MAGGIE’S PODCAST
Episode 3
Maggie’s Men’s Hour
EDITH: {Music starts}
Maggie’s podcast. Giving you so much more than medicine.
Thanks for listening to this Maggie’s podcast. Each episode in the series will focus on a different aspect of living well with cancer - whether it’s the food you eat, the buildings you spend time in, or the people around you. They’re here to make you laugh, talk, and think.
This episode is all about men and cancer. Join DJ Johnnie Walker, for the first ever ‘Maggie’s Men’s Hour’.
{Music finishes}
JW: Hello, Johnnie Walker here. Excuse the noise of the traffic but I'm at Charing Cross Hospital in West London and, at the end of the car park, is this amazing kind of futuristic orange building. There's plants all round the edge of it. There’s a most incredible roof. There’s light that comes into the building and this is a Maggie's Centre where some amazing work goes on. So let's go in and find out over the course of the next hour… {Music}
Back in 2003, I was diagnosed with cancer, so I do know first-hand the challenges and the big change that that illness can have on your life and that's why I wanted to come to this Maggie's Centre today to host the first ever Maggie's Men's Hour.
So I'm sitting here at a big kitchen table. Making cups of tea and coffee, I think, is a big part of what goes on in a Maggie's Centre {laughs}! We're going to find out from a host of men how cancer has affected their lives and, also, hear from some people who try and help them.
On the show today, we'll be hearing from men who find it hard to talk about cancer.
M1: Because men don't talk about it. I've only talked to women about it, but there's a limit to what you can talk to women about. You can't go into the nitty gritties. I can't understand why people, like myself, men, in particular, can't talk about their problems with bowel cancer. Now, me, I can't shut up about it!
JW: We'll chat to comedian, Omid Djalili, about his experience of his mother's illness and we'll explore what effect cancer can have on your family life and your relationships.
Graham: I won't be the kingpin in bed, if you like, like I want to be, but you have to accept things and it's not the be-all and end-all, to be honest. It was for me, but I will overcome it and I will get there. The main thing is I'm alive and I've got an understanding partner and, 99% of the time, I'm quite happy {laughs}.
JW: We'll hear more from Graham later on in this podcast.
This year, Maggie's commissioned some research on Men and Cancer and we found out that nearly two-thirds of men say they would have coped better with their cancer treatment if they'd have had more support, and nearly half of those asked said they felt just like a number when they were diagnosed.
Hugh is a Maggie's Centre visitor. Hugh, thanks very much for joining us today. So, you've been diagnosed with prostate cancer. How did you actually find out?
Hugh: Well, I had back pain for months and months and, eventually, my GP suggested a PSA test which, 10 years previously, he'd sort of put me off doing because it's such an inaccurate thing. So, anyway, I went through with it this time and it turned out that I've got stage III and rather a high, well a pretty high-end Gleason score which makes it... It's inoperable and it's quite serious. But I've had fantastic treatment ever since and I'm enjoying life almost more than I had been.
JW: Did you put up with the back pain for a long time before you went to see a doctor?
Hugh: Probably longer than I should’ve. A few months, but they did X-rays and they put it down to rheumatism, initially, for quite a few months. So, it was bit, you know, having exhausted everything else, they thought, "Well, we'll check for prostate".
JW: Frank is here at the kitchen table as well. What's your story Frank?
Frank: I have what is called an oligodendroglioma grade III, which is a type of brain tumour. I, again, a bit like you, it was a missed opportunities diagnosis. Initially, I was getting a funny metal taste in my mouth, and pins and needles in my left hand. I kind of didn't think much of it. It didn't go away so I went to a drop-in centre and they asked me what I did. I worked in the City at the time so high stress, a lot of travel. So, basically she said, "Well, if you really want to, I'll refer you to a neurologist, making me feel like a time-waster. So I ignored it and it carried on. So I changed GPs and my GP went, "That's epilepsy" (with the funny metal taste being the tell and the pins and needles being a minor seizure) and so she referred me to a neurologist who – we’d taken the kids to the Euro Disney that weekend – so, Sunday night, sitting outside Pirates of the Caribbean having had the kids in, got a call on my mobile from my neurologist saying, "I need to see you first thing Monday morning." Never going to be a good call.
