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.