Treatment

Automatic TRANSCRIPT

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

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