't and they remember later on, you know, our boots McMillan information pharmacist said there to answer those questions signposts log. The services they can get identified by a little McMillan badge that they were in in our pharmacies or if you go onto a boots.com you can you could find your closest information pharmacist for you to go in and have a chat to really do you need to make an appointment to go in Marko. I mean if you're there and you see something I didn't know that about the that's how you identify boots my billing information pharmacist by the badge. I didn't know that so that's that's that's great. That's great to know. Yeah, and you can you can go onto boots.com forward slash McMillan and and you can search where your local store is and we took you whether or not that store has a boots McMillan information pharmacist or a boots McMillan beauty advisor. You don't need to make an appointment. You can just go and see them and they'll be able to answer your questions and sign post on and off further advice. And and like I said, you know through the pandemic we've developed the roll into a virtual information pharmacist. Now you do need to make an appointment with that of course, but you go online to make that appointment log. And and then we will connect you with a a virtual pharmacist. Like I said and you can talk to them through an application and see them ask their questions. If you age afraid of going out or can't get out you can still have the service and and a number of people are finding that really helpful as as you know, they struggle getting out and about at this time. Absolutely. I used to I remember when my mom was sick. She was she was so concerned with her feet not being really dry and an uncomfortable and we used to be in Boots the whole time making sure her faith Comforts those things. There's the Practical things isn't it? The little things they make a huge difference like a huge difference indeed Rosie McMillan has got other Partnerships as well in place to enable people with cancer to get practical support. What does that look like? What else is there that it might be worth exploring. We do have lots of other Partnerships as well. We've partnered with Nationwide for example for over 25 years and off. So Lloyds Bank Bank of Scotland and Halifax and the joy of this is that this is how we're able to help people with one of those worries Finance is a huge worry for people going through cancer for for lots of reasons. So and has trained the staff at these Banks so that they actually understand the specific impact of cancer on people's finances. And so that being trained in that they can then offer their expert practical advice in relation to managing finances personal banking mortgage has credit cards. So again, there's more information about these Partnerships on our website. So please do access them Mark Rosie as always just so full of information and great great advice and support package. If I'm going to I'm going to try and pin you both down to try and highlight the one piece of advice that you think is going to be the most useful for people who are finding themselves really struggling at the moment with practical support during this hideous job. And demek Mark. What what would your what would your piece of advice be? I'd say talk to people. That's what I'd say. I think there's lots and lots of advice around. Lots of people don't know what that advice is or supporters, but talk to McMillan talk to our pharmacists talk to you consultant. Don't suffer all on your own. There are people around to help Rosie opening. You're going to Waco that I'm going to work over there and I'm going to be really sneaky. I know you said you were going to try and pin us down him a but can I can I go for two and then you can actually to be fair it's because they're not really mine. They're both from a patient who spoke to me this week about her lockdown experience and as we know it's so hard also for family and friends when a loved one is diagnosed with cancer and often. It's such a struggle for those people to understand how best to help and support and at the moment it it that's again even more difficult because there are so so many fewer options off. And what she said was that actually she found it really helpful to just directly asked family and friends and ask for specific help. Okay, and she said things like can we have a telephone call and woke up her or an online couple or could you get to the shops and get me this and maybe if it was a treatment day, you know, could you cook an extra couple of portions of food and just leave them on the doorstep and not wishing to encourage any infection risk, obviously, so really practical things and the other thing she said which was obviously music to her ears and and great because that that that you know, that's what melons here for but she said the other thing she found really useful was what she described as many as clear and understandable information and just to know that Matt Millen was there and had her needs at its heart. So I suppose what I'd be saying is please do use all the information and support that MacMillan and boots have had, you know be that members online community for peer support all the support line and a nod See all the boot services that Mark has talked about and and all this information. You'll you'll find on the website. It's absolutely brilliant, and I just, you know, it's encouraging everybody to to pass this podcast around so that we can we can just get as many people to know about all the Fantastic stuff that is out there in this incredibly difficult time Mark Rosie. Thank you very much as always a pleasure speaking to you. For more information on the topics Rosie Mark and I have talked about in this episode head to our website McMillan forward slash talking cancer for resources advice and support is also where you can find out more about donating to McMillan in our next episode will be talking about money worries that people with cancer may have during the pandemic subscribe if you'd like to hear that and every new episode whenever it's ready and if you enjoy the series, please give us a rating or a review it helps others to find the podcast more easily. I'm Emma be talking cancer is a MacMillan cancer surgery podcast.

Rosie McMillan cancer Mark Rosie demek Mark UK government McMillan & Pub MacMillan GPS Specialists Rosie Loftus Mark Donovan Mandy McMillan Standardly consultant England advisor milenkovic Hub
Work & Cancer

Talking Cancer

43:17 min | 1 year ago

Work & Cancer

"What happens with your work when you receive a cancer diagnosis? Hello and welcome to talking cancer. A podcast from Milan where I'll be meeting real people to have honest conversations about living with cancer in this episode. We're talking cancer with Helen. I'd apply for a job or it's pretty good at getting through to second views. And as soon as you mentioned I can say you suddenly found that it would stop. Helen has a hereditary gene. Which makes them more susceptible to cancer so much so she's being diagnosed six times of had by all cancer cancer. The wound cervical cancer breast cancer skin cancer. Helen talks to me about how her numerous council diagnosis have affected her career and her finances the night before eighteen to have surgery. My boss set me off to get somebody else in. I ended up two days after my surgery. Zoom payroll from my hospital bed. What has nearly three decades of cancer looming large taught her about the way employers handled the disease years fag. Big See something you didn't speak about each shoved it under the carpet whereas I think now people realize it's not Sarah. Death sentence plus later on million professionals. Dany and Liz are popping him for a Coupla to talk about how to deal with work when you have cancer it's important that you're open with your employer and tell them about your cancer so that they're there to be able to support you women melon and we're talking cancer Helen. Welcome alone it's lovely to me. I love me now. Most people who we've had a chat way than who've joined us on the podcast have had a single diagnosis of cancer. Tell us how many times you've been diagnosed in an on what you found out about it. I've been diagnosed with cancer six times. I'm at risk of getting several other types of cancer. I've had by our cancer cancer. The womb cervical cancer breast cancer skin cancer. And I found out that I've actually got age. Netting condition which the easy word is Lynch Syndrome and that gives you previous predisposition to actually a lot more cancers and it also is hereditary so my son has tested positive for it so that means that in the future he could. He's got an eight percent chance getting pummeled cancer. It's a on a very basic level. It's really lovely that you are here. I caught me just. It's absolutely amazing. I didn't I had no idea that this was a condition. And we're GONNA talk about lots more. I want to tell you about though to life before cancer and before the diagnosis. So what was Helen? Like before the initial diagnosis. What was life like for you? I was bright bubbly. I had not wrong got married. I had a two year old son. I was working fulltime. I enjoy dancing reading walking just north things. Family things and that initial bowel cancer diagnosis. Then what were the first indications the first signs that you had that were worrying you I for a Lotta stomach aches and bow crimes. I was going to the toilet a lot more and I lost a lot of weight so I went to my doctor and he told me was. Ibs and then. Eventually it took them eighteen months to even referred me to specialist. But only because I kept bugging them and when they eventually did the tests are had the tests done on the Mandy results back on Wednesday of his in hoster on Sunday at the operational Monday. Tell us when this was well. Because we're going back a while aren't we? We are nine hundred ninety one. Okay so that's nearly thirty years ago. Yes and that process obviously sounds extremely frustrating when you left the GP for the first time how did you feel about almost being brushed off the the GP that was telling me? There's nothing wrong. I thought I was not being listened to and I was told that I couldn't have anything seriously wrong with me because I was too young. The wrong shape And the wrong sex to actually have anything serious lightbulb cancer. So and it was Ashley. Hinted at the psychological Okay now I know at this point and then you get the You. Get your diagnosis and you. You're into hospital. That must have been a really difficult time for you. I know that home life wasn't particularly happy at that point as well. That's right. My husband couldn't cope with the idea that I had cancer. We were all say not getting on that well At a two year old son and the back of my head I was just thinking how am I can cope house. My little boy can hope but I can get through. This scared. Didn't know what the future is going on and the doctors weren't telling me anything it's amazing. How much has changed over the years? Isn't it I'm glad to say now. This experience the initial bowel cancer diagnosis. You get over that. And at what point are we are we into realizing that there's something else there's an underlying hereditary issue that is prompting all these different cancer diagnosis. I heard a breast cancer cervical cancer. At that time you had those and I was saying doctors. There must be something going on here but they they said no no. There's nothing and then just by chance. My sister started having some problems because I'd had bowel cancer. She was worried she wanted to get tested. Genetic testing was in. It's very very early days at that time. And the only way that she get tested was if I was tested I had to prove that the cancer went back three generations so had come up with the the Death certificates and everything else to prove. This oh my goodness me And it was on one side as well because that that was way had blood tests done and it took them six months to get the results. Back I'm wasting all that. Time must have been excruciating Was this may be an onset. An explanation to what was going on. That was something that was quite welcome. Almost that you know at least you could call it something. Well at least somebody was listening. And at least they were explaining to me some court so reasons why this might be happening. And also if it was something hereditary. I wanted to make sure that my family and my sisters and everybody else because it doesn't just affect me would affect my sisters their children if my mom because it turns out that my mom had passed. It's me no. Well Yeah I guess. Of course of course and then so you get this diagnosis which is called one more time Lynch Syndrome. But you want the real name for it is hereditary. Non of equipment sorry is gone. H An PCC registering on police posts. Polyposis colorectal cancer. Try saying out there on a Friday. So you you've got this diagnosis. Does that then help you process what's happened to you and how you view and how you approach the future? I knowing that I've got it not really because it doesn't change. Anything just makes me realize that I might have passed it onto somebody else. Bought the good side of it. Is that everybody else in? My family can get tested. Yes and so. They could get caught a lot quicker and it wouldn't have to go through everything that I went through to actually get the diagnosis. My son now has annual Colonel Skopje's and guest roscoe peace and it means that if he gets the teen years tiniest little polit they will take it away straight away so the risk is high for him to get bowel cancer bar. The chances are he will get caught a lot quicker. Tell me about that. Tell me about the current state of your current state. My Cancer I mean remission which is good. I still have chances of getting other types cancer but I have actually had all my colon taken away. I now have an estimate so I walk around with a lovely little bag on my side whose lovingly called Donald. I went to the reasons why. They and los generally good. I get very tired. I do still have time. Wake up middle night. Don't know why I'm feeling frightened or scared. And if I do something wrong with me I do probably wonder more than other people might do but generally I'm fine I want to talk specifically about work Because I know it's been. It was important to you. What were you working at the before your first cancer diagnosis before my first cancer diagnosis. I was working for a design company and I was doing finance. So practically most of my career's infinite. She's good with numbers and it's been a new what full-time and we're progressing and enjoyed being a working woman. I enjoyed were king on. I loved being in city. I loved the Baas And I'm not really a stay at home person so we're talking about the early nineties. Which is a way back now when you got your first diagnosis. How supportive initially were your employees that point those employers employers always with the time they were they were following in the office. It was a bit strange because people didn't know what say what to do so some people just ignored the fact that I'd be weighing. Come back some people made jokes other people. They made jokes made jokes. So we have new bags and things like that it was. It was quite strange being back but I love being bad. And how much time did you take off so you went? You had some surgery and then you had some treatment for the cancer. And how much time door-to-door did you have off work really at that point probably a couple of months? Okay and at that point. Did you negotiate the sick pay thing fairly easily through that company? That company was fine. They gave me full pay but unfortunately I was made redundant from that company and after that was when the kind of not messed onto and tell me about how that did start so I would apply for a job and at back at that time and then weren't rules in place to cover. Things like disabilities and sickness so employs more or less. Do what they wanted. And I'd apply for a job I would get through. Always pretty good again getting through to second interviews and then they would start talking about health and they asked me about my health. Lead US got sick days off and as soon as you mentioned I can say you suddenly found that you didn't get any further. It would stop really. Yeah did that happen. On several occasions not getting through to the next stage on many many occasions I actually had one contract. I'd actually signed the contract. And this was after I had my my womb cancer. They sent me. The contract are was Jud starts and filled in the medical form sent his in then all of a sudden the job disappeared. Apparently they'd restructured and they didn't need me anymore. That must make you feel terribly terribly. Sad and frustrated it made me feel very depressed One of the big things by cancer is you don't have control and you feel a bit useless. Sometimes you feel that you're not the same person you not normal so to get back to work is one of the very important stages of getting back to as normal as you can be so to be told. Time and time again that you can't have a job makes you feel worthless. You did get a job eventually. I got a job with an ice company. Ping Canary Wharf. Nice people that lost two week. Okay whoa how dumbfounded. What do you mean that lasted a week? I started with them. Started doing the job and after about four days they called me in and they asked me if I need problems and I said well you know not really well. This is only. We've noticed that you go to the toilet a lot and we've been timing you and you spend about ten minutes time in there. You really can't do computation with this. So I'm sorry you have to go. Helen how'd I mean at this point? Man How are you negotiating these tricky conversations with with employers this point? Are you more aware of your rights as an employee at all well at that time the rights were very much in place so it was quite difficult but at the time? You've already been through a long struggle and I'm quite lucky because I'm quite open. I'm quite extrovert and I will stand up for myself. But there are a lot of people out there who don't and I found the conversations very frustrating but I was quite optimistic. I'd find something else so Forward a decade. And and where are you now? You're working ten years later. You are working and there were multiple diagnosis that you've experienced already. What was the situation at work that point then so then eventually we if we look sorta back about ten years ago. I got a job in a company Start do very well. In that company on started offers. The finance manager ended up as finance director. But during that time my Balkans came back. I had several thousand hospital the night before. Eighteen to have surgery. My boss said to me. I think we'll have to get somebody else in and I sat down. Hang on a minute. I've been here for three or four years. You can't just do that. I ended up so that he wouldn't get somebody injury place me. I was working in hostile. Today's surgery I was doing payroll from hospital bed. What so what are the conversations you have at? That point was their their verbal pressure at the time to come back to work. Yep always asked before ain't gonNA asked hand on the off and I said I don't know burn fishawy probably about six weeks. Maybe two months. He said he was going to be very supportive. Yes very supportive but couldn't do that meal that time. So could I work so you have your certificate saying you are unfit for work. But the expectations to work seem to have been quite high. I came out of hospital and I was working straight away. From the moment I go down hospital. I had my in hospital. They actually confiscate my laptop. I I should think so. Goodness gracious me case. It's interesting though because you. You're a bright hardworking woman and I'm sure you had a great sense of duty to work. Which a lot of people do not being taken advantage of a little bit here in the situation. It feels like people know you enjoy your work. Yep People can say that you are sick so and they I think the back of their minds they know that maybe find it hard to get another job so I think they do tend to play on bet because what they say is well repressurize little bit. She'll do some work because you'd be worried it's GONNA loser job. It's obviously having the you know having time off work and then being out of work has must have had a financial impact on your life. How have you managed with great difficulty? I got interests with mortgage my mortgage. I had to go onto benefits which I'm done before I had to take loans from friends and families. I have what a supermarket with a calculator to make sure that I didn't go. Overspending afford my bank. They went very helpful. That's where people like McMillan come in because they do campaigns and I got involved in a campaign to help try and get the banks to setup specialists people because people earned the phone. They don't talk to people. I mean if your best wrangled cancer you'd find it if God seek into them about two so somebody at the end of the phone doesn't know how to do that so campaigns to help getting people to specialize operators put you in touch with my bank and there was nothing they could do and the person at the end of the phone. I said are we saying to the Michael Cancer? I need help. And they were saying yes. But you'll have to go into mortgage arrays. And then they'll do this and then they'll do that and I'm saying I can't do that you know I've got a young son. I've got faith and nobody listened at the time it has got better. I must say was You mentioned Macmillan. Obviously would that other avenues that you push you to find financial advisor or did you very much feel. There wasn't alone out there at the time. There wasn't a lot out there. My main backup through the whole thing right from the start as b McMillan because they got wet sites and they have help lines and they give a lot of information about financial stuff from what stew and they were the people that really helped me with the work issues They put me in touch with. I have a contact called Allison. Who Helps me in a lot staff? And when I told her I was having all these problems at work she said give them this and she gave me a copy of the Disability Act. I popped on my desk after that. Generally he started perk-up Betton started to take more notice. And I would say to anybody out there who's having problems first and foremost be honest with the bank and be honest and open with your employer. How concessions with them and if they don't listen plot the disability act in front of them. Phone Allison Allison special. She'll help you. I'm so you have a new job don't you? I have a wonderful new. Tell us about the job. Say My new job is I've done finance so my years and I decide age the some my last job. I was Kinda managed down because I I've been off too much so we came to a settlement I left or to three months off and then a friend said there was job going. I'm as a finance test analyst and I taught now I can't do I t but then I thought well hang on a minute Lots of things. I've never done before that I can try and so I decided to give it a go so now I'm working in an office where they take sickness and disability very seriously wonderful sick pay and everything the most exciting thing for me when I started in this nurse. I'm really really stupid to anybody. Who Doesn't have a story? Mubarak is that they have a disabled toilet way at all and they do they care. Um first-time because Donald has had a habit of leaking sometime. Yes so first time that happened but everyone in there a month six weeks. They sent me a said. No no no. No no no go home because it's always a bit traumatic so they sent me home If a phone up and say I'm really tired. Okay work at home. So they apparently done. It can be done and I'm I'm so pleased. It's it's Overdue that you've been treated while at work now. I did want to talk to you as well. Because when you met your second husband yes click at the big smile on your face. You decided to cover to Islam as that helped you. It has is given male of strength and comfort and I feel like I've found myself and an interesting question I think is is. How have you found? Cancer is discussed in the Muslim community. Generally it's not there's an some of it is culture which isn't necessarily to do with Islam but are a lot of myths and culturally shoes with women gained see male doctors with husbands and they don't want to tell their husbands because they're embarrassed some people think that they have got cancer because being punished There's an awful lot worse off an awful lot of work to do there. I had a friend my local mosque. Who eventually spokesman told me that? She was worried because she had a lump in abreast It turned out that she had stage for breast cancer. She'd had that lump for over six months. Goodness me. She didn't go because the doctor was male. Yeah and I did explain to. You can ask to see a female doctor. Awesome to send you to a female consultant. If you're that worried but I did also explain to her that she could have somebody with her. Because it's all about showing yourself off to other people and so there are still ways to get round that but we do need to set up. More support grates beneath there to be more help for and I'm sure it's not just in the Muslim community now we're probably talking about in Hindu and everywhere depend coaches the ripple effect of your experience in your cancer story is GonNa have far reaching effect. I think isn't it and it must be very nice for some of those women to have another woman to come and talk to who has had some experience as well. It must be you know. Really Nice for that lady to come to you and said they own worried about that. Not My style. That must make you feel you know good. It does make me feel good I try to do as much as I can even like talking today because I feel that a lot of people they sit there in silence. They have they're worried about it. That don't short their family visit. Don't want to put their problems on the phonics. Another family is going to be worried anyway. They feel embarrassed about talking about stuff to people they don't know ought to family and friends. I've had friends who've actually cross the street so they don't have to talk to me because and it's not because they don't love me and they don't like me just they didn't know what to say and. I think that we need to get more help from training. Gp's to be a bit more understanding. We need there to be better facilities hospitals so people don't spend loads of money on parking and we need to be able to diagnose more creek. There's much more today. I wanted to ask you as well that the country experience is so unique because it spans almost thirty years. You must have seen improvements in the workplace in that time. That make you feel encouraged. I have I seen attitudes towards people we can see. Changing more facilities are available so segregate more disabled toilets again more ranch. You're getting people being more understanding. I think people are more open to talking about stuff. Now and years back the big C was something you didn't speak about each shoved it under the carpet whereas I think now people realise surly death sentence so managers more able to talk to people. I think there's been more training going on in the background. So people know how to deal with people more for sure. I think generally people more aware so even your colleagues now a more aware. What's going you still find that some? Kansas don't want to talk about. That's why I have. Donald Roth makes it easy to talk about but generally it's much easier to work now now you I mean we've only known each other for a very short period of time but you start. Music generally chipper type of lass. And I know that you're encouraged boiled the the changes that you've experienced but it has been a battle clearly for you and does that does that leave you bitter and angry orders that. How have you coped with you? Know the the not just the cancer and not just the multiple diagnosis but the trauma. Work and I'm what you've been through. How'd you manage that emotionally a choice? Think about the good stuff I've got going on and I try and be positive. And every day they are finding new cues new ways of dealing new treatments When I look at how things were back in nineteen ninety one and I say how they are. Now that gives me great. Hope for the future because things have changed so much in that thirty years. So how much more can they change? In the next thirty years we have. Obviously the people listening may be in a similar situation at work and Struggling with how to start these conversations negotiates the landscape of of employment. When you have a cancer diagnosis. What what is your talk tip? What's your advice to somebody who is going through something like that? Find Somebody to talk to. They will tell you what your rights are an NBA as open with your employer as you can be have an open and frank discussion with them so that they don't have any false expectations so they know what they have to do and speak to your colleagues to make sure that they understand as well but most of all make sure you tell your employer if you've been through cancer you've been through chemotherapy. You've been through radio therapy if you get a cold. You're not likely stay off. You're more likely to be at work. So you're more likely to stay there work hard. Not Because you think you might get the side but because you need to because you won't see and that's the biggest thing. Helen thank you ever so much. It's just been a delight to speak to I I I can only imagine what you've been through into into come out the other end of the small faces quite something. Thank you so much time McMillan. Professional Daniel is with me as usual. Dany hello lovely to see you again. we are also joined however by Liz Egan McMillan's work in cancer expert. Liz Fantastic to have you with us. Welcome great to be here. Thank you now. You've both been listening to fantastic fabulous. Helen Dany what do you? What do you make of her story? What an amazing lady and and actually we so need people to be open and frank about the challenges that they've had particularly around Work but also their other experiences so that we can help other people. We talked to helm primarily about about work Liz. And what was so amazing to hear from hers. Well is that affirmation that going back to work and being employed is so important not just not just financially but also to you emotionally It can really turn whole work. Landscape upside down content absolutely. It can totally do that. But I suppose what I'd like to kind of emphasizes that you know. It's not the same experience for everyone and it's very dependent on the type of cancer. You have the sort of job you have and also how supportive your employer is and has support of Your Line. Manager is going to be in terms of your experience so some people have very easy journey and then some people have much more difficult experiences. And it's just going to be different for everyone and I think we have to. We have to realize that and understand that. I mean Dana. Particularly when we've been speaking I've being a and I didn't think I would be but I've been very surprised about how different everybody stories because not. Everybody has six months of chemotherapy. It's just not that straightforward. Is it no absolutely not? And Ashley said There are lots of different types of cancer. And they're all very different. They will have different impact on you. And that's the difference but so at the beginning then when you are going to start negotiating this this tricky time With your employer. How should someone begin to approach their place of work? Well I think talking about your diagnosis is the first step chuck. She having a conversation with your employer about your cancer and how you're going to be managed in the workplace And most people actually find their employers are very very supportive particularly when they're shoot through treatment but they worry loft that if telling their employer they must have a negative reaction so they're worried that maybe there would made redundant or that. They might lose their job but actually there are laws. That are in place to protect you if you have cancer diagnosis and actually it's important that you're open with your employer and tell them about your cancer so that they're there to be able to support you when you say employer. Is this a walking into on a Monday morning? And saying can I speak to my line manager or the CEO or is this an HR thing? How literally from the For the moment? Who is the first person in your opinion? Is the best place to go if you can. So your manager is the most important person to you absolutely supervisor. They're they're the person that you're going to have to talk to thrasher cancer journey through your treatment when you go back to work so they're the first point of contact for you and it's really good. If you have a good relationship with your line manager it can make such a difference to your whole journey absolutely such different so I would say talk. July monitor issue I portion of coal. However if you don't have good relationship with your line manager then tried to speak to somebody else business. Maybe somebody in the HR department if you have a HR department And you know if you're worried about having that conversation you know you can actually bring somebody in with you into that. First Conversation with your line manager so that you can get support and it could be a colleague work for example And that's really quite important and we'll see if you belong to a union. Sometimes it's good to bring a union rapid and But you know you don't necessarily want to do that unless feeding really uncomfortable in having that initial conversation and I think in terms of thinking about preparing for that conversation the first thing I would do if I was in that situation as I try to find out as much as possible in advance of the meeting about your diagnosis you know thinking about you. Know what time off you might need from work. Ask Your oncologist. Ask Your clinical team find that information is and then what is a good tip is actually to actually write down exactly what you want to say to your employer before you go in And then that will guide your conversation and think about things like he know. Do I want this information to be confidential? Do I want to tell my Boston? My colleagues about my diagnosis What time off would I like to request What would help me may be. I want to work through my treatment to stay in my job. Things like If I'm good to be off work for treatment how are we going to stay in touch? You know how often she should be by phone by email face to face. You know if you're in the middle of treatment you're feeling very sick. You might not want to appreciate a phone call from your line manager. So knowing all of that's really important and then also asking about things like well pleasure my sick pay entitlements you know water the policies are there any good schemes work to support me. I love employed places of employment have employee Assistance Programs. Which offer counseling so there might be some good services that your employer has you might not know about so do ask as many questions you can get as much information as you can but be prepared and be prepared for that conversation And take some notes if you want to If your employer takes notes you can ask for notes of that conversation. All these things All this advice is available on our website. So if you don't catch it all just Google McMillan and work and you'll get all this information and advice there for anybody. That is just getting a diagnosis Who's at work? However the basic the basic premises? You are entitled to some sick pay. Well sick pay depends very much on your contract of employment so I would say. Ask Your line manager about sick pay. That's really important. Because there's two types of sick pay their start she sick pay. Which is a minimum amount that you can get up to twenty eight weeks and most people who've contracts of employment can get ten gets statutory sick pay which will be paid by your employer but on top of that you may have occupational or company sick pay and so some of those policies can be very generous. You know some some employers can pay full pay for periods of time and half pay for another period of time If you work in the public sector for example it's very very generous. Sick pay So I would say talk to your line manager find out what your entitlements are if you're anyway worried and concerned with what they respond to you just call the Macmillan support line as well. We've got some really good work. Support visors and financial Guides Welfare rights advisers. That can give you some very good advice around issues like pay for for someone like me. Who's sitting here as a self employed person is there? Is there some advice that Macmillan have as well? Well if you're self employed or you run a small business. It's it's really difficult because what you're doing is you're juggling Huron Cancer Diagnosis doesn't employee of that business. And you're juggling the business itself and that's a real struggle however we have some very good advice on our website and also our helpline advisors will also give you some advice on finance and how to think about your finances as you as you move. Move along diagnosis. So I suggest. Check the website colour advisors if you're self employed. Are you going to small business? Dining one of the things that Liz has just mentioned is is going to that. Meeting armed with lots of information about You'll likely Treatment Program. Who who dictates how much time you might have to ask for of work is that you're in College. Est. is that how you feel personally. Is it what you're allowed to take for as an employer? It's a combination really because there are some types of treatment and some Chemotherapy regimes where you might be more at risk for period of time if you're in an open office environment so it's it's important to understand If there are any risks a period of time through your treatment. Some people don't know how they're gonNA feel when they have their treatment and they're much more tired than a than they think. But actually if you have the open conversation with with your employer once once you know what type of treatment you're having and you've been able to ASA specialists The likely impacts of treatment then you can absorb that and think okay. I actually if I just travelling to work two days a week instead of five days a week. Can I have the ability to work home? I might be able to manage it or maybe I can do some part time hours. I think that's a very individual thing. Annesley says what she got the information about the type of treatment the potential impacts of that treatment then you can make some choices and have some open conversations with your employer. Yes Liz because it seems like the encouraging thing is that this is not one one meeting where it's black and white and it's an ongoing conversation. Yes because think the time off that you might need at the beginning when you're just diagnosed and you just going to treatment is going to be very different from when you've finished your treatment and it's time to go back to work And actually I think probably earlier on it's clearer time off you might need because hospital appointments dictate off really But I think the trickier bashes when your treatment finishes and you're in that recovery stage while while it's like Danny said you know your oncologist. Clinical team can give you some indication of what your how you might feel over a period of time. What's really really hard to know exactly what's going to happen And actually how much time off you might need. And how and how you would phase your return to work for example so one thing that you can do is make sure that you talk to your oncologist. Trying get some sense of that. And then talk to your gp about issue with a fifth knows and knows is really quite important because on the fifth note your GP can actually say you know. Suggest adjustments that you might for a period of time like a phase return to work and that can that can start with your GP or compensation there it can start with your GP. They're not experts on the workplace. Obviously but they can listen to you and China understand your needs and ask you. What is your colleges told you. And then you when you go insure up to talk to your line manager you can have your book with you and have thought is the basis of your discussion with your with your line manager. Now some workplaces they will have ocupation health department and your line manager may request. You have an occupational health assessment to understand your fitness to work. So that is also a fitness statement. That could also form part of your conversation with your line manager. Oh this is fantastic. When you have a good relationship with your line manager in the unfortunate event that you might not and things aren't going to plan and you're experiencing some resistance. Where's the first place and one of the first things you suggest you do? Well I think you know. First of all as Helen mentioned earlier. You have rights at work when you have a cancer diagnosis and there are two aspects so across the UK There's legislation in place equalities legislation in place that protects you from being treated less favourably. Because you have concert from other people that say in the workplace it also puts a requirement on the employer and your line manager to make what we call reasonable adjustments to support you to say. Stay in your job now. I want to be clear. What's reasonable just anything absolutely anything that sports you stay in work? It can be support for phase return to work for example over at say two three months to help you get back into build up your strength to get back into work. It can mean Enabling you if you can't work at home for a period of time avoiding rush hour traffic traveling in Russia our It can mean you know working part time it could mean changing your job description in fact or changing your job on a temporary or long or a long term basis with your agreement of course It can mean things like you know seating you next to toilet areas for example. If if it's easier for you to for you to use bathroom for example. So any adjustments coming up anything that will support you to stay in your job. But there's always a technical issue there in there have to be reasonable adjustments so reasonable means essentially. Is there a cost there? Is it possible for your employer to do that? So what might be reasonable for a massive in a massive multinational company might be very close unreasonable in the tiny small business? So I think you have to take that into account and it's a judgment call really on the Porsche on your part on the part of your employer. Helen mentioned not having to tell her. Employees Pre being employed about her diagnosis is a requirement so This is a technically trickier issue. So in England. Scotland and Wales. Your employer shouldn't ask you about your health prior to offering you the job however there are some exceptions to that and what I would suggest. Is that people come to our website and have a look or talk to one of our work sport advisers if they want to actually talk about those exceptions in Northern Ireland. Your employer can actually ask you about your health at interview but what everybody needs to remember to understand is actually if you talk about your cancer. Countries is classified as disability across all the four nations in the UK. And that means you get the protection of the law. So you shouldn't be discrimination against in your interview just because you've had a cancer diagnosis and you need to understand. Another important point is remember if you're applying for a job and you're asked are you disabled. You should actually take the box. Yes because actually you are legally disabled for the purposes of legislation. And if you take that box than your protections kick in so that's an important point to remember you to a complete legends. I'm like you know I feel. I feel the most prepared person in the world. Should I ever been fortunate enough to find myself with comes a diagnosis but you just wonderful mine of information anywhere? We need to go to get more information about Comes diagnosis and our workplace rights. As Lewis said I think we have a wealth of information on our website. And there's actually a tool kit that has everything in there so information for your employer information for you Which is an amazing resource. So I would let people go to our website and look through the resources there and pick out what's best for them and can also plug also are a work support service so we have Asia advisors on our help line who specialize in working issues and they have a wealth of experience and they can offer you information and guidance about any stage whether you're having difficulties at work if you're looking for a new job and you want advice on how to talk about your cancer diagnosis and maybe talk about when you've been off sick for work so reading important. They're great team and please call them. And if you're in trouble and you're having problems at work our advisers can also offer you a one-off legal advice as well so An important resource to be aware of Dany List. Thank you so very much as always thanks to Helen for sharing his story to get more information about what we've talked about in this episode. Then go to our website McMillan Dot Org dot. Uk forward slash talking cancer next time which talking cancer treatment with Ben. There was a nurse that came over to me and she was expecting things. Look down a name Badge and seven Macmillan on it I thought Oh my God things of really really real really quickly. Subscribe if you'd like to hear that and every new episode whenever it's ready and if you're enjoying the series why not give it a rating or a review? It helps us find the poll COSMO reasoning. I'm a maybe talking. Cancer is a Macmillan cancer support podcast.

cancer Helen Dany colorectal cancer Donald Roth Macmillan Liz Michael Cancer Liz Egan McMillan Ashley Ibs Mandy Lynch Syndrome Milan UK England Ping Canary Wharf Lynch Syndrome Baas
Diagnosis

