I always get a bit anxious when I see that someone’s commented on a blog I’ve written – a bit like that feeling when you see a police car. Or is that just me? But a comment on my last blog, Life after prostate cancer – It’s more than just surviving prostate cancer entitled No, not all men with prostate cancer are straight and no, my wife won’t be picking me up after treatment was something I wasn’t expecting. But it made me think about the impact language can have on the reader, both positively and negatively.
The blog, by Jim Peters, is great – I encourage everyone to read it. Jim had picked up on a line where I’d mentioned how wives had played a key part in the success of a prostate cancer support programme. I hadn’t meant to be exclusive, it was just the case that all the men in taking part in this programme mentioned wives. But it did make me think. Jim made some really incisive points about the danger of assumptions, level of care and services for gay and bisexual men and inclusive language that made me want to learn more. So we arranged to have a chat.
Jim was diagnosed with prostate cancer at the end of 2013, aged 58.
“You think you’re ready and you’re geared up,” he told me. “But in my heart of hearts I thought it was prostate cancer. I had classic symptoms but I was just hoping it wouldn’t be. When I was told, I switched off. Was it five seconds, five minutes? I don’t know. I realised I hadn’t heard a word after they said cancer.”
“If you read about side effects, there’s no consideration for gay men”
Up to and after his diagnosis, Jim had noticed a real lack of information and support for gay and bisexual men dealing with prostate cancer.
“I wanted to find information related to me. I couldn’t find anything. We have family we can turn to but it’s tough to talk to them about personal, intimate stuff. I rang the Prostate Cancer UK Specialist Nurses and they were extremely helpful and I also asked about One-to-one support and speaking to another gay man, well that got me through Christmas. But after that there was nothing to fall back on for constant support.”
He realised that it was the more personal, intimate information which he couldn’t find.
“If you read about sexual side effects, there’s no consideration for gay men. Everything is geared up for vaginal intercourse. After my biopsy, I asked when could I have sex again. They said within 10 days. Well, what about anal sex, are you sure that’s the same?”
I asked him whether telling the medical team about your sexuality is a must.
“It’s an individual decision. I’ve come from a generation when homosexuality was illegal when I was young, so opening up and coming out to your consultant is hard. I didn’t feel comfortable about it…I mean I’ve just got cancer, that’s all you can think about. But the medical team can help you better if you tell them, gear up a treatment plan. I’m glad I did.”
Creating an environment which ‘feels comfortable and inclusive’
Speaking to Jim, it amazed me that, just over a year ago, there were no support groups which specifically catered for gay and bisexual men living with prostate cancer. In 2014, we now have three – Metro Walnut in London and Out with Prostate Cancer in the Midlands and Manchester. It’s slow progress but progress nonetheless and we’ve supported the creation and development of these groups.
I was invited to the Metro Walnut group’s April meeting and spoke with Simon Faulkner, the group’s facilitator, who was instrumental in setting up the group.
“When Out with Prostate Cancer started up, it really made me think, ‘why don’t we have anything in London?’” Simon recalled. “So we approached Prostate Cancer UK and one thing led to another. We’ve only had three monthly meetings so far but it’s been fantastic. You can feel isolated living with prostate cancer as a gay or bisexual man and need to chat about things in an environment which feels comfortable and inclusive. We’ve had guys come from as far as Bournemouth and Sussex to share their stories and support one another.”
For Jim, attending the support group didn’t just help him, but helped his partner too.
“He’s been there every step of the way, I couldn’t have done it without him, but he can be reluctant to talk. When we went to the group and introduced ourselves he spoke for about 20 minutes about how it affected him and what he’s gone through. Hearing that and speaking to others, it really helps. You gain so much new information about treatment, side effects and you can talk about intimate issues seriously. I found out more about living with prostate cancer here than in anything I’d read.”
Experiencing the support group first-hand enabled me see the camaraderie, humour and trust shared amongst everyone attending. What I also saw there was a real momentum in meeting the needs for gay and bisexual men, from targeted information to support groups. And that will continue to grow.
Ultimately over the past month I was privileged to meet some really inspiring people and learn some very important lessons. But the most important thing I’ve learnt? I’ll leave that to Jim.
“Never assume a guy is straight. Find out about me as a person but don’t assume I’m this or that. Wherever I go and whatever I read I just want feel like I’m welcome.”
Whether you’re straight, gay, bisexual or transgender and you’re affected by prostate cancer, you aren’t alone and support is out there. Whether that’s through a friend, support groups, or speaking to our Specialist Nurses over the phone, remember what the late Bob Hoskins famously used to say, “it’s good to talk”.