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Shaping Prostate Cancer Literacy

A conversation with Martin Wells

Martin Wells, a campaigner, fundraiser and support group leader from Lancashire, joins OnFocus to discuss what it’s like going through prostate cancer diagnosis and treatment as a gay man. He set up two support groups to help men and their partners address these challenges  – Out with Prostate Cancer and Shaping Prostate Cancer Literacy.

Out with Prostate Cancer https://outwithprostatecancer.org.uk/

Shaping Prostate Cancer Literacy https://www.youtube.com/channel/UCjNP3x0ebbh7hbzHcEwudbg

 

Clare Delmar

Hello and welcome to On Focus, brought to you by the Focal Therapy Clinic, where we address issues facing men diagnosed with prostate cancer that are little known, less understood, often avoided and too often ignored. Prostate cancer is the most commonly diagnosed cancer amongst men in the UK. And with this somber fact comes a multitude of challenges and opportunities. I’m Clare Delmar. Joining me today is Martin Wells, who, following treatment for prostate cancer at the age of 53, has been a force of nature in supporting other men in their experiences with prostate cancer. He says, 14 years ago, when I was diagnosed with prostate cancer, I quickly learned that being a man gets in the way of being a man with prostate cancer. There were no support groups in East Lancashire for men and their partners with prostate cancer so together with my urology nurse, we started a support group in East Lancashire, and even now, it’s still going really, really well. What I also found was as a gay man, my needs weren’t being met. And then I started two years after that with another guy, another support group called Out with Prostate Cancer. And leading on from that, I started a third group because I found we often don’t have the language to talk about prostate cancer. So I started a group called Shaping Prostate Cancer Literacy to allow men to explore the language and literacy we need not only to talk to ourselves about prostate cancer, but to talk to other people and to help other people talk to us about our prostate cancer journey. Martin, thank you so much for joining me today. I’m so excited to talk to you about all the wonderful work you’re doing.

Martin Wells

Thank you, Clare. Blimey, that’s a very busy kind of CV you’ve read out there, so thank you.

Clare Delmar

Well, I just got it from a wonderful newspaper article that was telling the world all about what you’re doing. And I think it was also in the context of some fundraising you did as well. So, again, maybe we can talk a little bit about what’s motivated you to do all that, but it’s really wonderful to have you here today. Thank you.

Martin Wells

Thank you. Fire away.

Clare Delmar

One of the things I really would like to start off with is to ask you very directly that as a man who happens to be gay, do you think that the language and the education and the behaviours around prostate cancer are focused on men who are heterosexual and that potentially it effectively excludes men who are gay?

Martin Wells

It’s a really interesting question, and I’ve thought about that a lot over the 14 years since I was diagnosed. And I think you mentioned it at the beginning. I’ve come to see a phrase which I find very powerful, and that is being a man gets in the way of being a man with prostate cancer. And I think I can slip in other words, being a gay man gets in the way of being a gay man with prostate cancer or being a man who’s got some psychosexual problems, whether I’m straight or not, get in the way, etc, etc, et cetera. So what I’ve seen is I don’t think as a human being, I know how to be seen out there, and it’s easy for me to slip into the labels bit. I’m a gay man, therefore, I’m kind of, like, been in a minority, and you need to look at me. It’s like I’m a man. I haven’t got a clue how to communicate where I’m at.

Clare Delmar

So do you think that there’s a lack of understanding about what it is to be gay and the psychosexual damage of having prostate cancer? Do you think this is felt more deeply within the gay community than elsewhere?

Martin Wells

Well, isn’t that interesting? I don’t feel qualified enough to talk on behalf of the gay community.

Clare Delmar

Right. Okay.

Martin Wells

For me, I feel as though I’m a man and I happen to be gay, whatever that means. I’ve never called myself a gay man. Okay I might have slipped that in because it’s easier in the conversation, but I’m a man and I happen to be gay. And what I’ve seen is on these Mardi Gras episodes in the summertime where there are certain men, gay men, bisexual men, whatever out there parading themselves in a particular probably a very sexualised way. It’s like, well, that’s not me. And that’s the kind of thing the general public sees. And it’s like a John Inman Larry Grayson all that kind of stereotyping. And it’s like, I don’t think of sex 100% of the time. I’m not running around in very brief leather thongs, or mincing. My impression is people out there think what being a gay man is all about is sex and being outrageous. And it’s like, no, I’m just like anybody else.

Clare Delmar

Okay. But I think in a previous conversation, we spoke a bit about how even some of the psychosexual aspects to having prostate cancer, being treated for prostate cancer and certainly recovering from it, you think perhaps may exclude non heterosexual men. Is that fair, or do you want to expand on that?

Martin Wells

Yeah, I think that’s fair. I know 14 years ago the reason why I kind of got on a bit of a soapbox for starting the support groups, particularly the second one out with prostate cancer. That was because almost all the literature then and things have moved on because of what we did. It was bring your wife. It wasn’t bring your partner. Would your wife like to come along, a) assuming someone was married, whether they’re straight or whatever? I mean, there are single people who are straight, whatever that means, who’ve got prostate cancer. So for me, it was like, can you please change your literature a little bit? And what about trans women? How does a logo which represents a man who’s got prostate cancer, gay or straight, represent a trans woman who might have prostate cancer. Now there’s a predicament for a graphic artist.