Talking Cancer

46:27 min | 1 year ago

Diagnosis

"It can turn your life upside down. So how do you deal with a cancer diagnosis? Hello I'm Debbie and welcome to talking cancer. A podcast from Milan. It where we'll be meeting real people to have honest conversations about living with cancer also be meeting McMillan professionals who be sharing advice and information to help anyone living with or affected by cancer to find the best way through in this episode. We're talking cancer with Khloe. Once you hear the word she thinks. This isn't good in twenty seventeen. Khloe Dixon was extremely tired. After the birth of her baby girl I she thought nothing of it but it kept getting worse than I start having these headaches and that was like an elastic band around my head. So then I thought right I better go to the GP blood test revealed. Khloe had chronic myeloid leukemia or C. L. Which is a type of cancer that affects her white blood cells? I'm talking to Khloe about her cancer but particularly her diagnosis. What does it feel like waiting for the news? How do you tell your family? And how does having cancer affect your daily life was horrific? I mean holding my girl and thinking I'm not saying thanks year. Awful plus later in the podcast. I'll be having coffee with Dany. One of Macmillan's fantastic professionals to give her thoughts on what to do when someone says those three fateful words you've got cancer you could actually have a conversation with someone and even if they seem silly questions to you. The professionals at the end of the line will not mind in the least women melon and we're talking cancer lowy. Hello welcome along is lovely to have you with us. Thank she now. I want to try and get snow. Khloe Dixon before your diagnosis okay. And we spent a little bit of time together this morning. Yes go probably kind of some you walk in a nutshell. But that would be presumption. So tell me. Tell me about you as a person in life before this diagnosis Well I'd say I used to be isolated but used to be a very confident individual. Very outgoing love travelling out of time teacher in a primary school. All right what was your specially subject. Art Art Off Fab. Yes so I did not degree alongside teaching happily married to my childhood sweetheart. Are you serious? Yes what is his name Jack? And how old were you when you met him thirty? Are you absolutely go? Oh my goodness I. We went out remove thirteen and then we broke up at fourteen. Do I mean I can't even remember what it did but it must have been bad? He not talked to you a Busta yes possibly and then got back together when I was fifteen and then we broke up a little bit whilst uni but apart from that. Yeah we stayed together and Yeah after married. We bought our own place around. How suiting up author build and we're planning on having a baby which we were lucky enough to construct way and this this family. This picture of was always part of your plan. Did Not look like then in your head. I wanted a big family. I'm one of well. One of seven children actually five from my mom and Dad and then my dad remarried had another two. We've fiercely close all seven of us And I'm very close to my mom as well so I come from a big family. I've got a great group of friends so for me a in a house. It's it's a big family With open doors friends and family members coming all the time. So that's I always wanted to create and that is still. I'm planning on doing but it's just kind of gone. A different route planned Was there a moment that you said okay? Let's let's do this family thing or did he have happened night. My husband said we're not having children too. I turn thirty. He said that from about twenty five when I was ready to have my first child. He's like no. We're GONNA save our own place going to get married and I I respect it. I knew that he wanted to in his career so literally on my thirtieth birthday. I'm thirty no pressure. And he thought it'd take months he'd heard from people's can take months to conceive and we first time is Dr. So you I says don't this dossier birthday baby. Yes no yes. Oh my God literally I'm GonNa fall off my Romani. Yeah incredible and I had an amazing pregnancy to the point where I had to have an skaggs. I had no symptoms whatsoever. No sickness my mom was lying on. This doesn't sound quite right. But she was fine. So this pregnancy is going super. Well yes the plan is is coming together nicely yet. You're ticking off all those things that are on your list. Yes houses ready my nurseries how I wanted to everything was the nursery like creamy pinks. And greys this lovely. So due date due date Darcy arrives done yet because Oh good grief. Yeah not not safe to say on on microphone. Would US towel did you? Were you induced or did it start? Started normally but she was back to back out. Yes I got my first contractual eleven. Pm At night. And I buy my husband I but it was just so slow and then I went into the hospital. Yeah you're five centimeters but but she's not gonNA come for at least another twelve hours and then. I ended up pushing for three hours which was horrific and some damage was done and the recovery. Radi as well. So lots of after care was needed and dossier k absolutely fine gray. She came out like screaming but gorgeous. And yes I'm so thankful that she was she was great. But that's not for me was the star of my journey because the day before I went into Labor. I had my bloodstains. And she do when you know expecting him. And my buds absolutely fine so at some point between having Darcy and nine months down the line when I got diagnosed at some point. My Body created abnormal cell which then multiplied intended to the leukemia which I have How are you feeling in the kind of weeks? Following Darcy's birth was absolutely exhausted but I put everything down to the fact that it was the labor and being a new mom so my anxiety went through the roof. I said to myself you know. It's about beer. I'm a new mom experiencing all these things local this little tiny thing that needs me to after it and and I and I start to have quite a rational anxiety attacks actually. I didn't talk about them which I should've I kind of just swallowed up and carried on and but because of this I didn't sleep so well even when Dossey was sleeping I didn't sleep that well. So the tide got worse and I was a low point I was I loved. I love her life. She's my absolute world and I connected with her. Find so in my head outside a copy post-natal depression because I love. I don't want to be apart from her. It was almost the opposite to what I thought. Post-natal depression was but anything to do with her leaving her alone with With somebody even if my mom mother-in-law whatever it just caused me young's auty check our temperature constantly. I at one stage. I actually went into her bedroom and closed the window. Because I was so frightened that someone would get through that and tak- and it completely irrational but I thought it was just my hormones and it was settled down so I wasn't taking very good care of myself. I lost a lot of weight which I put down to breastfeeding. Yeah of losing the baby weight and And everybody around you at the time was kind of where they were. They trying to reassure you with this normal and don't worry about it. Yeah and they go to have an apology after Darcy and yeah that's great but what they're thinking oh she's crying need to be there or they're not doing this. They're doing this not resting and was at this point anything the you would doing or anybody else was doing making any difference to your levels of exhaustion. And now getting worse okay. I had so much support. My family incredible. My husband is incredible. they was so wonderful It was just something that's going on in my own body and lifted. Now I was sick sick. Yeah so the weight loss of Charlotte loose baby weight but yeah it was my body dealing with this illness and also not taking very good care of myself. So what happens on the day that somebody says it was so I went. You want to go and get checked out so I yeah. The tiredness got worse and worse but then I started having these headaches and it was like an elastic band around my head said like real tension headache and I had it for about five weeks when we daily yet but I just put it down to being exhausted and stressed and I went up. Titians with all you know. Better check it. Stop before I anybody else suggested. I mean always as everybody in this. It's just baby. Yeah go and have a slickest existed and they just put it down to me being tired. And if I'm honest I didn't complain about it very often just kind of. I didn't want to didn't want to be portrayed as a mom that was struggling so I offer bad. I'd wanted this my whole life so thankful that it happened but I didn't WanNA WANNA complain and the auditions start. There might be my eyesight. Yeah absolutely find your eyesight. Wonderful my all got us. I kind of hope and it was. I needed glasses. Because then that would make everything better said then right I better go to the GP and it was actually a supply GDP. It's not one I usually see. Here's fine but he was very much like you know you're a new mom and obviously look exhausted. Yo you say not sleeping well but I would just check your levels. Okay and in a blood test blood test fine. Yeah and so then I get a coup so I do the blood test and cool the next day for my GP okay. Would you mind coming in this morning at for nine o'clock appointment and I thought that doesn't sound good? And what what? What did you think was any things specific that you jump to as an explanation? I thought maybe an iron deficiency got it no. I thought maybe I had a low level of something. I thought. Maybe that's tired but there was nothing in your family all previous experience of your mom. Nothing that would have sparked and allow. We've got no cancer no family. Wow nothing neither side okay so the GP I go into the GP and she. I says how you feeling tired I met the GP still tired and she says you. She did a full body examination before she told me anything and then she said what was that was. That was that feeling around for ever. She wanted to pulses. And that's it. She was okay now. I know more about it. She was feeling my she was examining. My spleen she was twenty eight from my spleen was inflamed but yes she checked my blood pressure and everything else and Mike Lamb's and then you want your own. Jeez okay my husband was home with Darcy. I didn't think it was going to be as severe as it was. So then she said basically your blood test comeback and in your in an average body. You'll want blood council. Your soldiers of your body should be between four thousand and ten thousand genetic. You've got a bad infection or something. It might go up to thirteen in fourteen thousand. You're currently at forty four thousand. I was like okay. I mean I mean. Obviously we couldn't. We can all recognize that. There's a huge difference in number but What does that mean? What point? So you'll given that bit of information. What where's the explanation? That does she sit you down and tell you what is so. I said what what you were you telling me. I don't understand. I understand fighting through fine apart from the headaches and the the tightness and she is like it could be that. This is a wrong wrong. Result your best case scenario the data's wrong yeah okay and the the worst case scenario and she was blood cancer last once. You hit the C word you think. Oh God this isn't good. And is at this point that she called my husband there and then Okay and explained to him what was happening with a an I said. Speech him on the phone or did he know this but he was a high margin. Want him to come with. Everyone had to see me that way so I'll show I wanted to just come calmed down and then drive home. I was fond to say. But at that point she had to call the hematologist explaining what happened. And I ain't gonNA merge the appointment with him at the hospital so I kind of got myself together and I drive time. He bear hugged me and he was confused as I was. If I'm on us because we it was limbaugh we didn't know you've left the G. Pay. With a partial diagnosis is something. That's not really explained to you. Yeah how did you drive home? I find my mom okay. She talked me through You know all the different possibilities it could be and we'll do with it and medicines amazing and she's like my best friend. She's incredible so she called me down From that point onwards my mom an Jack to every appointment with me I mean this is this is when you are your lowest energy wise and you've had no sleep at all and you've got a baby that you love more than anything in the world overwhelmed with emotion. How do you try and cope with that at that? I mean what was going through your mind. I didn't cope with it very well that from seeing the hematologist and having extra test had a biopsy done another blood test them. What what does that? What was what was involved in phone diagnosed? That was horrific Bomar biopsy that very painful. They are yeah. I was told it was GONNA be uncomfortable. Mike Goodness I would have preferred labor. I think again it was pretty awful. What do they do they like? They put some static in my hip to kind of numb the skin. And then they actually put a needle into my bone and extract some of the bone marrow. Yeah it wasn't great but it needs to be done in order to clarify exactly what condition I had. I didn't get the results than there that needs to be sent off. So how long were you so you we've got GP. Then you went straighter hematology next. Eleven days I and I have to praise the chest because they were phenomenal they were they were constant contact they were really reassuring and yeah. I was diagnosed in eleven days but those eleven days for me and my family were the worst. Were talk about with your other half and in those days. Just a well we got it obviously. Is that a good thing. It was for me because actually I when I started googling. What if you're having a bone marrow biopsy done what people looking for so I started seeing limited leukemia? Blood cancer bone cancer. That thing and I started reading up on. All the conditions are naturally to understand kind of chronic illnesses and they acute illnesses and I started thinking right. If I've got one of these things I'm better off having a chronic illness which is slow growing bothering the acute. We kind of got through it in a bubble choice trying to support each other. They were incredible with me. I never saw them emotional. They must have had support elsewhere. And we just bumbled our way through it but it was horrific. I mean hold my and thinking. I'm not saying thanks she. It was just awful. It's so cruel that that this came at a really I mean you would have been would have been emotionally vulnerable anyway. You know and I can't imagine how you must have Farrakhan. It's like you know the the cruelest throats to have such a huge part of news at that particular point. I mean I guess you you. You approached it you google that and you protest it like the way you would your classroom in the morning. Yeah exactly I got straight my head. At this point I actually went back to the GP and a disgust momentum. Health and I said I haven't been coping I should have been more honest about it. this has come as an absolute shock needed help with it and she was so lovely and so understanding and she put me on medication. That was That's helped me with Artie. And once I was on that and nobody got used to it. I was able to process information a little bit better. Any sense is face. I just needed a bit of clearance that have support was that was an element of you being quite frustrated that you had to find out so much yourself. Yeah the problem is. Is that because there's so many different things it could be. The doctors don't want to give too much information to you've beamed organized understand that. They're covering their own backs they don't want to say. Oh it could be this and it could be that because then worry the patient but for me yet that Sashi more concerning because I I was killing myself. Yeah I think I'm going to be dead in next year. So yeah it's it's hard. It's hard for the professionals. Because they they've got to keep things professional yet but extremely hard for patient. Who's waiting for a diagnosis? I knew something was coming because the bloods had come back but I should say I had a second line to check whether the data had been wrong and it wasn't a new. My body was fighting. Something I just didn't I walk. And then and then you get the results from the bone marrow biopsy back yet what have you got? I have got. Cml which is chronic myeloid leukemia. So I went to the the diagnosis appointment with my mom. And My My husband and actually it's strange to say about Iras. She relieved when I was given the diagnosis because I knew that it was going to say a slow growing. I knew that there was medication. I could take that would mean that my life would be Hopefully this no more life able to live a normal life. Well a new normal if you will. I was incredibly thankful. That wasn't more severe than it was so as actually I actually went me. Mama WASN'T GARDEN CENTER. After tha cafes. It was the nearest thing safety. There is around around the clouds and the floors and I had a Gossiper Seco- good just to kind of after eleven days of how it was like right off got. I know I need to do so. I was back in my teacher mood. My ad anti-anxiety tablets. I was like right. That's let's sort this out everything that you've been through is that not knowing bit. The lusty relive all live. That bad yet. That's the worst. That's whenever I talk about it. That's the big emotional about because it's just the uncertainty of it's like living in limbo horrible whereas when I was diagnosed they would finally talk to me about it. They're like this is this is what the stats are. This is the medication that you can take. This is what you need to do and I was like right stuff that you can hang onto. Yes and stuff especially if my husband. He could help me with finally. Here's like right. Okay right these tablets and this appointment we've got coming up and he could take charge as well whereas for him living in. Limburg me so hard. He's he's let me super organized construction manage. He loves to. Oh my gosh yeah. He loves to reject khloe He. So lovely went into paper chase legal somewhere. Bright Pink diary that I could make notes of when I need to take the medication. He bought me a note powder. Pink pen photo for my doctor slept so chiefs. Yeah literally. He had me organized but was him helping in the way that he knew he could was an opportunity through through those eleven days. At hideous part where you you you look at the ripple effects for the rest of your family as well and that must have been hard for you to watch. Yeah it was I mean. They put on a brave face to me. I from what I heard from other members of the family and things that they had like my mom I used my sister and other people are that to get comfort from Yeah because then you feel guilty. You feel guilty that your your causing other people pain which is the reason why. We didn't open up very much when I was struggling with Saudi earlier on. I didn't want didn't want to rely on other people. And and when you get diagnosed as this you you have to rely on others because it is such a huge change your life and yeah you need to embrace the support and love mothers. It's difficult because because it was such an unknown quantity. But would you do anything differently about the way you approached maybe those initial steps go into the GPA. Oh Yeah I would've gone earlier. If I could go back I would have got my anxiety sorted earlier which would have made me think. Think more clearly and then I think I would have thought myself hang on the summit's not quite right I did. I was into this. I got into the habit of ignoring my body which was awful because of that. I left it later than I should have. I mean I had had x five or six week a long time. Yeah it is. Intense denied daily headaches. But even the even the fatigue. I should've I should've gone to the GP About Marty. Got that sorted. They even they may well have even giving me a blood test then just to make sure. Yeah so yeah. I think it's difficult. Isn't it because in one way I guess and we'll talk about this shortly but through treatment and going forwards Darcy. You gorgeous daughter. I guess is a great distraction But but in the early days during during diagnosis difficult to distinguish it so hard to distinguish you know yet. She's she's a fantastic distraction. I'll spend the d'auvergne forget I'm poorly but at the same time. I can't rest when I need to go to law and people have been amazing. You know my family friends and things helping out as one of those things that you just. I'm still proud. I didn't want to rely on them too much. You know and I didn't want to not spend time with her. Yeah because actually if anything it's made me want to spend every minute of every day with her of course so yeah I found a balance. It took a while and the medication helped because once my anxiety kind of leveled hours like a cultural leaving her with people show So Yeah I've found my ballots but it took awhile did you was unofficial moment way. You told Your family or did you let them do that. Work for you know. My mom was very good at this. I wanted to keep a secret memo everybody because I didn't integrate a diagnosis. Have you was our family being so close? They should know that I'm going through this. The the eleven days and may becoming of we knew that something was needed to be diagnosed. Sashi we we told my immediate family. Str- straight away in the eleven days and said they were ready for the dogmas. I I was but yeah when it came to kind of the outside the family and friends to wild to open up. And that's why when I started this blog. Wish let's talk about later. I was very anonymous on that I wanted to do the blog. I wanted to write about it but I didn't. I didn't want to face to it. Yeah I teach thing. I wanted to carry on. Teaching is going to go back into school and be may not be the sick teachers. I didn't want any talk. A few members of staff my head teacher and a couple of the people close to other people knowing I I understand that completely and meanwhile is well I suppose there's a level of expertise about your own condition that you want to achieve so that you can answer questions. Yeah and stop people kind of fake news ing. Yeah exactly I didn't. I didn't WANNA sympathy. That are not really willing for pithy. No didn't want to sort of I want to watch enough island. Yes yes I am watching. I didn't want to talk about it. But she as my Jerry's going on up becoming more vocal about it for the reason that I want to raise awareness. Is that about for you? An element of control about your story. Yeah exactly yeah. I think my journey has been a positive one in the initial stuff was very hard but once I was actually on the medication and the results started coming in. I took control of my life again and I thought you know what I might not be here. Could get hit by bus tumor whether it'd be really after all these could you please let right before you cross the road. Just a live specific. And why am I being shamed at this? Y My hiding behind behind this boundary that I've put up those barrier Well we have a little bit then about how you felt when you were told. Let's talk about where you are now. Okay are we in the alward phase if we saw remission Fay boozman have a t shirt remission? It's really complicated condition. Because it's not it's not officially curable. He we also is more complicated but my levels of reach such a low stage that they classes remission. So if I was discontinued my tablets as I doing McKee. I'm Monarchy Chemotherapy. Type of medication. That's taken orally to continue that my body's meant to Kinda get used to that level of cancer and then the currently doing trials actually in London the after people in remission for a certain amount of years that taking them off the tablets and fifty percent of them are staying in remission so it's almost like dormant united the sales kind of just kind of prologue and increase but fifty percent of the. The cats does start to grow but once that be put back on the medication it goes back down again so it's very responsive to the medication. Refills too yeah. So I'm I'm the lowest stage I can be which is fantastic. I'm in remission. Zero zero point zero zero zero seven. I think I am of the day. Rose thank you. I've worked hard for them. I really have every three months. I think tests. I'll be like come on. Come on you just mentioned briefly as well that the the treatment you get your diagnosis and your straight into treatment. Yes and that's what that was just an old. That's an oral tablets at all four. Make you feel Oh. It was bad initially in his heart as well because fast for them so I do two in the morning and two in the afternoon but I call eight two hours before or one hour after well. How'd you build that into a busy yet? So I take them as soon as I got up so I've already afford to outside. That's just scenario. After and then the afternoon I just. I've just learned to be good yet goods yet. Yeah let me get a snack on a biscuit late afternoon but generally The treatment for you is is being bearable yet. Yeah I mean. Initially it was hard. I felt like I had constant flu. Okay let my limbs AAC. It felt like especially my left arm. It felt like I'd been lying on. Neuner half died. You know when you wake up and it's some kind of floppy and my spleen really hurt almost like I had constant state. Yeah no I heard that you describe this feeling of it being really and it's because it's because my body was getting used to processing this toxic very toxic drug and it all comes down the one thing. I still struggle with this fatigue away from it except for that year. What was the biggest impact that it had on you on a day to day to day? Basis the fatigue. Actually what did you do so I would go to bed. Very early had always nap. We've ASI so she luckily sleep for a couple of thousand the diner. I would assume that she's done. Yeah and and I was able to sleep. I sleep very deeply now which is great and I am not good at eight o'clock. Vatu and I you know wake up at six and I just get my sleep however I couldn't once again family and friends being amazing. What's coming over and playing with it for compromise. If if I'm having some days off got more energy some other days. I'm I'm exhausted so for something like this coming into London which I absolutely love doing and do it again but tomorrow will the next day I know the I will need a restful day. Yes take easy so that I can kind of get g backup so I don't ever do it. It's not being tough few to kind of get to that point where you're going. Khloe tomorrow is going to be arrested it. Is I run on adrenaline. I gotta calm myself down. I've got to be like yeah. That was really fun and I want to show about it. I want to tell some whoever the she just got to take a step back and think right my H- my body's telling me that I'm tired of headaches coming on. I need to rest because I've learned to listen to my body. It's taken awhile. Yeah but I'm back trusting my instincts and listening to what my body's feeling emotionally. Do you think it's changed your perspective about being a parent It's just me Morphou Thankful so thankful that I've got her because the we may not be up to have another one. We'll have to see in the future things crossed and I I'm just it's changed my perspective on life you know. I just don't worry as much I used to worry and stress law about stuff. The yeah out of my control. You know things work that propped up on my social life dramas. I just just don't care anymore. I value the things I love in life and the people I love in life in the rest of our just time for such a massive turnaround from describing that person behind who you know was was so in charge yes to take kind of you know voluntarily letting that go. Yeah Yeah Guy. A Journey going with the flow. Because tomorrow isn't promised so. What's the point in worrying about stuff that really just doesn't matter? Have you ever explained to your two year old It's it's to be on them and really slightly. I hope she doesn't need to know bits inches older Mike Spain because I still have the condition. But I'm hoping it won't have any impact on my life at that point and God forbid any impact on has the you know if I can protect you from it. I will but at the same time. I will educate her on it. Because I think it's important. Cancer is so horrifically common yet. I wanted to people were diagnosed So it's important that she understands that people are poorly. People can get poorly. You no one's invincible. It doesn't doesn't exclude. Anybody can sadly so. I want her to be educated on it and we prepared for things that might come in in the future and but had to know that it's not scary in there is medicine and fantastic people to help and you talk about as well in your blog about being kind to yourself. That is that something. Do you think you'll going to encourage her to definitely yes self. Love is something that I've really learned to do over the last year and a half and I Yeah I try to instill in Hanau and giving her lots of love and kindness and hopefully modeling to her how she should treat other people to an. Yeah and and have that love for herself. You must have found some strength and feedback from yes. Because I think it's important to say that when during those eleven days the doom days I searched the internet not just full stats an HSA news. Etc I look anybody in social media that could give me an insight to living with this condition and I didn't find very much a tool and it's because CMO in my age group is actually quite rare yet. So the reason I started the book was one for self help therapy. I used to ride myself so I wanted to write about my journey but honestly Leandra and to help anybody. That was getting diagnosed. All that was in that limbo land that could hopefully give some insight into what it was like living with this condition. And actually since I've started the bug people have going contact the had private accounts and I'm trying to people in Canada in America that have been been diagnosed and it's amazing. The the support network that social media has created for me. I know that it can get a bad rep social media but for me it's been it's been a huge part much any a huge. Palmar recovery You mentioned bigger family. Yes how does that Pan out? What's the what's that looking like? Well initially my in the ground plan before the big C was the. I'd have my children quite close together. That hasn't worked out so I go boy exactly but now my journey has changed and now I'm in remission which is amazing. Now have a better idea of timings my consultant said I need to stay on the tablets for at least two years of keeping me mission. And then they'll be willing to take me off the TOPIX temporarily to try and see for baby which you'll do about twenty four hours after thing fishing fatility cross and then once I have baby though of she monitored through my pregnancy that there's other medications that can they can put me on that safe but just not ideal if you if you're carrying so they won't stop baby. I'll dock right back on the medication because the constant may have grown during the pregnancy. But I but I think that will probably be where we stop writing another two three years. I just started to think more more. And we'll be very happy with the family of four and looking forward for you and your lovely family. How do you feel about what the future looks like It looks it looks exciting. I want to like I said say yes to any opportunity for me. My family I want I want to be up to travel with my child or children and I want them to be brave and have courage to speak up. That is one of the biggest things I've learned through. This whole thing is to talk whether it's mental health or postnatal illness whatever is talk about it and get support if you needed and I'm going to hopefully instill that much children. It's so lovely speaking to you. We wish you the good future for you and your family. Thank you so much for having a child with us. Thank you Danielle McMillan Professional. Hello Welcome. It's lovely to have you here. Thank you so much for coming in for a couple of NAFTA. So we've we've heard from Khloe. They I think the the thing that we also with always she mentioned the importance of not ignoring your symptoms and going to the GP. That seems so sort of obvious. In retrospect but actually how important is it and you know we're always told by the. Gp's don't come to us if it's just a cold or you're just feeling you know. We are encouraged to serve. Look after ourselves a little bit more and think about it before we go. How do you balance that between the ongoing when you think something is seriously wrong? I think they the thing to note is persistent symptoms. I mean a lot of symptoms for different cancers are the same as other conditions are not cancer but generally. They're not persistent. Guidance is if you have a symptom. That's persistent for a few weeks. Then you need to go. In some of the guidance something that goes on for three weeks or longer is not normal but obviously other types of symptoms The Guidance Kinda says if you've had that symptom for six weeks you need to go and see someone say is difficult but I think my my advice is. There's phone lines that people come ring to get a advice without going to the GP and if they're worrying than they just need to seek help and win expected to know the difference between a headache and a headache. That might be something much much more serious. What what what's the language that we should use? Then if we're phoning up and we're worried. How do we know the difference? Well the thing with ordinary headaches even migraines is they don't last and so if somebody has a headache for a protracted period of time or nothing that they tried to relieve it takes it away then that should trigger really seeking some help and I'm the same I hear is what about those levels of tiredness. That very very common in everybody's symptoms sleeping. You'll normal like the sleeper not feeling refreshed. Yes and and we all feel tired. We all have busy lives sometimes when we feel tied but we know if we go to bed early and have a lazy day we will feel better but if if it's not relieved by that then that's not normal and also if it's it's persistent every day you do seems to take that tiredness away. Then that's kind of a warning sign khloe mentioned as well That she sees. She had linked the discovery of her cancer. To Trauma Lights Hold Breath. She went through and that was her surmising But what do you make of that? So pregnancy and childbirth in itself doesn't cause cancer but some cancers linked to hormones. And so there it certainly possible All those hormones during pregnancy And then the change in that when you have childbirth Trigger how the cells grow if you've got an underlying cancer so whilst it's not calls it can impact on how the cancer's behaving and I guess therefore it being particularly aware of your condition and your state of being how you'll failing postal birth is is is important. You need to look after yourself. Absolutely and is a very difficult time because a lot of people feel awful. Adjust into things after childbirth so yes a tricky one so once she gets to the GP and they've agreed that what you'll displaying is not normal. Who ARRANGES TESTS AND DIAGNOSIS? What happens not GP moment. So I mean if the GP's pretty concerned Shaw then they will fast track for assessment specialist at the hospital but sometimes GP's do a blood test or an x ray just to get some baseline information. I'm at the same time that they do a referral but the kind of the more major tests what we call staging so that's to find out what stage the cancer is generally happens Once somebody's under the care of a specialist team and I. I guess this is a really good time to ask lots of questions about the pro. About what the scan is going to entail is it in. A big at shoob is a blood test. What you know. Those are lots of questions that you can ask them. You know hundreds of different types of cancers and there aren't different tests A cat scan an MRI scan fairly standard for staging so that most people are likely to experience that sort of test but there are different tests for different counters. We I mean Khloe talks in some detail about The bone marrow biopsy which sounded quite uncomfortable. It's interesting because the Information about a punch biopsy or by marrow biopsy by is just taking a little bit of the run and it's You know the punch kind of united in and out here. It's shouldn't be painful but but it's uncomfortable but I suspect that we're all different and you know if clary was anxious that may of increased her heightened nece for pain but I mean. I'm sure it is painful. For some people were different so you come from the GP who suspects would like to know a little bit more to the test staging which kind of heightens the level of seriousness. A little bit more. And then chloe was was really emotional about that eleven days that she had to wait and returning to that described his obviously corporal matic for to even talk about it because it was so awful. How long should you be waiting? And what should people try and remember if they are in that situation that waiting time? Ideally you wanted turned around in a week but we. We often have to warn people that it might be two weeks just because of Pathologists that do that analysis As stretches any other part of the workforce and there are a post. And that's a really sad thing to say. But you have to manage expectation naturally waiting. Those two weeks dot won't change the outlook for the cancer. It's just the emotional impact on the person and so it's about what you can do to help. The person manage that so managing the expectation And trying to plug them in or give them some advice about how they can manage their own anxiety but eleven days is within. What what you would expect. It's not ideal and in that time. How everhart is probably stay off Google. I think it is difficult because some people are automatically and I would be exactly to me to be but I guess one of the positive things is if you Google Things Macmillan cancer support tends to come in the top five hits and so therefore if you go to a reputable site and also the number two hour support line would be on there as well where you would actually reach someone who understands And therefore you could actually have a conversation with someone And even if they seem silly questions to you. The professionals at the end of the line will not mind in the least now khloe is massively upbeat hugely positive character. Absolutely lovely to hang out with and she really preferred to talk about love violent than her cancer. What would you say to somebody who is dreading telling people? She didn't want a kind of a big sort of curtains and music. And tell everybody Moment and I can't imagine many people do. It is very hard because quite draining. 'cause you're not only dealing with your own emotions you'll then having to tell people that mean something to you and then you get their reactions. That is quite a heavy burden. Really when you're going through that period there are ways that you can do. I mean for people that are used to using iphones. There's a recording option on there and we do sometimes see people ask if they can record the consultation. There are a couple of cancer. Apps out there that do that and then allow you to a very securely the recording but really having Saudi House with you. It's what works for you and it's actually okay that you can't do it and you haven't got the emotional strength to do it How quickly do most people start receiving treatment? After they've been diagnosed it depends again on the type of cancer because some cancers like acute blood cancer so someone who's acutely unwell you would need started pretty quickly and they may actually have had everything done and be starting treatment within a week I'm very similar for brain. Cancer is but for other cancers. It's more difficult because the staging tests the more complicated but I would say that within four weeks Somebody would would have gone through the diagnosis and the staging and the treatment plan and be looking towards starting treatment. I'm or at least if it surgery had date for treatment chloe was also very honest about her a mental state after she'd had her baby And and the actually. That was something that was dealt with by her. Gp and gave her the space to be able to approach her treatment. With I think with clear ahead What kind of emotional physical financial support can you expect? And where? Where would you find that so? Jp is a good place to start. They used to Managing all sorts of conditions. Where you know. There's an emotional impact also pain so there's lots of things that GP's are well used to supporting people with and also knowing the local services that they can refer to help somebody manage what they're struggling with but equally the specialist teams would have that knowledge as well. So if you're in an appointment with your consultant or your nurse specialist. You could bring up there as well. They may liaise with your GP to work out the best course of action or they may themselves refer to Ah Service to support you if that's what you need. We in a lot of hospitals or communities we have information and support centers and. They're a good place because they focus on wellbeing and generally lots of those professionals help someone with that fiscal a mental wellbeing kind of interact with the information or support sent to say there are lots of different places. People didn't fail. They wanted to go and have an appointment with the GP or a special team. They could just walk into somewhere like that and explain what. The problem is to An expert information manager. I think something that as well is of an immediate concern. When you know that you're going to be receiving treatment that might knock you out for however long it's GonNa make you feel terrible is the financial impact. Is there information around as well about how you deal with work? How'd you talk to your bosses? How'd you start that conversation about the time off that you will need? I mean certainly McMillan. We've done a lot of that. And we've ensured that a lot of the posts that we fund like nurse special support workers have the information and they know what the local resources are in their area so there is lots out there. There's also lots of information on our website Uneven citizens advice bureaux will be able to give people that sort of advice and support if that's what the nearest local support Dany. You're a minefield of wonderful information. Thank you so very much. Thanks to Khloe again for sharing her story to get more information about what we've talked about in this episode. Then go to our website McMillan Dot Org dot. Uk forward slash talking cancer next time. We're talking treatable. But not curable cancer with Adam. We thought that if I decide in your brain but we find a way is going to have to operate an excellent and then the boy out soon. Yeah I know I was just looking at. She's at radio at Solomon upset nausea when we're talking potential Issues when yeah. Potentially you'll find that episode wherever you? Listen to your podcast. I'm Annabi and talking cancern. Mcmillan podcast

cancer Khloe Dixon headache Darcy Danielle McMillan leukemia Gp Google consultant Sashi chloe Milan Busta Jack US Macmillan Debbie feeling tired bloods
How is coronavirus affecting your mental health?

Talking Cancer

16:28 min | 7 months ago

How is coronavirus affecting your mental health?

"How is Coronavirus affecting your mental health? Hello, I'm Abby and Welcome to our coronavirus series of talking cancer a podcast from McMillan and Boots where I talked to experts to get answers to the questions. McMillan is hearing most dangerous back, which is great news. McMillan's strategic advisor for treatment daily. Bell will help offer some guidance with managing your mental health. If you're living with or affected by cancer in these strange times, we find ourselves in from recognizing the signs of your struggling if they're starting to feel overly anxious about things if they're mood changes and they're feeling low to guidance to help relieve anxiety. Actually. We live in a really connected world now and lots of people have adapted through lock down to stay connected. Also here's some advice from Carol who is diagnosed with breast cancer at the end of last year a few months later. She doubted that the cancer had spread to her bones and we started her treatment in March this year. I dealt with my anxiety by trying to focus on the things that I could control with MacMillan and we're talking Cancer birth. Deney, welcome back. It's lovely to hear you and see you again. Now like in the last episode. I'm going to time stamp this because we recording on the 25th of September 2020 and all the information we're sharing is correct at the time of recording having it's probably helpful. I need to clarify first off. What do we mean when we talk about mental Hai is quite to be back. So mental health really is our emotional and psychological well-being and it's very linked to our social well-being. It's how we think how we feel and how we act as individuals and if we're struggling emotionally it can actually affect how we respond to stress relate to those around us. And also how we make choices for ourselves. I mean, these are really challenging times for everybody clearly a lot of people and especially the British were very good at putting a brave face on so, how do you recognize when somebody maybe need some help that they're struggling so people can log Recognize that they need help if they're starting to feel overly anxious about things people will recognize that in themselves also if their mood changes and they're feeling low and can't really explain it more of the time than the normal cuz we all have our ups and downs with all the ordinary things that affect our life but this is something a little bit different. So you're overthinking things worrying about things more or less every day and for good portions of the day people may lose their appetite. They may not be sleeping. They may not have any interest in doing the things that they normally really enjoy doing that is kind of part of them as a an individual. It's really important to remember if you're feeling those things that you're not alone at MacMillan. We hear our huge numbers of people looking for emotional support once they have a cancer diagnosis. So, you know, it's really important to know that you can reach out and get some help a cancer diagnosis. Turn your world upside down. Anyway in this set of circumstances in lockdown with restrictions, it's going to be quite difficult to distinguish a normal, you know, a fairly normal reaction to a you know, a real life worrying piece of news. Absolutely and I think I think we need to remember and I think we can probably all relate to it. You know those that we really care about the most we do know them and we often know the off-side out and we often we can tell when something's wrong before they recognize it in themselves and I think I would I would say kind of go with your gut and your heart and your head if you feel that about I loved one that something's not quite right. They're not wanting to communicate they're not answering calls or you know to say that they kind of not eating also if they getting up in in the night and sitting on the sofa with a cup of tea and that's not normal for them. I think there would be subtle changes and and yes, you might think that's linked to a cancer diagnosis birth. I think that the key is if it if it persists perhaps goes on for a prolonged time and and is impacting on every aspect of their life. I think I think you know those closest to you would know that something was fundamentally different to just being upset about a cancer diagnosis and and anxious about what's going to happen and with the additional restrictions, which way are only just this week. We've been told that quite possibly may run until the spring now that's going to have an extra impact on people's anxiety about their their treatment programs do they can go to is their reassurance that you can give to people that have just received a diagnosis that they can go and ask reasonable questions about what happens next to make them feel less anxious about what lies ahead in this strange strange time. I think it's really important when people are having to socially isolate and maybe having some of their interactions with their cancer team. Healthcare Professionals in a virtual way and maybe only going actually into the center for any treatment or they may not be having treatment. They may be having a treatment pause and we know that being isolated really does have a negative effect on people's mental health and that that is an addition really to what they're going through in terms of you know, anxiety with cancer diagnosis and their treatment and the future and then the anxiety of covert and then the anxiety of social isolation and not being able to I mean even that physical contact with people that you you love is really really important. It's human nature isn't it to have a hug if you're a hugger and obviously for people that have been told they've got incurable cancer but might be having treatments to kind of hold the cancer at Bay. I mean the uncertainty must must be tenfold what they normally feel but there is a great deal of support out there now McMillan is receiving a number of calls. Support line for emotional support and I spoke with Rosie and Mark in our last episode about people being told that they have cancer without a friend or a loved one for support. Of course many people who are choosing to continue to hold or reduce their contact with the public that's got to take a huge emotional toll why might people be feeling the impact on their mental health more acutely than ever this year is just so different to how we normally live our lives with the social isolation and not being able to do the things that you would normally do. I mean some of the advice we give people when they're when they're worried is phone no to get out and about talk to friends take up a new hobby. And actually that's slightly more challenging. It's not that you can't do it in your own home. And of course if your if your home treatment people may need to socially isolate before their treatment or surgery if you're on chemotherapy then during that you're going to be your immune system's going to be at risk. So yep. And once that's normal ordinarily people can still find safe ways to get out and about and and do things that they enjoy whereas I think that's harder if you're confined to wash your own home as always McMillan are have fingers and and Avenues in all sorts of places and there is support out there for people who feel like they are struggling mentally. So, where is where the first ports of call De me where can people go for some help or support. There's a great deal of support out there and people can choose the means of support that suits them because we're all different. So for example, some people are very comfortable using support groups or peer support and they can do that in a virtual way. So McMillan have an online community but some of our information and support centers have set up virtual support so they can speak to their cancer team or they can bring our support line and they can find out about those dead. Or they can go on to our website and just see what's available if people are really struggling and they like to speak to someone rather than do something virtual. You know, they can bring our support line. They might be able to tap into some of the services that we've put together like telephone buddies well-being of teachers to help them maintain their physical and emotional well-being. There's some information on our website about virtual physical activity cuz we know that actually remaining active can support emotional well-being they can also talk to you know, they cancel team or their GP if they're really worried about how they're feeling and they will facilitate that in a safe way if they're going through treatment with people that really like digital that's a whole range of apps out there that can support them and we've tried to review some apps and create a Marketplace on our website for apps that can help people that home. For calling emotionally so, you know, I think there's there's a wealth of information there. But what I will say is speak to the speak to their cancer team or their GP or go to a trusted web site. I like the McMillian website or pick up the phone and find the support line and and help us there. You you just mentioned their daily the telephone buddy system which roses much in and I love it. Can you tell us a little bit more about how that works? Yeah. So our telephone buddies are our usual volunteers who obviously can't support people in the way that they they normally do because of a distancing. They're basically at the end of the phone to support people with advice practical needs and just to be a listening ear. I think it's really important that you've kind of just really took office eyes that there is something for the super tech-savvy right through to you know, people who who it's a computer I can't do it because it is important because job Not for a lot of people, you know doing a zoom chat with somebody they've never met before it's not great. You know, it's not a great option for some people and I love the telephone buddy system that you've got to go. I think it's it's really cool. So there's there isn't there's an access point for everybody along the tech scale isn't there there is saying that picking up the phone for the first time when you have decided and made that call that you are struggling a little bit is is a big step, isn't it? What would you say to somebody sitting there going after I don't know am I making a Fast I'd really don't know whether I should do this or not. I would say they've absolutely taken the first step in acknowledging that perhaps they need help. And so maybe the first thing to do is just talk it through with someone that they feel comfortable with whether that's a friend or or their GP or even their their cancer team and just to talk it through and certainly having been a cancer nurse. Nothing is ever too slight for you to listen to them. People often think or why don't want to worry them or this is really silly but it you know, but if it's constantly on your mind the best thing to do is to talk to somebody about it and make that first step then to find out where to get help absolutely. Brilliant as always stay there. Don't move. We're going to be speaking to you shortly. Questions about cancer boots and McMillan are by your side from the moment. You're diagnosed through your treatment and beyond our boots McMillan information pharmacist. So on hand with Specialists support from helping you make sense of your diagnosis to advice about living with cancer. You can find them in your local boots Pharmacy or online via video appointment. Visit boots.com forward slash McMillan for more information subject to pharmacists availability. Hi, I'm Carol. I'm thirty-eight and from Manchester. I was initially diagnosed with primary breast cancer in December 2019. And then with secondary breast cancer in February this year lockdown was massive anxiety inducing so much with outside of of all of our control. So I dealt with my anxiety by trying to focus on the things that I could control like, you know the next few hours. So the next few days, I found it quite helpful to limit my exposure to all the Doom and Gloom in the news. I focused on things that made me happy, you know, like catch up with family and friends virtually like that started learning Italian during the lockdown randomly. I exercised and threw myself into things like campaigning for MacMillan. I also found edit ation really really helped as well. I found that was really helpful in trying to make me focus on the present a bit more and not worry so much about the future. Think you'll agree some really useful advice from Carol. They're the people who are having to sell for isolate daily before treatment or surgery or if someone in your household is showing symptoms of coronavirus, we've heard how lonely this experience can be. I mean, it must be awful. How can people stay connected it is difficult. And actually we lived in a really connected world now and lots of people have adapted through lock down to using FaceTime and WhatsApp to stay connected to friends and family. However, it's still hard if you can't get out and about in the page away and so people might want to explore things in in a virtual way and we've seen lots of things like people doing virtual bingo with their family home or if they love Gardens the National Guard and scheme of got virtual Gardens that people can access its kind of a about finding what you like, but there is a lot their home. Do appreciate that there are some people that are perhaps not adapt at that kind of digital but there will always be someone in their family that is and so rather than feeling originated, you know, sit down with a a family member and and and look at what's there and find things that work for you and we've talked a little bit as well which I'm sure adds another layer of anxiety that due to the pandemic. It's meant for some people that they've they're having to face delays to there from diagnosis right through to where they are on the treatment plans. What guidance can you give to help people off that anxiety? They might be experiencing around those delays. What what a reasonable questions that people are you should be asking I think it's really really important that they any anxiety they have about their treatment that they do to their cancer team and the cancer nurse specialist because they will have all the information about them as a person they're cancer. And so if people are worried about delays to their treatment they need Talk it through and understand what the impact is for them. And if you're not going through active treatment in your worried, you know, then have a conversation with your GP about whether you should be worried because those are the people that have the most information about your health and and what to worry about and what not to worry about them as always a font of knowledge and the voice of support and comfort. Thank you so much lovely to speak to you again for more information on a topics daily, and I have talked about in this episode head to our website McMillan. He's talking cancer the resources advice and support. It's also where you can find out more about donating a million, you know, next episode were talking about work and cancer in the age of coronavirus subscribe. If you'd like to hear that and every new episode whenever it's ready, and if you enjoy the series we'd love it if you could give us a callback. Sing or a review so that others can find the podcast more easily. I'm Emma be talking cancer is a MacMillan cancer support podcast.

cancer McMillan MacMillan Carol Coronavirus Bell strategic advisor social isolation Manchester McMillian Emma National Guard Rosie FaceTime Mark
Coronavirus, work and cancer

