“They share their most intimate problems without feeling judged.”
Martin wanted a way to share his experience and look after his mental health after prostate cancer treatment, so he set up is own support group.
Martin was diagnosed with prostate cancer in 2007. To help deal with the side effects of treatment and look after his mental wellbeing he wanted a way to share his experience with other like-minded men.
“For me the hard part of going through prostate cancer was after the medical side of my treatment was taken care of, because I knew I’d be dealing with the side effects for a lifetime and looking after my mental wellbeing would be a challenge.
So with the help of my urology nurse and others affected by prostate cancer, we put the word around to recruit members and started up the East Lancs Prostate Cancer Group.
I wanted somewhere to share my experiences with like-minded men, and I knew starting a local support group would help me and other men with prostate cancer.
I later went on to help form the Out with Prostate Cancer Support Group based in Manchester, for gay and bisexual men and trans women. I’d realised there was a gap in support for members of the LGBT+ community with prostate cancer.
Starting Out With Prostate Cancer meant members could talk freely about sexual function and other difficult topics with people in a similar situation. Both groups have since gone from strength to strength.
I’ve now been facilitating Out with Prostate Cancer for over six years and we have a core group of 12-15 people who meet each month, plus some people bring their partners along. But we’re also reaching people further afield through social media and we even have people Skype in from Europe and the USA.
We use a private Facebook group for members to chat and support each other in between meetings. Using Facebook works really well. It’s like a noticeboard for sharing what happened at the last meeting, what’s coming up and people can comment and give feedback.
The question you might be most fearful to ask is most probably the question everyone else is wanting to know the answer to
My advice for others thinking of setting up a group would be to remain focused on the initial purpose and to be conscious of the aims you’re working towards. You’ll need to be flexible and sensitive to the group’s needs and recognise when people might need additional support that you can’t offer. For example, we often put newly diagnosed men in touch with the Prostate Cancer UK Specialist Nurses if they need clinical advice.
As Chair, it’s good to be aware that others might want to help in the running of the group and share the organising of meetings. If they don’t, don’t take on too much and make it a burden, it’s important that you get something out of it too!
To those considering joining a support group, I’d say go for it. The question you might be most fearful to ask is most probably the question everyone else is wanting to know the answer to. And for a newbie, what can seem like depressing new information can be important in the long term when they have to make tough decisions about treatment.
I find it so rewarding when someone says how they were welcomed into the group so quickly and lovingly and felt they could share their most intimate problems without feeling judged"
There are hundreds of support groups across the UK. You can search our online database to find your nearest group, and if you can't find one within easy distance, you might want to consider starting one yourself, like Martin did. If you'd prefer to do things from home or on the go, you can check out our online community.