JW: We're going to talk more about the effect that being diagnosed with cancer, the effect that it has on your working life, a little bit later on.
With us at the table here in the Maggie's Centre is Alison Faulkner who's a clinical oncologist at Charing Cross Hospital. Alison, welcome to the podcast!
What are the cancers that affect men?
AF: Thank you. Well, the obvious ones are the ones that affect men and not women, because of men's anatomy, I suppose. So you've got prostate cancer, testicular cancer and cancer of the penis, but, if we look at numbers of cancers which affect men, about a quarter of the cancers diagnosed in men are prostate cancer. The next commonest one is lung and a very close third is bowel cancer, compared with women where, similarly, you'd look at breast cancer, lung cancer and then bowel cancer.
Testicular cancer, as I say, small numbers but big impact because this is often young men and you're looking on survivorship... they're often diagnosed in their teens, early 20s and so there's a long time to go afterwards. Prostate cancer, because fortunately we cure a lot of cancers, we're left with a lot of legacy, a lot of problems afterwards, and part of what we're discussing today is the impact on people.
JW: Why do you think men are more reluctant to get their symptoms checked out compared with women?
AF: I'm not sure. I think there's a little bit of, as we've heard from Frank, a little bit of uncertainty about, "Will I be taken seriously? Am I wasting people's time? Will I feel a bit stupid?" And, certainly, if you look at studies and interviews which have been done on people diagnosed with cancer, people are quite happy to go to doctors with lumps and bleeding, but they're less happy to go with symptoms that they may not understand. So, change in the way your bowels work, change in the way you pass urine, change in your voice, a cough – all of those things can be signs of cancer but probably aren't, and the problem is, for the person concerned, that they're a bit worried about being accused of time-wasting.
But it's all about being aware and I think, among doctors as much as among the general public, the, "is this cancer?" question is terribly important, and I think my colleagues who see patients in what we call "primary care", so the first doctor to see a patient with the problem, would probably be more aware now than they used to be.
JW: Are there any groups of men who are more at risk than others?
AF: For certain cancers, if you look... one of my big interests is prostate cancer and men from the black community are at twice the risk of prostate cancer compared to men from the white community and there may be a little bit less willingness to seek diagnosis. The information is quite unclear.
JW: That's a staggering fact what you've just said and I would imagine it's not that widely known.
AF: Well, it's widely known among the health professions and, certainly, if you go onto all the charity websites – preparing for this, I've gone and had a good look and, on every single prostate cancer website, there is a statement of the increased risk in the black population, and I think there's maybe a little bit of reluctance to say that out loud because of worries about political correctness. But it's a bit like, "I get sunburn and somebody else doesn't" – it's just a risk that comes with who you are and how you are.
JW: If somebody in your family has cancer, does that mean that you, as a family member, are going to be more at risk?
AF: It depends on the cancer and it depends on the age of the person in your family when they're diagnosed. So, in general, if somebody in your family is diagnosed with, say, bowel cancer or prostate cancer or breast cancer at a young age, so, say under 50, your risk would be increased and, also, if more relatives are affected, then there's more risk.
JW: Also with us today is Matthew Dicks who's a clinical psychologist with Maggie's in Cheltenham. Matthew, welcome. So, this whole subject about men being reluctant to seek help, is it true?
MD: It is true. I think the facts speak for themselves but it must go back a long, long way, really. Men are reluctant to be seen to be weak and it’s not a very macho thing to go and get help from people. They're always reluctant to talk about themselves, their feelings and I think, from experience, we know that to be true, but then, at Maggie's, we try to do everything that we can to break down these barriers and make it easier for men to come in through the door to engage with help and to talk to us.
JW: What do you get out of coming to the Centre, Frank?