Talking Cancer

20:53 min | 6 months ago

Coronavirus, work and cancer

"What are my rights at work during the pandemic? Hello, I'm Abby and Welcome to our coronavirus series of talking cancer a podcast remote Millen and Boots where I talked to experts to get the answers to the questions about Molina's hearing the most off today. We've got Liz Egan joining us again. And you might remember this from series one. She's McMillan's work in cancer expert and we'll help the answer some of the questions coming through to McMillan support line questions about like what your rights are at work. If you're living with cancer during coronavirus your employer needs to think, you know, creatively and you can think as an employee creatively about what sort of changes could be made to ask you to stay at work. So what to expect after the job retention scheme ends will employers they should talk to staff about plans to end for a low as early as possible and they need to encourage staff to raise any concerns. They have we'll also hear some top tips from Richard get in touch with the manager speak to him about how you think you can do your role in a slightly different way where McMillan and We're talking cancel. Lee's welcome back. It's so lovely to see you again as any other episodes we've recorded I'm going to time stamp this we're recording on the 9th of October 2020 and all the information we talked about is correct. As of today Now ladies we've spoken before about your rights at work if you're diagnosed with cancer and for anyone who would like to hear more about this, it's just it's really brilliant. I would really recommend going back to series one and listening to our work and cancer episode Soul is what's changed apart from everything for people living with cancer. Lung coronavirus is in the picture. Well, yes, absolutely. Everything has changed Emma as we know anybody who has a weakened immune system is at risk of being more seriously ill if they get coronavirus juice and some people with cancer may be at a higher risk of coronavirus as result. And so when you have cancer and you're also coping with with that and coping with work that can be Really difficult and can be even more worrying four people. So yes, so people's lives have changed very significantly because of the coronavirus. It's a super stressful time is near and it must be it must be really nice to people who were at one time told to Shield or that they were more vulnerable because they were having treatment and then to have to go back to work if their employees, you know, say well home phone for business now do people have to go back. I mean our people are obliged to go back to work if they don't feel safe to do so or do they have choices to keep working from home. Well, so I suppose the first thing to say is that the government affected its guidance on shielding in August of this year, which means shielding has now been paused so that means in practice you can go to work and if you cannot work from home as long as there's business is what they call covert safe now and it's important to note that this guidance is advisory. So what I would suggest, you know, the first step really is you should just first of all have a discussion wage Employer and agree your plan for returning to work. Now where you work is a question mark you know, so as I've said with the previous series, you know under the equality act which applies in England Scotland and Wales and the disability Discrimination Act which applies in Northern Ireland. Your employer has a legal obligation to make what we call reasonable adjustments to help you assemble with cancer to stay home work and that could be a variety of different things including helping you to work from home. So I suppose what to say to people if people are not feeling safe have that discussion with the employer employer particular with your line manager as your first point of contact and discuss the situation discuss what they're doing in the business what measures they're taking to make the workplace code would safe and if you're still not fitting that that's a safe environment for you, then I'd suggest, you know, you talk to your employer about alternative working Arrangements if that's possible. This is all in an Ideal World with a reasonable employer wage. And a job that you can drive to and get out of the car and get you know and get straight into the office. What about for those people who are contacting that Millions support line because they're they're genuinely worried about returning home after furlough. They might not be in such an accommodating place of work or a practically easy place of work to get to having to use public transport, for example, so what page first of all is actually really try to understand the risk and my first suggestion would be if you're speak to your clinical team. Now if somebody is going thru cancer treatment and and hopefully they'll be able to talk to their Consultants or their nurse specialist if they have access to one and the clinical team should be able to advise you on your health risk based on your condition and you are treatments and everybody's going to be different and this is something that's important to understand just because you have cancer doesn't necessarily mean that you're all automatically at higher risk. It depends on your type of cancer where you are in your tree log. Journey so it's important really first of all, I think to you know, find out the right information. So you understand the health risk for you. If you don't have access to your consultant or a nurse specialist also, you could find your g p and thought you to be about your condition and what you know things you need to be concerned about because again, not everybody will be in the same position. So it's really important to try and for yourself find out what the risks are for you then I would suggest that the next step then would be to go and talk to your workplace. Now. Your first point of contact is always your line manager there there the person that you know are responsible for you. And so you should talk to them about, you know, the information you get from your your clinicians your GP about the risks that you face and then talk to them in detail about you know, what measures they're taking in order to protect you as a worker in that business now, they have a duty and an obligation to provide, you know a safe environment for you as an employee. And so they need to take that very month. Seriously now, you know, there are also other people that you could talk to in the business as well now depends very much on the size of the business and the type of the business but there will be some businesses that would have health and safety officers that you can speak to they'll be others where you have access to what we call Occupational Health which are you know health services that are attached to a business and you could ask for a referral to your Occupational Health practitioner and they should be able to then advise you and the headline manager about what sort of adjustments would need to take place in order to help you to get back into the workplace. So there are some steps that you can take I'm not saying that everything I say here is going to absolutely help every single person out there with their own scenario, but I'm hopeful that it will help people to know what steps to take in order to be able to take control of the situation for themselves so that they understand the risks and what they can do as an employee to support themselves. I guess that you know birth. Taking back control thing is is is comes back again and again and again when we talk about cancer diagnosis and and arming yourself, I guess with the facts as well. That was there's really interesting thing that you said about, you know, making sure that you are in, you know in possession of your risk level and so it's not kind of something that's a bit amorphous for your employee. It's actually you know, here we are. This is it and it makes life a lot easier. If you go as informed as you possibly can to that conversation, it seems yeah, absolutely, you know, the more you know about what you need to protect your health the better position you'll be in to be able to have a conversation with your employer and hopefully your employer will be reasonable and we'll try and support you every you know, every worker has a value and and nobody wants to you know lose people unnecessarily and I'm sure there are lots of lots of efforts that are being made by employers. You mentioned reasonable adjustments. Can you just sort of pick that apart a little bit about what else that might look like a part-time job? Social distancing in an office space and hand sanitizer everywhere. What else might you be able to have a conversation about? Yeah. Well again just to State again. There's the equality act in in that applies in England Scotland Wales and disability Discrimination Act in Northern Ireland and those pieces of legislation say that your employer must make reasonable adjustments when would work place or work practices puts you at a substantial disadvantage because you have cancer and now and that is compared to other colleagues who do not have cancer. So what this means practices that your employer needs to think, you know creatively and you can think as an employee creatively about what sort of changes could be made to allow you to stay at work. Now the context of coronavirus these can be you know, flexible working arrangements. So for example, you know, let's think about if you were traveling to a job, but you didn't want to travel at rush hour because there will be more people. On and increases your risk then a flexible working arrangement might mean travelling later in the morning or coming back late earlier in the evening or later in the evening. Whatever works for you in order to be able to walk to do your job. There's also very good scheme. They're out there called access to work. It's a government scheme and they can pay for certain types of adjustments and it's called government jobs. Best kept secret in many ways because it's a it's a scheme there that the employer and and use an employee can look into to see if it can cover things like travel you might be able to wage claim for maybe first class train travel for example, or pay for taxis to and from work. If you're feeling that that will protect you and give you more security and that is a reasonable adjustment to suck you to stay in your employment changing work patterns shift patterns providing access to things like software and equipment from home so that you'd be able to do your job from home giving you the song. The computer is everything else that you might need in order to be able or even Wi-Fi access to Wi-Fi. So I suppose the important thing is to remember that anything could be considered an adjustment anything that allows you to keep a job could be considered but it must be reasonable what's reasonable for one employer might not be reasonable for another employer. It kind of depends on you know, how big is your business? You know, the finances the sort of adjustment that you're actually asking for so it's it's it's very like it's very specific to that kind of situation that you're in. So again, you know your relationship as an employee if you have cash with your line manager is so important but knowing your rights I think gives you again the confidence to know what you can approach and what you could talk to your employer about and that's hugely important choice. Absolutely, I guess as well the reality of coronavirus and the pandemic is that not everybody will be having as positive and experience in the workplace. We would hope and if people do end up having money worries, they are there other places that they can turn to what should they be doing initially now McMillan has a range of really great services that can support people with cancer. We have a wonderful team of financial guides and they can explain lots of options available and things that need to think about and things that you need to do so they can cover things like your budgeting and you're planning mortgages what to do with mortgages. Maybe you need to take a mortgage break for a while. They can support you about what song versation so you need to have with your building Society or your bank. They provide you information on your pension. For example, if you want to take early retirement Insurance options issues around Financial products is overdrafts. And also if you have debt and how you would manage your death in the unfortunate outcome that you lose your job. We have a team of fantastic welfare advisors who offer home Ice on benefits and other types of support that you might be able to Avail on such as you know council tax breaks as well. And then we've a team a small team of energy advisers who can talk to you about you know, how did you pay your gas or electricity or water bills, you know, and they're really really great team as well to to call and all of these services are available on the Mac Miller and support line, which is a free confidential find that anybody can call. I think there is some tangible Rising tension as well about the the job retention scheme finishing the end of October at people might be terribly worried about a thousand C's at this time. Oh, absolutely. So well the job retention scheme as as you said or the further scheme it's as it's known ends on the 31st of October 2020 now to end for a low employers should give stuff notice in writing if they're going to end the first game and there's no minimum notice. For furlough but employers they should talk to staff about The plant stand for as early as possible and they need to encourage staff to raise any concerns. They have about or problems around returning to work. So that's that's hugely important. Is there anything replacing it that's planned? Yes. So there's a new scheme called the job support scheme. Now, this is a is a scheme. It's designed to protect what they call viable wage jobs in businesses. There are businesses who are facing a lower demand over the winter months because of covet and it's there to help keep their employees attached to the workforce. Now the scheme is on the 1st of November and it runs for six months so over the winter. So what happens in that scenario is that the company will continue to pay the employee for the time worked but the cost of the arrows not worked. So there's not that they're not working. They will be split three ways between the employer between the government and the employee so the government will wage. Up to I think it's about a third but to a certain cap and the employee would obviously pay a bit too through wage and reduction but the whole point is trying to enable the employee to keep their job. Now the scheme isn't as generous as the previous job pretentious game, but you know your employer may be may try to take advantage of that, you know, if they're facing difficult because of covert over the the next six months. It's a really really difficult time isn't it? And I think in you know where so much is in certain and there is so much with worry and concern on top of a cancer diagnosis having such clear information from you lose is an absolute godsend and from that MacMillan support line and all the wealth of resource that's there so often use it Questions about cancer boots and McMillan are by your side from the moment. You're diagnosed through your treatment and beyond our boots McMillan information pharmacists are on hand with Specialists support from helping you make sense of your diagnosis to advice about living with cancer. You can find them in your local boots Pharmacy or online via video appointment visit boots. For more information. 2018 I was diagnosed with kidney cancer at the time speaking to my boss was very very wary as to to what would happen and especially as I'd only been employed for a months point. My boss was very very helpful. Kept me on the payroll and supported me through my operation and six-week rehab before getting back to work. We then arranged for me to be able to walk home and I got in touch with MacMillan at that point and and was pointed towards a grant which enabled me to set up the desk where I'm sat up now during the pandemic wage and obviously this all came in really really helpful because I had to then work from home and the company had taken stock of where they were and was looking to make cutbacks and and my role and as general manager was identified one of those been at risk and I end up going on quite a downward spiral and struggled mentally and my wife spoke to my GP my wife spoke to in a million and we got me the song. But I needed I've I've found something to focus on a passion that I have where I think I can make my own business and maybe that was the Porsche that I needed to be able to do that. The difficult elements wage is the fear of finding another job and they're saying well once every month, I have a telephone appointments at this time or possibly spend a long time off say coming up still had the hospital visit in between every so many millions a great source for knowledge whether it be Legal Financial and and being able to maybe been an intermediary in between you and your manager page being able to to work out how things can work and maybe see what the future holds look for support. Some fantastic tips there from Richard. Now, there's of course the wider impact of the pandemic might mean that Carriage we you know, we got to remember to speak about carers as well or loved ones are facing an impossible decision between going to work and protecting the health of those in their household. I can't imagine the stress behind that kind of decision off what rights do carrots have. Yes. Yes. So there is a real, you know issue here in terms of carers trying to juggle caring for their loved ones and try to keep their jobs, whether they're working full-time or part-time that's a real challenge for them and they may be required to self isolate. For example, in order to protect the person that they're carrying for. So carriers do have some rights of work and they're important rights to remember as well so that they include the right to request for flexible working or secondly to take time off in case of emergency now flexible working could include working from home. It could include for example, khong Just working hours where you work fewer days, you know, you can press your hours. Let's say into three or four days and you work over four days. You could do some job sharing potentially. That's an option to be considered off or you could consider working part time on the temporary basis. So in order to support your loved ones who your particular period of time but also carries are also entitled level legal right to take reasonable time to look after someone in an emergency and that involves a person that they care for and this includes coronavirus situations. And then they're also laws out there that I also protect carers to the Quality education that I mentioned earlier also protects carers from being discriminated at work because of their connection to a disabled person. So if they're being put in a situation, whereby, you know, they're let's say not being, you know, prioritized for redundancy or something because they're care of their caring responsibilities than that. That's something that they would need to look into but obviously if they have any concerns cares of any concerns in relation to Thursday, We do have a fantastic work support service on our bill and support line where we've got a team of advisors who help people who are being diagnosed with cancer. But also those who are caring for someone with cancer with some guidance about their rights at work and and what they might do in that situation and then carries UK have a wonderful website as well which provides lots of information and support for carers. So I would suggest that they would go back out there to Liz as always absolutely brilliant to speak to you. Thank you so much. You're very welcome. Thank you, For more information on the topics Liz and I have talked about in this episode head to our website McMillan. I'm talking cancer for resources advice and support. It's also a way you can find out more about donating to McMillan in our next episode. We've got Rosie Loftus McMillan's chief medical officer and Mark boots Chief pharmacist back to talk about what practical support is out there at the time when we're being told to reduce our physical contact with others subscribe. If you'd like to hear that and every new episode it's ready. And if you enjoy the series, please give us a racing or a review it helps others to find the podcast more easily. I remember be talking cancer is a MacMillan cancer support podcast off.

cancer Rosie Loftus McMillan Liz Egan kidney cancer Richard Northern Ireland Lee Millen Molina consultant MacMillan England Emma UK Occupational Health England Scotland Wales Mac Miller Scotland
Treatable but not curable cancer

Talking Cancer

37:46 min | 1 year ago

Treatable but not curable cancer

"What's it like living with cancer? That's treatable but not curable. Hello I'm Annabi and welcome to talking cancer a podcast for Macmillan where I'll be meeting real people to have honest conversations about living with cancer in this episode. We're talking cancer with Adam. Let that if I decide in your brain but we turn away is going to have to operate need some and then the Black Sonya I knowledge is looking at Solomon Lipset. And when we're talking potential BRAINTREE RATIOS WENT. Yeah potentially thirty one. Adam Carroll was enjoying life and enjoying a job that allowed him to work in New York then on one of those work trips. He had a seizure and collapsed. And because I work in a quiet environment they will just fell over. Sorry I was on my way down laughing and cheering then and some went on us. Not Normal Adam was diagnosed with a grade. Three brain tumor when doctors can treat it and manage it. It's something that Adam has to live with forever. Five straight on the the triple private travel is maintaining life and always news. We signed to be managed testimony. And even if there is nothing to come alongside Zappia wherever my first molar? Some doesn't matter. How long is you may have seen. Adam on the TV show first dates all from the price coverage which followed a thing. Really take a lot from his story and later the kettle on for Macmillan Professional Dany who will be here to talk about the one hundred thirty thousand people in the UK with treatable but not curable cancer. The biggest impact is living with uncertainty. And not knowing. What's around the corner even if you'll responding to treatment you don't know how long it's GonNa be Forum for some people. They find it quite difficult to get their head around that William McMillan and we're talking Cancer Huh. Hello Life it's lovely to have you with we all get. It took a lot about your cancer during our conversation. But let's start with life before cancer. What will you like back? Then what was your life like? Let's go that. New is now but just minus the cancer. What what kind of a person would you say you are really? So how old are you five? What do you do for a living work for stockbrokerage about the gatekeeper side of it? You know I'd say the moneymaker said. They should've worked hard. Say to myself every day so in New York for you. Stay in a hotel where you with friends. I mean life within hotel but really swanky hotel as working out there yet. This is absolutely brilliant. An messed up didn't miss out. Don't be silly. Was your life going to plan. Then what we all kind of hopes and dreams I spill. The plan is just was just like today always was on. I think and my more than ever he always will be. And you have your family your brothers and sisters. I would probably older sister. Mammoth at the down. Ken I'm a mom and dad quite pleased with the way Adam Gorgeous. Son's life was working. You'd have to ask them not to extend American. Was it more like I'm fine. Code has been sacked. Let let's talk about the day when you collapse them because this is where everything everything changed with. Was there anything that you had noticed about about how you felt. That could have predicted this salute. Nothing as way to swing. Because I didn't even have had I feel I didn't feel ill whatsoever. I just stood up in your office today to some of the best can try them. They're not actually a member not being able to speak and I stepping up my words and can't remember claps him and because I work in a quiet environment they will just fell over. Sorry I was on my way down Nakayama laughing and cheering and some went on us. No lie on the floor convulsed today and from from that the the memory is a little bit closer and then blackout and then next K. memory is on waking up surrounded by New York. Paramedics dramatic film but it is quite dramatic. It's probably not nearly as glamorous as it is. That is quite dramatic and you know a few to be so ill far away from high So he had anybody come with you from the offense when senator combined an NBA wants everything that happens and Arkansas. Spill and been diagnosed was the company took steps to get my father out to be with me. Okay so you you being dealt with by the paramedics in New York. What are you hearing about what they think it might be? What are like the pit with the paramedics but when it got arum stuff like that and being blue lighter hospital it's all a blur really. I remember I remember trying to speak to my colleagues on. The New York office comes with me. An connor remember China. Talk to as if to say you making a designed Yeah College. Go BACK TO WORK. And he was just like no. We have to do this and then I remember hospital and there was a nurse. I spoke to rigidly. And she's like we'll see signing sap wounds so we're GonNa have to do a scan on you at that point and you'll conscious by Ya. Fully aware of the conversation is putting and at that. Point is like quite quite flavor through quite pretty quiet. She was laughing back and she's really cold. And then our heads my scan comeback up that I must have been our lighter Aaron halfway or whatever this is all happening this like that. Luckily soldiers blur and and the same nurse. She says all we've got your results are how kind of the main change to the point where I was like. Yeah I was like she guises SOMAC-. We've let that if I decide in your brain but we don away is going to have to operate. And then the Bob Sonia Oslo. Yeah exactly that and I was looking at. She realized Solomon upset with talking potential braintree mercury issues. When yeah potentially how did you? Why did you jump to that conclusion? Whenever you got inside suicide crazy we'll is going to be saying really really bad. Jeremy alcon wouldn't just collapse overhead. So yes my mind is like the worst case scenario. We you in pain at this point. Nine zero pain and enough. That point hasn't been didn't affect your movement that is It's about right about Iraq. If you have a seizure obviously then let your speech because I wear my brain. Jeanmarie is is in an area. Brainwork affects your cognitive functions. Speroni's say things like balance walk in talking and stuff like that Not Not all. That was fine. Believe it or not hearing voice now. That was for a very very through few hours. How long are we talking in between you hitting the deck at work and going into have you think so probably collapsed about one o'clock in the afternoon they WanNa Cook? Let's be appropriate. Oh by God and I come out of Kasey they put me on the the the brain surgery. Come out of that fully morning and by that point. I'd already got my dad out to New York did you. Had you had a chance to speak to your team dot com. Yeah because it's all just like who hands on deck because see what I've got going on or had no chance to talk to anyone like my family or nothing. You must have been terrified. I was is the most multi life by mile absolutely. I can't believe you didn't have time to speak to anybody that you know what I think it was. I'm a frequent in that situation. They dislike when you see this dude I was was. That was on the cards. At that point was that somebody mentioned we need to do this? Because you walk critical Ni- Ni- wherever it was the case. Oh no diaper. They never said anything to me. They said time is of the essence. And how how does American emergency surgery situations compare have you? Uk We well looked after. Did you feel like you're lucky enough? We get private carefree work. Say We was look house looked after. Reread well out there. And did they. I mean at this point. Were they using long? Words that you didn't know did they. Were they examining just in? Let's do this man is like very simplistic layman's is just like this is this. This is the south the Bob. See so the guy popsy this is novel Mac. Caveats while Vince I. It was all meant to be a little spice happen in New York. His name he's literally the most famous brain surgeon on the planet. Dr Theodore Schwartz. So I'm very important so I was like who is just chomping. My head open good with in hospital. And he's on Sky News. Cnn order talk in America like the Oracle of brain surgery. So I was like yeah. He can come ahead. I've been again so I if you're not cultural gain you can. They then do a biopsy the you're awake for Yes not fully under because You levels and stuff but yeah as close to being under as you possibly can actually being under but not to the point where I actually remember him doing any surgery or fell anything about yeah pumped me full of some ridiculous. She stronger trucks. Because I said when I wake up I was trying to take them on my cable's out stuff like that and our sign. I want to go to up and this is a reaction from the medication. You were taking your all your line for a Guinness. I mean to be honest with you. After the experience thus far I think most of us would be reaching for a strong GIN and tonic. So you got the biopsy. You've got the incredible doctor but this this whirlwind has got to come to a point. Which is your diagnosis. Yeah so at. What point are you told the? This is what you have wanted. This as I sought after the biopsy soda is a gray free greatest. I'm a brain SHAIMAA. Fatal shoots again said Ball. I can cut more. So we're GONNA put you back here from Oh surgery. And that point is that she more scattered at one. That was the first because remember the first one second one night about free. Think of it because By said Yeah. We're going to get you back. Eight and feet. I signed up you get. He said I'll can take more of the chamber out and then let it be on your merry way member for free days sitting in a hotel by my dad loss APP. See Myself and an well. I mean you know everybody that we speak to. The wait is the worst. And now you have your dad there as well so the world is a very different place all of a sudden he might. He might be like a holiday. We were at Central Park. He signed picking up pictures you wanted to buy from street sellers is that for a while with haight. Do you think did you did you. Did you talk about the important stuff with him on those three days or did he try? It's a we'll figure is aware of it. It and it. Kinda got brave mentioned Buffett. Buy Because we're not very good relations stuff that side who is like. Let's just get drunk and worry by reading New York exactly? I wanted to see what hotel from highline and stuff like that. He wanted to Wat- my husband. Damian would do exactly the same thing hilariously. Christmas is Christmas without home loans. That they were trying to find the bridge in Central Park. Mike in this means hopefully she might save everybody. Who Needs Dr Schwartz the pigeons? So what do you at this point? Now that you've been told you this grade three brain chamber you don't have some more operations. What do you at this point? No about what that means to you. So I'll say cognitive googling newness everyone can up. I didn't scare myself more and then realizing the you can treat it but you'll never fully go That point Oh yeah this is pretty rubbish and then but yeah so after this law freedom more surgery he comeback. He said that he said he's delighted of height. Would he said zone? Eli residual cells left the so cancerous he says but we've right effort became a for. Ap that should be like under control. You'll be absolutely fine. He says I'm happy to send you back to London. Amazing so they're right here for. Joe Is pretty naive. They ready for came for beefing. This will get rid of it. And it doesn't it just manages it and as an is the reason why you thought that because this this phrase which is treatable but had not been fully explained to you at that point and actually that probably when somebody says that phrase you for the first time probably quite it actually is not as specific as you might imagine. Personally he made the most sense abuse oncologist at Macmillan Moreland 'cause he said the he said Oh. See what we're going to manage this retreat is. We're going to manage it. You guys by one is one is you would never ever get a full clear. I'd suppose but at point US except in Affleck or is it a point whereas I will everyday's a bonus say just treat me. Did that make you more all kinds of more determined to live your life. Well daily basis ordinary people say they get hit by a bus. Tamara is vice. That -ality overseas. It's not like I could just got pie and leave a playboy though some treatments. I'm feeding pre pre RIPI for all of it but they kind of just get to the point where it's like see what he's wiping. Praise blessed to still be and so. Let's talk about the treatment the managing of the year. So what does did you come up with a plan to buy? Give you a plan so that you knew what you were. Yes shorts in New York said the said the best course of action would be to do right affair P. Khaimah therapy doctor. Muholland come up with a look at a time plan for that. So that took. I think nine months at the same time because what we're learning as well as everybody's treatments to you tomorrow was for days in a row of whoa right effort going into UCLA. Ch- everyday for days getting zapped and a guy and I think it's maybe a month break of that okay got inside the McCain for a p which is Oral Chemotherapy. Say taking tablets at home. So that for twelve months maybe stay with twelve months. Knifing talk maps exactly and then after that Dr Mohamed suggest is like who'd immunotherapy which is Well I mean mostly my I should I more schools have been doing it targeted combinations of drugs which I suppose is really used for brain tumors by Dr Mohamed and say because Iraq did so well to. He felt comfortable enough to be strong enough to take it. Are you working through this time for the first nine months? The rate of therapy chemotherapy. Night work gave me that time of. How were they were? They were a London. Got ripped a little bit as I. Anything for. A DAY OF FOOD. Science stuff but My work have been amazing. Saddam went down Whether my need for the first four months that are more intense than the rest of the things I work at four months of. What do you mean by that does that? What do you mean by into hospital over? A billion in getting your treatment site as site spent over the course of the year two different drugs but first full mumps every two weeks for you weeks. It's like they. Crime it within its star. Yes it's make it more bearable for most. And how is it? How does it affect you get Kinda? Give me kicking three days. It wasn't nice. Tie Tie aided by you'll be sick. 'cause it's a cool. Ivankov MOMS and you get scanned. Quite regularly The proof was the spicing. It wasn't doing anything. Just let stable size. I I'll take any kind of sickness thanking those little wins really points where I'd be like frying up or feed inaudible and I'll be like what's the point and then I guess that's the point a wants to exactly emotionally around. You know the you know you died in you know. That's probably the the way that most people are and you just get through it. What about your your wide family? What was that like kind of breaking the news to them if they so when bumped up meeting New York? She get quite badly but she was like the retirement. Age guys take retirement. Just how it works. Because I'm not coming out. This guy is is nice because concord straight because Adams where he is so she retired side. She is me Barbara. Sister Sister said she was actually in pieces when it found out what happened in New York which I wasn't surprised about Bravo said the same thing and I was surprised about because again as one of let me kind of thing. Basically he him really hard and then I was if he wants about. Food is an issue. I think that was as scared about me in the treatment as I will. If you've got your pipe until I saw you can take a few TOPIX. Say off that I think it will be and I think it's going to point where I kind of forget how she was just like hanging person. Yes on and say you know apologies for the the phrase but you know you'll you'll brain does tend to forget on purpose. Yeah everything well and this is I mean this is this is the the you know how the how this is affecting you on a day-to-day basis. So you must miss work. Yeah I'm sure in that environment with everybody. It's actually just being off work and not being around people I get back. I'm in favor and I like being around. People are chain Goblin stuff sign those contemplating life of living cancer. It's not ideal for me. It's not what did what did you do to relieve that. Start running. Okay I get fit and healthy so you could. He run for a bus decides running around park every day. Is the goal from this year. Oh you've run a run walk. Yes cold well. I'm the best of luck with that. So how far can you run at the moment Regularly run so ten K. Hoffmeyer funds before so Nakal half-marathon score to us. She Best Ten K. Time if the minutes maybe yeah okay as a while ago. Haven't done a guy. Are you the type of person that needs a goal in an audience? Yeah Yeah Yeah no my my other half is exactly the same So the running is keeping you busy with good keeping your trouble And your you needing to be careful about what you eat. The pork scratchings in the pint may have gone so I actually don't six months of night drinking Quite recently skit thing here and in spy went full football in salads and stuff like that are now for some kind of like reincarnation of God and the Christmas drink and again so so we're not a window in when you're in treatment as well. I'm sure you have to be careful about what you eat. Yay ECON tycoons everyday. So they what. You're eating a lot more because I mean obviously before everything that happened. I was just a standard working in. Yeah just like tyco every lunch. Just coffee coffee coffee coffee. That happened. Okay Office party more To kind of help about do you think what's happened to? You is affected group of mates as well like giving them a an opportunity to reassess their lives. Do you think I think so I think in yeah I think in half of cases? There're I think there's people that were kind of on the verge of that mindset anyway and then I'll see this happens and I say however reacted and what I've been doing. I think that's giving them a little nudge to kind of see what they was kind of thinking of John by people POWs who will pop pop pop football that kind of stuff once you kind of like wanting to get away from that. See Wild and free and as a at she. Wink nudge in the ribs. Get fit they look after you so I ate are. We couldn't do this reply and goes still were still lacking on that from our first dates was selfish reason behind it because looking for love but also because I think that happens and cherries kind of got wind. The my story they knew is applying for it they vote and as I quiz us a like as a fico study and I was like yeah of course I was. I bring wider attention to braintree stuff like that and I was Kinda got in Shifu. Laugh now actually. It's a pretty big platform. He's very popular shy. People people will see so it's like Yay an ideal Charles to get my story out there and even if one person saw me thing was and ask you and I were. There is hope kind of thing though. Yeah right well we need to sort this out anybody out there. So you know what? What sort of reaction did you get your the poster boy for brain Absolutely yeah like Wellman. Just yeah the reaction of people not social media which is like nothing I ever expected whatsoever. It was a melon are doing a lot of work to raise awareness of treatable but not curable cancer like yours. Adam is a useful term when you're telling people is because for Kazuyoshi you get people to see in that I think. Look ill you must be back on his trip curable. Release that kind of insinuates? The there is no like end. Care kind of thing by just manageable but like come come this for free years basically since smart devices and I still feel waffle but never For if I was kind of benchmark to get somewhere than any head you baby by this time is six months or twelve months. They'll be kind of new treatments and stuff like that and I think it's happening more and more now. I'm not saying it's GONNA come out and it will just be. Branching was done golfing. There's always hope thing. Well I mean you know the immune the accumulate for immunotherapy thank you. That's quite new locker trophy. Lot I think about is quite pioneering. That's really interesting as well. Because I guess I'm the you know the treatable but not curable tag Could quite happily sit really heavy with you. Make it very difficult to kind of look straight on the the triple Pavitt. Trouble is of maintaining alive and all eyes news we signed. It has to be managed for similar. And even if there is nothing that can come alongside zapping wherever you for a small Sarma. Formiga does matter. Hold on is very proactive person. I just we'll just get we'll just do it. We'll just do we have you other people with this condition is you and has that been has been helpful so a friend of mine. She does a lot of work for a lot of community law. Remond and yes. I see regularly does Get togethers and she does not shirts and stuff like that. So met hundreds of people in the community. And we'll still in the same boat and it's not by anyone most obey. He just kind of get them they make some people and then you like you make people think you're really well or not so you have like you have like a down day number person you like. Oh actually got nothing to mind about. Wow you know. That's that's the that's that's the strength that you get people in in the similar at that have similar conditions is that everybody has these good days and bad days. You know when it's when you are given that I noticed that is treatable not curable. I know that some people in the past have kind of you know felt very had a very physical relationship with with the tumor with the cells. Still there does it do you. Do you feel like you need to get rid of it the whole time or you out one thing. I'm the point now where it's just like every time I have a scan. I say it's not doing anything. Find you just keep on doing anything. Fine your carry on all day. May that's really free month's time. Yeah Yeah yeah absolutely. And there's there's you know I suppose that the big questions the big questions in Life Adam It taught now I'm not talking about. I'm an Aston Villa Fan. I can die. No I have to carry that cross. Okay can you pinpoint how this is really changed your life apart from you know the obviously martier physical aspects of in how that has changed you but has it changed you as a person I would say no loads of people would say yes. I think that's I am a bit more than a bit more people carrying bit more like white about other people saints have been more of a purpose in life. Which is why I'm doing stuff like this. And the future before this liaise absolutely no. I wouldn't like maybe on Friday night at ten o'clock. I'm you all daring to forward to that. And what what does the future? What's on what's on your horizon? If things you want to do a go you got him back to New York. Anytime soon. Disinfects collapse again? Life each goes I've seen a marathon is the mice of upcoming one am beyond just livers. Life is no more possible maybe going first dates again on just for the rankling without him. He's still young for using birth dates. He brings in ice to talk to you. That was been really really rely on. And we wish you all the best. Thank you very much dany or Macmillan. Professional is back with me. Hello lovely. What do you make of Adam Story? Oh really really interesting and slightly different in terms of being diagnosed in a different country but amazing that it all came together for him and also that he got such fabulous support from his employers. Very bizarre how it all unfolded but you know in the right place at the right time. Thank goodness so we're talking when we were talking with Adam. You talked a lot about at the phrase treatable but not curable cancer. What does that mean? So essentially years ago those types of cancers often meant a Qua- a poor outlook on people may have survived a year or two but with new treatments. What we're seeing is that people have options for different types of treatment. The cancer will never be completely eradicated so the term treatable but not curable kind of identifies you know that they can have treatment to keep the cancer at bay or control it or treat symptoms but it won't ever advocate cancer at the point at diagnosis. Would your Doctor Tell You That the CANC- you heartless treatable nor curable. They might not use that terminology in essence spot. There are some Kansas where it's fairly obvious that they're not curable and also the stage of the cancer can indicate so it's dialogue that might need to be ongoing so it might be. The first conversation is around that staging and that the hope is what? The treatment aims all but sometimes if the person kind of is asking all the right questions then absolutely the commission will be as open as the person wants them to be so it might be that. It's it happens in two or three conversations rather than Bam right at the beginning It really depends on the person the type of cancer. I'm what treatments are available. Because they may not be a hundred percent. Sure what type of re response someone's GonNa get but they would definitely be articulating. The of of the treatment is to hold the cancer at bay manage symptoms. Even if they don't say the words treatable but not curable and it's important as well to clarify that treats will not curable is different to terminal. Yes I mean when when when somebody is not going to benefit from any treatment the term. That's probably used as Palliative and supportive treatments so you might still have chemotherapy or radiotherapy to manage symptoms but the aim of the treatment is palatable supportive and give us a sense of what life looks like for someone who's cancer is treatable but not curable. I mean you know. He's he's a he's a from this and he's got his he's got his life and he goes well go football. He has made adjustments. But what would what adjustments would you expect somebody going through that to have to make? I think the biggest impact is living with uncertainty. And Not Knowing. What's around the corner Even if you'll responding to treatment you know how long that's going to be for what we often find. Is People find it difficult to plan like we would plan something for next year? You know for some people they find it quite difficult to get their their heads around that I mean Adams actually adjusted and worked his way through that and I guess the other thing is the. They're often on constant treatment. So some of the treatments available to people with incurable cancer. They have to have for a minimum of two years. Like the. Yeah with my little understanding of immunotherapy during during that time you know you have to really look after yourself. Don't you yes. I mean I mean we even with other types of treatment and with any type of cancer. We know that if people take care of their physical and emotional health and the general well-being they tend to do better and there is research in some Kansas. That it does help you know. Hold BACK A risk of recurrence CETERA. So so taking care of yourself. Your physical health is important. What are the different treatments? That people might have then in Adams case. Because there was that was a patchwork of different a different treatments that he's encountered so a lot. A lot of chemotherapy. Regimes are a combination of drugs. And they all have acronyms because a names of the drug saw a mouthful but it's not uncommon in some types of cancer to have what we call. Neo Chan treatment. So That's chemotherapy or radiotherapy. Both before you go on and have surgery. So what what's the purpose it? What's the purpose of that then before surgery because my my my head? I'd be like that. No you know surely you need to go in there and cut it in in areas where things are more difficult to do surgery because you've got lots of important structures around trying to kind of shrink down the tumor sewed. It makes the surgery easier. is why they do it in someone in Adams situation. Then what kind of support might someone need with this particular type of cancer on? Where would you go to find it? So if he was looking for help with a physical animation or impact is. Gp is place to start. There's lots of local support services that will help somebody Equally he did find his own way and some people can can do that in terms of some of the cognitive impact of having a brain cancer that can be more difficult again. He might want to have a conversation with his specialist team more. He's Jay Petty because Thou- that'd be more targeted support. He was really lucky in that. He had really good support from his employer. Unfortunately isn't the case for everyone but you know he. His story does demonstrate. Actually if you have a good employer with good support it makes the world of difference. Khloe and Adam have found a lot support in other people in their situation. How do they find those networks? There's lots of different ways. People find those networks so that sometimes they find them online and using social media sometimes they connect with people when they going for their treatment because they're all sat in the waiting room and there are often local support groups and again. It's about what's right for you as an individual because people will want a different Approach but actually. That's not uncommon and lots of people really value peer support. And they also like to see and connect with people that are further down the line so that they can save people have come through it and as things stand with the current treatments available there will come a day when someone with treatable but not curable cancer will eventually reach terminal phase. A how. How does the system deal with that? They consultant or the conditional the team supporting the treatment recognizing that treatments not benefiting the person anymore and I guess the person themselves will have a sense of fat that I'm actually. They're not getting the same impact from the treatment and conversation has to be the K- And talking openly bounce it and allowing the person to make their their choices. There's lots of support out there for people to kind of Live their life as fully as they can right up until the end and it's just about having the conversation I think with either the or The the hospital support team. That's been supporting them to help them find. You know the right support for them. Dana thank you so much such stabilizing voice in all of this confusing terminology in these incredible stories. My thanks to Adam for coming in to tell a story to get more information about what we've talked about in this episode then go to our website. Mcmillan DOT ORG dot. Uk forward slash talking cancer. Next time we're talking life after cancer with Erawan came in and she sat in the car with men and she looked at me and she said look old years I've been with. You're never seen you quit on anything that you've ever done and they're quite powerful words when you open your eyes out because I stopped crying immediately and I looked and I thought you know is this her way of motivating me because if it is then I need to take. I'm Annabi and talking. Cancer is a Macmillan cancer support podcast