Clare Delmar

Indeed. Yeah, very much so. Your focus on the literature and literacy, I think, is in the name of your title of your other group. Can you talk a little bit more about that and even more generally about the disease itself? And one of the things I’m particularly interested in is the sort of carrots or sticks approaches to prevention and to getting yourself checked, because often we see that many promotion campaigns around prostate cancer are around sort of the “or else” message, as opposed to do this because your quality of life could be preserved, which, of course, leads itself to the conversations around new treatments. What do you think about that and about the messaging and the literacy that you saw 14 years ago and what you see now?

Martin Wells

I think there’s a fundamental thing which has been overlooked here. And I go back to that phrase, being a man gets in the way of being a man with prostate cancer. Intellectually, I know, and I think most people know they ought to talk holistically better with a better quality, whatever that means, with their health professional. But there’s something in a man’s DNA which prevents them from doing that, and that hasn’t been tackled. And also not only a patient or a person who’s got prostate cancer. What about health professionals? That’s assuming a health professional knows perfectly how to handle somebody who doesn’t know how to talk about this thing, which I think is a sexual cancer, like penile cancer, testicular cancer. That kind of cancer is one of those taboo subjects, vulva cancer in women and better not mention the word vulva or penis or testicles. That’s definitely a no go area. So everyone’s kind of scared of exploring that. And because of that, nobody has got a literacy, a language, a lexicon on how to talk about it.

Clare Delmar

Do you think that it’s a combination of the messaging itself or also the medium? So, for example, the fact that we have so many more media to get these messages out, whether it’s the traditional Facebook groups or YouTube videos, but now we have things like TikTok. We have so many other ways of messaging to people. Do you think that that’s something that we all ought to be focusing on a little bit more and to improve this literacy so that men can engage with their partners and they can also engage in relationships with their own health care providers?

Martin Wells

You see my biggest competitor, or if I’m running a support group, the biggest competitor is McDonald’s, is Amazon, is Currys. They have departments and whole teams of people working on marketing strategies, cartooning, copywriting on how to get a message across within five to 10 seconds max. And that might have cost hundreds of thousands of pounds. And there’s poor old me with a computer and some imagination, but I haven’t got the crafting skills to put something across, what looks effortless but has taken many man person hours to actually hone. Now, that’s what’s missing. So if somebody says, oh, why don’t you read this pamphlet of 70 pages that will help you get to grips with it? It’s like, well, McDonald’s don’t do that. They know how to get me in the store to get the money out of my pocket. And I’m not saying it’s about money. What I’m saying is it’s like, well, how does somebody obviously we’re in an audio podcast here. But when I was having chemotherapy before I had it, the health professional was saying, you’ll probably get quite fatigued, actually, Martin, at some point. And it’s like, oh, yes, I’ll get a bit tired. And he said, no, fatigue and tiredness are not the same. Well, in my innocence, I thought they were. When fatigue hit me, I knew it wasn’t being tired. So when people were talking to me, I had to find a way of communicating. Now I’ve got in front of me a little toy I remember from being a kid, and it’s a little giraffe, and it’s got lots of little beads in it. And when I press the button underneath it relaxes the little cotton threads in it, and this little giraffe collapses instantly. So when I say now to people, this is what fatigue looks like, this little giraffe collapses immediately and they go, oh, yeah, right, I get it. Where are the people who are doing this kind of communication, using little assets like that to get the message across?

Clare Delmar

Have you seen any examples of where it’s being done well or where it’s showing travel in the right direction?

Martin Wells

I have on my table because I’ll just knock it on the… I’ve got in front of me a plastic Coke bottle and I’ve taken the label off and I’ve printed three replacement labels. And on it, one label says Libido Classic and another label says Libido Lite. And the third label says Libido Zero. And it took me a long time to think of this because at the moment, the treatment I’m on, I’ve got no libido. Now. I didn’t know what that was like when I had a libido. Now I know what it’s like now when I’m describing things to people, I’m saying, which Coke bottle are you picking up? Are you picking up the Libido Classic where you are fully sexualised, or have you still got some libido, or are you totally lacking libido? Now? That kind of thing to me is really easy to pick up, but it takes a lot of effort to get to that point.

Clare Delmar

And also, I guess you’ve spoken to so many men over the years with your groups that you sort of know how they might respond.

Martin Wells

Definitely. And I see in their eyes, I see in their facial expressions that frustration of I kind of know there’s something I want to communicate with you, but I just can’t put it into words. I think now there’s enough resources out there, enough charities with prostate cancer to support men on their initial journey. But when they get past that reptilian brain of, oh, my God, I’m going to die. And I can’t get that out of my head so I’m not available to any other information. When they get past that stage, I think there’s now a big opportunity for the graphic designers, the cartoonists, the copywriters, to invent ways of communicating what the medical profession communicate in very boring good medical ways.

Clare Delmar

Or even frightening ways sometimes.

Martin Wells

Indeed.

