Having grown up being silenced and marginalised as a gay man, Martin Wells was floored by another societal taboo in later life after being diagnosed with prostate cancer. He tells us how he was driven to find support and why he's delighted by our new online support group for men like him.
I’m a 63-year-old gay guy on the autistic spectrum. I experience the world in a way that is different to many people. For me, it means I ask questions others seem not to ask.
I was born in 1954 into a working-class family. I found growing up traumatic, as anything involving sex, emotions and expressing feelings in my family was definitely taboo. I found my journey through puberty extremely painful: I was so fearful of exploring my sexuality not just with others, but with myself. In the 1950s and 60s, homosexual acts in private between two men was illegal and then partially decriminalised in 1967.
I eventually ‘came out’ when I was 27-years-old, just as the HIV/AIDS epidemic was taking hold around the world. In the early 1980s, I was about to buy my first property. But to secure a mortgage I had to have life insurance. If I told my GP I was gay, society said I was too promiscuous and would die with AIDS, so securing life insurance was almost impossible. So I wasn't totally free about sharing my sexuality with health professionals.
However, in 1990 I discovered a personal growth workshop that – over the next few years – helped me grow out of what I could see was my dysfunctional learned behaviour about my sexuality, autism and fear of expressing my emotions. My first and second boyfriend died with AIDS and I’m HIV negative. The workshops helped me deal with my losses and express what was going on for me, emotionally and intellectually.
I’ve been living with prostate cancer for nearly 10 years now. I was diagnosed in December 2007, resulting in having a prostatectomy in February 2008, then five weeks of radiotherapy coupled with 30 months of chemical castration.
Prostate cancer is one of those taboo cancers – a cancer that lies in the area between a man’s navel and his knees. It's an area where men fear to tread and don’t talk about, unless it’s about bragging. So I’ve found being a man gets in the way of discussing the side effects of having and living with prostate cancer.
A few weeks after the surgical removal of my prostate, seminal vesicles and some lymph nodes, I started to experiment with trying to masturbate. I was told I’d be able to have orgasms but no ejaculation – and that's what happened but I didn’t rip my stitches.
I was thrilled, so I immediately texted my urology cancer nurse with the good news: “Lorraine – I’ve just had my first wank!” Her reply floored me: “Martin, that’s great news but no one has ever sent me a text like that before”.
What floored me was that no one had ever shared a story like that before! If I had my leg amputated and had just run my first marathon, there’d be celebration; if I had throat cancer and had spoken my first words there’d be a similar reaction. But no. Because my cancer was somewhere in between my navel and my knees and involved things sexual, this was a no-go area.
All through my life, I had a mantra talking to me in the back of my mind when something didn’t feel right: “this isn’t right.” This isn’t right about me feeling bad expressing how I feel, this isn’t right about me feeling shame about being gay, this isn’t right about health professionals not helping me with how I’m feeling now I’ve no testosterone (being chemically castrated), this isn’t right about men not talking about how they feel about not being able to ejaculate.
That’s when, with the help of my urology nurses, I started The East Lancashire Prostate Cancer Support Group. But after a couple of years, I still felt my own very personal needs as a gay man weren’t being met. I was having to explain what it’s like to be a gay man. I didn’t want to have to explain myself and my lifestyle choices to other people. I wanted to be a part of a group that talked freely about my stuff.
That’s when I decided to help bring about a new support group: Out with Prostate Cancer. So with the resources of The LGBT Foundation, a gay radiologist, Macmillan and Prostate Cancer UK, the first UK support group for gay and bisexual men and transwomen was born, where anything is up for discussion. We started in Manchester nearly five years ago –Manchester is a city that welcomes diversity. We now have groups in Birmingham and London.
I now feel that more and more of my needs are being met, but this has only come about as a result of me getting out there and knocking on doors, 'pushing the envelope' and demanding answers and resources. So I'm glad to hear that Prostate Cancer UK has now set up an online support group for gay and bisexual men and MSM (men who have sex with men).
I took part in the first session, which was a great success. Everyone who participated got involved with the conversation and were happy to share their experiences of prostate cancer. I understand the importance of talking to other men, so I would encourage any gay, bisexual or MSM who need extra support or have any concerns about prostate cancer to sign up and share how they feel.
We still have a long way to go but I feel that we are making steps in the right direction. I want men who are similar to myself and have gone through what I have to understand that there are resources out there for them.
Prostate Cancer UK has partnered up with Opening Doors London to trial a monthly online discussion group for gay and bisexual men and MSM affected by prostate cancer. To join the next online meeting on 20 December at 7pm, please register. We're also planning to trial more meetings for other groups, such as men on active surveillance and partners of men with prostate cancer.