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End of Life

Talking Cancer

40:45 min | 1 year ago

End of Life

"Hello there we're talking about end of life with the lovely Max on this episode so I would like to warn you that this podcast contains content which might be upsetting for some listeners. To be honest I struggle to keep it myself during the recording and if you are affected by anything you hear of fantastic McMillan support line staff can help give out the number at the end of the podcast or you can find it on our website. Mcmillan dot org dot UK forward slash. Talking Cancer Okay. Let's get started. Hello I'm Annabi and welcome to talking cancer a podcast from millen where I'll be meeting real people to have honest conversations about living with cancer in this episode we're talking cancer with Max Sitting Rhonda. I'm hostile bed. Coventry are then one of the star to cry immediately. Do the same thing that those. I'm sorry and it straight away. I think there's no it's gonna be rubbish is so we'll cry together just over a year ago. Matt lost his mom Nand Breast Sarcoma Cancer. She'd successfully overcome it two years before a Max was initially optimistic. We've done once we can do it again. But I didn't actually last too long because I'm just having some trouble breathing and your database told it's it's too late on this time. Nothing's GonNa work. Max Talks about going. Through a period of pre grieving mourning the loss of a loved one before they pass away but it was a period where they could all talk and plan as a family. I suppose lucky in a way that we could on mum's funeral with her. We don't need you like five or ten minutes at a time could get too much for all of us but it was so nice that we knew that the day when exactly how she wanted to go if you'll having to contemplate the end of someone's life perhaps your own then. I think you'll find Max's story very inspiring and later a lovely Mellon Professional. Dany will be here to talk about how to deal with the end of someone's life you need to be very aware of your feelings and know that it's okay to be sad and if you're struggling to pick up the pieces then there is lots of support out there women. Millan and we're talking cancer Max Welcome along. Thank you very much for coming. It's lovely to me e I'm I think we should start by you telling us about your lovely Nand. What was she like? She was full of life as she had bright pink care so everyone says her favorite phrases pink and fluffy so she says to everyone. Yeah so she loved drama say she ran a youth theatre she lived in Cypress. Yeah she was over in England for a couple of months. I think Coventry as where we're from originally and she was one of those like live action actors in Warwick Castle for free just for a few months. 'cause WAY WOW okay. So she was Mary. Queen of Scots. Saw someone lying if you look with bright pink hair yet very much? I get the impression that you quite close family. How many brothers and sisters do you have? Were you around each other the whole time? We already co still. It's my dad and my mom and my sister Ruby and me just as for so and we all live lived apart. My Mom and dad lived in verse. My sister lives in Coventry. At the time I lived down in Eastbourne we lived all over the place but we all met up at least once a month so it was really good. Yeah Okay Now. You got diagnosed not once but twice. Tell us about the first time. Initially it was just breast cancer and it was well while still in the army and I was just about to go to the Falklands to six months so yeah they came visit me down to Southampton as far I was at the time. And that yeah. They broke the news to us and devastating. But we didn't really get down. I I really face anything like this before. And we're really really positive family light if I came back from work or school or something and was negative or saying I didn't like him. Adobe like name enough of that home repulsive family so we were like that straight away. The first glance assay although it was sad for honesty about half an hour. We're like right. We're going to beat this. We're going to really do it. So didn't really feel that real. If you know what I mean. I'm Am for you at that point. Did they come to the radio armed with lots of information and answers to questions that you might have what the treatment might be and and that helps you kind of say. No no no okay. This is going to be okay. I think they did it but I think that. Sort of blind positively hadn't even ask I think it was a bit of a shock of. I didn't really go into much detail really. I was just outright. So how are we going to beat it? And and she did get better yes. It made a full recovery. I think it was nine months to a year she was. She was meant for a checkup and the doctors know they couldn't believe it. They're all. The team has gone started with breast cancer. But then she went ashore. Had OSTEO sarcoma cancer as well and yeah I think she had ten tumors at the time and they'd all gone which was crazy. We were so happy. So this leaves you as a family so shaken but resolute. I'm ready to carry-on And how old is is Nan. How hold is your mom at this point So when she beat the I would have been about fifty two and wish she would be affected by the treatment. What she did she seem to be a self looked with any sort of lasting symptoms. That made life different four. Join get she was. Yeah toad in ourselves sleeping all the time but afterwards no she was back to normal which was right and there was no reason for you to think that this was going to come back now. We didn't think so. Now it's you and I do have something in common because my mom died at sixty two with first time breast cancer and then the cancer came came back and I know exactly where I was when we had the news. It come back. How did the second bit of news come to you then so it? My mom was just had some back pain. She was complaining of back pain so she left it for a bunch of cancer. Say It doesn't say she like no don't need to get that checked and eventually she was is quite need to take some painkillers. And my dad I think then took her in hospital and then that's when they did some scans they found out it come back. Yes Sarcoma Cancer. The second time I mean that must have been so horrendously disappointing for your mom for you and just worked so hard. How was it? How was it for you all at that point being given that news the Yes for a second time? The cancer had come back. Initially it was the same as the first time we well go. We've done at once. We can do it again. Right didn't actually last too long because I'm shocked. She was having some trouble breathing and she had to go into the database. He told us it's too late on this time. Nothing nothing's GonNa work. We then had to stop this positively because as I said before it worked once we. It was sort of blind positive. We can do it that we actually couldn't this time emotionally coming to that conclusion especially if this is your mom especially come to that conclusion as a child must have been really hard. Yeah it was really tough are remember clear as they were sitting Rhonda hostile bed in Coventry. Then I think one me and my sister even my dad's one of the start to cry and immediately do the same thing lows Dr. Sorry and a straight way I think as my daddy said no and then he started crying. He's like no. Let's stop this now with is not strong to be to hold your emotional stiff upper lip or anything like that. That's just have a cry. Then he's GonNa be rubbish is there's no say in it's going to be good for. Let's just if you're GONNA cry cry. It's not apologize for it. Let's just say we will have to cry together For and then yeah she was in for about a day then and we were always just having these conversations talk in and so we don't have very long left until it was. It was widely nice. It was horrible but then it was nice to be that vulnerable with each other. We'll talk about your blog because you've you've written a blog it's it's amazing and and I'm sure has been a great help too. Many people have read it that bit that you are describing Which enabled you to have those really a great quality time with the remaining time that your mom had you describe as pre grieving. What what do you mean by that? Yes I think I don't know if I made up. Maybe I did. I think Max. Yes a weird thing to vote yes. I thought it was really strange because you knew we knew mom was going to die. We given three to six months and so we knew it was going to happen. So you're already kind of sad about that so you know you're GonNa Grieve. Once she eventually goes. Then you're already sat about assault preagreed and at the same time. It's a really really weird transition and I'm sure you were the same when you were in that stage and many people listening to wherever. It's so so strange because if you want to be normal in have the best last few months but at the same time your stupidly sad about it. I think thing is as well is the. It's such a an unfathomable idea that some of these going to die because I don't we don't know what that means. You don't know what life is going to be life when you know when the no here so difficult to pin that down and work out. Our isn't at this time. What did that enable you to do with your mom so we allowed us to have an actual great last few months and we saw so much of our friends and family who came to visit because we are so open with. What's going to happen? But then it's also really helpful for a lot of the actual grim stuffed organized the funeral and stuff like that and you use some of that time to plan. That didn't yes. Oh we we saw. I read somewhere on line and video camera up in the corner of the room. Totally about this is such a great idea. Honesty so happy I read and I said to anyone who's going through anything like this. Just do it. Because I'm not saying let's sit there like act in front of the Cameras. Usually on what you're doing the normal daily life. It was really good. 'cause you watch it back and you just see normal conversations and chats and I made I was really make an effort to get mom to talk about all the stuff like twenty years ago that we didn't really know about even really boring stuff like buying a house and stuff because my dad's memory is all full of oats guy talking and laughing and stuff like that also like that. Yeah they're really hard conversations. I suppose sort of lucky in a way that we could plan mum's funeral with her into so strange and because it's horrible compensate. We don't need you like five or ten minutes at a time because it would get too much for all of us especially in my mom but it was. It was sort nice that we knew that the day when exactly how she wanted to go which is weird. Nice feeling but Having a few if you have the capacity to during final months in a few the capacity to talk about you know dying well Then yes you should and and I think it's amazing that you manage to do that all this time. I'm sure you really should've hung down as a family And use each other is huge support. Did you get help support from anywhere else because emotionally for you even though you've got this framework now which is super helpful. I mean all this time you're still going to work still having to be Max as day-to-day maximum your responsibilities to your other half in your friends. How how did you manage to to cope through this time? So initially I was actually a look back and think I was quite stupid at the start of it so we are really close family And I had the best network around a wider family as well as all my aunties uncles cousins and everything who will live really close to our house and call them anyway. I had my girlfriend now. Wife I had loads of great friends and closes people my dad and my sister but we even open most of the time achy feeling bad personally with three of us didn't talk and since then we all spoke. We thought we had to be the strong one which is absolutely crazy because there's nothing strong about not talking about stuff. I'm so at the time I I didn't just I wanted to talk so I didn't know so. I ended up text in at the mental health. How I think it was mind. the I. I didn't feel comfortable enough to admit there was not much of a problem So yeah I didn't want to actually pick up the phone and speak to someone like that. Which now I think's crazy i. It's so important that it started off with just a text and then I won't mind chatting with them and it really helped me out sometimes. It's just having a bit of a Mon to hell and I wanted to play the victim of supposed because it is a horrible situation and it really helped then more recently actually a year on from that so yeah last year. I thought that's fine. Go in like talking more evening about it like yeah like doing a blog and stuff like that really helped me. But yeah then since then I've She went to GP. And you can register talk therapy. Which is really good. I I haven't. I've only just made that step because I'm fine most of the time but I sometimes we'll have a chat about so I booked myself in. We'll see how it goes. Yeah all I say to. Everyone is just taught someone fine. That's on whether it's text all CIA chat room online or call and someone need to because it takes you very unaware by it. Doesn't it because sometimes you have those days? Yeah Yeah Yeah Yeah Yeah. Yeah and they'll just be something that you go. Oh my God and that huge hole is there again And and that's that's time yeah due dates and time for yourself as well and because what will happen with meals drive in one hundred eighty miles home every week so I have at work? Nearly shift to work have drive up that day have two days off. Then at the day after the Lakers. Then drive day to that every week for two months or something and it got to the point where among could feel me being stressed and detention they even I was there absolutely knockabout. I wanted to be but she then feel it then she would like be down as well so That point I think my my partner was like we need to do something and so on one of those two days we actually drove over to Paris and we had a couple of days just for us and I I did feel really guilty at the start of it like driving over those. I should be back home now but you just need that time for yourself as well and it rubs off on your loved ones as well. So it's so important. Did you ever get to talk to him about how you felt? Nah I didn't I didn't I didn't either. You don't really want to get down. And she would have here Sunday. She'd be really up and Marie happy and almost I'll come for trying to normal stuff like I'm coffees and stuff like that glass of red wine with her. Sometimes she would just crying and be quite worried or and yes. I didn't really want to add another burden onto it sort of thing even though she probably would want to talk about really but you just feel like you don't want to burden them. What kind of things was she worried about? In that time she was really worried about is all being happy so as I said before a lot of it is a blur all around that time and the one thing I remember is I was out there. I think it was just me my sister as well as you just. Aren't we just watching? Taddeo FINISH TURNED Rhonda maximum. You'RE GONNA MARRY NINA. Aren't you ought to know mom? I haven't got a clue. Virtually any girlfriend at the minute. I'm not thinking about that. She's you're happy there. Aren't you know it's like yeah? I'm really happy. Interest rubies got. Tom Said rubies my sister and her boyfriend and they've got two kids together. She's got Tom. She's happy isn't she? And that's going to be arising. Yeah I should say. I'm happy now as I was really cute. But she's making just making sure kids are okay and he's GonNa be alright and how the wider circle of friends Reacting at this point. Do you make an effort to get people to see each other as well and with the knowledge that your mom's she is going to die at some point and you know now is the time to come and see how we choose something facebook. We'd we said bad words were. I'm sorry it had to post this. Everyone but cancers rid it's ugly head again but this time we haven't got long left a tool so if you want to It sounds horrible but if you WANNA come and say goodbye visa please do. And it was amazing. That was my sister had to keep a diary. I'm a a secretary literally idea so personal assistant. Say The people came from all over the place. So obviously we as we said. We grew up in Cyprus so we had loads of people who are still inside. I bet there's a lot of military they then flew all across the world after that people come from Yes I press Austrailia around the country. I'm just come visit which is really nice but yeah points out at the same time and all. This is leading up to the moment that the among Pasta. Way And yeah. I'm sure you quite a weird very strange moment. Where were you we with her? Where were you when the news came that she died So yeah I wasn't. Actually I was home on a day off an eye that this is really strange as well not day. I didn't have two days off neuro for some reason was I couldn't drive up and Coventry and my partner was going to go to work that day sales like I do today and it was. It was cold. It's February twenty seventh MOMS I. I thought it'd be nice month. So I was like mom would be like with a stint Bedouin. It happened but then I was about go. Get all my jump as I don't marry anymore. My Christmas jumpers going give them homeless people. I remember that because remember thinking the mom would do. And then my dad called me and said Would take hostile. We don't know what it is. I'm probably make up here now as I care less straight away then got another cool about halfway up having Australian. It was when it was awful snow as well very and twenty eighteen Yeah then of the news. Well let's drive in probably Stockton by didn't want to get there. So how'd you digest? That Max was. It was really really tough. I didn't I didn't I should've stopped. I did and I sat on our hands. Free car driven. It's not really much on the phone. I said I'll be there an hour. The border my eyes out feel at drive in crime is a muscle. Strain was driving past thing that was going to a break up or something. I just felt really numb the whole day. I got to the hospital and all my extended family ruin the waiting room. Then yes straight in so my mom before. I didn't think I'd want to go and see her. But it was the best thing ever done chills. Compared to what she'd been Laffy weeks she'd been struggling to breathe and stuff like that where she missed pushing on a different areas of our body and disorder can totally piece phones looking to sleep and not ill anymore. So I'm really glad I went in there actually. I'm glad you said that I think it's really important You know The the concept of seeing a dead body is terrifying. Let alone when it's somebody that you love so much And so a very brave thing to do but obviously hugely important for you. Yeah I I really did not think I'd want to go in but it was so it's just so peaceful don't they And one of my last. I liked that one of my last like memories. I can see. It's my eyes of my mom is looking healthy and peaceful empain and swollen with humas and things like that emotionally immediately afterwards for lots of people. You sorta go into automatic mode There are things to do. emotionally immediately afterwards. How how were you after that day when you said goodbye to your mom felt really numb? You didn't know what to do. Doritos macron's drive up to be honest But then yeah. We went home after an hour hospital. And then we will just sat around. We're like what to do now to the pop out pint. Just as three then my uncle and cousin joined then straightaway plan. And we'll I roy we'd already planned to euro. We'd fight funeral director. We'd go with Mama trays and a pink casket. Obviously pink really awesome. Yeah she we knew. We had a list of stuff. We're going to do and ask them. We just booked all yeah the euro. You do go into automatic. Just let's do this. Do this last disaster to distract yourself. Some people talk about some people talk about a sense of relief. Almost then feel guilty about that because you know the suffering anyway has has stopped. But there's a little bit of should I should I feel relieved? The do it doesn't that income for few days. Me As I said I've just I literally filled the few days of organized as much as we could And it didn't think in it'll add safer few days then once it did and you're right you do feel a bit relieved because you know. They're not struggling anymore. I've heard about this funeral and that You organized pretty much all yourselves military position. Yeah sounds like I mean it. Sounds like it couldn't have been a funeral for her. It was unbelievable Still Tear up things about how nice it was So yeah the crematorium place just outside Coventry and Yeah. The capacity was about one hundred people and and there was easily over. Two hundred people turned up so initially so we. Also you got there with the casket a bit whenever asked already arrived and all the seats and tied to food as a huge people outside we carried in mum and finally did and then we put her on the plinth Wherever it's called at my dad's outright. We're not Stein. Yeah and he was on Ronca in in And so everyone was really squeezed. And there's no one left outside people around us so like at the front where the stage is. Basically they were all around those people around the casket people all at the. Irs Is Really Nice. Yeah then we live streamed as well and it was watched by my dad knows. It was over two thousand people in Cyprus. Our with from two pubs showed it on the live screen that was packed full of people and my dad countered the countries that was something like twenty one. Twenty three twenty one to twenty five countries. June dental something crazy you spoke at the funeral didn't yes. Oh I did the eulogy you. My sister did a poem that she wrote herself. My Dad just sort of like hosted and like spoke a little bit. I must have been super difficult for you to stand up and and do the Eulogy. About your lovely mom. Yeah it was quite difficult and I held it together but I didn't. I didn't care if I didn't out like we said crying would not mind too. Br into usually saying let's do Hick. Is You need to to be honest and tear up if you need to. Yeah it was. It was quite hard but I'm so happy we did that together. Initially so the person holds is coming for the Alabama celebrant. Initially my mom was going to record that that was our plan. I would have been so strange but it would have been so. My mom says she would have been hello. Welcome TO MY FUNERAL. Doing really strange. And but she got a little bit quicker than we thought that we couldn't do it in the end. In retrospect you think she would have been really happy with her day. I think so. Yeah because it wasn't any there was no one else talking. It was just as three who taught and there was no so. We're not religious wrong being released. But we're just not so it wouldn't have been as if it was a religious service or anything like that and then if someone we didn't know it was speaking about mom wouldn't have been same. Say Yeah it can go on any better really what tends to happen. Then there is the for dies down. Everybody goes back to then normal lives which has changed significantly you. How was that when all the buzz had died down? Yeah that was really strange so I had about a week two weeks off. I'm from MOM dying to combat. I could have had a lot more work really good about it but after the first week I was like. It's not really want my doing. I'm just sitting around sleeping sodden. Which is fine but you live does move on and it has to move on and so I wanted to go back to work so I went back to work. Yeah within two weeks. I'm so strange because no one can win like random until your employees your staff at work no one because if they don't mention it in your head you think come on my mom's side you're asking me then if they do ask about you solve shutdown. Yeah I'm fine. Thank you thank you so they. They literally can't win. It's so strange and I went. Work in retail was an awful time to go back to work so it was mother's Day. Oh good grief is no I. I just wanted to get back for the K. Wasn't the best time to go about looking bucket. I think those are the things that she isn't it because for that first year as well you kind of a good. That's the first mother's Day that's the first Christmas. That's the first my birthday and all those firsts of really painful reminders I what. What words of advice do you have? The people who are listening who Are going through this or can expect this About moving on after the death of someone that you love would say always take time to remember them. So don't try and force it down if you feed inside one night right how like. Sometimes I actually make myself sometimes on there and I see a picture of mom when she was ill. Let's say I go. I WANNA remember much normal. Just watching videos or something like that. It's really important to you. You probably are going to want to be talking. You can be sad for probably the rest of your life at some like I described quotes on the other day which I think was weird analogy. But at the very start you on an emotional rollercoaster. You are there so many ups and downs. If you were going to a theme park it'd be the best ride their only ups and downs. But eventually you still going to have there's ups and downs but it's GonNa be a really boring. Rollercoaster is going to be so loud flat. Those are good times and eventually downs but it will be you get through it but I talked to everyone. And how has this affected you as a family? I think W- it's brought a lot closer together. We were close before but now with more will. We actually asked twice. Now there's just a what's up group. We've got off family We've got one just my dad my sister and I and and in that if one of his famous sides sometimes you can only talk. It'd be like tackle how you doing guys and they've got good. Emily how you actually doing. I'm feeling a bit sad today or whatever So we talk a lot more openly about probably yet mental health and stuff. Which I think's really good absolutely. Do you talk about your mom to each other. Yeah definitely a we do stuff that she does all the time so mummies to see trends at people. Do Kids do these days or wherever she do them. Wrong say stage for years ago when kids are teenagers. Who say like our that smells. And you've got your mom's smells. I'm used to do that to me. And my sister installation. What you like montage you still. That's still does that every Jew like you say something. I'm victorious that your MOM's tired so still. She's living on saw lily absolutely. Yes we have crooked enough. I'm going to cook a dinner. Cook an all star skipping and yes that she's back in the room immediately immediately which is really funny so the future for you. You're blogging podcasting. Yes why why? Don't you feel like you WanNa talk about this so much because I mean you know? It's unbelievably helpful Why is it important to you to to do this so I think I could have done something like this when I was going through it but honestly maybe Kinda selfish is is like my own therapy site I said on my I have a podcast recorded last week and I said guys if you want me to do it again or let me know your honest? Be Good if it's a one off great. It's quite good. Do you want to hear more? Let me said you're actually probably listening to my own personal therapy right now. My thing is if I just one person it's it makes me feel better about so if I say when I did the blogs in a few comments on that and it made a difference to someone. That's all I care about so yeah for me I suppose. Yeah Kinda Therapy Tho of helping someone who went through something that I did. It feels really nice. His mom and chased to TNT. Not Guys would love that couples launch on Wednesdays. We were paying on Mondays and Tuesdays and Thursdays and Fridays. And the weekend is at Max's lovely to speak to you. Thank you very much for being so honest with us. It's hugely appreciated. Thank you Bob Dany Fabulous McMillan. Professional is back with me. First of all Dina Max. What a what a story what do you make of how him and his family have dealt with it I mean so many practical tips in there from things that they've done that feel like their original that you could put different slot tone but absolutely amazing How how they dealt with as a family and again experiences very different for different individuals for different families. What are the most common questions that you get About end of life so I think A common question people often ask themselves And family members often debate is how long how long have I got left to live? When they know their time is limited and and that's very difficult because some people ask the question on perhaps they don't really want to know the answer and I think it's always very difficult to give a very specific time And I worked with Palliative care consultant. Who was very good at doing this? And she always used to double check that they actually wanted the answer but then she would say whether she thought they had weeks or months and she So she didn't say you have two weeks or you know she just say. I think it's going to be very few weeks. And I think that gives a good indication without being specific so people are taking the days off on the calendar and getting very upset anxious in those days as well. Max described very eloquently This pre grieving process that I completely related to Give some explanation of what that is. What what he meant by that. I mean he really articulated it. Really well Will you know you're going to lose someone but you don't know when and so you you start the grieving process in in essence and that's different for for everyone in terms of shock. Fear Anger acceptance. There's very good literature around the grieving process. And some people experience all of that some people only one of those things but in essence. It's about you coming to terms with the fact that you're gonNA lose your loved one owner on a practical level. I think because we've mentioned you know when you're in this huge emotional turmoil. Structure is is helpful. What if somebody's just received an end of life diagnosis? What sort of kicks in? How what what steps should people expect? on what would happen. Generally to kind of help them through that I think the most important thing. And that's why Max story is just so important is is being able to talk and I know they were a close family. And some people don't feel that they can talk to friends or family Up about it but understanding what what you want. If you're in the situation where you're facing end of life. When do you want to consider having no treatment? If you're still having treatment where where do you want to be? Who Do you want to support you? Support is out there and you can have those conversations with your gp or even your clinical team that you can have them. You can have them and you can actually undertake something called an advanced care plan where you can document those things so that all those people caring for you like the GP will understand what your wishes are and you can share that with family members. I mean obviously including family members in those conversations is really helpful to talking about including people in the conversations maxes story about how his family filmed conversations with his mom. And just you know they just put the camera on so they've got a lot of normal That they've that they've recorded as well stuff that they've they didn't even realize they were recording quite a unique approach but served as a great example. About how you might approach those final weeks or months I just. I thought that was such an amazing idea. I think one of the things when you're going to lose someone that feels really important. Most people is making memories So reflecting on past memories and often you know you talk about things that happened historically that you remember what Happy Times but also creating memories that you can keep hold off once The the person's no longer around and that's was such such a good idea and Unfortunately because often people don't talk about things openly an half those open discussions they lose that opportunity to make those choices make memories which does seem such a shame. If you've never been in the situation. Contemplating death is a huge psychological Minefield it's how do you? What what? What is your advice if you are? Really Johnnie worried about the physicality of it about the the you know the psychological effects about how you're dealing with it links back to your first question about what people expect There's lots of things of the things they sometimes ask is. What will it be like? What can I expect Named reality some some people Active and doing things right up until the last few days whereas other people are much weaker. I'm perhaps the last couple of weeks are very tired and and in bed and I think that they're very individual things will say based on what's causing you to So so what type of cancer you have. What type of treatment? You've had generally how you've coped through. That might be an indication an and actually if people worried about symptoms you can just talk through some of the common symptoms that that that people can have when they're approaching end of life and what you can do to actually alleviate those so people don't have to be in pain they don't have to feel sick and sometimes people get very worried about people eating and drinking yes And there's this need to try and feed their relative or the left one and make sure they they drink to keep them alive and in reality. It's a natural process. I'm people won't suffer through that. So if they're hungry and they want to enjoy something let them half it if they're not hungry I it doesn't matter We'LL IS IMPORTANT. Is that obviously? You keep their Their mouth comfortable and moist You know because obviously if they're not drinking their mouth will dry. It knows Final few days Max and his family planned His mom's funeral meticulously is quite an undertaking. It sounded like a A really special day. How would you recommend people approach funeral planning because it's not easy? It's not an actually doing. After the event is is can be quite traumatic. I mean I I think that's a fabulous example where they had time where they were able to talk and they were able to planets and actually there are lots of schemes. Now where you can do that while you're well and Y which feels much healthier And in a way Takes the burden of you know sort of how many families though taught tweet other about you know what would you do? It isn't and that would be a really good thing to do. You know if you've got the opportunity as a family and you've gone out. Only relative is to try and help those sorts of conversations but but people don't say you know. I think they are a good example of how they approached it. You can still do it. That way. even after somebody has died so think about the person and the essence of the person and what they would have wanted because in reality you probably know anyway. So I think there's lots of ways that you can approach and there's lots of websites out there that give advice I'm we will have on our website. Marie Curie have advice on their website. There's lots of places people can go to think about how you plan a funeral when you do it. Words of advice for people who have lost a loved one resuming their lives. It's a very strange period. After somebody has passed away the friends and family want is your advice in that period afterwards. How do you get back to any semblance of a normal life? I mean yes. Life does have to go on. But actually the the pain of losing someone can be quite physical as well as emotional And talking talking is a really important thing and if you can't talk amongst people that you care about you know talk to your gp about how you feel. Potentially I loved a maximum sample about texting. Mind and and looking online. If you can't kind of pick up the phone All of that applies are after the event. You need just to be very aware of your feelings and know that it's okay to be sad and if you're struggling to pick up the pieces and carry on without that person around then there is lots of support out there. I think I slept for a month. I was exhausted. I think those are you because you you don't realize how much you're coping And the the energy the emotional energy physical energy that that takes up. I slept for a month. It was. It was incredible. And it's okay to cry. When a particular song comes on the radio you know oil in a place you think. Oh they say would have loved to be here I. It's okay to cry. It's a normal reaction. It totally I used to go into. Mum used to perfume. And every time I go into like DEM's or more like that and I'd get a whiff of it for a long time. I just so and it does take you by surprise abated. And it's good to know that that's okay you know. I've still got the bottle of aftershave that my dad was using before he died and now and again I have and it just reminds me of him. It's just so nice. Oh Dany I could talk to you all day. Thank you so very much again and my thanks. Our thanks to Max for coming in to tell a story if you've been affected by the very sensitive topics we've discussed in this episode. Please contact on McMillan support line on. Oh Eight oh eight. Eight eight double zero w zero open seven days a week. Eight till eight next time. We're talking work and cancer with Helen. The night before I went in to have surgery my boss said to me. I think we'll get somebody else in. I ended up two days after my surgery between payroll from my hospital bed in hospital. They actually confiscate my laptop. I should think so. Subscribe if you'd like to hear that in every new episode whenever it's ready have you enjoying the series why not give it a rating or a review? It helps others on the podcast more easily. I'm a maybe talking. Cancer is cancer. Support podcast

Cancer Dina Max Coventry Max McMillan Bob Dany Fabulous Marie Curie Eastbourne Southampton Adobe Warwick Castle Cyprus partner Millan Matt Cypress England Ruby
Cancer And The New Normal

Talking Cancer

26:13 min | 7 months ago

Cancer And The New Normal

"What does it mean to be living with cancer during a global pandemic? Hello I'm moab welcome to talking cancer. You might have listened to series of the podcast this year when I met with some really extraordinary people to have honest conversations about living with cancer. Well, things have changed little since we last met I. Think it's fair to say and at times it feels like we're living in a new world entirely. That's why McMillan have teamed up with boots bring you a very special corona virus series talking cancer to address some of your most common concerns around living with cancer. During the global pandemic, you need to feel empowered you need to look after yourself to would. You mind if my loved one who's in the car park on speakerphone all you know you can ask to record the consultation discussing it with your doctor or consultant and asking the questions. There are often options that you won't think of today joined by Mellon's chief medical officer. Rosie. Leftist and boots is chief Pharmacist Mark Donovan to talk about the services available practical advice. You'll need to navigate this new normal with cancer. With McMillan and we're talking cancer. Rosie mark it's lovely to have you with us. Really Nice to have you along. Now we're recording this on the eleventh of September Twenty Twenty and a specific about the date because lots of people are trying to give people some answers when the god is feels like it's coming from a frequently changing landscape sometimes on a daily basis. So let's start at what is the beginning of many people's experience with cancer we know. We know because lots of people getting in touch with Macmillan at the moment because they're either being diagnosed with cancer over the phone or receiving information about treatment vibraphone phone, and that must be incredibly hard to take in when you don't have a loved one or a care with you for support Rosie I'm going to start with you. What kind of advice can you give people who are preparing to potentially receive information about a diagnosis? Or treatment difficult treatment over the phone. Yeah. Thanks summer. As you say, you know we've had a huge number of calls to all support line about their son. You know as we all know receiving a diagnosis of cancer is frightening in the best of times you know it turns your world upside down in in a matter of seconds. But when you add on the extra precious of what's happening in the world at the Moment, with covert, this just amplifies all those feelings. So you know at a time when you're thinking, you're gonNA be receiving diagnosis. You might not actually have your head in a space where you might be able to think about some practical things I am but actually patience Taylor's that some of these things are really really helpful and sometimes actually give them that feeling of being able to take a bit of sense of control back. So I think some of the top tips we heard from people are you know making sure that you've got yourself a quiet uncomfortable space some people will be in house shares. So you know also do you need it to be confidential planning ahead for someone to be with you and again patients of told us that actually sometimes actually doing this in their own home has increased the opportunity for them to have somebody with. Them I'm right down you questions and you queries and what it is, you want to hear from from the consultation and really small thing. But actually again, lots of people said it to as is that an when hospitals phone, sometimes it will come up as one of those withheld numbers I am also used to those nuisance calls at home, but you do recognize that might be the case so that you don't miss the call. Ask them if it's possible for you to record it and remember the other person at the end of the phone, they can't see you. So they don't know how you feeling in response to what they're saying they don't know what you're hearing and actually what your understanding. So if you have questions, you don't understand stuff do feel free do feel empowered to us for that clarity mark from the pharmacy world's perspective it must've been imas be a very challenging time. For you to be able to keep track and keep up with the changing landscape and the recommendations has it been a challenge you to stay helpful to people receiving diagnosis in this time? Yes I. Think it is difficult. We understand people are anxious both for themselves for their families we have stayed open on high streets. Of course. I. Been Able to provide advice for people who are affected by Sandoz who accounting for people who are affected by cancer. and. We. Are. Navigating. A, new will to both of you have mentioned in the new normal this new world and you know I know as a former GP rosie video consultations of false becoming the new normal and that I may not has its own stresses you mentioned confidentiality. You know there's I'd be wary about that possibly But also you know there are lots of people that really aren't very tight tech savvy of the might be super stressed about setting is opposition light this all right through to kind of being able to. Talk. To somebody intimately a GP over zoom colored or a phone call about symptoms I'm Rosie. What she? What's your advice? How can you reassure people that that this might not be quite as invasive and traumatic as it sounds it's been an absolute sea change You know in a way of consulting I mean many of us. You know as you said, I'm a former GP for thirty years and I've been using telephoning in consultations for quite some time but but you know I in specific instances for specific. Circumstances. But the scale of the change in the way that we're we're consulting of the speed it's happened as just being as you say, quite quite phenomenal and it's a new way for all of us and I think we're really learning which treading carefully and there's no one size fits all you know. Some people have told US actually that they've quite appreciated the access to the GP on the efficiency and that it gives them but it's not gonNA work every body and it's really important. That people find their individual way. The video adds another layer onto that and I'm certainly not the most tech savvy person in the world you know I'd get a youngster from my house to help with that you might want to do a dry run with a friend. Am even I'm and I think it's still also really important to say that if it's not working for you, you need to tell the clinician it's not working for you. You need to feel empowered to say that but definitely feel okay to say look there are things I need. To feel I need to see your face to face at might we're working on actually on some top ten tips and we're working together with both patients and professionals so that we don't make it assumptions about what is working for people. I'm and we're hoping to put those on the website ready very shortly. So and do lookout for those have sounds up city perfect market I. Mean you know I it's coming to tragic cost obviously with key with covert and the pandemic are you seeing any benefits in in store with foams from having time? To speak to people, are there any upsides in in your world or I think Rosie said the way patients interact with? GP's and other healthcare professionals has changed quite dramatically patients can access the GP. Practice a slightly different way and and I think that has provided opportunities for pharmacists and GP's to work together and we would want to encourage that So so at GP's refer people into pharmacy, send their prescriptions, electrically how Aska pharmacy teams to provide at further advice or oh at feedback 'em into the GP. At practice some of the interactions away having through pharmacy teams on the High Street of course, and. During the heater pandemic, am we launched online boots, McMillan Information Pharmacy Service we have over two thousand boots, McMillan Information Pharmacists The can advise on a day to day basis. Any matter and we will work closely with Macmillan to refer them into the Macmillan website and support lines to and the boots McMillan Information Pharmacy scheme where we have over two thousand information pharmacies in our stores and over lockdown, we've launched an online boots information pharmacists service. Hosted by shielding pharmacists where people can make an appointment either through dot com forward slash McMillan or through the Macmillan support line and talk to some of our pharmacists online about their concerns about the support that they can get through pharmacy teens and where to find other support. As they go through their experience with Cancer Rosie. Can you maybe I'll give some clarity as well. on if you all going to appointments is there a? Rule at the moment about being able to take somebody with you or not or or that differ from from center to center hospital to hospital. Yeah. Really important point and again something we're being fed back on a on a regular basis because in in the main it is still the hospitals are saying that actually they don't want people coming through the doors that. Don't absolutely need to be there. However, of course, all hospital buildings are set up slightly differently. So you know that the the way that you enter them and the route that you take might vary depending on the location, and so it may well be that in some circumstances, those rules are slightly laxer, but in the main, it is the case you know I had. A friend who visited a hospital recently again, she was really worried about this situation, and then actually when she got to the consultation that was the opportunity to say look, would you mind if I put my loved one who's in the cop on speakerphone so that they can be part of it or you know you can ask to record the consultation or actually then also say again, I talked about millions cancer specialists who may be there and involved in that conversation and it. May Well, be that you could say you know, would you be happy to speak to my relatives have managed to take everything in that? You said to me today I'm an ask one tip is also just to make sure that when you're in that appointment, just make sure if there are any of these annoying bureaucratic consent rules that you have actually completed those so that actually not one will be able to talk to the professionals just picking up on that as well. Rosy. In those those guidance that that guidance information that you're likely to get when an appointment is booked for you. Would explain there as well what you should or should not have been doing. With regard to shielding measures or isolation measures before going into an appointment absolutely, and the most important messages that whatever information is sent to you for your individual appointment that you make sure you follow that because nobody wants the fact that your care your treatment couldn't be delivered because you haven't followed the guidance and the guidance will vary depending on where you're going what you're going full I am so obviously going to be staying in hospital and having. You know having treatments interventions. It may will be have to have a Cova test seventy two hours before may well be that when you come home, you also have to self isolate but I can't am I can't say highly enough how important it is you follow the guidance that is given to you for your individual appointment. Balk when you get a cancer diagnosis, there's new language there is new. Structure There's new retains as new buildings, this new doctors and faces and then as now new guidances we've been talking that changes on a daily basis is a huge amount to take on board. And I think as well. There are people who've understandably very wary about being outside in the public going to the pharmacy to pick up whatever they're picking up being in hospitals. What's what's your advice to somebody who sees this and just goes? This is only bit scary for me. While I understand it scariest part of my job to keep up with the guidance on today basis I really struggle with it to be honest It's really difficult so for. You know I understand the anxiety understand the nervousness everybody has a bit of that as rosy said hospitals and GP practices of of change to make it a significantly safer an enough Agassi's we've made significant changes to a for it to be safer to access as well and it's OK touring up. Ahead of the appointment understand the changes that you'll see and how you can prepare a that. Fall that. Appointment as well where he had to help a make you. As comfortable as possible and an, every healthcare professional will aim to do that. So I ask questions get prepared. Talk and share how you're feeling an people will be able to support you and I know with my GPA now reprieve prescriptions and online ordering of medications, and there's some delivery systems as well. So they're all they're all structures around. Aren't they you know which don't which means you don't have to go into a busy high street and a busy stole to be able to keep up with your medication to keep up with the information that you're you're supposed to be receiving. Yes, and we'll help will help people in in whatever way we? Come. Every pharmacist will do that I'm sure on every pharmacy team. So whatever is right for you. If you nervous, we can deliver the prescriptions to you. We can have the prescriptions transferred automatically from the GP at to a pharmacy on the High Street unsorted from there. We can also talk over the phone or indeed online for any questions you have about your medication to. So there are solutions mouth. That's great to hear just had in terms from you know obviously, this also support from Millen I'm quite early on in the pandemic will also. Set up a befriending scheme and you can look at the website to to see this this office you know connecting with someone who tried to match people. So the telephone buddy scheme and you'll get contact over twelve week period my dad. As being self isolating since about nineteen ninety two. But. That's decision he just didn't like people mostly. So yes, everybody is different. You did mention no market. It was really important. Glad. You've bought their that up. And this is wrapped up with mental health as well. Is that it is I. Guess at this time when you get a very overwhelming piece of news and they're all restrictions are changing on a daily basis, it would be quite easy to sort of retreat Rosie, the the benefits of staying active and communicating. However you do that I'm sure can't be underestimated absolutely I mean. I. Think we all know don't we the benefits staying active for all of? US an actually you know when you've got a significant illness, actually the benefits of exercise both for your physical and your mental wellbeing, and so for people who've had a constant diagnosis waiting to go through treatment or going through treatment actually keeping up your physical emotional strength is just absolutely vital and they're all things you can do without. We always say you don't have to jump up and down in Lycra um they're all things that you can still. Do within your own house but you know actually this is this a part on our Cova. Toubon on minimum website the actually talks about after yourself at the moment there is a video on their actually sometimes people are really worried about what is it safe for me to do people actually think maybe they do need to sit on the city 'cause they're going to do themselves some harm. So number one if you worried check in with your healthcare team and you pharmacists Just to reiterate, there are simple things you can do within within the whole and it's it's really vital that you do that and keep up your strength. Questions About Cancer Beats Mcmillan a by your side for the moment to diagnosed through your treatment and beyond our beats. McMillan intimation pharmacists are on hand when specialists support from helping you make sense of your diagnosis to advice about living with cancer you combine them in your local boots pharmacy or online via video appointment visit beets dot com for wit slash McMillan for more information subject to pharmacist availability. Now. We've talked a lot about people getting in touch with Macmillan because they've been diagnosed with cancer over the phone or had to attend appointments on their own, and we've got a short clip from an amazing woman called. Ruth who was diagnosed with breast cancer during lockdown just weeks after her little girl was born. She's got some tips for others who are in the same position as her. I everyone. I'm raith and I was diagnosed with breast cancer in. April. This year during the coronavirus Lobstein. It's difficult getting diagnosis during this point, not being able to take somebody with me, but it was a few tips that I find through the way that really helps. Me fastly if you're going into an appointment on your rain I, find it really useful to see if you could have someone joining on a coal radio and put them on speakerphone in the room I found this radio east for for moral support. But also bringing somebody else in that process Wiki, and then they're also able to take questions, take notes and the Perez when you getting a lot of information in what cases. Secondly, if you got an infra surgery find out whether against go into the tastes room fast or if you're actually walking straight into the operating better mentally preparing. Yourself for the latter can need a little bit more of thought and visualization just to get into that right head space walking yourself into an operating. Thirdly, take a good book or TV, shows to watch when you're on your own waiting really does help pass the time and then the final got ready is a lot of hospitals have security on the doors at the moment to limit the number of people going through. So give yourself time to get yourself into security in through with an appointment latter or tax just to help running as you go into your appointments and hyper guys. Of course. So many people are going through difficult situations like ruth, many of been writing into the Macmillan Support Line Rosie Mog we've been working through some of the most common questions coming through to Matt Millen Support Line but lots of people concerned about delays to treatment or two tests. which might not diagnose them with cancer treatment cycles being shortened. So what are your? What are your words of wisdom to give people who are worrying about those things? Will you right seeing more and more people come into pharmacies with a concern in symptoms relieved that they haven't been able to access? The GP your consultant and and clearly we would encourage them to do an I've had personal experience of this actually over the lockdown period my father-in-law sadly has been diagnosed with colorectal cancer at during lockdown. Yeah and put for weeks and weeks and weeks It turns out he was ignoring these important symptoms and in talking to him, he was thinking that the GP's closed we've already talked about that they haven't been and and Rosie was saying that is more appointments available after people to talk to their GP. Thought that they were too busy or. In fact, he was not allowed to go outside because he's he's over eighty but. when when we got to the place where he could access some of the support that is available, I was really impressed with how it was handled. You know the GP in the referral he had to have some Cova test before going into some of the appointments to have scans. Results over the phone like we've been talking about and. Then, talk into consultant about the plan of action and a discussion of. Go for treatment now whether to delayed a bit later, you know an an unease east autism treatment for for it but. I'm I'm fascinated by how many people who perhaps would ignore those symptoms which are really vitally important to raise and getting support. The healthcare system is still working and. There's no real delay getting access to what is normally then infect as rosy said earlier it can be quite efficient and quick But this clearly lots of anxiety, but you need to take the conversations about all options Radian all action plans. and An iding courage people who perhaps I think should I delay treatment or worrying about? How you can. Manage the treatment that currently in you know you have to make a decision which is right for you. Reading important and discussing it with your doctor or consultant and ask the questions being prepared like Rosie said, idiot and get an all the information together. I think that they're often options that you won't think of others will, and I think that's really important. I'm really glad that you brought that up actually mark and we wish your father in law a speedy and healthy journey. So rosy mark mentioned their you know a very personal decision. So some some people who have been going through diagnosis and treatment have had to make tough decisions about whether to continue or whether to to hold back and wait until it is inverted commas safer for them to do so. How is mark talked briefly about how can you add to how people best way up what's best for them? In that situation we all learning all the time we're learning much more about covert was certainly learning a lot as number of academic people up and down the country to enrich clever staff, and I'm learning about the interaction of covert and cancer and what is. Safer, what treatments are an aunt and safe to continue their all plans now for restoration recovery and all of the four UK nations and so were influencing you know our very own chief executive lender has has had direct conversations with my hand coke I'm about this. So we influencing at the top level and we're working with the workforce you ought tirelessly I am endeavouring to. Get as many treatments back online. But again, coming back to what Mark said. It is about those individual conversations about what is best for you and those conversations you and your healthcare team no yourself best and that's where to have those conversations. As you know with a cancer diagnosis, there is the individual, but there are partners children. Why the Family In this time what what's out there for people who are trying to support their loved ones I know Rosie, you can probably help with this as well. It's tough being a care isn't it I'm I'm for the first thing I say you need to look after yourself to, and there's definitely support out there. If you haven't found it yet, you know McMillan support line is a balloon resource and the website is a brilliant resource to but family members loved ones. You need to be a strong and be able to share the online community groups in an L. McMillan website, which you can gain support and strength from and talking to people about it is really important in our pharmacies through our boots. Mcmillan Information Pharmacists are an teams. We often talk to the carers actually rather than the people who are directly affected by cancer. The CARE is perhaps haven't been in the conversation need to understand a little bit more about what at treatments are and what these medicines mean so that they can ask questions where he had to help but I'm sure. Other healthcare providers are there to help to but it's important to look after yourself rosy. It's a relevant question I think in a relevant subject for us to end on. So there have been so many changes to the guidance enrolls Where's the first place? Where should people turn if they're really still not sure what measures them themselves in their family need to take a particular part of the minimum website which is corona virus hub, and we try to respond to the content on there in response to the questions that come through the support line I'm won't and. Dating on a very regular basis. However, we do also make sure that we've got the Gulf Dot UK links on there because you know sometimes as we now announcements made on a Saturday evening and again, coming back to you and your individual care be guided by your healthcare teams and the information that is being sent to you about any specifics and that relate to you. and. So I I think those would be the things that I would suggest in in terms of making sure that you have got absolutely the right information that is personalized for you. Rosie Mark Thank you so unbelievably helpful I really you know there's so much in there to take away it's been a pleasure speaking to you both take care. Thank you. Thanks. Thanks summer. Thanks again to rosy mark for taking the time to speak with me today for more information on the topics discussed in this episode, make sure you head tone website, McMillan dot org dot, UK food slash talking cancer for resources advice and support. It's also where you can find out more about donating to Macmillan in our next episode talking about managing your mental health through the pandemic subscribe. If you'd like to hear that an every new episode whenever it's ready and if you enjoy the series, why not give it a rating or a review, it helps others find the podcast more easily I'm GonNa be and talking cancer is Macmillan cancer support.

cancer GP Rosie L. McMillan Macmillan consultant Macmillan Pharmacist Mark Donovan Cova McMillan Information Pharmacy Mcmillan Information Pharmacis UK mark September Twenty Twenty Matt Millen Rosie Mark McMillan Information Pharmacy Ruth Mellon
Ep 38 - Buy Stocks and Collect Rent Is Terrible Investing Advice?