Clare Delmar

I mean, that’s really important stuff. And I think you mentioned charities or the research organisations who are constantly fundraising, as you know, because you’ve done fundraising on their behalf. But resources tend as you would expect to go into research. It would be interesting to sort of see an initiative around better communication and better messaging so that men overall have a better experience while they have to endure prostate cancer.

Martin Wells

Exactly. Another thing I’ve got in front of me and I bought this 14 years ago. In fact, I got three versions of it. I’ll just do a little bit of an audio noise. So, you know, I’ve got it in my hand. It’s a plastic version of the urinary system of a man. And it’s got a penis and it’s got a bladder and it’s got a rectum and a prostate. And I can pull this apart. And I can see if a medical professional inserted their finger up my bottom. I could say that’s why you could feel my prostate. I have never, ever seen this model, and it’s available for medical schools. I’ve never, ever seen this model in any urologist’s office. And I’ve got it. Well, perhaps they have got it, but they’ve hidden it in the drawer. It might be too scary for people.

Clare Delmar

Even in primary care situations. The GP surgery?

Martin Wells

Exactly. Or a chart, I don’t know. But perhaps as a GP, they might have to have 100 charts. The heart, the liver, the kidney, the brain, the ear.

Clare Delmar

Yeah. I mean, you raise a really important point about how men go through this experience and how messaging and different media to do that can really improve their situation and possibly their outcomes eventually.

Martin Wells

And there is an interesting fact there also, Clare, because my older brother has got prostate cancer and his approach to his what I call his journey and my journey. Some people don’t like that word journey, but it connects with me. It’s totally different. Martin, I don’t want to know. I just want him to chop it out, and I want to get on with my life. Now, for me, it’s like, excuse me, but what are you going to chop out? How are you going to chop it out? What’s going to happen when you do chop it out? Now, I want lots of information. My older brother, he doesn’t want lots of information. So I’m not saying what I want is what everybody else wants. I’ve got this little phrase, another little phrase I call it. Is it on the trolley? For instance there should be in front of me a whole raft, a smorgasbord of help and assistance, and I can look at it and go, Can I have a little bit of that, please? Oh, yeah. Can you give me a little bit of that as well? A little bit of training on that and a little bit of info on that. Whereas my older brother would say, Take it away. I just don’t want to have any of it.

Clare Delmar

Yeah. TMI. Yeah. Interesting people are very different than how they seek information, process it, which actually leads me to something else we’ve talked about, which is getting a little bit more sort of, I don’t know, clinical here. But it would seem that the goal of all men would be to have early diagnosis, which would then allow non invasive procedures that would maintain the quality of life and some of the things we’ve just been discussing. And why do you think this doesn’t happen? Why do you think that? It always seems to be sort of an either or.

Martin Wells

Clare, I go back to that phrase. With COVID, this is so important over the last two years, being a man gets in the way of being a man with prostate cancer and with COVID that has assisted that phrase no end, because, Look, I don’t need to go to the doctor. They’re too busy with COVID. A lot of men can find an excuse not to go to their GP to get tested. And when I say tested, there is a bit of controversy about getting tested. What I mean is getting some form of check, if you call it that, digital rectal examination. Just because my PSA is high from a blood test, that doesn’t necessarily mean I got prostate cancer. And necessarily just because it’s normal doesn’t mean I haven’t. But that with other tests is the best we’ve got at the moment. But what I’ve seen is a lot of men get to the doctor because their partner has got a bit pissed off with them saying, blimey, you’re up in the night three times again, get to the GP, get to the doctors. Okay. But look at smoking. Look how long it took with campaigns and money to get people to try and give up smoking. That’s a little white stick people stick in their mouth. So if that’s not so obvious and how difficult that is to change behaviour, I think men have this built in DNA not to be seen to be weak. And going to the doctor is a confession of something wrong with me and I kind of don’t want to know.

Clare Delmar

And so what would be your message then to our listeners about that, about overcoming that or recognising it or doing something about it?

Martin Wells

I would say to someone, be courageous to witness that going on inside yourself and push that to one side, pick up your phone and book your appointment. It’s not an exercise where you have to strip off naked and run through the street and burn £100 and it’s a very difficult, painful procedure. It’s a little bit of blood and it’s a good conversation with a good health professional. That’s what it is .

Clare Delmar

Well, I think on that note, I think we’ll draw this to a close, but you’ve given some very powerful insights and I want to thank you very much for joining me today.

Martin Wells

Thank you, Clare. You can tell I’m energised by this kind of conversation, so thank you.

Clare Delmar

Well, we’ll do it again. I think that there’s a lot more to talk about, but I think you’ve been extremely helpful and certainly the message about everybody’s different and you really just have to go out there and take some control.

Martin Wells

Thanks Clare.

Clare Delmar

Thank you so much. A transcript of this interview and links to more information on Martin and his support groups are available in the programme notes on our website, along with further information on diagnostics and treatment for prostate cancer, as well as additional interviews and stories about living with prostate cancer, please visit www.thefocaltherapyclinic.co.uk and follow us on Twitter and Facebook at The Focal Therapy Clinic. Thanks for listening and from me, Clare Delmar, see you next time.

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