Frank: A community. People to talk to, share war stories, tips, how to get through stuff, and a very supportive and interesting place. You can just come in and read the paper. On a bad day, I'll just come in and sit and read the paper and do the crossword and have a cup of tea.
JW: So, thank you very much. I'm pleased to say that all our guests are staying with us throughout this podcast and, if you'd like to join the discussion, just use the hashtag morethanmedicine. {Music}
The other aspect of discovering that you have cancer is that you've got to break the news to the people you love. 70% of men undergoing cancer treatment said they were worried about how their friends and family were coping.
Roger goes to a Maggie's Men's Group in London and, when he was diagnosed with advanced prostate cancer, he wanted to tell his daughters more about him and his life. So he did, in a series of emails.
{Piano music in the background}
Roger: The idea of writing down things for my daughters came out of clear blue sky. I hadn't really thought about doing it and I, literally, just started writing one day about the village where I grew up. I wrote about 8 pages and then I sent those off to my daughters by email just to see if they were interesting for them.
Lar: {reading email} Hey Dad, thanks very much for doing this. It's very interesting indeed and I really enjoyed reading it. Perhaps you could add some memories of school into the summary or, better still, write a whole series of chapters and put together a type of memoir. Love Lar xxx
Roger: I don't think it's a cathartic process. I think it's more a sharing process. It's not really legacy. It's actually exploratory because the reactions I get from my daughters are as fascinating for me, probably more fascinating than my thoughts are for them.
Lar: It's not usual that my Dad is that honest and open with me. Going... throughout our life, we've always had a good relationship but he is, perhaps, a very typical man in the sense that he doesn't like to talk about his feelings and his emotions. I was quite surprised when he talked to me about his university years because he talked about a time when he really struggled emotionally and almost talked a bit about a sort of breakdown that he had when he was at university, which I'd never known anything about.
Roger: {reading email} Year 2 melted into Year 3 and it was at this time I lost it big time. Looking back, it may have been a sort of breakdown. The impact of my mental state was that I froze at the start of the new academic year. I just didn't get out of bed. I slept or dozed through mornings and afternoons. I would move about the campus trying to avoid tutors. Rather pathetic, looking back. Sadly, I needed help and help came there none. I am sure that chums and, certainly Di, were worried about me but, in this rut, only the sides of the rut were visible. But it didn't stop Di's ardour. This remained undiminished.
Roger: I don't think I could write it so convincingly for somebody else. Writing it for my daughters is a fatherly thing and it's a loving thing and it's a sharing thing. So that's really quite important for me. I don't think I could write quite the same way if I was writing it for a friend.
Lar: {reading email} Hi Dad, I, like Egg, really enjoyed reading the latest musings. It's so interesting learning about parts of your life that we didn't previously know about. Please do continue writing as we're loving reading them and I'm sure many others would, too. An obvious next step in the musings would be your wedding to Mum and then your experiences of fatherhood. That would be interesting to read. Lots of love, Lar xxx
Roger: {reading email} So, the wedding of the year, 1981. What do I remember? In retrospect, I guess there were a thousand questions that I should have asked myself, and your Mum, before committing to marriage. I didn't.
Lar: He's definitely shown his more vulnerable side since being ill and he's told my sister and I about a whole host of things that we probably would have never known about otherwise, in particular, his divorce with my mother. She had always been very vocal with us and talked to us quite a lot about it, whereas, I think, partly because the way it had worked out, he'd moved out of the house, we never really got his perspective on things and got to hear how it had affected him. And, obviously, it had done, but I suppose we were quite a bit younger at the time and we didn't really appreciate the impact that it was having on him. He has expressed sadness about what happened with the relationship with my mother which is just, obviously, a sad thing to hear about as the daughter of a failed marriage, as it were, and certainly sort of perspectives of where he could have done things differently and has sort of regrets. And, obviously, people have regrets and that's part of life but it's sometimes sad to think that he could've, potentially, made things turn out differently if he'd acted in a different way.