Broke Millennial Finance Podcast

17:20 min | 5 months ago

Ep 38 - Buy Stocks and Collect Rent Is Terrible Investing Advice?

"What does this is broke. Millennial financier which are host muhammad khan and today going to be talking about buy stocks and collect rent is terrible investing advice so this is an interesting medium article that was suggested to me in my mailing list and i was like wait. What is this. So i actually scroll through the article reading through a seven minute read. It was actually very interesting ourselves like you know what. Let's talk about this in this week's episode labral no finance so the article will be linked. It'll be in the show notes if you guys want to give it a squirrel as well after listening to the podcast but the main fundamental advice and i to a certain degree. I agree with the advice. Was that buying stocks and collecting rent from real estate. It is terrible. Investing advice if taken at face value so what that means is if you are just listening to these people like on tiktok or instagram. Listen man. I don't think those are the best places. You should be getting your financial literally literacy from. I would prefer podcast and maybe youtube videos with like known people. I'm not even going to save myself. Hey man there's other people out there if you want to listen to them or books and whatnot but jentzsch try to stay away from them but those people tend to say like lock bought ten k. Of tesla i made fifty k and like two days. You can as well. That's not true. Not true okay. That's not how it works. Never take it face value. And that's what some people always kind of get sucked into its vast cash. Like you can. Oh my god. I can become a millionaire so quick. Let me do this. And that's what gets them to crash and burn. Never take that advised. Never go down there out. The other one is like collecting. Do you can just get this real estate property for a mill. You can flip it. You can do the birsh strategy. You can have five hundred real. Estate portfolio is under your belt in a year. That doesn't happen either. The amount of hard work and dedication that goes into burr and just real estate is mind boggling. You will never understand until you go through that first house process of how annoying it is. This show is not explicit. If i could curse you would know how bad it is in. How tough it is you get used to it and got the hang of plus starting with your first one you will understand how bad and tough. It is so kind of go into like why i kind of agree with like in this face value sense. So what this means is like anything that you take at face value. We can have negative impacts. Just straight up buying tesla because it's going office cool. It's a tech sock that's bad it can always plummet. I think what was last. Time is trading either fifty eight hundred fifty eight times. It's earned over its earnings. It's way too high. It could technically a bubble. I know the stock market has changed. Psychologically or how it works based on from like prior periods but it is still bad to always see it in that sense. It's always like a risk for something like tesla for you to invest in and again i have money tesla just enough. Why it's not that. I don't i am down to take that risk and i am aware of the downfalls that could come with that said frisk. There's other stocks and that's why you should always do your research where you do like basically all your due diligence. You buy the blue chip stocks the ones you know. That can't do banned such as microsoft or google or like energy stocks. Like stuff like that. Where you know like okay this sector. I know i'm good because it's been good forever. Let's go that and even then you're supposed to do your due diligence kind of revamp every year. So is this still doing good. Oh my god. Oil has been plummeting down for ten years. Maybe let's move to electric or something solar or something of the sort like some changing the strategy up. You're always supposed to do that so always do like some form of research deep dive into what you're doing. It doesn't matter what it is. It doesn't even have to be stocks. Anything even people tell you. Make some you've been making six figures in a month bs degreasers. Everything is hard work and dedication in time you will rarely ever get lucky out of nowhere and make something like that. I know people who have gotten lucky. They put ten on farm stock pharmacy. Stock boom jumped up or pharmaceutical should say jumped up like crazy overnight. Similar to like crypto. They met a couple of hundred grant. That can't happen. That is extremely rare. The opposite is more so and you don't hear those sites where they lost their knee. Which is the more common thing The just just enough. Why from that perspective on like why. The stocks portion is like bad advice as taking that so our i should say now real estate just kind of dive into each segments so real estate this article actually cut kind of dives into y. Real estate is bad at face value. Go on talking about how. Their neighbor purchased a house for one point one meal. Sounds like they're in brooklyn somewhere and then they later sold it for seven hundred k which makes me doubt it's brooklyn so what that means is real. Estate is a good investment. I will tell anyone who ever asked me. Real estate is a beautiful investment. You can make a lot of money in a good money in it as long as doing the right thing. The thing is like this example. This person overpaid onset. Property sold it a year after and sold for four hundred kate. Less that is a very bad deal now. Why did this person by there wasn't like given detail that wasn't a rental. Property was like a investment property was just for like personal property unsure but they overpaid on said real estate. There was a bubble in said market or neighborhood or whatever it popped or day just got ripped off and then they had to sell what again for whatever reason selling it within a year is fairly fast for whatever reason they got gypped. So there's always like a couple of rules of you're supposed to look at your you're supposed to see like is it worth it is. What am i buying for is a cash flow so it doesn't matter even if i bought her for a meal as long as my cabras like let's say yours is ten percent or as you know like this is my casual. I am happy with this even if my price drops to one hundred k. Yes i may have overpaid it but the goal was my cash flow. Was my math. Like i am still making one k. A month i am happy with that. Because that was my cash flow could have been hired for waited a little while but if you ever have that mindset you'll always you'll never buy a property or you'll never take that risk but right you did your due diligence and it worked for you with those numbers. Again it dropped. That's fine the appreciation. I always see icing on the cake. Unless you're trying to flip it doesn't matter as you just need to make sure your numbers work. The other thing article gets into which i agree it does create stress. Like if you buy especially if it's like somewhere like in a large city so just near a city house and let's say you give twenty percent down average houses like seven eight hundred k and brooklyn. I believe kobe more. Now who knows prices skyrocketing. Let's say it's a mill you put twenty five percent now. Two hundred fifty grand a seven hundred fifty k. On top of your head for the rest of your life for thirty years at least unless you're planning on paying it off earlier which most people don't rich people do. Fyi but that's like a huge debt on your head and your stress is always going to be there an intriguing left. You're also tied down to that investment. Now if it's even an announcement its own property that's even worse if it's an investment you're tied down to it because that's it. You can't put your money other places again unless you're well versed into what you're doing. This is all face value type situations if you're a brand new guy. You don't know what you're doing you're tied down. You don't know how to refinance the house. You don't know how to do a cash-out refinance i should say you don't know how to do the birsh strategy. You don't know how to earn other sources of income to be able to purchase the next property because you've got such a high end property or high amount property you can't even invest in stocks anymore or get other source of income again all these different strategies. Play out you always have to crush. The numbers may short work. Don't just see these people align these fake gurus especially who tell you just do this and you'll become his by my course and you'll make billions of dollars. None do your research figure it out. Get a mentor. Trying to go down all those different routes and this is the interesting piece which no one about. There's a lot of bad real estate out there. There's a lot of bad real estate. Trust me there is a lot of bad real people will say no there is. There's bad deals out there. I have seen so many bad deals where i'm like. You are out of your damn mind. Like i've seen people selling houses that are worthless twenty k. For seventy k. And i have seen people purchasing said properties. That's a bad sign because either eight is a bubble in that market that people are buying even crabby properties like that to that. The person just got shipped off. So there's a lot of bad properties out there that you should always do your due diligence. Nbc short worth it. Get the take a contractor which you even if you have to pay him or her. Get your information. Do your due diligence get an inspector. Do the math again crunch. The numbers get relative sales around the neighborhood. Get an appraisal. Which would do that for you. All that information. You make that decision and know what you are getting into or not. Just don't buy a bad property. Even if it's as long as i always say from the perspective if your cash flow works if this is the cap rate let's say ten percent of your capri it works and boom. You're good to go continue with that property. You'll make a good. You'll make some good cash so moving on from there so we're going to talk about stocks on why that could be bad from a face value perspective. Go back to tesla. Like i don't believe it's a bubble. I believe there's a psychological impact to it. I believe that name-brand is hip. I guess or in with the millennials the younger population who are normally in these high paying jobs like such as like fan companies. Google facebook amazon etc. and they. They want to get a car like that. Because techy est car you can get it's luxury slash techy so it's nice to have and i know more so people would try to get like a benza. What i would prefer but also being a millennial. I'm like this is a new tech car. Before that was always getting a benz get some german car. Like a beamer. Some stuff like that. Bmw already but now it's even myself. It's tesla i haven't gotten one yet. I do but like it. Might because of that brand recognition that has gotten similar chapel. But apple's worth it due to its cash flow and whatnot and it's revenue. Tesla gets it from that like okay. It makes sense for it to have. But it's still like. I said way too much expensive minutes should be but it's still keeps going up. Does that mean is always going to go up. That's what people thought bitcoin. it was at twenty km. Then it plummeted down to five. It's background what is it like thirteen fourteen now. It wasn't going back up. Is it going to hit by twenty again. who knows. That's the risk you're taking. There's other certain stocks that you can do good where you. That's where you're supposed to do your research. That's where he's supposed to do due diligence and that's when things start to blow up and you go down there out. I think beyond me it was a good example. I don't know if it's over inflated now but it was a good point at that time. Zoom douse a great test. Run per se from the digitization off the economy where everyone blew up on zoom. That's disguise rocketed. Just shot up like crazy. Because of everyone was using their revenue stream. Shot up their user. Shot up it made sense so stuff like that happens. If you have the faith in the company who did research into them. You can make a lot of money. Even warren buffett said that give him like back in the daytime money he can easily double or triple his profit easily. He can do that with the chunk of cash. He's working with now because it's too large with a smaller chunk of cash. You can easily do it. So yeah the other thing is. There's a lot of companies that are formed out of thin air tech companies now because this is more so the tech market they just formed out of nowhere. They literally have either. No revenue look like negative revenue for years. No growth happening at all. Like is just terrible and basically. They're just coming out with billions of dollars like i should say. Negative profits nine revenue. Like making absolutely no says they're not seeing your year growth on their revenue. They're not seeing anything changed. Their net profit is always negatively. I have over is like that. Okay i i know the point of what they're trying to do. They're all trying to pull an amazon type strategy. It doesn't always work. You can make that but it doesn't always work. So that's another factor. The other interesting factor is this can vary by country but in the us the government feel like most countries are all doing this but at least the us government they're printing trillions trillions of dollars literally out of thin air that will cause inflation. We don't know when but it will and can cause an inflation down the road. The reason they're doing it. I don't wanna get too deep into interests are extremely low so it's extremely cheap to borrow against themselves. Which is always very weird. So that's why it's it's smart for them to kind of do it at this point in time but it can cause inflation down the road if you obviously overstep your boundaries. Seems like with the government trying to do that but the interesting thing of a thing about this is rich. People actually know when to sell when this starts happening because for them. Inflation is an extra form of tax. There rather not pay. They're usually smart on one and by to sell certain assets that get impacted by inflation. So now you're probably thinking okay. Well what are you doing utah. All these the sounds like terrible. How do i invest. What do i do so this is what this podcast is for to give you advice on what to do and again. You don't have to take the advice from us. I always tell you anything. I even say questioning. Maybe i'm talking cancer. The word maybe. I don't know what i'm talking. Well you do your own due-diligence. I will say that. Learn increase your financial knowledge and literacy learnt. Read some books. There's a lot of free content out there. There are some cheap paid content out there as well which is books i would always is the best one. You don't need to buy courses. you don't need to go college trust me. They don't teach you anything over there. You can easily learn everything online. Majority of the stuff is free. There's a lot of great youtube content out there that he could easily. Just watch a lot of podcasts. Out there i've personally learned from both podcast and youtube and people. I am a people person. I've learned a lot from people. I dig information out of them so like that's whatever your avenue works you learn from there and experience is beautiful gift that you can take try test tested out. Failure will help you learn. Just always be careful on how much you're trying to fill whip. Don't put your family's life savings into this and then basically fail lose everything next thing. Give everything this. What i just said. Give everything a hard look and question every single little thing like why are you going to buy tesla. Is there a valid reason. Are you just trying to jump on. The hype is a fomo or is it. You've truly believe and have faith in elon. Musk and the company. Because he's selling tequila now for some weird reason under tesla why like. What is the reason. This is an interesting one. Always have an emergency plan before you take these crazy risks. Unless you're young. you're you're like me. You're down to take the risk and you have extra cash flow. You're not in those bad situations where you can't have an emergency fund. Just in case anything can happen you can. You'll do a job. Something can happen to you your funds or whatever. Your investment canfield economy could just should've hit two thousand eight again. You don't know a recession kit. Anything can happen. So always have an emergency fund. You can follow dave ramsey dave. Dave ramsey's advice on the emergency fund with the baby steps Definitely go down there. Step one is one thousand dollars and then step. Three is three to six months of funds to basically to have so definitely look into that. If you guys have not already and final thing is like. I kind of always push for this. Have different streams of income. So listen i know this. Might sound counterintuitive. To what i just said like the stocks and the real estate are the difference james. But there's other ways you can do it as well. All of your free methods like you can be a freelancer. You can start at youtube channel more so these are freer to take a risk on because failing wouldn't lose you too much money you can do side hustles. You can start selling stuff on amazon. You can do drop shipping hate. Try it all out if you fill trying to fill with little money as possible little to no money as possible if anything and then try out those things and i would always recommend you like trying to have a couple of different. Streams of income in like youtube is a great source. You can make a good extra chunk of cash from that. Like i said side-hustle same thing. Let's say into real estate. Get your realtor's license. Maybe so a couple of properties year. Hey that might be depending on where you are a good chunk of cash to help you out and build some funds to purchase them real estate property to protect our skin. See like those types of things again. Once you get to that point and knowledge where you can have like different businesses different reels they properties data of like other streams of income coming which is how normally rich people have so. And that's the point. That's where we're trying to get to from broke millennial originally so basically that was i- pieces of advice for this episode. We're going to basically ended up over here. I do hope you guys found this helpful. If you did definitely subscribe to our podcast. If you are listening from be sure to leave his aid review would help us out a lot. And if you'd like to support us check us out on patron name is broken. Lineal finance all links will be in the show notes for the episode. Ed on that piece.

tesla muhammad khan seven minute ten k fifty k seven hundred k one hundred k one k seven eight hundred k twenty five percent seven hundred fifty k ten percent mill twenty k seventy k youtube twenty km two days google twenty percent
Choosing cancer

White Coat, Black Art

27:45 min | 1 year ago

Choosing cancer

"How do you take down criminal network hidden in the shadows? I tell him that I know that they're the ones who are running the largest child abuse website on the darkness the journalists working to expose the darkest corners of the Internet. That's your playroom for that's your baby's clothes. That's my house. The police ace who hunt down online predators dewick right the environment. They're using no we didn't we didn't make it. They made it hunting. MOORHEAD subscribe wherever you get. Get Your podcasts. This is a CBC ABC podcast. I'm Dr Brian Goldman. Welcome to white coat. Black art the showboat medicine from all sides of the Gurney. Canadians Indians. Fear Cancer. Like nothing else. So it's not surprising that a blog. I wrote last week about so-called harmless cancers. Got Your attention by harmless. I mean cancers that don't cause symptoms don't metastasized and will never cause you to die. TURNS OUT LOW. RISK PAP Larry Thyroid. Cancer is at the top of that list. The study from Australia published last week. Found that nearly three out of every four of these thyroid cancers are so harmless. You might be better off not knowing the same. I'm is true in Canada. Where rates of thyroid cancer have shot up? Researchers have chalked up the increase to an epidemic of over diagnosis and it turns out an epidemic a couple over treatment that includes surgery that could have been avoided as you'll find out. These findings really hit home with lease Hussein. Leases a CBC producer who has prepared haired an eye opening documentary for white coat. Black Art through the dock project mentorship program. She's with me in the studio. Hi Lease high lease your. Here's a journalist but also as a patient. Tell me about your experience I was diagnosed with popularity thyroid. Cancer back in two thousand and eleven. I had my thyroid. I removed completely. And since then it's been a bit of a roller coaster. Finding the right medication Feeling different symptoms and kind of learning more about what it means to not have a thyroid. And you'RE GONNA have a lot more to say about that in the documentary but I want to know what led you to getting your thyroid. Cancer checked in the first place. My sister was diagnosed with thyroid cancer the year before in two thousand and ten she was symptomatic and she had to have a total thyroid ectomy so my family begged me to get tested. Didn't have any symptoms Adams But I but I gave in and was tested. You certainly peaked. My curiosity listen now to leases documentary. it's January two thousand eleven and I'm sitting in a small room in Mount Sinai Hospital in Toronto. I'm nervous best. The doctor comes with a student. I've met him before but we haven't established any kind of report to me. He's just a man and he says looking looking at his notes. It looks like cancer. Your thyroid will have to come out. It'll probably happen in the fall. And then he excuses himself in student and leaves leaves the room. I sit quietly. Don't really feel anything. I text one friend. One single word Cancer San going to my best friend. Vanessa's we're going to talk a little bit about. Oh cancer and when I got it she was my best friend during the process during the incident. So we're going going to find out a little bit about what she thought and what she felt. Oh Hi I rang the doorbell. Rebel is looking for Vanessa Gary on tape. She's never away. I guess sorry about that I got you have your gear. All the interviews are kind of nervous to talk about cancer. Yes interested and you and I've been friends for ten years I think so and yeah. Do you remember remember when the first time that you heard the word cancer or some hint that I'm might be be going through that when your friend tells you that they might have cancer is cancer is very scary word and it automatically equates to death. I think that's just where my mind goes so I was very scared and then when I found out what type of cancer you had we did a little bit of research on it and I felt reassured in in Weird Bay. Do you remember when I was like about the possibility of being sick at that time. I remember actually you coming over. I think we had some wine that night. I remember you came over and you told me. View definitely seem seem scared Sarah. demy surgery is pretty routine but there are risks risks. After my operation I ended up with dangerously low levels of calcium that caused something called. Tiffany tenny is a painful series of muscle spasms soms intense cramping and even seizures. In my case my hands actually started changing shape. Contorted you get locked into this weird position. It felt like going into. Rigor mortis while you're awake. My perception was affected. I had trouble understanding what people were saying to me. Tutton made me feel the sensation and deep fear. That was that was awful. I was like you just didn't seem like yourself. While you're your body was lake like pretty much shutting down due to lack of calcium so you you remember. You weren't making any sense than I remember that at that point I was. I was very weird. I I didn't understand. It just seemed like it was a very simple solution to remove the cancer. And that's it. I just didn't think that it would. It would kind of go haywire to fix it. Your body is bombarded with calcium like twenty eight grams. A day by I've e- or drinking calcium seltzer tablets but as he got better your calcium levels can surge creating another round of dramatic and scary symptoms. The doctors call call it bones stones moans and groans and upset. This'll took several months to normalize. Your mood was was fluctuating so drastically I don't want to say I was walking on eggshells but I didn't really know how I was going to fit into your life. What he meant because you seem like he wanted like you wanted to be alone and you didn't want anybody around? You didn't WANNA go out. You didn't want to socialize. They whereas like you had like a sort of paralyzing fear of whatever I remember you one day I came to visit you you and you told me that you had sought on the couch all day and you could not get up I. I don't remember that. Yeah so you said that you had not moved from the coach out of depression or fear and I guess because your mood was so like I think there was just like this battle going on in your body and you didn't really know what we you weren't lease you were a completely different person while it's actually. It's actually kind of hard to here. Yeah I thought it was crazy that that could happen to somebody that they could go from. Just just being this. The happy like funny charismatic person to just having this Oregon removed and then completely he's shutting down as a person. So why am I living this now and dragging my best friend through it. Because I'm trying trying to make sure you understand. Not Having thyroid does make a difference to your life sometimes a big one but that was nine years ago. How do I feel now? Look at me and you'll see a pretty normal person I think I'm a producer at CBC arts behind the scenes. I don't feel so great for instance this week. I've been tired like all the time but I can't sleep. I feel hot a lot. That can be really embarrassing. My weight changes with my fired levels. It goes up and down for me. That's sucks Tux. I'm on camera sometimes. Feel a lot less control than I'd like over the way I look but I'll take that it's way way better than having thyroid levels. That are too low. That is a very very dark place. You feel really tired. Your joints hurt. You can be remarkably depressed on the opposite end. If I go to high the the world gets fuzzy and loud I can feel irritable over caffeinated. I'm nine years out of the thyroid cancer diagnosis that changed my life. And now I'm left wondering did all of this to happen. Labeling of this as a non cancer sir is probably correct and unfortunately many of those patients got diagnosed cancer. They had total fire rejected these they had radiation. That was unnecessary. Sir That was Dr Paul Walsh speaking in two thousand sixteen. He was a world authority on thyroid disease at Mount Sinai Hospital. He passed away in two thousand eighteen. But here he's speaking about a lot of firewood ectomy as maybe being unnecessary hearing. This is really difficult for me. Now the the thing is Dr Paul Walsh was my doctor. The one who diagnosed me in two thousand and eleven and ordered my thyroid ectomy so what changed in those few years diagnosing and treating thyroid cancer. Did I have a needless operation. Should I still have my thyroid. It turns out over the past few years. There has been debate about whether full thyroid activities are always necessary. There are questions about whether popularity carcinoma. The type of thyroid cancer I had and the most common should should be aggressively treated. Dr Anne. Sokha of the university health network is running a study called active of surveillance. The study gives thyroid cancer patients choice. If you have the most common types of thyroid cancer capillary carcinoma and it meets certain criteria Korea as in. It's not too big. It isn't too close to your lymph nodes or other more dangerous areas. You can decide to keep your thyroid and be monitored to be clear here though this means you will also keep the cancer. I wanted to talk to Dr Sockeye to find out whether maybe my story could have been different. Frankly Really I. I wouldn't be able to know we carefully look prospectively at these ultrasounds and we decide about eligibility is really a careful selection process in terms arms of which which patients and specifically the tumor characteristics may qualify. I wouldn't be willing to look at your ultrasounds or have one of my colleagues colleagues look at your ultrasounds and I don't think it would help you. I think it could harm you and I think that what I'm thankful to you for is giving us a platform form to inform other patients that it's okay to ask your doctor. Do I really need this biopsy. Do I really need this operation. How will this benefit me? I mean what is the evidence for this and do I have any other options because all of this is clearly changing in our field. But it can't change anything for you. You can't put back the thyroid. We can't really change the past so a patient who's had third surgery from a practical standpoint. We try to optimize. He's the new normal but we can't really change the fact that they've had that operation. Dr Sokha's right. My thyroid is gone. There was no choice back then but there is. If you're a patient being diagnosed now obviously going about your life with cancer in your body is not going to be everybody's as ideal outcome but this change in thinking about how thyroid cancer is diagnosed and then treated is a huge development. Awhile ago somebody suggested to me that if we didn't call popularity carcinoma cancer. That more people would choose to keep their thyroid. That's a thought I struggle with was what I had cancer or was it not. Does it make more sense to to change the word or change the way we think about the word. If my doctor hadn't said the word cancer to meet might I have asked more questions. Hey Jason come in my sister. Jill had had thyroid cancer the year before me and very recently nine years after her own thyroid to me. She's facing the possibility of recurrence of cancer in one of her lymph nodes when she went to her doctor to talk about it. They had a whole different kind of conversation about cancer. So you into the endocrinologist vice last two week and he was telling you that you know it's possible that that the cancer has back but he he talked about it in kind of Ed. He had an analogy. That was different than cancer. Can you just tell me. I went to the endocrinologist a few days ago and he compared the possibility of having a cancer. Recurrence it to having arthritis in that it's manageable and maybe something that I have to live with for the rest of my life but it would would be similar to arthritis in that. I have a flare up. I go for a Kurdish zone. Shot and two or three years later. I have to go for another so basically saying that. Yeah the cancer cancer could be back but that could be treated. We monitor and treat again as necessary. Do you feel like that's a different conversation than you would have had with your doctor when you were initially diagnosed Absolutely was initially diagnosed. It was yet. You've got cancer. You'll have your thyroid it removed. And that's that nobody ever mentioned the impact of not having thyroid. Nobody even explained to me. What the firearm was? I also found out when I was doing my research and I still didn't even understand the magnitude of not having a firearm until after the surgery and I started realizing that my body was really different. I think nine ten years ago when I was first talking cancer it was cancer and I didn't know you know that this is a cancer that could be something that I'd be living with for the rest of my life so the conversation with the endocrinologist last week was definitely different. It was I opening and felt better than the first time around. I'm glad my sister gets to have a conversation about cancer answer. That's less full of fear. I remember the first time that word was said to me and it was a euphemism for getting sick and dying. I've had nine years of experience. Now Oh and the word just isn't as scary to me but I remember how I felt then and if you get diagnosed tomorrow I'd like to think that you'll have the agency the the resources and the support of your doctor to ask all of your questions and make the decision. That's right for you. The lease Hossain produced that documentary with White Co producer. Jeff goods under the dock project mentorship program and leases with me here in the studio you know I was sitting there when Dr Anna Sokha the endocrinologist. Who's in your documentary and we'll hear more from a bit later? Peter Politely declined to comment on your diagnosis and surgery. How'd you feel about that? I mean I. I think that it was appropriate for her to not look back and I think she she was concerned about how that might make me feel. Has any doctor. Flat out said that she didn't need to have your thyroid gland removed. It's never been flat out said but it certainly been employed you. You asked the doctor. I'm GonNa ask you if you knew back then what you know now. Would you have said No. Thanks to surgery knowing what I know now I would have said no thanks. Wow that's that's pretty powerful and a lot of people are going to be listening to that very carefully. One more thing is well in your documentary. You talked about cancer being a scary word and I I think it is for most Canadians as a radio producer. Who spends some time explaining things to people? How can we make cancer less scary? I I think that the word cancer is a bit of a euphemism for sickness and death and it would be really helpful if we could open up that word a little bit and understand that means very two different things in very different cases so usually we're in the business of trying to simplify things. I guess what you're saying. Is that in this case. Maybe we need to trust the intelligence of people and and make the word cancer more complicated. Because it's not black and white more complicated and less mystifying. Thank you for the documentary documenting and thank you for speaking with us. Thanks so much. Hey it's Annamaria tramonte and I'm excited to tell you about my new podcast fast. It's called more and be talking to people. You may think you already know until you hear them here. We've got a little more time to explore and to probe and even to play a little so get ready for the likes of David. Suzuki Catherine O'Hara Margaret Atwood. And many others. You can find more with Anna Maria tramonte wherever every. Get your favorite podcasts. You're listening to white coat black art this week. A type of thyroid cancer. WHOSE PROGNOSIS IS A lot? Less scary buried in its name. It's called low. RISK PAP Larry Thyroid. Cancer its incidence is increasing faster than any other cancer in Canada until recently that meant more Canadians Indians getting surgery to remove their thyroid glands. That's what happened to lease Hussein. She explained her documentary but it surgery that can in many cases be safely. We avoided a researcher in. Toronto is starting to change the conversation around what to do with these low risk cancers. Hello my name is Anna Sokha and an endocrinologist criminologist and clinician scientists at university health network. And we heard from Dr Sokha in leases documentary. I spoke with her at university health network where she works as an endocrinologists and researcher. I began by asking her about what doctors recommend instead of surgery to remove the thyroid cancer. What do they mean by active surveillance in terms of thyroid cancer? Her essentially refers to strategy. Where a patient is given the option to not treat the thyroid cancer and specifically not have thyroid surgery the patient is closely followed clinically and with tests such as neck ultrasound blood work and the Russian for active surveillance is that for small tumors rumors that may not necessarily grow or progress? In a patient's lifetime patients may have the option to avoid surgery as well as potential complications. which can in include damage to the nerve that recurrent laryngeal nerve which affects the voice damage to the parathyroid glands which affect calcium balance Other surgical surgical complications like bleeding or anaesthetic res- and also the potential for lifelong thyroid hormone treatment. which is always required if we completely remove the thyroid read and sometimes required even with partial removal of the thyroid based on the research? You're conducting the research that you've reviewed. How risky is it to watch and have active surveillance instead of going ahead and having the cancer removed so to date to the in the published literature which is largely based on poplar blurry thyroid cancer less than one centimeter without evidence of spread to other organs were or invasion invasion of other tissues in the neck? There has been no reported deaths due to thyroid cancer under active surveillance so no one has been reported to have died from thyroid. Cancer who has has chosen under those specific circumstances with close follow up not to have an operation. That's pretty powerful. I think it is and that's why we feel this research. Research is important. What we're offering is not necessarily pushing active surveillance versus surgery because some patients may not feel comfortable with active active surveillance and knowing that they're living with the cancer and so this is not the right choice for everyone but what we're promoting is that patients are actively given a choice this and not necessarily told that they must have a thyroid ectomy so it's audible pushing one specific strategy? It's about giving people a choice and having patients more actively involved in that choice based on what you know now. What proportion of those patients who get actor surveillance actually actually end up needing surgery and getting surgery down the road? There was a recent Interest very interesting systematic review and Meta analysis published Russian. Thyroid this summer examining the world outcomes of active surveillance. Approximately one and a half percent of the patients enrolled in active surveillance. Lintz studies had progression of disease into lymph nodes so the vast majority of patients did not have progression of disease. We need to also so remember that these patients are living with the knowledge that they have a cancer. That's been Bhai. Obse proven and so another important factor is to consider sitter that some patients simply do change their minds even if they do not have progression of their cancer. And that's actually more common for patients to crossover silver because of anxiety or preference to just have the surgery or timing of the surgery. Perhaps they didn't want surgery at a certain time point in their life where there was something critical going on. They wanted to delay the surgery. But then it's on their terms If their disease has not progressed and this is something that's available to any active surveillance patient and they changed their mind even if their tumor never grows or if they do not develop progression of disease by their criteria. You see patients who've had surgery is part with your practice. How much do they regret having surgery? First of all when you're talking about decision regret it's almost kind of unfair fair to ask because decision regret. Means you had a choice right so most people did not have a choice. They were told you have cancer so you need to have surgery. So how can you regret doing something that you were told to do. Given the growing evidence for active surveillance silence as a as a safe choice in carefully selected patients. Some have wondered whether we should still be calling this disease. Cancer her in any case well. That's a great question and remember how we define whether it's cancer or not is really on what we see under the microscope. That's the current definition. So if a Vira tumors biopsy and there are certain characteristic features of cancer most commonly poplar cancer and then this is confirmed with surgery. It's called a cancer so it's based on what how we see under the microscope. Not not necessarily based on long term patient outcomes. So that's really kind of a question is should we be defining cancers by the natural history of what what happens to patients particularly if they're not treated or should we be defining it by what's under the microscope or by the genetic profile which is a new thing that's kind of also evolving a new understanding and at present. We are still calling them cancer. But remember if you don't put a needle in it you don't Oh call it cancer because you really don't know so this is where with the smallest tumors. We really need to carefully consider. Do we need to do this biopsy or not because because once we do that biopsy and we get the word cancer we know. This is a life changing experience so I guess some patients might actually be better not to do the biopsy is is. Is that what you're saying that like this is something where you discover. One really should be discussing it with the patient. And whether a biopsy makes sense in the context context of that patient and what the patient wants but absolutely for these micro carcinomas though you've referred to so tumors under one centimeter or even if they're suspicious looking based on their ultrasound criteria but no evidence a lymph node metastasis. It is actually not currently recommended to buy see see them under the current American Heart Association guidelines as well as several radiology guidelines. But it's still happening so that's one of the things that might be worth trying to change. I think you're right but at the same time change in practice can take some time it takes education and I think in this case it also takes educating seeking patients because patients as well. If something is suspicious the first instinct is find out what it is and remove it and we need to fully inform foreign patients of all the consequences of doing that biopsy and whether that may be appropriate and if that's consistent with their their values and what they would want us to pursue. Thank you for speaking with me. Thank you for this opportunity. It's important to emphasize the doctor. Soccer is only talking about avoiding surgery in patients with small tumors that having happens spread beyond the thyroid gland itself. She says it's essential that the ones who don't get surgery be followed closely as part of a research. She's taking things even further by asking whether cancers like these even need to be biopsy D- advising patients that the best course of action is to wait can sometimes be a tough sell. It's tough for some doctors to. That's our show for this week. We'd love to hear from you if you had surgery for thyroid cancer. You're we'd also like to hear from people who've been told they have thyroid cancer and have chosen active surveillance write to us at CBC dot ca slash white coat our email address is white coat at CBC DOT CA. I'm on twitter at night shift. MD and the show is at CBC White Coat. We're also on facebook. Don't forget you can catch up on any episodes achieve missed and get the show every week by subscribing to our podcast if you wanNA listen live or on demand make sure you download the CBC listen APP and if you're looking for the latest health news and analysis subscribed a second opinions the weekly newsletter from CBS's Health Unit and subscriptions got CVC DOT CA. This week show show was produced by Jeff goods and lease sane with help from sogeti Berry digital producer Ruby wease and the rest of our digital team our senior producer. Is Donna Dingwall special. Thanks this week to Joe Johnson at the dock project mentorship program. That's medicine for my side of the Gurney. I'm Brian Goldman. See next week for more C._B._C.. PODCASTS GO TO C._B._C. Dot C._A. Slash podcasts.

thyroid cancer Cancer Larry Thyroid producer Dr Anna Sokha Dr Brian Goldman CBC Canada Toronto researcher CBC MOORHEAD Australia Mount Sinai Hospital Soccer Mount Sinai Hospital depression Oregon American Heart Association
#112: Talking To Your Kids About Sex (with guest Dr. Joe McIlhaney)

Parenting Great Kids with Dr. Meg Meeker

45:47 min | 10 months ago

#112: Talking To Your Kids About Sex (with guest Dr. Joe McIlhaney)

"Today's parenting great kids is brought to us by Byu radio friends. The Lisa show is a two hour weekday program from Byu radio for parents hosted by the friend. You never knew you needed writer, comedian, wife, and mother Lisa Valentine Clark Lisa. Show is now available as a podcast. So you're going to want to hear these fun and useful conversations listened to the Lisa show wherever you get your podcasts. For thirty plus years. I've seen every type of child. Throw up instead of giving me what I wanted. She gave me what I needed. Which was truth down? Emotions win. Let Truth when do your very best. You have a lot of fun while you're doing better. You get at something the more fun you're going to have at something you. MOMS and dads are wired with everything. You need to be a parent to a great kid. Welcome to parenting great kids. This is episode number one hundred twelve, and I'm your host Dr Meg meeker today, my guest and friend Dr Joe mcelhinney will be joining us, and he has quite the resume Dr. mcelhinney is a board certified obstetrician gynecologist. He founded the Medical Institute for Sexual Health in Nineteen, ninety two, he received his BS in chemistry from Texas Tech University and graduated from Baylor, University School of Medicine after completing both a pediatric obgyn residency, he joined the Air Force for two years acting as a general medical officer while serving as a private practitioner Dr mcilhenny was instrumental in introducing laparoscopy gynecologic laser surgery and microsurgery to the medical community in Texas Dr mcelhinney. Board Saint David's Hospital in Texas, where he started the state's first women's health centers, he left private practice in nineteen, ninety, five to start the Medical Institute for Sexual Health and continue to do research on the problems of sexually transmitted infections, non-marital pregnancy and HIV AIDS Dr. mcelhinney was appointed during President George W Bush's administration to serve on the HIV AIDS. Advisory Council and the Advisory Committee to the Director of the Center for Disease Control, he's authored eight books, and sadly Dr, mcelhinney lost his wife Marian of fifty eight years to dementia in twenty eighteen. He has three grown daughters and ten grandchildren. Grandchildren as always I'll share my points to ponder, so you can start using them right away and police as a reminder. Don't just download the episodes. Click subscribe because when you do that. You are joining my parenting. Revolution and every new episode will automatically show up in your subscribe list I promise. You won't regret it. We're not only on I tunes, but the PG Kate podcast is also available in the Google play store and on stitcher. So no matter where you get your podcast, subscribe today, so you won't miss a single episode parents. I have to tell you about a free Webinar that. That I just created about how to be an effective end, calm disciplinarian, I created it because this is something that I would have loved to had when I was raising our four kids. If your tired of yelling, nagging repeating and begging your kids to listen to you, you need to listen to my webinar cover, the foundations of effective discipline, and how to know if you're hurting or helping your relationship with your kids, I'll share the one thing that affects your discipline style more than anything else. I'll show you. The three strategies for defusing difficult parenting situations with your kids and the secret to. To getting your kids to behave without yelling or pushing them away, you can learn how to discipline consistently without blowing your fuse, you can get your kids to listen to you without yelling and you can quit bad behaviors like yelling or nagging you can nip the temper tantrums and be the calming force you, WanNa, be in your family. If you're interested, please head over to my website. MEEKER PARENTING DOT COM to day to register for this brand new Weber, their limited spots and I'm not sure how long will keep this training open force, so please go over register. You're going to love it. I want you now to listen in on a conversation that I had with Dr Joe mcelhinney. You're going to learn a lot from this conversation. Well Dr mcelhinney. Thank you so much for joining me today on parenting, great kids, it really is such a a joy and an honor to have you on. You really are one of the smartest men I've ever known. Rigor and you're talking. Right Hawaii non some smart doctor. So very much, you're very. Well you're you're very very humble. You're not attrition, gynecologist, retired and many years ago. I think it was in the late nineties if I. Remember correctly. You and some other physicians began the Medical Institute for Sexual Health. Can you take us back to that time? And what made you start that and why? You thought it was so necessary? Assure will make you know. We're hearing so much about being abused, but there are guys that really respect county, respect women and I'm one of those one thing at a why three daughters that I loved in. I've my patients were all women? At any right as my work was infertility when we for Scout, these impart ladies which. Include just destroyed infection from primary CLA media. Ask You are from her sexual had your back in, and they had no clue that fertility future when I got married in one at children. and yet when we are a hat, tech, national and international meetings without fragility here never was there any hyper? Not once about provisions of these problems that everybody they're newer is also. The sexual vomit were having soon so because my. Just hurt my heart. Disease Couples come in. And I couldn't say you know where this came from. Do that commander of having kids so in order to educate them. It's writing of its books than I started the medical institute primarily as a scientific group. Point this out. Through our science, and then through education, so I thought if we had good size then able to give this to people around the. Lake it in bed that in relation into their educational programs US alliance how the medical is is started nineteen, ninety two. I left on medical practice ninety five, because my wife and I felt like we were supposed to do that now. full-term in so that really. Really in a way, I was at the medical practice, but we just could not stay there. Knowing that there was such a lack of information, so many young women particularly get hurt. So you. Were aware as your. Colleagues were that Obgyn's knew that there was an epidemic of sexually transmitted infections, and they knew the havoc was wreaking on women. Why do you sink? Other OBGYN's didn't speak out about it. I think for a lot of reasons one is that if I did bring it up. With their patients second doctor just seated individual girl who has actually committee. all he has to. Say You have media. We'll give you some antibiotics for that occurred. But if he says you know, this came from your sexual involvement. Then, he has to go into the whole discussion off sexual behavior, multiple sexual partners, which is the. Problem of people infected with these. And it gets into home morass of information. He does not have time in his office renovation the thanks he does. I would argue with the I think doctors should discuss with every single. But I think is primarily that the time was an issue I think they didn't really quite know what to say. Actually Aleph listening developed a theoretical model of change of based on the Ferry Trans Theoretical model change. To help train positions in nurses and healthcare providers helicopter. But unfortunately most of the doctors country didn't study from that program. But, we could teach them how to do it. Authors listening tonight we, we are enlarging. You know I understand that because I work in a practice with a doctors and I have what I call the luxury of time to be able to sit down and talk to my teenagers because I see kids up to twenty, and it does take a lot of time, and it takes a lot of when I start to tell kids further in their parents. What's really out there? You know their jaw drops open and then I have to sort of walk them through like okay, but but what do we do now and I think so? So I. Think Your your time when we talk about why doctors don't do it really is a time issue because I think that when people find out about that stakes, ten plane their doctors. Why didn't anybody tell me give us a little bit of a run down because we know the CDC says there's a huge epidemic of sexually transmitted infections among teens and young adults. So can you talk to us about the gross of that from the nineteen seventies? Until about now a situation, you say, the nineteen seventy eight must would not say that. But Yeah You well know that in the one thousand nine hundred seventies. The evidence was beginning to develop, but nobody really paid much attention to. Arri nineteen ninety s Johnnie him along, and that alerted people to the fact that sexual activity could result in a really bad problem. HIV, we didn't know right away that it was caused by virus, but By the mid Eighties by eight hundred I'm sorry. My nineteen ninety-five. We knew what it was. And that it was resulted of sexual behavior, well a what people don't realize was about nineteen eighty to a Time magazine as cover. Article had the new scarlet letter about herpes. And it was about nineteen, eighty, two, three, four, five, the US physicians who saw when he started seeing an epidemic of warts, a genital warts, and then it was about that time we realized surgery. All cervical cancers caused by HP. Tap Loma virus. There hundred different strains, but several of those strange actually cause cancer because I persisted cancer, the painters cancer of all cancer John Cervix is more common today because young people are involved in sex so often We're seeing epidemic of cancer of the throat. In, PHOENIX. In a people that have been involved in oral sex in the past on, if addicting of that today now, the problem that really bothers me is at in the in the eighties and nineties. There was a lot of attention of these. but today you'll almost nothing. And yet there's a bigger epidemic today than we ever has been there twenty million new infections. AM probably at least forty five percent of that is among a young people below the age of twenty one. In most of its among a young Dawson kids in their teenage years, and he's a devastating epidemic. We're talking cancer the throat male. Cancer, the cervix and we're talking about infertility. Now one of the things that really bothers me about his to see. Don't get me started because. I know what I'm doing. Those tasks your question in there you go and now well. The problem that I see is that the low income people are the people that are suffering the mows. The behind come, people could afford to coming off as may treated for Inter Chelloti, but the low income people could afford to commute. There are two other people that are here in retail is. the low income. People are the ones that are suffering in. In l'aimable ladies just as much as anybody else does in their suffered because they. CARE. This message. You were talking about today about sexual. Until marriage and that is the answer. I'm up to put it bluntly, but that is the answer that young the amount of sexual involvement Jelegat married. Then is the answer for these low income. People would also for the. For Everyone? So how many sexually transmitted infections are out there? Are we talking twenty thirty forty different types? You said what with HP courses about one hundred? Years about a dozen that caused cancers, but it's really it's this what five or six or seven? That are a really. Bad HP viruses and those are the ones were starting to immunize against, but how many other types of infections are there? There are over twenty sexually transmitted diseases defined by the by the Centers for Disease Control Prevention. I'll just out. One of the people probably don't aren't aware of except the advertisement, so TV Hepatitis C.. Other one point three million people. Being Killed By liver cancer, ninety percent of its caused by Hepatitis C.. In Mesa sexually transmitted disease, but also of course transmitted by Abby druggies. But it's a terrible problem across the world in in this country, also unless somebody can afford it to get the medication to prevent. I'm sorry. Sure the hepatitis C. Yeah. You think will say tonight on. is destroying members in causing cancer to in this country. They're seventy six thousand people in this country, dying every year of sexually transmitted diseases including HIV. Thousand and end over fifty percent are concentrated among our young people like you said under twenty, which is really disturbing, because they don't make up half of our population, so there's a disproportionate concentration among young people rather than people older people. I'm sorry. Now, do you remember a number of years ago? When Dr Julie Gerber Dean came out and talked about prevention of cervical cancer in women. I think it was around. Two thousand free tonight testified at Congressional hearing. But anyway in she was talking about the ways to prevent cervical cancer, and there were two ways to prevent cervical cancer that she came forward, and said, and that was reduced the number of sexual partners to as few as possible one and delay the sexual debut as long as possible. which to me meant till you're married, so that sounds about really what you're saying here and people make say we'll wait until marriage. Isn't that sort of prudish thing? Just say, or that's very unrealistic. But that really comes from the head of the CDC. Why don't we know about that? Why doesn't the country know about these issues? One of the problems. Is that the people of every kate sex anywhere anytime with anyone as often as you want to have dominator culture. And I have a hard time explaining one, but they have Perhaps it's the fact that why plane here good, who is a primary? Producer of materials in education of young people in our culture today, gets five hundred million dollars from the federal government. In the groups around the country that are advocating supporting manhood in West is claimed period I'm using them as the group. because I have a coalition of Alan guttmacher seek US advocates for you the national campaign to prevent teen. Pregnancy which I think has changed ranger this past year to. An in a number of other groups and they actually. Stolen the attention of young people across peggie. Let me give you an example avenue. Regis thing to me it just just I was just brought in. That was just learned about it on the voice and other primetime popular television programs now there's an advertisement for prayer. Now that's that's a medication that person you say if they're gonNA have dangerous sex sex with somebody that job be any worse and I don't have an argument with Yeezy. Argument I have though is that there's a Domo's advertisements on Primetime TV. When our particularly lesson y'all were watching. This guy holds up appeal and says I can intersections. We'll personally all of the want to be. Now. Yes, she can be safe from. Get make driving, but you're not safe from committee, gonorrhea and syphilis and herpes HP. All these other things that are laugh. Devastating Factions May. But this is on Primetime TV and again against brainwashing kids. And yet that company makes a drug is making money off. We don't make money off of telling young people that. Thing for them, the way Taylor into adult life of the least baggage release. Just don't say. The message I want to get across across this country. Is. For young people say Oh, well. Of course you wouldn't have sex married. Let's stupid because you get diseases and you get pregnant and you have problems emotional problems because the brain is molding by these experiences. We don't want the brain to being moded against just a normal ago. Sexual that he might need. An so. I think it's time. For A Romanian groups around this country that care about young people to come together to change this culture. Not We need a new sexual revelation. Is Country in believe? It's about to start. I agree because what I'm finding is that? Taken care of a whole generation of kids now is that. They're wising up and they WANNA different decisions than their parents did and I think they know they're much more savvy about what's going on and one of questions I get a lot. About is the emotional aspect of sex. I think just to follow up one thing you're saying my belief is that the reason nobody hears about this and the reason that we're promoting so much sexualization of our kids and sexual activities money. It's just money you know. Know. Sex sells two young kids know that television is geared more towards young teens are rated. Movies are than anything else, and so I think once kids realize that parents realized that I really don't want an industry that they want to do is make money off my kids to explain my kids. Hopefully, parents will stand up. Many parents will say well. I really don't need to worry about this. Because my child is getting sex ED in school. Will you talk to us about what sex? Ed is in the Public Schools? What's being taught when it starts in that so forth because I know you're an expert on that as well. Okay. Let's just take what's going on out today. The! Planned parenthood coalition. Has Been Putting on a social media. Also on their website, information by Sipe for parents to teach sex ED in the home. If you go on that Web side. They immediately, and you put in the word abstinence. They will say abstinence in our coach. People listened may not even understand what out of course courses, but our courses. The genitals are against each other. Nakedly. Without having attraction. And when player who talks are encourages parents to teach about sex. Add about sexual accidents, which most parents were for their fourteen year old girls. Yes, they also teach the kids. How have? Outer Course and so this is sort of thing that's going around now about. The Kobe. But what they're doing in their materials. Tried to this when they were in schools was exactly the same thing they they are encouraging people. To have a sexual intercourse in the reason is because for one thing you're. You're right about money but the other is because they do not believe in the can be sexually absolute L. I just don't believe in, and so that's why. Push the condos contraceptives so much and yet they never tell. They talk about We. have been looking at these products for years making you have to. We have never seen one of those programs that actually tells the truth about how often common sale health murky focus not want. Don't tell the truth, parents I hope you're enjoying my conversation with Dr Joe mcelhinney. We need to take a quick break, but don't go anywhere. We'll be right back with more of my conversation. I'm glad you're talking about this. Because people here, parents will here well. They're two types of sex ED, comprehensive sex, education and abstinence and people. Parents will say will obviously I want comprehensive sex said because I want my kids to know everything. Do. We know if comprehensive sex ED reduces. Sexual activity or does abstinence reduce sect? What do we know about how well each of these programs is working? I'm subway Jessica question on. There's a researcher nine Stanley been involved in this kind of research for many many years. And he just recently completed a very indepth. Research hyper that he published just recently just within the past couple or three months, that shows that the company's six firms across the board. Almost none of them have any costed him back as a matter of fact A. Number actually caused more albums been they They saw with their programs. Any did show in the same study of sort of absence problems. If you WANNA use that word farther, but. Encourage young people not about sexy. That's our as actually a suggestive of there being successful. Eliza Martin. And the ACURA and weakened concern that people robot that paper Roosevelt I'm sure you. Know rates to. Commit Excellent research and anyone. That's our school board. A school district that has a concern about the second. You GotTa copy that. They need to bring that to their school board. Art To those who are in charges shooting their students. Unfortunately I think a lot of the teachers. Whomever is teaching the sex ED IN THE SCHOOLS Is Not. I don't I. Don't mean to be demeaning or critical of the people teaching it, but a lot of times the curricula. Medically sound and can be outdated because it has to be you know pass, although strict regulations of the state and I and I don't know I I, think the hearts of the teachers are right but I. Just Kinda wonder you know how much they know about the medical facts and I think that's going to have a huge impact on what they teach and how they teach it, don't you? Absolutely, and that's why focus on the problem of contraceptives, because in the compromise so-called I always tell him so companies of sex. A big focus on contraceptives, but like I. Say they never say that. If condoms are not used consistently and correctly, it's as though they weren't used it. All and CDC actually says. So they must be used consistently retrieved every single time incorrectly, which means I never can be turned inside out and use the light are titan all early. Thought to be affected. If that ever happens, then incomes are not effective. But even if they are perfectly only reduce the risk of the common diseases like non arena. Mennea Irvy's and a little bit. With reduce the risk of that fifty percent. Even whether US absolutely perfectly. Let me ask you. How many high or college has perfectly every day like I suppose to their kids? They don't do anything with that kind regular. and. How can we expect them in the heat of passion? Always use condoms contraceptives appropriately. A study that chosen it cohabit to young people. On Birthday girl control else twenty percent of pregnant by the first year because they just don't use your heart control bills ride even though the right there in Woodside table. Relationship and this is never pointed out we need. We need parents to hear what we're saying. They may because they won't. What's best for the kids and these things limit their future when the girl gets pregnant or she gets a disease. In moves on into college, while actually particularly lower income people when they get. They. Don't even get through CASTA lot teams, and we want those young people to succeed. Alphabet low income environment. Don't we? We do and it really isn't about trying to stifle kids or be controlling of kids or You know to be kind of prudish. It really is for their physical, sexual and emotional health. My far and away the the best and healthiest thing for them to do, and I really don't think that a lot of parents appreciate how much healthier and how much better kids feel if they postpone, you adopt a free to Bush wrote a fabulous book called hooked where you talked about the neuro physiology that that takes place during sexual activity. Can you talk to us just a little bit about hooked? Up to. This book came out. First came out two thousand nine. It came as a result of I going to see Joe J. Deed. At the NIH jagged in the nineties started in. Our own analysis because it's a magnetic can't brains or that we were can't ski in CD, Scams Use radiation, but when he could use these banks to start studying unless. Brains on sequential isis year after year he realized it ranges drawing in developing but the. Last three from CORTEX, and that's why you now. You're so much about that. Lessons don't have fully mature judgment until the mid twenties because the from Texas toby develop. It's not the southern brains aren't completely. They're yelling the mid twenty. So that's one thing. The other is that we now know clearer that are experienced Mos- our brain. Those folks in the brain that you see in those pictures are where things are stored. And when we experienced something I got wonderful. Play our our. Football game. Are here beautiful music, those things mold. Our brain physically changes the brain cells in the way. They're hooked up in some almost any experience. We have changed his brain. In one of the most powerful experiences we have sex when we are involved in sex are our skin-to-skin with the most rain. To adjust to that experience, and if we end, it's a beautiful thing, because if a couple gets married, and then begins having sex Moser you see, that is such a healthy, warm and wonderful thing. domains produce which makes them on. Sexy Ganz America all. The oxytocin Awan produces then when she skin-to-skin with her husband by answer to to hurt young, and makes her trusty, and in their sex video resulted babies. Will Bond bonded together about Oxytocin by suppressant in my way I can grow up in a family with the government debt. This is a beautiful mechanism. I think personally that God designed for us to make our lives better and he's actually if you do I attended. Obama's says introduced in Genesis as a very best wife for human beings to live together Ryan. So, we see this beautiful pattern, but he can be heard to be destroyed when young people start having multiple sexual partners of rain, most except that is normal thing Then they just do the next time there with another or girl have sex because it's whether brains in molded. Now, UNMOWN can have because people do often lately. Most people ultimately do get married at least certainly have up to this point in our society. and the May have this Tennessee to. Seek out, somebody also what we say today is if you start seeing a fractured your marriage, any fractured elsia counselor. Go See your pastor, your prese you're. GonNa Psychologists Yoda somebody. Don't let that fractured G. s she. Of every. Other sexual artist because it can destroy your ice chip. Absolutely so let's say you have one man and one woman that have never had sex with anybody, and they come together, and they're bound tightly. If you have an I, tell kids. It's like taking two pieces of fresh tape and sticking them together. They're hard to tear apart, but if you have Kids have had multiple multiple partners. Is that to say then with partner ten? They can't really bind to that person. Or. Is that an overstatement? I think it's more complicated than that thinker probably is an issue there. But I think the broader issue is, it's our brains in voted to see that it's just a normal way function, and therefore they. Often today on. The cause of the mode to to not accept that is the best way night them will go on with another sexual partner by the way of Meg that's one of the reasons why we you ju- The Urban Day. She said delay the onset of the sexual abuse latest fossil because we have very clear studies showed the later of persons starts at sex fewer sexual art. They have fewer sexual partners. I have in the less chance of having these diseases including HIV. I mention one more thing image time. We have I'd like to thank you mentioned the success. Because so much of the focus of our work now is to emphasize that it's not all we do is such power. There's a aren't as brooking institute in Washington DC, this sort of A. Liberal group about Ron Haskins in who are no harshly and Isabel saw Developed, this study that showed that you'll be. Will graduate from Moscow. And get a job. Even a minimum wage job, then get married and have children in that order that only three percent of them will end up in poverty ever. It's a dramatic scene. A Brad Wilcox at the University of Virginia expanded on that actually he produced a grocer, actually very informative of look what about that I would have to get a hold of interested in this area, but if we just get people interested. They were saw Hilton and asking for. Arming Bay, but you and I can say Hello Sir motion because we know. Studies clearly show that when guys are girls either one we. Could ask fewer Collagen. They're not married. They're much more likely to be depressed. As much higher hisses, suicide Timpson, says ideation a much higher rate off suicide sale. And this kind of research actually has been getting stronger more recently, not weaker. We don't want young people to be pressed in college because we're village their studies in. College s away in achieve writer So this argument for teaching, kids and young adults to Not have sex except for with one person really isn't a religious argument. It really is a medically sound argument and also psychologically sound you know parents want their kids to be emotionally healthy, and yet they never think about talking about sexual activity as a big part of emotional health, and I think that parents really need to understand that because Younger Diseases, and and that's horrible, but in my experience kids and parents will say okay. Talk to me for that about five minutes, but talk to me for about twenty five minutes on the emotional impact of. Sexual activity kids. What's the future hold for sexual activity and our youth? We've talked about this. We know that teaching kids to abstain until they're married is the best way to go medically. Do. You think that we can change the tide. In America. Yes. Raises. because. I think it's gotten so bad. That a paper finally, saying enough is the even parents, even parents that perhaps would not even emphasize sexual absence in in marriage are saying this crazy and I think that advertisement Where the guy says I can have sex water, three or whoever? I don't think. He really thinks that's healthy thing for kids so I i. think that we have splintered Kamara like Robert Tallies book years ago. we our culture that has really slip deeply into tomorrow in this. second I think because of that that people now are going to wake up to. What we're saying here that there is value not just from disease. The value in relationships coming timothy are connecting Percy is one of the key aspects of being a human the. And I think people beginning to realize that, perhaps his job in bars thing where we're having to be separated, reach other are. For people like me that my wife died two years ago I'm single. Are families that are having to stay together just in their home or realize there's something really bad. We'll hear going up for soccer, practice, practicing and Dane spices and so forth. So this could even be hard abyss. Motivation have far. Improving connectivity, and the most important valuable connection is that between a husband and wife I believe? That within five years, if groups will come together and actually we do now have a group of people began to work. Across the country with this message as we get this message out literally in five years like I said while ago, girls will say well, of course. She don't have sex before he married his. It's harmful in every way and Gaza. Thing I'm truly. That for a large part of the population of American that will get that message. Twenty percent of people might hate. Thank message I think twenty feet of love are saying this I think the big sixty percent of dinner saying we don't. I think we can get guidance Jaguars. Yeah, yeah I agree. Because I started to see the the tide changes well because kids and parents saying enough is enough. We know that sitting down and watching television seeing sex everywhere, and that kind of makes them feel ill. At least it makes them feel ill for their kids, and the kids are wising up and I just wanted to say on behalf of teenagers. Teenagers will abstain from sex, but you have to give them a good reason to. You know parents and and. Teachers assume kids are going to be sexually active. That's not true. Because studies show that only half are less than half budget, so we need to teach parents. Okay, it's not that hard at least teaching girls. You know who the gatekeeper said. Look, it's not that hard so I feel very encouraged. I feel more encouraged about where we're going than I did even ten years ago. Yeah I. DO WE? Yeah, we have? We have advertising on television primetime sponsored by the State on why teenagers should be abstinent, and they use that word world. That never would have happened ten years ago. Never would have happened so i. think that your message where parents and teachers and physicians need to come together we can really tip the scales and drive down. Infections drive down depression, drive down anxiety, drive down this whole culture of hooking up which is working in any way, shape or form for for young people I really really believe that we can change the type of anybody out. There is interested in finding out more of the work that the Medical Institute for Sexual Health is doing. They're interested in looking at studies or there look just interested in finding out the medical facts. How can they? Where should they go? Www Dot mad institute, just mad, not medical, but www dot met institutes dot org in. We would love to contact us. We love our website. And be involved with us. In any way they. Tell this is fabulous as I will end the show saying the same thing. The beginning. You're really one of the smartest. Guys ever known in the hardest working, so thank you so much for commerce on your so far MAG but thank you. Thank you for. I just love getting this message out. To a million so well tonight. Thank you. Now, under my points, ponder one talk to your kids about sex. Many parents ask. When is it time to have the talk? Well, here's my rule of thumb when your kids begin to hear about sex in school or from older siblings. It's time some kids here at age eight others at age eleven. The best way to find out what your child is hearing is to ask. I. Know The kids are or will talk about things that MOMS and dads do in private like kissing. Have you heard anyone talk about these things than watch your child's expression? You'll be able to tell by his response whether he has or hasn't if he hasn't let it go for a while, don't have the sex talk then, but if he has you need to tell them that you want to set aside some time to have a very special talk with you. Second review the SEX ED program in your child's school. Most parents don't do this because they don't think about it. There's a variation from state to state, but you need to know exactly what your child will be taught in a sex ED program some schools far too prematurely talked a young kids kindergarteners about sex, and this is far too much for them. If you find something in the program, you disagree with talk to other parents and put pressure on the school to pull the information. Remember is Dr, mcelhinney said. Shows that giving young kids? Explicit information about sex changes their behavior. Sir Don't be timid. When it comes to objecting to sexualization of our kids, many parents just stay quiet. They don't WanNa. Look like they're out of touch with cultural norms. Do this. This is absolutely not true, and even if it were who cares your job and minus to help your child, he as healthy as possible. Emotionally and physically, and this involves helping them stay sexually healthy. You don't teach your kids about the sexualization going on around them, and about what healthy sex is who will? Parents. Going to answer questions today because I'm going to do something new every other week I'm going to. Post a podcast with just me answering questions and talking about a specific topic, my first podcast like this. I'm going to talk about your parenting pre load. Your parenting preloaded unique to listen to it. Because I'll bet it's something you've never heard of. I want to thank my guest. Dr Joe mcelhinney for joining me on the show today to find out more about Dr. mcelhinney go to med. Institute Dot Org. That's MED institute DOT Org. Let's recap points to ponder one talk to your kids about sex. Even though it's very embarrassing to review the sex ED program in your child's school three. Don't be timid. And parents don't forget, go to meeker parenting, DOT, com, and sign up for my free Webinar on discipline, the discipline playbook how to be an effective and calm disciplinarian so until next time parents always remember. Great kids are raised, not borne. Hey, this is bobby producer of magny cours parenting great kits podcast. Thanks for listening, and because your dedication to raising great kids doctor Max Parenting Revolution has grown to over three million downloads head on over to facebook and twitter and follow at Meg Meeker MD and check out what's new MAG maker, DOT COM and while you're there, sign up for the newsletter to stay updated and get information about giveaways. Don't forget to share the podcast with other parents subscribed so you won't miss anything and leave us a review, so we know how we're doing.

Dr Joe mcelhinney Medical Institute for Sexual H HIV US cancer CDC HP WanNa Dr Meg meeker Lisa Valentine Clark Lisa Texas writer partner President George W Bush Google Time magazine Byu MEEKER Hawaii CDC
The Biology of Aging: Introducing Bio Eats World (ep 1)

a16z

28:01 min | 7 months ago

The Biology of Aging: Introducing Bio Eats World (ep 1)

"Hi Everyone. Welcome today's six Z podcast I'm zonal editor-in-chief Andreessen Horowitz and what follows is the very first episode in our new show bio eats world a podcast all about how biology is technology. The show covers healthcare, which we've covered a lot on this show, and which, of course, it's top of mind right now given the Cova crisis but this show covers how will diagnose and manage all kinds of diseases, create new medicines and therapeutics and access and deliver healthcare. But also goes beyond healthcare because biology is an everything, it's in the products we use daily our food or manufacturing processes much more bio in other words is eating the world and says we. Believe. That biology is where information technology was fifty years ago on the precipice of changing everything. That's why the name of the show is bio eats world. It is part of our expanding basics and Z podcast network, which you can read more about it a six thousand seat dot com slash pot network, and it's led by Hannah anarchy whose voice you have heard on this podcast for over three years now and Lauren Richardson who you've heard on Journal Club, which will also be moving to this new show feet. So please be sure to subscribe to bio. It's world wherever you like to get your podcast and please feel free to rate it as well. Hi I'm Lauren and I'm Hannah and this is our first episode in the new podcast bio eats world where we talk all about how biology is breaking out of the lab and clinic and into our daily lives and really on the verge of revolutionizing our entire world in ways, we're only just beginning to imagine. So Hannah the title of this first episode is the biology of aging what aspects of aging are we going to be discussing? Today well, really we've been trying to dream up ways of slowing down aging for as long as we've been aging rate, but the field of studying aging as a science is pretty new. So in this episode, we look at the entire kind of biology of aging what we've learned, what's reality, and what is translating into actually increasing our health span and potentially one day possibly slow down aging what's health span, and how's that different from lifespan your. First thought when you think about studying aging might be how we might slow it down. But really the way a lot of people in the field think about it is increasing our health span, which is the amount of time that we live healthy. What's really interesting about this episode is it's about not just increasing health span and age span. But what we're learning about disease particularly chronic age related diseases that might help us be healthier today joining. Me For. This conversation is Laura Deming founder and partner of the Longevity Fund Kristen Fourteen e founder of bio age clinical stage company focused on finding drugs that extend health span using machine learning and Vj Ponte a sixteen z general partner on the Bio. Fund were there any insights from this episode that changed the way you think about aging yourself? Yeah. Well, I definitely enjoyed hearing about the drug already widely available that really might increase our lives. And I also loved hearing about what the difference between Benadryl and UNISOM is. So we start with a little bit of a history of the field talk about where it's come and where we are today. So where actually are we in the biology of aging today? There's been a big surge of talk even over the past few years about what the science of longevity is. It's developed but where are we actually today mortality is like this thing that philosophers pined for Millennia but yeah, the biology of aging new. New, insofar, as its new anything actually works I, guess, right. One of the earliest discoveries in research that goes back decades is that if you could severely restrict food intake an animal's calorie restriction, they would live substantially longer, but it's only been fairly recently the bill actually intervene and actually impact how long a mammal can live and one of the interventions. That was first shown to work in mammals, para BIOS exposing old mice to young blood, and that really was first discovered fifty years ago. The major acceleration came during the nineteen nineties, the two thousands, and it's mostly attributable to the first finding. Cynthia Kenyon Gary Rivkin Tom Hughes that you could delete a single gene and against double its lifespan everyone thought. Aging. So complicated, you know, how are we going to have a dramatic impact on aging when it's really all these different systems and processes that are going wrong simultaneously, and then you know, wow, wait a minute this one tweak, and then suddenly this massive difference in lifespan. So a lot of invertebrate geneticists went into the fields and and mapped out all. These on Jebediah genes that impact worms, flies and east, which is awesome. But now which of those translate to humans, those are the ones that matter for for translation going back to kind of the history, the field be kind of how these really sort of highly advanced intellectuals going to kind of losing a lot of their momentum forward. Practically Nobel laureates Elie. Claiming that gut bacteria can of control aging and maybe that's coming back around now in some areas of current biology at back then it's not as well supported. It's only recently they started to how the traction in the field specific discoveries that period of time was just. So critical to the fields birth Cynthia Kenyon when she was making these I was told you'll fall face of the earth. Literally if you pursue this research to do the study, and if you look at her first paper, she was the lead author because no Grad soon was willing in her lab to do the work. That was such a controversial first step to you know young principal investigator. That was how unexpected it was really thought that it would be the end of your career kind of go into this field niche. Kind of you know started a new they didn't even want to touch it. Yeah. Exactly worse than unexpected like bad science. So can we talk about what that traction actually is looking right now what does the most promising traction I think one thing that we feel really strongly is this critical decade patients are for the first time receiving drugs that were developed in the context of aging. And Fascinating to watch these first clinical trials occur companies are actually developing drugs, and when that first patient gets actual clinical benefit, we're going to see people actually affected by these kind of ideas that have percolated in the field for decades. One of the kind of examples of this. Sort of prominent in the field is a trial testing a drug called met foreman in the elderly, and so it's actually looking at all cause mortality, not just a specific disease as an end points four minutes off this drug, which retrospectively has been shown to be somewhat correlated to a decrease mortality in for example, diabetic patients, it was discovered by analyzing health records right so so That's a great way to find repurpose drugs living longer. Yeah. So it's of these drugs. Millions of people have been taken for decades. You can actually go back in time and ask the question you know are people who are on metformin living longer and they are and that's kind of amazing. So that's where the whole hypothesis for this compound came from. It's now being tested in the clinic, which is so exciting I gotta go get me up. Chris. Other, key approaches that we haven't touched on yet that we should be describing as this new field kind of evolves there's also restore bio which you know was testing a molecule that's similar to rep, and that was for tract infections in the elderly dot trump did not work when try Kennedy's three. But if that had replicated I would have been one of the more big examples. There are some sort of drugs and clinical sort of landscape today that are four metabolic disease things like national ideas or VCD which when you over express these proteins in mice, make the myself longer. So there's this key. Link between like things that we already are using to treatment bulk disease in the clinic and kind of what might actually impact lifespan. So that's the connection with Metformin. Let Foreman impacts, cancer deaths to. So again, it's like a broader ejaculated mechanism. Yeah. Okay. That's interesting. In one way that we try to classify these companies three generations one is focusing on traditional pathways. So things that might affect for example, insulin signaling in the body, and those are kind of known targets that people are doing with existing modalities. Second would be trying to screen for novel targets using platforms that are high throughput and kind of. Model organisms or kind of novel kind of in Vitro in Vivo screens the third would actually target damage directly. We're not saying evolve pathway that were knocking up or down you'd rather saying instead of damaged accumulated and that's we're kind of going off during a more engineered fashion. So you know, for example, targeting recalled snacks and sells. So soles that get older credit with age the idea of Zombie cells. They're scouring to built up in the license zome of each cell called like the few sin, and that is aging related type of damage which when targeted. Relevant these disorders that people kind of starting to work on three different small examples of clinical work being done. But for age related diseases and it's like three different frameworks. Well, the question right for the first generation of companies is, what's the low hanging fruit because something is very well conserved through invertebrates up to mammals probably it's in humans to right. So Am tour is very interesting target that said the genes that are the most important for invertebrates are probably not the most important ones for humans, right so I think a lot of those new pathways have yet to be discovered and we'll have much higher impact on longevity phenotype says well, and damage I. Guess also is sort of going directly to the major causes. Of Disease. So I think those all make sense as approaches I I mean it's so unexplored now therapeutically right even those drugs that have a very mild impact on longevity are thing could be incredibly meaningful really important consideration as well. Would you call like ten percent increase in? Yeah like a few percent increase in lifespan rapamycin is probably the most well validated drug for extending mouse lifespan right but you know the amount of compounds that were tested to that level of scientific rigor is about thirty pounds thirty drugs into my did thirty random experiments, right? And, one of them boosted lifespan by fourteen percent. So I think there's GonNa be tons of things that have much higher effect. The Napa my get back to thinking about just the biology of it. It's. Is there any other trend for the? Why now is it just finally but people like Cynthia Kenyon being brave enough serve help create the field are there any other sort of confluence of things coming in here mapping out every single molecule in a blood sample in human blood sample proteins, metabolites, whatever we can get our hands on and seen which of those predict living a long healthy lifespan and going after those that are causal. Even five years ago really technologies that we're using didn't exist kristen you really kind of changed my thinking here when we first you're talking about biomarkers for. Longevity and how important those were and to be able to test our hypothesis in human, and that's where it all counts and so kind of when you pointed out that this was the key problem i. think that was such a big watershed for the field of if we just make a fast easy cheap reliable biomarker for aging, that's really going to change the whole field in a way that is more than just getting one to work at the biomarker. Thing is actually very interesting because let's make an analogy cholesterol as a biomarker for heart disease and because they're such a causal. Between cholesterol and heart disease. You don't have to run a trial waiting for people to die of heart disease and that's huge and especially also you can measure it. You can see small changes go up and down you have something that's not binary dead or alive. You have something that has a lot of nuance to it and so having bar markers is both really useful but I think somewhat reflects just. Of the space to is there another approach where we're all aging differently and we need to understand things on an individual level in terms of what our aging type is that different systems age in different ways the same as with any biomarker with cancer you can personalize the hell of it and say, you've got these weird mutations and therefore you're part of this special. sub-type right and I kind of think that personalized medicine is where you go after you sort of exhausted the things that are going to work for a population I mean as we discussed earlier, there are already mechanisms of aging conserved across species you know from east to us. So certainly, there are also really potent mechanisms of aging that are conserved across humans were focused. On targeting those first looking at the commonalities I. But certainly, you know for certain individuals, there will be particularities to how the age that you could. Also you know treat differently in different people are changing paradigms is not just a scientific paradigm or even clinical paradigm but as a healthcare delivery carradine as well. Now, there's this opportunity to say given that knowledge what can. We do against existing therapeutic areas existing disease. We don't have to talk about founder of you. We're talking about learning new biology, learn new targets that can directly go into clinical trial for a new disease, and I suspect that could be a very interesting sort of initial area initial application. So it's like what can learn about aging actually do to make you healthier right now. Actually end or can can actually can help you cure a disease that you have How what is that connection? Can we just spell that out? and. There's a couple of variants of this one variant would be an aging related disease. Disease these diseases where you age rapidly that's kind of obvious one. But maybe what's less obvious is other diseases by could we be talking cancer be talking? What, what are the? All of those right I mean age is the single biggest risk factor for those diseases like twenty year olds do not get Alzheimer's and we cannot cure Alzheimer's Today and it's therapeutically it's been a disaster. Everything has failed in the clinic thus far, and part of that is probably because we're studying it in the wrong way I mean when we're testing. Drugs in animal models mice don't get Alzheimer's and young animals do not get Alzheimer's at all Alzheimer's Disease Cancer Heart Disease and stroke. We have to study these diseases in the context of aging and that I think is a new perspective. If you think about just the biology of Alzheimer's, it's not even clear what's going on like even which protein is a Beta is Tau is Alzheimer and a aggregation problem is that problem is the apathy like the even the fueled can't even agree on the biology even targeting a fiber targeting top with these it's not a traditional pocket that you get a small molecule to go into. If you have something, we're the current drug design methods don't work it seems like applying. The. Current design methods is not the right thing to do. This feels like the type of radical shift that could have an impact and still keep us in small molecule and when we think about this, then actually the translation part is pre straightforward because I think the beauty of what we're talking about here is the current healthcare system won't have to change. That basically, we have indications and as Christian mentioned like like not just any indications but the biggest killers. Deal need a huge amount need. Numbers were there's at least today no drug at all. I'm curious like you could have a patient with the early signs of Alzheimer's like with MCI mild cognitive inhibition. Could you reverse phenotype? Could you just delay type? It think that is the whole promise and the practical approach approaches. Well, right that really if you have a drug enhanced that treats aging fundamentally, it should treat several different diseases and and yes, we can work within the existing medical system with the one caveat I don't think an aging drug is going to be a great drug for metastatic cancer you know or. Probably too far. Yeah, and sort of how far is too far, and really these targets will probably have their most potential when they're using the preventative fashion that of course, that's not something that the existing system can deal with but I do think that early disease like MCI. You can at least halt progression which would be massive you know and potentially reverse it with some of these mechanisms the reversal. Gets everyone excited definitely. But even if you could just slow down, YEP, in Alzheimer's slowing down, could still be very, very valuable. Yeah. What's w disease modifying and there you could ever land pointed against that. So it's interesting. You're saying almost that like the biggest hurdle is getting the biology of aging in its approach of its own, and then once you can get the right targets. Then you can sort of slot into the existing system and keep moving I think there's so much about the science. The biology of aging that has been validated that now has opened the door to now treating these as targets. Actually you know the findings you could just identify that target toss it over the fence to your favorite Pharma, and it would slot into the same type of programs that they would be running right now it doesn't require a radicals or envisioning a farmer to make this happen moreover, I think if you look at the history of former, it goes through waves of new technologies and maybe it's interesting question win or if longevity becomes at hot new trend and I suspect that north rather to happen, you have to have one or two clinical trials that showed this works, and then it probably just catches fire. One amplified wanting kristen said that I think went by relatively quickly that is very, very important. Is that these compounds if they are truly going after the biology of aging will be useful in multiple indication at first sounds magical but they actually precedence for this for existing compounds. So that alone is interesting that already presence can you compare an example there I mean. So my favorite stupid one is actually Benadryl and UNISOM. So actually it's exact same drugs you go to the pharmacy often they just happened to be on opposite sides of the aisle and actually when sold as a sleeping pill, it costs a lot more than as A. It's the exact same compound executive dose, and if you've ever take Benadryl for allergies, you get very sleepy. So that's a simple example better examples in in diseases. For example is of the ones. That's a great example what five or six vacation. That's right. More. And like the world's most valuable drug as well. Yeah, but this is a little different. I think in that one you just happened. There existed. So the humor cases, similar diseases. In the Benadryl case, it happens to make you sleepy. It's almost like taking advantage of the side effect. This is something fundamentally different. This is something we're actually the sort of way to save all these diseases is to slow down aging and that, and that's why it has such broad impact. So is it oversimplifying say aging as kind of root. Cause of all these diseases or is that amplifier of the disease or causal driver? You know driver? Yeah. Well, look at Immune Jane Right I mean your immune system declines horribly with age. You don't respond as well to vaccines. You're you're more likely to get incredibly sick when you do get the flu or a cold and that affects everything in your whole body makes everything worse. Point of view, it is a causal driver, right? Just a mathematical statistical definition. and. Then that makes it a very natural philosophical think about it. One of the hypotheses about why we have pathways that control aging is that we've evolved those for a reason that there's a benefits to living longer enough to have kids different environment and it really wouldn't do well to live longer and be great. You want to have ways impact all your health that pushes back all diseases otherwise kind of us get your. Debt of a different thing earlier. So that's gonNA perhaps why it'd be plausible to believe that there'd be sort of all disease sort of efficacy for these kind of anti aging therapeutics actually in what is the evolutionary selection for for aging or lack of aging because you could see that I'm once you've given birth to children or maybe gotten them to grandchildren there's then you have no purpose right I mean you're you're i. Like from revolutionary point of view and you've, let's say diminish purpose from a purely sort of cold evolution point of view. But you're still taking resources if you have a certain fixed mortality rate year-over-year. Actually here than it's are developed society your probability of being dead at any one point in time in your life is actually pretty high, even independent of aging over time and so if there anything that benefit you when you're young might be harmful to older or just kind things that it came late randomly past the point at which you're likely to be died from other non aging causes might accumulate into now that we have actually the ability to live long enough to know potentially benefited from the number of years there's. been no selective pressure potentially to kind of live longer in that sort of period of life. One of the things that I'm always curious about is what don't we know now that we need to know because the problem with biology is is that it's just so complicated longevity ageing biology seems to be amongst the most complicated. That's the thing that I'm always wondering about is what is going to be the big surprise of the big curve ball and what can we learn from it? That's a really good point Reich I. Think. We're all waiting for the first clinical trial to be successful, and that's going to be so important for the field right for. Pharma. Companies that traditionally don't work in this area to really get confidence and excitement around it. But yeah it. There's so much risk associated with bringing these mechanisms forward and figuring out the indication path. I mean, you can even have a good mechanism, but have you know defining these indications for the first time of course, we're going to get it wrong. The first few times there's there's so much. To figure out because it's really such a new field. No. Okay. So we've talked about the explosion of the field of the study of the Science Balaji of aging, and then we've talked a little bit about what that brings us actually right now in terms of understanding biology and disease. But where do we meet resistance again where we try to get this into the the health that exists today as a kind of preventative medicine what does that look like in terms of the end goal being a healthier life a longer life? Health. Span I think that's a great question because you you got the therapy in hand. Do you think it's actually slowing down aging and yes, you can work with the existing healthcare system and layer on indications one at a time. But really you're not getting to the whole aging population as quickly as you can right and what could that path look like in the future? So biomarkers is one route, right? Maybe people are still pre disease, but they're frail this sort of functional and molecular biomarkers that predict they're going to be sick like statins statins exactly like statins will you know sort does handlebar marker? With the hope prophylactically to avoid disease people often say that people don't WanNa pay for prevention, but we do pay for Stanton, there's this old joke that up plumbers have saved more lives than doctors, and that's the point about sanitation is just been this fundamental sort of floor for just for human health and then I think the next level up in my mind is gingrich. No disrespect delay or? Or Minimizing Reno's. As much as I do like them that's what comes to mind I mean basically no one should have type two diabetes. I mean, that's another version of sanitation. It's now the question is, could you? Like. The with longevity gene hand where you have these biomarkers a no one should have these aging related diseases or maybe nobody should have disease before the age of blank and that blank goes from like sixty to seventy to eighty to ninety onward. That's right preps while we really just need is something to have this rock-solid biomarker that the clinicians are convinced is an issue and then you have buicks that can help you manage to that biomarker. At least there's a paradigm for that. Well, we'll exactly but any therapy that really delayed aging that really delay the onset of disease would save a tremendous amount. Of money and you know and you can put a number on that and you can justify a certain cost It shouldn't be that hard I think that's where it comes back to this is the decade because it's the first time that we're going to see trials actually can all cause mortality with therapies that are already on market today and we're going to see the impact of those readouts. It's never been something that's ever been done before that's that's truly different for any other time in history, and that's the proof we need to get the system to really start recognizing it that way one would hopefully. Well. So that's a great point. I'm wondering like what would be the analogy like are we at like I live tour kind of thing we're looking because then then there's been what four generations of statins since then before then actually that model didn't even exist. Responding, to like the first modern Mark Trough Shift in paradigm and that kind of occurring potentially as a result of views. But for the field to right I, mean the point several of these hypotheses are being tested clinically we're GONNA have to wait while we really get the human proof of concept for the idea, and then once data comes in I think that's going to be huge osteoporosis is a really. Good example to write, it didn't used to be considered a disease, but there's sort of markers of your bones get weaker as age, and that predisposes you to really severe outcomes events and now it's recognized as one, and now there are drugs and there's a way forward and payers were convinced right. So there are case studies I think that we can follow or it's kind of flipped the understanding it slipped. Exactly. The mentality towards. Yeah. So where where are we in the hype cycle? Would you say yeah, biotech generally like it's shifted in the last few years to be a lot more accessible with, I would say like low upfront capital, right. So first of all, the data sets that my company relies on, we were for the first couple years a data company like people with laptops vastly cheaper than biology even if we were doing biology now they're incubator spaces. Now, there are Sierras like worship that can do all your chemistry outsourced. So I think the barrier to entry for biotech has gotten a lot lower and really able a lot of these new and exciting. Ways to work on targets and therapies in two thousand eleven two, thousand thirteen, there were so few companies that like just having enough money to finance companies in this space was limiting thing. Now I think there is actually enough money just even from the past couple of years to fund the good ideas and the people, and so we're not turmeric comes to us and says, Hey, I want to make. This is a common thing. Make a lot of money and then put it back into biotech. It's like no no. If you're actually get entrepreneur please started company that's what we need more of start a company. If you want impact space, we lock people is. Just fascinated by you were one of the first to really go out there and do a couple of things. One was we need biomarkers for aging put but also just built an aging company at all I mean there are very few companies when you started what have been the sort of easier and harder things even count it as a result of that focus. I mean, it's new, right? So everyone I think understands that it's riskier. I guess than if you have another company for Nash Other Company for cancer, everybody knows exactly how that's GonNa go from discovery through validation through your clinical trial design through your reimbursements. There's a lot of uncertainties because the space is so new but related to that. There's also so much opportunity I would say that there's more awareness now that these drugs are in trials, there's more I would say also appetite for novel mechanisms now that. The usual approaches are not working. So I think it's it's landscape is changed a lot not just at the start up level, but in terms of like big biotech as well. Well, there's one just common question for any founder serve in the Bio Pharma side when you can do many things, would you do I? What? How do you pick a therapeutic area? That's probably one of the hardest questions an entrepreneur has to deal. With? Yes there is no clear well trodden path but that means that we also have the opportunity to to really optimize and build something new. We're trying to design our first clinical trials. So should it be for an age related disease? Should it be for something closer to edging again, uncertainty plus opportunity right and trading those two things off and making a bad right we're really focused right now on just getting more people to be founders. Early Twenty tens of capital. There's just no money in the space right now the big ball neck is founders and we've seen many amazing companies built by both crowd soon, strictly out of their kind of peachy. But also people coming from software engineering, managerial positions, and a lot of these people out of the position they say I can't start w company because I. Don't fit the profile of a brilliant scientist founder or traditional investment bankers but they make an incredible founders and there's just a huge population of folks out there who I think should be company. So just to double down on the idea that if you want a really impact longevity, start a company that is exactly what we need right now what are the other? Types of founders that you tend to see coming into the field you know in this new field, the founders in this space typically combine a couple things. They either are biologists who have embraced machine learning or other areas or even people that are coming from the tech side that are learning the biology. It's a really unusual time where you can actually learn both. Maybe Learn Brooklyn beginning but actually it's almost like it's never too late because you can pick up both sides but if you can capture both sides, I think you'll have a huge advantage, a nontraditional founder for us would be someone that is coming maybe from pure farm aside, and we haven't seen that yet but I suspect they're coming in Christians nodding your head. And I suspect other coming either to be founders or as. Does and that they may be comes employees for these companies that culture and the talent landscape changing to involving intelligent. Interesting. That's it for the biology of aging and thanks so much for joining us on bio swirled. If you'd like to hear more about all the ways biology is technology, please subscribe to the a sixteen bio newsletter at a sixteen Z dot com slash new letter, and of course, subscribe to Bio East world anywhere you listen to podcasts.

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Prof. Nathan Gianneschi is a Professor of Materials Science & Biomedical Engineering at Northwestern University.

Scientific Sense

49:53 min | 6 months ago

Prof. Nathan Gianneschi is a Professor of Materials Science & Biomedical Engineering at Northwestern University.

"Welcome to the site of accents podcast. Where we explore emerging ideas from signs, policy economics, and technology. My name is Gill eappen. We talk with woods, leading academics and experts about the recent research or generally of topical interest. Scientific senses at unstructured conversation with no agenda or preparation. Be Color a wide variety of domains red new discoveries are made. and New Technologies are developed on a daily basis. The most interested in how new ideas affect society. And help educate the world how to pursue rewarding and enjoyable life rooted in signs logic at inflammation. V seek knowledge without boundaries or constraints and provide unaided content of conversations bit researchers and leaders who low what they do. A companion blog to this podcast can be found at scientific sense. Dot Com. And displayed guest is available on over a dozen platforms and directly at scientific sense. Dot Net. If you have suggestions for topics, guests at other ideas. Please send up to info at scientific sense dot. com. and. I can be reached at Gil at eappen Dot Info. Yesterday's Nathan Gene Ascii who is a professor of chemistry material science engineering biomedical. Engineering and pharmacology at Northwestern University his Associate Director of the International Institute for Nanotechnology at Western his Switzer spans by medical translation, polymorphic materials, making biological materials and advancing basic seclusive in nanotechnology Samedan. Very much for having me. Sure. Yeah. So I want to go through your papers. In more detail, but before you start. I would like to lay out a conceptual framework Toyota Research details. just very quickly needs, and I was at Pfizer in the ninety s not as a loser but as business guy and I will sit I used to think that former RDA in elegant. create decisions. The actually have no idea what they'll do once it's inside the body. So we go through many experiments, animals, and then humans in various faces to see what actually happens. At a show that too many people are not killed. There's a phase one study looking talk society closed and then. Tightly controlled doses there, and then we go back and look at efficacy. So. Then at least two thousand tuition rates in what what is called face to face to be in combination was about eighty five percent. which meant that only one in one hundred combines. Data Pharmaceutical Company ties actually succeed that process of human testing. Into market, and if you attritional just that the total expenses, it's about one point four billion per successful compound in the market. and I think in Twenty Years Since and attrition rates remained pretty much. The same costs have gone up about thirty percent more inflation, other the reasons, and so this process still appears to be somewhat inelegant. At least from my perspective so you have a little bit of a different approach to it. Right so did talk a bit about the platform that you haven't looked none. Yeah I think in academia as well. You have to remember we don't have the burden of always taking drugs to market and roundly. Take a taken and many others and approach to developing exactly that thinking about new platform technologies that could be eventually translatable. Certainly, that's that is a major goal. Main concern is in where can we innovate and in our case? where can we innovate on the material side? Material Science. Polymer Chemistry side. Where can we make impact? Where can we have an impact where maybe in the small molecule drug development world? Maybe even in other kinds of scale micro-scale formulations. A failed because if maybe trying to shoehorn in an old drug into a new formulation or as you've sort of alluded to screening lodge large numbers of drugs to some drugs that are already approved, for example, new uses. How can we stop breaking out of that and I think there are many many parallel efforts from all the way from the biomarker discovery? Weld. Through to the types of things we're interested in. Essentially in in the Biomedical Space What we've done a over the years is look at where I think a common thread as being looking at where there are biomarkers that have been identified as certainly by many other groups. For example ends. Up regulated a extra Selah Enzymes for example that are associated with inflammation, which is the basis of one about technologies. Rather than look at it as a target for drugging directly, and so this would be the traditional or even make quite innovative methods looking at how do we go off the drugging those enzymes selectively small molecules or even lodge kills antibodies, proteins, peptides. Than directly attacking those enzymes, how do we preserve them? They're they're part of the inflammation response and instead used them to target materials. and. In that way, you're not inhibiting the enzyme. You don't get any off target effects of that in addition process, which can be problematic actually in that case, because the enzymes present elsewhere in the body but rather use them to target a material, a diagnostic and a therapeutic and I think that that's been a common thread between both are cancer work and I work in in my cardio in function as well. It's kind of leveraged by Marcus and perhaps a different way. and. So so one innovation cares plant sport mechanism, right? Nathan. If I, understand correctly that the transplant can cancel with being really excited about an opportunity opportunities around hitchhiking on metabolic pathways again, associated with cancer, and in this case, it is a transparent process and this is from the point of injection. Of the material in this case of a of a molecule. Through to when it is taken into cells and tissues, and so again, these these are transport pathways that that a necessary for certain team as to feed themselves and so that feeding themselves quite vigorously with exogenous or in other words. Fats and proteins that come from the outside world and the outside wellbeing the other parts about body. So I bought another other parts of the organs that they're in. And so again, the question wasn't for us wasn't well, you know that'd be a lot of efforts she to drug those pathways. And in some cases to utilize them in that way to inhibit them, for example. So inhibit sort of the process by which cells and tissues cancer cells and tissues a trying to. Build the components to build more cells right to propagate the cancer. To maintain this high energy metabolism, high metabolism process instead of directly drug them use those channels has transporters completely orthogonal, completely unrelated anti-cancer drugs to try to get around maybe problems of drug resistance. To try to take. Maybe. Therapeutics that otherwise are somewhat limited in how much you can dose and try to change the game in that way so that that's been a big exciting you push for us. Okay so so so one focus there is. Sort of improving the therapeutic in. Right. So the difference between the toxic dose and effective does. And in conventional in Devi, just look at it, you know sort of the average population where those things are if you were to go into push slice medicine, lot of dickey's of freedom there but Certain companies. Kevin been really willing to do that yet but but I think your efforts In in the transport mechanism that you described and some of the new technologies in Manel materials that you will talk about is essentially getting to that right. So can we get a higher? Toxic does or lowered effective dose are essentially broad and that therapeutic index. That's the goal that's exactly right and and I think I think that that you know if you if you think of drugs that are very safe, we think of that as having this very large window between where it's effective. And that's defined some some some minimally effective. Response. For example through to where. You have tolerated though so a patient tolerance for it or An animal studies, the animals tolerance for for the drug, and so the bigger that window that the safer. But I think also that they recognized, of course that the the bigger that window, the more opportunity potential you have forgetting into sort of a new manifold of activity of the same drug. So if you dose limited if you sort of side effect limited in terms of the dose. That caps your ability to go after. The disease. In some cases right And in in certain traditional Chemo Therapeutics that is the the wisdom so. By by targeting the drug targeting a material that acts as a drug poke the that's that's where the game is to try to overcome those barriers and there are lots of very interesting drugs that have lots of off target effects. And so the whole field of even small molecule drugs. NANU scale carriers. There's lots and lots of labs really hammering away at this question of how do we broaden A therapeutic index, how do we open that window? Great Okay, and so if you take an existing agent. And if you piggyback on some process that you can identify, you can get to the target site. In a much more efficient fashion. In which case, you can turn the Turkic index right so that that's that's thinking packing on some process. But then also that nanomaterials that could utilize in that. Yeah. Yes. In the in the one instance that be the yeah. Like you said, the piggybacking on a process of say molecule consumption that's inherent to the disease and what you were saying earlier, that could be. Personalized in some cases or at least in. Batches of patients like certain types of GM, as at certain times, maybe metastatic disease, for example. So it might not be person by person, but it might be a market that's narrow down to a specific Close disease, for example. In the case of materials. There's lots of lots of work in the area and and the thought has been along those lines of what features that there are. Physical Features some of the. The wisdom around Leeriness of the tissue, the tendency of disease tissue to be maybe more indiscriminate about taking out Neta materials, and so there's been a lot of efforts in most that sort of space. Our purchase. Being. Really I think the the. What what's interesting is this idea of being out of retain materials for long periods of time as depots of drugs. And maybe diagnostics as well in the diseased tissue that being able to inject a material that's actually very relatively small and so. The the game is being very often played in the following way you make a nanomaterial that is long circulating or political or some kind of material that's long-circulating. So you get lots and lots of shots on goal right you're circulating long periods of time, and so every time you accumulate in the tumor. Our. Approach is really leant towards more towards an increasingly recently to materials that can be injected. Would circulate very rapidly unclear and they might say through the kidneys, for example, in optimal case. And instead what they're doing so that in other words they're below the renal clearance restaurant. So your body isn't seeing them as a nanoparticle it's not. What what happens often the NANNA scale particles materials seen as foreign entities. Almost yes. Same sizes viruses. By your system taken to deliver and destroyed, and so you got a lot of Olympic monolithic accumulation instead of targeting other disease other size. And so. What we've tried to do to say. Okay. Go Way below a low a small object ammonia, molecular weight species that assembles inside the disease tissue into lodge structure so that it can't come back else. Did, for example, in the case of a heart attack. Whether wound the injury I should say in the in the heart and the left ventricle. Is Considerable, it is leaky tissue it sort of open open windows. It's kind of like inflamed and open opened up the doors and windows to the vascular said, there's a way to get materials in. The vascular the trick is being to keep them in that and in our case by having them sort of expand their kind of expensive materials expand and get trapped inside they can't be pumped back out of the hot without success showing that fist step at least that were able to keep an accumulate materials. The next challenge for us is okay you can do that. Now can you deliver drugs and get a meaningful therapeutic effect? Can you get meaningful efficacy in terms of hot function and that's the next step. So that the annual bottles. So just talk a little bit about my infarction related work that you have done. So in animal models in in mouse models I guess Then you have an injury, there's lot of inflammation and you have shown that you can actually get materials to that specific site. And at can have a mechanism for those materials to stay there for awhile is that is that what has been accomplished? So they. So you're the in the the process by which you. Essentially have a blockage that leads to hot that the damage, right? Is a process that leads to obviously cell death. So this is muscle cell death. And then rep refute. So you blocking the blood and the blood coming back. Maybe, after surgery and so the patients recovering and their hot continues to go through this inflammation process, and so this is a process of rebuilding you think of scar formation on your arm if you've got to cut right. Same kind of process, rebuild the the the matrix that holds the cells together you propagate new skin cells, new muscle cells, and you try to heal the tissue. This is exactly what's happening in the hot. Except the The heart muscle is very poor. And see end up replacing the muscle with a lodge Scott. and. If that the the field is being in terms of driving towards tissue regeneration sort of biomaterials purchase a bioengineering purchase has been trying to grapple with. This is stem cell, other stem cells you could inject. anti-inflammatories and our if it's of really just parallel that and said, well, let's build a artificial scaffold within that injury. Where you could then release anti-inflammatories. Other components that may aid in the. Production of Newhall Titian with we've worked on that for several years. Now, with a a group WHO's really an expert in that area at UC San Diego Karen Chris Man who's in bioengineering that. So I've worked on that from these sort of two different angles together to try to address that through exactly that process. Okay, and so from my understanding, Nathan? So many use nanomaterials says it nanotubes of something like that Can you encase those things get the agent. you can you? Can you to drug agent inside the materials, right? So so the idea would be then through that, you can deliver it to August site. and. Easter any way you can control that externally. Interesting we've. We've there's a lot of interesting approaches to that, and so we've we've looked at. In our own work, we've really faded processes that. Controlled by the chemistry. So what we do to encapsulate the drug is connected inside Virus semi-permanent linkage that's degradable in the inside the the Olga. But yeah, the, there's some efforts to us You could target something and then use an external. Externally applied stimulus. We've favored sort of inflammation associated stimuli that has specific to the tissues, but you could imagine planting material and then addressing it said it from the outside world and people have worked on photodynamic therapy in the case of cancer. Using. Maybe ultrasound heating magnetic fields you could use, for example, a magnetic, quite strong magnetic fields and so. We don't do that kind of work, but there is sort of a rich ongoing a set of set of materials and studies in that area. Okay. Okay. You have people here. Related to the metal organic nine years. And so so so what exactly is a metal organic nanotubes? What are the use of that different from the typical? To upset you think about. This work. Is really an interesting direction for so we got very interested in. A particular set of questions that have come up a lot across all kinds of fields of materials science in chemistry? Of of all kinds of materials and that is mechanisms by which they form from the initial molecular components. To give these really lodged largest strumming the Nano scale but hodge structures compared to the molecules. What is the process by which molecules organize in order to generate micro nano micro, and then ultimately macro scale materials that we see in the world around us, and so these are sort of so-called seed in growth processes. Y-, Other? Molecules of become materials at that interface there's a lot of difficulty in. That process that people care a lot about materials of this type. And we've looked at others very similarly related go metal organic frameworks. General class of porous materials that really fascinating that have kind of taken the world by stolen Thames of lots and lots of interest across multiple failed where you're looking at storage of gases hydrogen gas storage maybe you look at catalytic processes say taking up smoking up co two There are programs that people looking at putting these at room temperature and soaking up water to trap water at the atmosphere. Just incredibly interesting materials at this very high surface area materials at kind of close. And we got interested for Alpar. We've we've collaborated with multiple up particular work was with a group at the University of Tennessee David Jenkins whose pioneer in that area of looking at this one dimensional tubular structure, all of those kinds of materials and they're really fascinated and whether or not you could make a single tube that would be like a chewable version of a carbon nanotubes covid nanotubes kind of have set geometry's he's his efforts of being well, could we could we blow that away by or out of the water by looking at shooting these things? You'd have like a Straw type material that you'd have to sickness Straw instead of being stuck with. The kind of chemistry you get maybe specifically from the the carbon and so they we kind of got together after a seminary gave actually university and I said look I think we might be directly visualized these for me. And we got excited about the possibility that of course, if you can see it for him, if you can understand how it forms then that informs how you synthesize it how you make this. Just classic cross routes way of thinking about designing syntheses as if I understand the mechanism than I have a way of putting it, and that's exactly what we started doing that study, which was to essentially video these nanotubes forming and it is videography but using an electron microscope, and that's where sort of Al Lab is interface with others on the more to fundamental synthesis and then ultimately applications and materials science. Has Been in the characterization of the types of systems. By visualizing them in liquids as dynamically moving by electron microscopy. So. These are still in the nine scale. So do you see more interesting application? So fit in therapeutic area yet just just an application. That would be we've we haven't thought about that. So we haven't thought of them as as as being immediately applicable and therapeutics, but they we we have invaded considered them at other absorbent materials as well as again frameworks of this kind of close I being look for exactly that purpose in some cases, they can encapsulate proteins, for example. which is really awesome where coming out of some colleagues of mine at northwestern and others where you know you can imagine stabilizing therapeutic for example, in these lodge pause that these materials have as I mentioned. This sort of Nana's sure idea would be like what we call and in the lingo host guest type interaction where the tube is a host and holds a chemical guest inside that can then ultimately have like a time release or a programmed release. That that hasn't been investigated specifically for those structures, but it is it is a field of increasing interest for show. Excellent we'll take a quick break. Come back, we'll talk about your walk into cancer. Thank you. Thank you. This is a scientific sense podcast providing unscripted conversations with leading academics and researchers on Righty of topics. If you like to sponsor this podcast, please reach out to info at scientific sense dot com. Via Back So so you have the people here, Nathan and this is about sort of the piggyback process that we talked about. Before and this isn't cancer. So this taxol, right? Along with the Human Serum Albumin Skirt and finding to get to the get to the cancer. Yes. Yes. So so The this this effort came about as a result. Sort of looking at again that that idea that. Could. We could we take some of these known biomarkers which up regulated the cells kind of putting out signals in order to consume something. So this is known for example, in a variety of different. Kansas for. Hormones being involved or. Some other kind of energy consuming peppis that might be present on normal tissues but more prevalent on. China's because of that sort of desire to grow foster, etc.. And so in this case, there's a receptor associated with. Many types during the process of setting up regulated consumption. Of. Fats. That sits on the cell surface. There are other receptors throughout the tissues that. Regulate and consume proteins as well, and so what we looked at in this case was. How do we hitchhike on? Not Literally what what's it was sort of a Trojan Horse Strategy Right? How do we trick the cancer? into taking out a molecule that is actually a toxin four let's aside a toxin. It will kill kinds of cells. It particularly affects cancer cells in it's very commonly used as you said, taxol or by its other name Paclitaxel. The approach can be generalized -able. So again, we sort of a favored the development of these types of platforms and so it could be put it could be used as A. Trojan horse can carry Greek soldiers. It can carry a lot of other things too. So, the concept obviously maybe. There's a time and a place for it. Once you've seen it once you get tricked again. But the team is do right they. They are kind of stuck on a pot like right we need to eat and they can rewire and they can become. Resistant to send Drugs and some of these are indeed resistant to taxations. Of Drug. People have tried to get around that in a number of different ways, and so one of them is to increase the dose and there's a lot of toxicity associated with these drugs so that we were talking earlier about therapeutic index. He's class of drugs work really well, there's lots of other platinum. For example, another cancer drug they they have narrow therapeutic indices, the narrow windows. Broadening those as being a big area of research and so. We thought bubble. Take that to the proof of concept drug If we can prove it for that it, it's mainly portable to other kinds of drugs. And it works and so that the idea is, of course that. what do we do differently I guess. What we did was we took the existing. Drug. Paclitaxel. We connected to a new kind of fat. That's a synthetic fat that has two ends to it one you can connect to the drug. The other end looks exactly like the native fat an put in specifically looks like stomach acid, which is a eighteen carbon long chain that is known in natural. It. To as you said, human serum albumin but that's just one part of the story. It also binds the transporters on the cell surfaces that transport in fats, fatty acid transporters. And so you've sort of engaged in without directly drugging you've engaged in the entire pathway in that way and we think. We've. Really. Excited to try to figure this along I mean how lab is a basic science lab with with We've got lots more understanding since that paper came out of mechanism of uptake. SCOPE in terms of different drugs Moving away from Paclitaxel to biological molecules, for example, in a whole range of things. But we've also started a company to go and try to pursue that because it it really needs to be done at a large scale and in a translation away and and so that's hopefully that's going. But yeah, that was the basic science question. Could you even use that kind of new kind of lipid to trick the system and it turns out you can. So we're pretty excited about. Yeah so so the trick there is designed the synthetic I guess it. So if you if you have the synthetic sort of piggybacking daycare, say if it has been, it has to be there has to be some advantage that it is taken up only by the cancer cell bright. Deport Askew extract an advantage and so yeah. So is it is it really the designers a synthetic? Click is going to be well it it. It needs to be biased towards the cancer tissue. So the drug the drug right now as given. Can go to all kinds of cells. That's where you get the off target problems and tolerated dose. So you could the perfect targeting system let's say doesn't exist today I could say, maybe it never will. You never want to say never. The perfect targeting system he would take the most drug. You can possibly find this that the field of antibody drug conjugates. Picking a really specific interaction between the cell surface maybe and and a targeting group like an antibody, and then guiding at very maybe low dose, the most toxic than you can possibly make. And and that's not really this gain. This is this is much more. I think. About biasing drug that already functions. At. Maybe a broad broad enough range that you can even increase it even further get access to this whole new. Level of activity, and of course, we're in mice. Oh, lots can go wrong. that. That's the idea and so yes, it's cold controlled at the level of synthesis. There's no. There's no weird. Trick, there's no we don't have any kind of unusual stimulus. It's not a nanomaterial it's. Good old fashioned synthetic small molecule chemistry and really looking at. ligand design. So how do you design molecule to look more and more like what than what the natural system is expecting to see? And this has been this Med chem game. Right? How do I mimic mimicking natural whole nine or natural ligand of the protein in order to Trickett into binding to my drug? And in this case, we use that game but instead to carry and Transport A. The bloodstream. And ended shows could results in the mouse model in several mouse models were were very, very well. including, some some other unpublished work that's ongoing We consistently see this effect of. You know. Almost. A twenty times increase in in therapeutic index are they might have been sixteen seventeen quote me on it. But then in a particular version of of of the studies and again I mean the the caveats here these xenografts animal models. There's sort of an initial first step for sure and as I said I, mean I think. Ultimately, this needs to be taken on and the proof will be in the pudding if you can ever get it to a human trial but certainly, very, very exciting in terms of where it could go. I think actually that the underlying thing is perhaps exciting for Paclitaxel. But more broadly exciting what it might be able to do for other drugs that aren't soluble that don't talk at all that have. Problems of target effects but otherwise beatings contesting promising drugs, and so we're very interested in working with the lives. The group's new drugs invigorating old drugs with with a fairly simple translational sort of technology. Santa Crafted meaning Nathan. Get using actually human tumors into into Moscow. Sorry for the Lingo the Zeno being forum. So it's a foreign graph of any kind but in the specific case, he has a human. Cheema. in a mouse. Model so the mouses immune system is compromised. That will grow a Human Jim. The other the other type by contrast is a mouse that that either spontaneously gets cancer or a mouse model that is used as a mouse cuma tissue that would be like an immune intact animal, which is a slightly more advanced model. Okay. Okay and so if you're successful you can see sort of the lower toxicity, lowest systemic toxicity but essentially the same level of hypocrisy as as the Asian currently provides. You Case. You're absolutely right that that would be great if he just decrease the toxicity and get the same effect. You would you would you be okay. What we actually get as a much better effect we can go much higher doses because it's so much safer. We can go to high doses, but we don't the key here was and we've done this before and actually failed with some Nano particles. We've made where we increase the safety on the high. End. The also increased the amount of drug that you needed to deliver. Right? That's not that's okay. But it's not really that exciting right because now you're seeing a lot of drunk. Right. You've just moved the goalpost, but it's sort of the same game. This is being this is a different story is where drug what's just as well as low end the load But we get a whole new level of activity at very very high doses and so because of safety which comes from targeting. And from some other factors. We're able to to to get to sort of a new kind of activity of the same drug. So it's I I like it. It's my baby. Someone will say. WanNa be right. You want to be in that real wide a window, not just a window that's moved to a high dose. Yes so eastern personalized medicine possibilities here Nathan could you actually ty tweet? to to get optimum. Yeah. It's really good question. We've been talking about this recently because they've been some really advances in understanding how these transport the fat transport systems are up regulated Dan regulated or changed depending on specific patients. Genetics said depending on the type of humor they have, and then a subclass of those as where, for example, they have a propensity become resistant. There's there's different types of some of these pathways unknown some of them have more recently being described and so. I'm never sure about. Talking about individual patient by patient but certainly, I, think narrowing in on. Patient populations where. People have been refractory so that they're not responding to A. Common. Commonly, given Khaimah therapeutic or other kind of drug all where you know that has become become resistant or that or a subclass of tumors you. Still you're still talking about you know these lots and lots of people. So it's not individual patients but I think being able to say you know, yes, you've tested positive for this this marker on your tumor and therefore this drug. Can Do something for you that other drugs con. I find a compelling and powerful thing for us to be involved in because obviously, it helps those people who otherwise copy helped. It's exciting. I wanted to jump into another paper in totally different area. So this is about Selena Melania. And and this video reason news I guess fight so. You'll finding some radiation protection for Selena minute that idea yeah. This is a really, really interesting exciting a fun project for us once again that's how baby. So we love it and. Got Interested several years ago in Mellon and. Melanin this call we sort of like to save since ubiquitous enigmatic. Material. It's almost every sibling. Every type of organism on some form of Melanin has been found. It's typically associated as being this black pigment or dark brown pigment. A associated with hair color, we find it in human skin. It's found in the brain of humans. Of the I, for example, an kinds of locations and there are organisms that use it as a pigmentation offer a variety of different purposes. For example, use it in structural coloration these beautiful area. Get Black Particle based it's a pure. It's like a an optical effective arranging black particles in space lots of beds do that the shiny even the Kovic so that blackout you see Cros obviously generated by them. noticed. They've got like Shimmery, bluish type of effect if you look at that. Fascinating aspects of Melanin. One of the most I guess interesting areas for the folks in the area is that yes, they are. They can prevent a damage from state radio housing radiation. So for example, And UV, for example, in the case of human since the imagine you know your skin becomes darker as you get you have sort of this impinging light which people call tanning. Process old buddy reacting to. The outside world insulting with UV. Radiation and. The what happens is that Carolina sites in your skin get sort of nuclei get coated in this black pigment. May Be absorbing some light but what it's really doing. is absorbing radicals that produced inside the cell, and so it's radical scavenger. Sort of a defensive. Exactly and obviously evolutionary early as well as as well as you know in humans and in in the case of protecting us from UV. But also used another cards and color-display by different animals that also has some thermal properties and it's a very interesting matera. But yeah. So we got broadly interested in one of the areas that it's shown up a bit as in. For example, not just V protection but potentially in protecting synergisms gamma radiation. So Higher Energy Radiation. And this has led some researches to look out for example, Kenneth protect patients during. radiation therapy. that's work from from several years ago from another group. And so we got interested in these questions of. You know UV higher energy radiation optimizing materials like this for those applications. And the should've fascinating question of whether or not different forms of Melanin that exist in nature. You know what to what degree do they protect? Two different amounts depending if? One of these other sub classes of Melanin. And so looking at it, we should have looked at one of the structures which is not as fail Melanin, which is a sofa containing Melanin, and we thought well, let's let's do what chemists do best and sort of move around the periodic table and so we moved. Down the verdict table to selenium the idea that you would get better attenuation oil better absorption of x rays. And ultimately potentially more radical content into the material as well. We sort of during the development of that we also noticed that we make a very, very close replica structure at least as far as we can tell of natural family element, which is the Melanin that gives people. That's president. People's have when they have read half, for example. So that that sort of led to this selenium material that we call Synthetic Melanin I. really standing out as it's really good x ray protector we did that in cells and human skin cells. And ultimately. Yeah. We we're excited by a couple of things. One is the applications which I'm happy to talk about The second one is this kind of what we kinda find interesting. Thought Process. Now, that will nature already made this. We made it in the lab from chemicals, but you know selenium the the compounds we used exist in nature. So the precursor US off founded nature. So it's possible that selenium based Mellon like this does already exists which is kind cool and and maybe it's new. To protect those animals from some process or maybe it's used as a depot selenium. And so so that's under investigation. And so so you mentioned X. So gamma rays hasn't been tested or you find it monarchy for we haven't done a serious test of these materials for gamma. Radiation Protection are we did x-rays because we have the source? UV. sort of underway but that's that's not really expected to be that beneficial the. Gamma. Brings out the other question and where we think there's some interesting applications potentially and not just protecting organisms like humans or maybe I'll scan as an application or something for space travel with. The materials and so. You could it be a lightweight coding, for example, and we've just sort of begun these discussions and I'd I'd love to have more and we're going to circle back with folks who are experts in. What it would take in terms of a shield on spacecraft or maybe even high out to cheat flight. and so those things of the beyond our expertise but happy to collaborate always looking for those phone calls around papers let. Reared fascinated by this idea that. You know that nature may be very well have beat us to the punch already be doing this. Yeah. Yeah. Not of people want to go to Mars Nathan. Increasingly. People money to go back to the moon. Moon. Don't WanNa line everything with lead right? Maybe you want some other cool thing about buying materials like this is you can produce you can coax organisms into making them. So we we had a bacteria. We went the Navy Research Lab. GROUP THAT COOKS BACTERIA INTO ACCEPTING selenium. Melanin inside bacteria. So you can imagine you could take some bacteria that you just have to feed nutrients, and then they make the material for you. So yeah, colonizing. Maybe. You stop thinking well, maybe if I could get a limited number of organisms to make a lot of different types of materials then I have a lightweight way of of building structures and things like that and that that's quite a provocative and I think increasingly interesting thought for people. Yet that that's very interesting. So one of the thought processes I think that you have to see. If you to go to, Mars, you have to see that. Fit Organisms. That would make something. But that also equally WANNA reward to all the radiation. and. So if he can create species cells organisms that are able to create something from a food and of change perspective about also resistant. Then northern climates of. Creating an closure. Goes. I think it's an interesting and and you know the these. Organisms in the melon melon is the organism clause. Particularly this we also work with this other kind of melon and called Allah melon. which is a type that's made by fungi some of these fungi being found on the international. Space Station around the Chenobyl power station site and and they believe to be yeah intrinsically resistant to at least low levels of radiation like that and even the presence of. Radioactive materials as well. So. Within their own. The, the sort of organisms on earth that was just radiation damage high temperatures these all. Sort of long been sought-after for how do they do it? Can we put some of genetic qualities over to other organisms? For example, one of the most famous of these kind of ideas was around you know using enzymes that propagate DNA from. A really robust organism. So you high temperature DNA synthesis, and so this concept of so-called extrema files, right organisms that have love and flourish under extreme conditions. Interesting and I think if you start thinking about space travel or maybe living on Mount Everest or wherever it is that you think. Is the most extreme environment you want to be there? Right, right. Yes. So so inconducive Nathan I know that you are doing lot of research in this area if the cross section of materials and life sciences. So, look forward five years. What are the things that you're most excited about and he predictions most successful? Would, they be. Sir We talked about a few few areas of our work and we've got some other sort of along the same themes one area that's really exciting for us on the on the drug delivery the broad question of drug delivery is. Know, whether we and and certainly people on the field and others than it be exciting to see everybody kind of progress towards being able to drug different types of disease associated interactions that have so far eluded small molecules and you kind of touched on that at the beginning of this process of small molecule drug development. This so-called sort of undrivable targets that I think some of the innovations that went out looking at in terms of hitchhiking on transport is. Getting, inside cells tricking tissues maybe indicate. Otherwise difficult to get a difficult drugs to get inside cells and tissues. BRECON crack that. You're talking and it's almost. That is the challenge cracking that barrier getting across these biological barriers. With some of these potentially powerful therapeutics. Will be game changing I mean talking about an a huge impact on answering kemp basic chemical biology questions about whether or not. You even want to drug those targets through to hitting really known interactions that drive near a generation they drive cancer, they drive the big unsolved diseases and Y- you're talking cancer heart disease Tissue Regeneration. Potentially a city neuro- regeneration that concept of in the context of diseases like Parkinson's. Huntington's these are the great incurable diseases driven by undrivable interactions and. We've got a big push towards at many many other people do and I think next five, ten years. It would be exciting to have that breakthrough I think be not seeing a big difference within the next decade. In Him and health. Yeah it's really exciting. So you know the conventional process as he knows your test compounds. Andy think about delivery mechanisms much later in the process. But what you're suggesting is that go back into discovery and preclinical and cab that transport mechanism integral. To, the the drug discovery process, it's not an afterthought. Deliver the agent, but rather it becomes integral to the discovery process which substantially changed. A. Lot teased on today I I, think. So and I think that's always being built in I think small molecule. Folks have been being built into the drug design right around rules around what can be done and what copy data not for a drug to be like a drug. But I think as the as the material science understanding of how to maybe Organiz those molecules in a different way progresses. Then those two sort of ways of thinking can work more hand in hand and and so I I do think there's an emerging opportunity in sort of the meeting of sort of by materials, material scientists, maybe Paloma, science, with some of these just a brilliant folks on the small molecule side to do exactly what you're. Saying you know people have been saying this for some time? It's that that challenge that idea is is one that's definitely on people's minds. Especially, as you start looking at these really difficult to draw difficult to talk diseases and I think the technology and our knowledge of these by Marcus has got to the point where I think we are on the cusp of that on the verge of it and certainly able to ask the question and before. Right. Yeah excellent. This has been great Natan thanks so much for spending time. Thank you very much for your.

cancer Nathan Gene Ascii inflammation Paclitaxel New Technologies Marcus Northwestern University Toyota Gill eappen Pfizer Polymer Chemistry woods Gil Data Pharmaceutical Company professor of chemistry infarction International Institute for Na Mount Everest
How Creating Videos Helped Her Patients with Dr. Leslie Waltke

PT Pintcast - Physical Therapy

52:46 min | 10 months ago

How Creating Videos Helped Her Patients with Dr. Leslie Waltke

"Hey before we get started did want to say thanks to our friends at our es medical staffing. The leaders in travel physical therapy for supporting the show for so long. Here's the thing they're easy to talk about. Because at the root of everything are is they wanna find physical therapists and physical therapist assistants jobs. That's it doing what they want. which is being great therapists where they WANNA? Do it in all fifty states and see it all settings, so take a look at what they have to offer. Offer right now, a U. R., e., US, medical dot com, just take a peek and ask. It's no obligation. Right you're not. You're not locked in or anything, so don't don't think like that. You are E. Westmedical Dot, com. We trust them. You should too with your career. Take a look at where it can take you a US medical dot com. Go there. A U. R. E. MEDICAL DOT COM. Followed online at PT podcast and subscribe on I tunes, spotify or Google on casts. Absolutely. Yeah, it's it's awesome. Happy Hour and we are live good to see you. Those of you watching on facebook or on twitter, good to get to be heard. From those of you listening on the podcast, we appreciate you. PODCAST podcast that saves physical therapists for missing out on amazing insight, remarkable ideas and motivational stories in the world of physical therapy I'm. Your host tonight. Great Show for you tonight. That we bring back Dr. Leslie Waukegan back on the show before bring in. Dr Walkie WanNa make sure you don't forget. Subscribe to the podcast I tuned spotify Google podcasts amongst others, and we're now video casting as mentioned dropping everything on Youtube facebook and twitter, all at pt pine cast on the Social if you have any questions during the show or after the show. Make sure you head over to our social networks. That's where you can drop a question recumbent in that comment section and we'll either get to it live. If we can or if you're watching the replay, we'll make sure we can try to get the answer for you as well so wanna be very very interactive, so let's also here. Let's also hear where you're from. From so drop a comment. Where yet where you're watching from where you're listening, we like to hear where you guys are are actually taking part in the show I? WanNa make you feel like you're. You're here at happy hour with us all right? Let's let's get to the main event here. Guest tonight is known as the arm, whisper the explainer in chief and vitamin L. Some killer nicknames. Her down to Earth style here were combined with decades of clinical cancer. We have experienced have made the world better for tens of thousands of cancer patients survivors here in the US and across the globe. Let's bring in our guest. Today Dr Leslie Walkie back to the show. WHAT'S UP TIM here? Fight. Vitamin L. that's a great nickname. Isn't that great? One of my patients actually gave that to me. Is. Just kinda stuck in and now I actually use that as a motivational series for a group of my triathlete, cancer survivors little motivational series. They're coming in for a little vitamin L. that's cool I like that a lot. Often in previous episodes and will will link to some of your previous episodes. in on the on the podcast in the show notes so people can take a listen to that but but for people who don't know who you are. How do you? How do you explain it now? What's your? What's your pitch line with your log line because we're working on like creating content yet unholiday. Right so I'm a PT obviously I graduated from University of Wisconsin. To. Two thousand GS, Nineteen, eight, thousand, nine, hundred, Ninety, eight long ago. So, I actually teach to a bunch of PT School so. I am actually teaching PT. I've been a PT longer than they've been live. these students. And I didn't know at the time, but I ended up in the world. And there's a fantastic group of PT's across the country across the world working on. Haji, but there's not a whole bunch of us. Not so a lot of us PT specialized an apology I'm teaching. And it's it's just a fun world, but there's just this frustration. A my call to cancer rehab gap where you know, we get apology and PT School, but you don't get to do on college. Take care patients very well. In NPDOR, most PT schools and the such problem, but one ons. We don't tease enough about oncology Orange Rehab, and then oncologists surgeons medical oncologists. Radiation oncologists do not know enough about Rehab, so yeah, the patients. Through this a bit of of our lack of knowledge in it's really. Frustrating when we have so much to offer I mean it's just again. It's manual therapy. It's therapeutic exercise. It's nothing that a a p. t coming out of school couldn't do as long as they just kinda showed their thinking a little bit and apply what we already know. Two different patient population a like it. Why forgot to I forgot to crack the drink today? Want to say thanks to our friends from owns recovery science. There's source for PT's who are looking for certification and personalized blood flow, restriction, rehabilitation, training, and equipment to apply it online We're going diet coke lesbian that I'm doing from the North Way Brewing up staying here home state of New York. It's called Avenue of the Pines. You Win your case. And, it's one of those tall cans man I finished one of these two of these. No good I'm on the floor. cheers new virtual chairs. We do the camera there and we'll. We'll get this episode. That's. Is You know, and it's the land of microbrews here, and like who has the job of coming up with these names of these beers awesome job. It is an awesome retire. I want that job. I walk around like a world world of beer. The way I picked this when they just head, cool can art. Yeah, yeah, yeah, exactly. I was like the science. That's cool cannot buy that and it's a good beer. That's That's bonus points I'm. Less than we've had you on the show before talking cancer, Rehab and again we're will refer back to those people want to hear. More specifics in of treatment. We bring you on the show today to talk about something else. You didn't have this in your intro, but you're. Content. Creator and you know you're not dabbling. You're jumping in in front of the green screen. You're doing all the bells and whistles. You do the whole thing. And you know I was back in. September of two thousand eighteen Do People say. What do you do for a living like talk I just see the same things over and over and over again especially when you're working with a real concentrated patient population like many of us do now in a very more specialized world of P T I'm like Jeeze, if I could just have this, either on paper or or something, so a dear friend of mine who kind? Kind of works as my business analyst, said you know I. Challenge you to do thirty videos thirty days. I knew nothing I didn't even know. She brought that up, but it was a challenge in irritated me, so I had to do it, and she thought I was just GonNa, grab my iphone and and say Oh, here's what I had for dinner the night and here's how you stretch the. Major but I just I don't know what just kind of blossomed into this case. I'm going to do this I. Want to speak to my audience I. WanNa teach them something And So, you know. I literally knew nothing had nothing, so it started with. Watching youtube videos. Okay how I have this on my iphone. What do I do with? How do I turn this into something that you can put on facebook and? When you make video, where do you put it on? So. And now I actually have a checklist. So, it really started as a challenge, and then because I started doing it. They came You know there is the people are on facebook. and people hurt. People have problems. People have strokes. Parkinson's disease people have e- pain. You'll have cancer. And, as soon as I started talking I, had no idea but my my viewership just grew and grew and grew, and then I couldn't the stop. You know Because it became a thing. Now, it has a name. It's called the recovery room, and just this last Friday across five, hundred, thousand or five thousand. Followers a team. It's really very excited because it's all been organic. I mean you can pay to do that stuff, but it's been all organic. And, my goal is to hit ten thousand by the end of this year. which is a stretch goal, but now what the heck! Congratulations that's. Worth commending because. Yeezy when you when you see a celebrities, got you know five ten million Thing listen. They built that brand for a long time being an actor and actress or of Sports Athlete. When you're building something organically, it's difficult, but those those connections are worth it and we'll get into the connections of the results right, so you got challenge. Make thirty videos in thirty days and you went the other route which is I'm thinking about my audience? Right, which is instead of like. Hey, here's. My phone is what I had for dinner last night. That's how me. Is going to the audience much and you flipped it around literally. into into Selfie mode and started making those videos, but you were thinking about the audience now. Where's your audience straight up patients was it educating other colleagues or physical therapists about both or you know? How did you find audience I kind of went? With Kind of the the patient audience because I'm not really connected with a lot of other PT's. And I and I did have a little bit of a following because I'm kind of hopeless and survivor groups, so I just threw it up on facebook, and because they were already connected to me, they started seeing it, and then, of course they share, and and they share and the NFL. There they call they call their medical colleges or their cancer Stanford, and say Oh my. God have you seen this great And so I kind of used my. Formula using the clinic to it's my magic formula called vet 'em. Everything's guy have acronym. How to engage your patients that makes them your patient long-term. Just Hook Line and sinker are gone so ballot eight explain. Teach motivate. So anybody who's in pain or anybody's? Who's WHO's been in an accent needs to be validated especially people with cancer. This is not your fault I know you can't bend your knee I. Know You can't get your arm over your head I know it hurts it. That's what happens after this kind of accident. This kind of surgery of this type of disease so it's okay to hurt. It's okay to complaint. That's really important for people to to to grab that. And then explain to patients why it hurts. Why can't move a why? They had to undergo this particular kind of procedure? Teach them because their physicians and nurses often don't have time to do that or they don't dude level that the patients like added in ninety percent of that, so we in pt have a one foot in the medical world. We also have a foot, though the the patient world, so we can explain things a lot better than most physicians have the time to do skill set to do. and then the next point is to teach them. Okay. What are we going to do to get out of here? Step one step two step three step four. This is gonNA. Take on my part. This is GonNa take on your part and this is about how long it's GonNa take, and then you should expect to be one hundred percent pain free are you should expect hoping hoping we can get you back eighty percent? You might have your pain some time, but you should be able to do what you want. and then finally as motivate people I. Mean People just got their butts kicked something? They don't people. Patients don't come to PT's because they're happy. so things wrong. So so motivate you know. Here's the expectations. Expect for you can do that. You have the ability to do this. You have the skill. To of my famous lines are exercise like your life depends on it, because it does and you know you are the most pertinent preachers like the most important person on the planet because you are. So they're just those little motivational pieces, said those really kind of engage your audience, and take it to a home level, and they just they. They stick around now. When you approach your your teaching like that, I like that validate educate teach motivate very good Jimmy, are you a you? Flip that right over into your content and and and this was not planned, but I. I was actually taught in radio teaming I. Today I want you to be tight like don't use. Don't use ten words of five will do exactly me bright. Just be be informed. By stick around, listen to, even if he's telling me a dumb joke, right, but at least get to it and I I want the laugh and then be informative when I leave have something whether it's humor, motivation or information when I leave your radio show. That I had before, and this makes me WANNA. Come back, so that was just wrote that down. Type. Let's get to it, so that already created content it was it was a it was A. Dare I love when things start as the game. which is like you won't by? Line from my friends in high school and we'll still we're in our forties, man and You won't and then. I have to do it more, so you did it. You did thirty videos in thirty days. Let's start there. It's short response in thirty days. How much do you think you progressed just by making a video a day for thirty days huge right? It's. The only way to do it because you can't take a class on this is so experiential. Learning your iphone I mean you can either spend a week with it intense or or go to four classes learning. Right it's just do it, yeah. I spend a lot of time on Youtube. I threw. FM's left and right I didn't break any cameras, but I felt like my phone out the window. because it's just frustrating. Once. You learn it now. You got it and it's a skill. Set that I think I learned more in my early fifties than I did in the last twenty decades. Just by by doing an it's fun, and it's cool and I know a lot more now than some twenty and thirty year old so yeah, and that's the other thing. You know you've been saying you. You've been teaching students longer that. You've been even practicing feet longer than the students been alive. You're doing stuff. We're show some samples you're doing since that is going to be over some people's heads. It was over your head. Way Over, and you didn't let it be over your. You're like I'm going to. This is pissing, but if I do this, my audience is GonNA learn more. They're going to be educated. They're going to be taught. It'd be motivated. Validate them with the video and and keep in mind. Don't do exactly what Leslie does. You don't have to have a podcast or video stream. So where would you start? Someone comes to you because I get this a lot as a pod monster. Hey, man! What it's almost, it's funny, because like a lot of them. Come to me and they're like I WANNA. Start a podcast. And they're pitching me. Their show and the first thing I do ironically is validate and I say this sounds like a great idea. You don't need my permission just so we're clear. Right like almost not asking for permission, but they're like. Is this a good idea? What do you think and then then comes in that education? That's going to be complete female we're going to. We're GONNA. Do this whole thing's. It's educate. Educate part, where would you tell someone to start? If you turn to a friend or colleague and you said thirty in thirty days. Where would you have him start? I would first of all conceptualize. Okay on my my checklist, if okay, who? WHO's your pick? Your audience who talking to always starts with people? And then what is your intent? Are you trying to be funny? Are you trying to educate? Are you trying to get them to buy something from you? What's your intention? And then you don't have to have a name for your space, but you have to put your video somewhere where people can see them, because people aren't GonNa, go. Hey, I'm GONNA laugh. Was that you could pick name last two. Right so! But so where are you going to post? Are you gonNA put them on Youtube? Where going to put them on facebook? Are you going to put them on instagram on link then? We're GONNA. Put them because you need space to put them there. And then so I would just literally start with that and the only hesitation. I haven't talked about this. Stuff is or showing videos. Is that if I hadn't seen these before, I started I would've started because it looks like last too complicated I can't figure that out. Really I approached it from such a position of ignorance. Well, we're. Let's flip that with that. You approach it from curiosity and desire. Want could be able to do this better. Go, I'm here. I don't even know where I wanna be I wanNA. Be Better than here. Right? Yeah, so. When I started, so you don't have to have that intent of that plan just. Do it just shoot something. The very first video I shot. I stood I stood in this corner. Right here and I put my little camera over there and I put my makeup on I still there and I said hi, I'm the doctor Leslie Wilkie, and then I just and I, wrote my script or Batur and I hung it up there so I could see it, and then I put that on and then. The cocaine that's done. That was cool, so the next one I did I literally took my laptop on on A. Like A. Like a music stand right, hook it outside and just talk to it. And, that worked. As, it was just an and others. I use my iphone. And then I got kind of fun and I got this little green screen going on back there, so that I could and I could dump that into. My my, because then the next thing. You'RE GONNA. If you. If you're doing more than just using your iphone you want to take that next step. It's using a green screen, but then you're gonNA have to invest in. Some kind of editing software. And Furlough for for most Max already come with I'm movie. Betsy. You've already have it. I you screen flow, which is a Mac format and then cantate Ios or those folks with with Stuff. And then, because then when you do that, then you can start getting a little fancier, so I can stand in front of a green screen and Chitchat and then have a completely different picture behind me right put bullet points of of what I'm talking about where I can show some random dog walking down the street or whatever, but this is baby steps right? We've talked. Episode people need to hear this about the triathlon program that you have with with survivors from cancer treatment. You, don't you don't teach someone how to do a flying dismount from their bike to their run the first day. You don't keep green screen the first day. Vance move. Let's let's get you comfortable talking into this thing right here. which by the way I didn't do a lot radio. I get comfortable with his camp. Yeah, but actually I like it now because this brings leslie. WHO's in the Mid West to me in New York and I? Get This I. Get this I contacted, but when you can turn this inanimate object because you're doing it a lot, you're not talking to the audience in real time your record. But when you can turn this inanimate object, and you can picture, conceptualize, and say I'm talking to people. Got It okay now. In. That's heart that takes a good couple of months to get to get comfortable of standing in front of my pets went crazy. They're like what is she doing? Why should making that noise? after a couple months they're just they just plop on the floor. Now. Lay Down there. She goes again donor bank I. It's just uncomfortable and weird. It's a comfort level. You just have to develop. We called it Empty Room Syndrome so whenever I was one to go from wanting to be a radio DJ. Come on in. Here's the buttons and We'd haven't train off. You know off air for a couple of couple. Come on air and I was like here's the deal. You're gonNA say something really funny or really really cool a really anything, interesting or creative, and then you're gonNA hear. Thing. 'cause you're standing in a room alone now. People are in their cars or their living or their garages, and listening to you and what you've gotta think you got to hear in your head, is this? Guy Here that cheer. Just gotTa keep moving a committee comedian on stage. You tell a joke. Bombs keep moving. Do not tell the punchline again. It was bad the first time it's worse the second. You gotTA. Get past that because you're I've seen videos a you literally just taken a walk down your street and you're like Hey I'm GonNa talk to you about this today. Already tell however many videos in there's his comfort level of I'm I'm going to speak I. Am I'm educated right? So that's what I do. Not to interrupt, but you have to remember to because even when I watched people's videos God, they're so good. Editing and Tang there. So you see somebody's at three minute video and it took them a half an hour. Shoot that I'll tell you this though right? So who are the guys that I looked up to you? The women I look up to are comedians. Doing it live right. Yeah and. Host Jimmy. Kimmel, Jimmy Fallon Jimmy Mackay I love to be in the mount. Rushmore gimmes one day, but I'm just not like. For you and a lot of times on one week 'cause they know we got to get it done so there is there you do hit a level where? We went we used to record. Let's unites talk on the phone and then I would. I edit very rarely now so I have I can't believe about suicide. Cova de think is it started making me? Be More. Conscious of how I WANNA, see I. WanNa see eyeballs I wanna see I wanNA. Lean into the camera. I want you to know that I. Agree with what she's saying I want to see. My fist-bump and stuff like that, but. I love that. Check that you just referenced you, said the word intent. What is your intent? It's Iran. I literally say the same thing but different. I say what do you want the audience to feel? An after they're done with your content and then I shut up. And they're usually like wait. I haven't thought about that I. go right why masking Becua-. Yeah Yeah, and again selfishly a lot of my videos are what questions do I wanNA stop answering every freaking day. because. I travel, and teach so much I have all these people coming up to me. Saying this hurts. That hurts I. Don't understand why teague. What is this drug me? What does that mean? I don't understand this. Why does that hurt so now? I literally can hand them a card with the recovery room on it and say check out this video library episode. By the A, one people ask all the time. What am I have to get on a plane and go home. I hate leaving people without the answer so now this way to answer this question you're you're you're creating library very specific answers right, and and you're not going to answer every question and. You're not gonna find everything on Youtube. This is not a cure all, but you're gonNA filter a lot of things out. Yes, you're going to say hey I. I did a video on. This explains everything in three minutes and go for, and there's that tight, bright informative formula, which is like I got you. It's specific typewriter. Forget you. If I look for something on Youtube, and I see the videos nineteen minutes long and. I'm like. If you can't get it done in three I'm kind of like a and that's like that's more specific. How do I accomplish this task like like I I just car and I was like I don't know how to turn the Dome Light off, and it was. It was like varied, but the video was forty five seconds had been I'm like no. It's. The other thing that you said was Jerry Orden, which is think about where you gonNa Park these things right putting them on a website is one thing, but then people to direct people to the website, and you're not GonNa get a lot of heads right so what you're saying. This is the word the verbiage that I use this talk like your audience listens. Listen like your audience talks. If Yard is on instagram and you're on twitter, you got a problem. You're on if you're on the same, and it's sounds simple, but people will make this mistake. I'm going to be on Youtube and I'm like well. How are you GonNa? Get found, you know. I put out content again found great, but you need to be putting this content other places to lead them to youtube channel all right, so that's that's where to start. There's your checklists. What else is on? There's anything we we didn't get to yet. So let's see. So posting. So, I always recommend facebook. audience! My audience is not I don't everything on Youtube. Because then you can email. It's easier to link to if you're spending links, but I have three hundred dollars on on Youtube is all so they're just not. They're I'm not pushing that button And then so the the three major components than when you are taking the next step like how could it make this little better are video, lighting and sound. Old Come again I'm just getting into this. My show to help me look better help so. It will lighting is important. and sound is important so honestly. The iphones these days are credible. They really are so. That's the last thing I would probably buy a camera. but I do have so I use my. By phone eight and then I had my little DSL. Our camera that I literally shoot video with this. Camera but the experts will say that people. Your audience will be more tolerant of bad video then they will be a audio now. People will listen. To something, it sounds good looks crappy, but they will not watch something that looks good was in. It sounds crappy so. An audio standpoint again as long as you're close enough document. I'm literally talking to my laptop right now. in a youth fear within eight feet of your iphone. You'RE GONNA. Be Fine, but it gets to a point where you may want to invest in like where it's this thirty foot corn. You plug it into your iphone. Plug it into your camera and you can stand away. That's is. Pretty Cheap I. Think you can get these for twenty bucks Yup. and then it got to put like I didn't be tethered all the time because I'm doing this on a daily basis that I'm like I trim over that PM court more time. As you're your address. So then I switched to the wireless. Swear Slob, which was really nice, because then one piece hooks to the camera. One Peace looks to me, and as long as you remember to turn it off to cookie before you go to the bathroom, you're you're good. Funny, story cleese to? Date My. My Day job is the director of communications for Fox rehabilitation, and I hope my bosses in watching but this. The cost of some of these things when you get your really good can go up like a might have. Mike is Thirty Bucks, but a wireless mic might be three or four hundred bucks because they're in between space. You're going to get audio dropping out right so I knew when you good wireless laps, I'm talking to three hundred bucks, maybe five hundred bucks a pop. And he's not an audio guy, but needed to make my example clear, and he said because he's a smart guy, he said. Can we do it with wired, and said absolutely we work with older adults, and I said I'll be over here the video with a physical therapist and an eighty five year old patient with seven co morbidity. All these we've got it on tape. And he said how much wireless mics I had five mile owns in. Which PT Brain with. Working. But but yeah, I mean and you see the headphones. This isn't because I want to look like I'm on Apollo Eleven. There is a little bit of a different sound, an audio guy I run this Serum Mixing Board and I can do like really funny things like I could do. Things like that whenever I need a little bit of a an ego, boost and stuff like that, but audio is important. There's also I want to send you. Maybe we'll drop it in the comments I. Just picked it up this week. Assure Microphone Kit. Attached to the iphone comes a little Tripod thing was like two hundred bucks I'd beat on it for the last twenty four hours. This thing picks up. Great sound attaches right to your iphone so I'll to you and I'll put it in the comments as well for. This is and it comes from shore, which is a really really good name in the world of microphones. In fact, there microphones are usually a little bit out of my price range Let all right, so we've got lighting. We've got audio. What was the third thing that you had said? About. Lighting and sound and lighting. I. You know right now I've got my overhead light on and I'm not perfectly. Let 'cause. This isn't a video shoot. homedepot and bought some a you know. I just want on Youtube Anisette. Okay? What lights do I need? so I literally went to Home Depot Lights there now. We're just fine for the level of videos that I'm doing well I. Mean Let's do it. Let's do a demo reel. Quick Watch. I got a desk lamp, so I don't look that great right? There look pretty worried out. A desk lamp, but I found the wreck on Youtube I'm pointing it off the wall. And now it's banking off the wall. I've got a I've got some are on the wall, so it's Kinda read. It's not a white wall, and it's coming at me and looks right, and this is coming from a radio guy, but I've found the answer the same way I want you to like. How do I how to look better on youtube videos and? Get Desk Lamp Pointing Wall. Making money because all of these executives and all these professionals across the planet are on zoom now because that's where meetings are that people are making money teaching how teaching people how to not look like an idiot as part of my job now. I'm like okay. Well yeah absolutely. So many. I'm creating so much content with physical occupational speech therapist around the country, and the goal is will now I've got the capability of video now teams we can use zoom whatever and I'm like okay. You look good, but the rules right I want the camera at or just above my line. If I'm sitting down I, WANNA be within an arm's length. I was tell people at arm's length of the camera, and that's good for good audio, or you know we make sure we have headphones, so we don't get that feedback. Loop I mean. Does it matter you just referenced? People will watch a video if it's OK video, but not grade audio, but if both they'll stick around even longer. If data to point to it that you have quality content quality, production value the stick around. And again especially hits in a professional setting where you're leading a meeting people that you may not know. What's what kind of chair you sit and what's behind you? You know keebler looking like you'll like this and it's like hello look. Stopping. It really how you present yourself matters if there's some meetings where people like whatever you got to get our stuff down thirty minutes that. Professionalism matters, and there is a step to that you present yourself in in video. You don't need to to pitch at first impressions matter I. Think Everybody just kind of like. Thing is a lot of them. We'll just I'll just throw the laptop open like well. That's your first impression. If that's your first impression, you can't Redo that first impression so it is, it's it's worth the time in the effort. Even if it's a listen, you don't need to spend a lot of money, even if it's a youtube search or twenty seconds of thinking. Hey, maybe I don't want this this laptop camera, you know blow islands, so you check it out. How many nose hairs got going on? You don't want that so if you can prepare yourself a little bit right, so that's what you do so like me. I framed up the Brooklyn Bridge in the background, not a green screen. So, so let's see if I can share some videos. Which one do you WANNA share I. Let's see. What you got. Let's do Let's just go with liquid first of all, because that's the easiest thing anybody can do. That video is shot and I call liquid because the essence of this video is how much liquidity supposed to drink in a day in thrown out the because most my cancer patients are saying how she really that that glasses of water is really a myth. So, this entire video which I think is four minutes long I'm all of it was shot with my iphone. no. On a Selfie, stick right and again you have to watch I'm holding its you. Don't WanNa be obvious at old stick is that's kind of tacky. So I'm holding the Soviet stick. You can't really tell I. It's right now just in the still a. Position somewhere our jewelry way. And it's it's all sound in video from the. Looks like he's just someone just dragging behind you. So I literally shot this inside Sam's Club. You made a throne of model. Let's go sits in what? Where's her a lot of liquid? We're going to see him. You could have brought a DSL and you could have improved the quality this much, but the portability would've went down respond. Now. Here's somebody else's holding the camera for me. Obviously because I gotTA talk with my hands while you still sorry not with the iphone. But she just moves a little bit and again never gets more than four feet away from me, because I'm not only using the iphone sound and then just kind of talk that all take took this all of these little short clips together because I'm going to move somewhere else. And, then I took some Can you fast forward ultimately out for you want to go? Right this so here walking of course walking by some beer We've got to tell people that the name of this this is called B roll. Yeah WanNA. See Video. Just go to youtube and right and type. B Roll, and you'll get the party video bureau which is hysterical, but In terms of post production value, which is a little voice over b-roll lets you tell a big story in a short amount of time, but doesn't lose the visual of doesn't doesn't the audience visual. Why I shot over some rape before that I shot over some fruit, because fruits qualifies as liquid. Amstutz clubs got just tons of it, and it's great. It's great color. It's great visual and then And then actually at the end of this one. We don't have to watch it, but there's actually some outtakes here. I shot this. I walked into the door and it was locked slammed right into it. And, you're like all right well. We don't live. All right I'm gonNA pause this one. And what are we doing next and just? The, the audience right now doesn't get the audio, but we're we're. We're talking over it anyway you want to do. Or behind the scenes. Let's do behind the scenes because then. This shows you how to use green screen. Spending about is how to use how how I how do I, do what I do right? I've been so confused in how green screens work so here I am standing with my iphone products Danny Green screen. For a second because I'm going to do. I'm going to snap my fingers and do a little fun video trick. So I'm just chit chatting about you. Answer questions in the recovery room. Whether questions is how you do that, so that's honestly what this video was about. Okay. Yeah! So the toothbrushes I get. How do you do that? How do you do that, but? I do a fun little. Snap, you knew like. Yeah. This is US radio for it. You know I'll come on a pretty cool smear. Learns done you, too. So see I just kind of stopped the video and I changed clothes went back and myself in the same position, and then just put the too close together, and if you're the same screen, it doesn't really matter where you are what you're doing, so here's my office, so there's my lighting. There's my little livelier. That's the way it one. There's camera. There I am. Gets. anoling on there and a guest that's. Your Find A. Fast forward a little bit Jimmy to. The camera and then. GIG BARGAIN SKIP that. So those in the room right now. Wavelengths So skip more and we'll get to, so there's where that's the editing software on my laptop inflow, Ryan Sunscreen, bullets, rate and again that was all. experiential learning, so I just want to highlight this. You'd literally made an entire piece of content in how you make content. Let's we. By the way I have a getty's well. We! But you wanted to let people in literally into the recovery room and you show them this. All this stuff you're showing us how much how much did have in your first three months? Little. I had a lot of this. Stuff is my closet. Wardrobe magazine I professional wardrobe. Step up my wardrobe game. and again it's nice to. Remind branding now is is me and the. SCRUBS IN A row. Now. So, I had maybe fifty percent of that when I started right. And then just kind of added. Just becomes more convenience for me, cow. And maybe a little bit better for the consumer. But otherwise you need lighting video and sound and you Kinda from an iphone. We're looking at third video and this is. Looking at. Is this radiation this? You got to be kidding me. That I'm looking at it off screen, and I'm like what kind of level is. This seriously got lasers laser. relievers? We're GONNA. You're flying through space so again. That's me literally standing in front of a green screen, so it's litter here right over. Well, you guys can see. There's migraine. Dependent and then you just put it into your computer, and then you can put something behind you whether it's A. You know a screen like that that that's part of my. obt virtual buttons, farm eulex Affront Exit Taller yet, and that's just all on onsite learning. But so now we're GONNA. Go behind. We're going to go into the radiation. Oncology Department again. My my goal for this video was to make people less afraid of the patient. A little walk through out there. There's already county nurse. They're very nice people. They're all super nice. And then destroyed some cool stuff like this so now this is again video that I shot with my iphone. And I took him home. Put It on my laptop. Now. Stand on green screen with the video going behind me so I could do, but it's a lot more fun. And then there's are linear accelerator sizzle chat with My. This be role in the back is all chat with my iphone, but when you see me talking, that's shot with my DSL are in my office. Wow! This is Kinda shook the patient the table and why? It's important that we talk about positioning how why do we have to work so hard to get your arms ready? And and again it's just very. Very disarming patients to understand what all this stuff is, and why they have and. Yeah your. Housing people to to what they're actually going to experience. Wow, we don't have any lasers. I I gotta I gotTa talk to my producers. We have no lasers with no onscreen buttons. You know what we have, sometimes sometimes we have. You know what I mean. Have you ever had any? Have? You ever been been on the show. I just tend validated right. They're not having talking banana I don't want to Brag, but I'm a banana right now. But a lot of that Baroque comes with your I pay think sixty dollars a year to screen for you get library of of photos. Sounds so I can make people laugh at me, too yeah! and. Where you want to be safe, you go. All Day today Oh my God I'm using snap camera right now, so people are not. You can run this right through your camera If you're a Batman fan, you could be Bain. Darkness! You only adopted it. You know this is the way if you're a star. Wars fan demand. You'd be very patriotic very very patriotic and you could. Get. A little bit a little bit of effort on the front end can can can bring you some big results on the on the back end, yeah! Results let's talk about those results in the back end you know you mentioned you know follower subscribers, everything, but talk to me about connections to the people that you've the people you were thinking about when you made those I videos, so. The connections are huge, so I have learned a ton because when you're talking with people who are out in the world, you know we spend all day with patients that are in the middle of physical therapy I'm talking to people who've been done on the other side so while have I learned a Lotta? They're fine. Oh, I fixed them I, learned a ton Oh. They're not okay. These the questions that they have deserve you know. So I've learned a ton The feedback has been incredible so I'd be I have become a better physical therapist, talking to people who are on the other side of this connecting them with each other 'cause. Now that gets talk to each other is really cool so they validate each other. But I now have. Support Groups and cancer organizations that now take some of the stuff. Some of the contents relevant to with every once in a while like Oh. Yeah, this is really good contents. They posted on their page. I've met people met and I've done now. Conferences for people that I've never met that. I've met through the recovery room. So it's. It's a big world out there and so many people are affected. Again regardless of what your service line is in in in the world that you're working in PT There's people out there. That are suffering in this people that do what you do. so those connections whether it's you know professionals. physicians nurses war professional organizations in that particular disease or injury type. Or other physical therapists that do this kind of stuff or the patients, so it is such a a novel. Upcoming Way to communicate. And connect. Like your audience talks. If you do that and people think there's a trick magic. If you do that consistently enough. Yup, you're connecting all the time like I. Tell people to like people talk, and they'll say well your degrees in communications and stuff like that in terms of. Public Relations and you're always public relations. Crappy job at it or you're doing a really great job at it and if You're doing a crappy job of it but you're saying there are people out there that need my services information and I'm going to talk like they listen and listen like they talk and when you do that, you can't miss in terms of communication. We're not GONNA do it on this show. We try to keep this thing. Oh, go ahead! That's where I got the nickname used at the beginning of the show explainer in chief. People like? I just I never understood that before so breaking it down in this video format because we may not have three to five minutes to decide not for all. Right it or in in the middle of a patient. PT Session of got a half an hour and a spacious gotta be somewhere where I've got somebody. I don't have time to do it, but I'll say you know what child is at home. If it goes into depth on on exactly what what you're feeling here, so. You started that was. You even I mean we've all seen this this this lightbulb moment. Oh, when you explain it, and it might be the fiftieth time away the five hundred times here, but we needed to hear it and if they didn't get it when they go. Oh, it's a great feeling. I love had that feeling. A better even when the priests knees feeling, which is strangely pleasing. But it's like Oh i. get it like I was it was dark and now it's light. Can Do that and you can do it on scale if This patient engagements go up and you. Know, show rate is going to go down yes and. This is a family show Leslie. Apparently, there was an f-bomb story. I was supposed to ask you about. I think it was the other way around I. Think you're GONNA. Tell me about. Tell Me Yours I. Want you said You had an f-bomb? You Tell Me Yours I'll tell you that I just. While they're frequent. The story is continual, although now not as much, but the Boyana, because again everything experiential learning. It was just frustrating and my family and pets again could hear me screaming for my office and they. Were going depending on my yelling and hollering, and it's just, but now once again I don't swear, I don't really care that much anymore, and it's not that I've been concurred. I still just don't need to. That's good, so the my f-bomb story comes from W. B.. S. X. which is ninety seven nine x northeast. Pennsylvania Wooksbury Scranton. And so a lot of stations will. He will have a thirty second delay when you hear that they're actually be a machine in the room. It's there about thirty. Forty grand at the time is ten fifteen years ago. It was the machine with an actual big red button that you would punch. And we didn't have when I got there. They weren't everywhere when I was in radio hours I mean we were still using eight tracks back, but. We installed one on a Thursday and. Trained on on Thursday and Friday. My boss was going live from wwe event at the Mohegan Sun Arena so he's going to be standing outside. He was going to be like you know John Man. I'm a street talking to everybody and I'm still going all right. We're GONNA. Live in in three two. One is like Hey, what's up? I'm Chris Lloyd and we're outside and wwe. It's going to be the smackdown Blah Blah Blah Blah Blah. Hey, and so he's got people filtering into the arena behind him. And he goes. Are you excited for tonight? And just points Microsoft at some kid and the kid just y'all's. Bremmer. And I'm literally in the studio and I'm like I. Just got trained on the on this. Yesterday and I look over. There's two buttons green and red, and I'm like I'm pretty sure it's hit. The Red Button hit the. There were hit at once. Don't have to hit. It twice. Hit that thing thirty eight time. At my boss is yelling my ear to hit the button hit the button. Did you hit the button? Did you hit hit hit? But we're off the air off the air, so you gotta pay taxes that stuff on the Internet you, can you drop on John You? Know, but we just try to keep. This is a family show. In case you listed in the car That that f-bomb story is brought to you by our friends at medical staffing. They don't drop F bombs. That's why we like them. leaders in the travel PT World and permanent placements as well so if you're graduating needed somewhere to go sure you check them out no obligation, sometimes people think of you go there and you ask him a question then. Then, you're signed up like you're in the foreign legion. That's not how it is It's a you are a US. Medical Dot Com. That is a U. R. E. S. medical comments. Also a lot of people think it's just outpatients peaks. It's not all settings, all locations, all fifty states, plus Washington DC so again. Go there a you are US medical dot. com. Leser before, let you go. We got do your parting shot ready for that. I am let's. Check out this video I want your once you're. If I was GONNA impress one person if I can impress. Dr, Leslie, Walkie. On Your Trust listen and I'll tell people out there. That's from a company called videos via. E Does e e or something like that. You find to a service and it's X. number of dollars a year and you can personalize Biro Biro transition stuff does that take the production value up? So Yeah party shot from the Academy of Orthopedic Physical Therapy at Orthopedics Oregon. a bunch of different course on there. We were talking about current concepts of orthopedic physical therapy, being the leader. If you wanted to go and take the exam, they've got a bunch more lower quarter up. Recorder the Joint, so if you want to up your game as Orthopedic Physical Therapist. Who else you WANNA go to write HATEMI OF ORTHOPEDIC PT. Check them out. Ortho P., T. dot org, the other parting shot Liz. You've been on the show before. This is like your mic drop moment. On your microphones in the room and actually physically drop it on the floor. Don't. Actually. NIGHTRIDER MASSIVE OFF! What do you want to? What do you want to leave audience with I I love this because. Y- videos can be evergreen. So never put a date ninety nine so i. Did reposting stuff so the other night? I heard I heard my connect. Forget what I'm going to say. It's like watching myself in the first time and I'm like right down. Unlike an it's a perfect parting shot so and for people that are watching and are interested in doing video. Insert your servants line here whether it's again. Ortho or it's pediatrics, geriatrics, neuro, whatever cardiology. So here's my parting shot. Cancer is a tough topic yet. We have found a novel way to share important information that is evidence based medically accurate, designed to make life smarter, healthier and happier for those by cancer or insert your service line here. So this is just a novel way to get information on. You know it is up. It's microphone. Youtube is a microphone. Use It. Yeah, and if you look around the world, the entire world has monitors right here, so you got the Mike and your hands. World has a monitor with some speakers on it, and they're waiting their yearning for your content if that appeals to them. Create that content Let's let's throw her website up on the wall of the THE WALKIE ACADEMY DOT COM Make sure you check out her. Listen even if you're on the world of Oncology Rehab. Check out what she's doing and do what she just said. Flip it, and how can I do exactly this to help? My patients are my colleagues. The socials there as well. Let's let's have you back on the show. We'll talk more tactical treatment the next time you're around, but I really wanted I. wanted to commend you on the the way. You're able to not add but multiply value and it's. Fun Interactive and good stuff and the audience should be our audience. You're doing it to. Be It's easy, and it's fun. It's powerful. It is powerful. Walkie from the recovery room and walk the Academy Dot. com. Thank you so much for doing what you do. Thanks for coming on the show to talk to us about it. Thanks DJ. Jimmy could talk to you always love the pine cast. Yes, yes, the port, the show play telling a friend or by leaving a review, a nineteen or Google play shooter day brought to you by the Brooks Institute of higher learning an innovator in providing advanced post Professional Education Brooks Ihl. Offering continuing education courses in numerous specialty areas, six pity, residency programs and Fellowship as well as challenging but rewarding internships, the I l. specializes in the translation of information from evidence to patient management learn. They can do for you to support your professional development at Brooks Ihl Dot Org. Our home on the Internet. CAST DOT COM created by build. BUILD PT provides marketing services specifically for private practice. PT's from Website Development and hosted inviting content marketing solutions. PT Clinics across the country. See what good pt can do for you today. Dot Com. The PT PODCAST is a product of PT, PODCAST LLC it's poured fresh by the physical therapist Jim McCain ingredients are sourced by our chief connections. Officer skied on it from Marymount, university. Brewed, fresh by producer and physical therapist, Juliet Singer and by producer and creator second year student Bridget Nolan from sacred heart, university PT podcast is podcast that saves physical therapists from missing out on amazing insight, remarkable ideas and motivational stories make sure to follow us online at podcast and subscribe on Itunes, spotify or coupon casts. Laugh. Olivia! It's it's awesome. Thanks so much for listening, and if you found value in the show, all we ask that you tell a friend. This has done another poor from the PT podcast the PD. 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