Notes from OWPC meeting April 2014

We are One Our first birthday was time to check in with one another and reflect on what we have achieved and what we want to achieve personally and for all gay and bisexual men affected by Prostate health, cancer and other related issues.

To help put our group in a national perspective we were joined by Simon who is leading on London’s group for gay and bisexual men and Donald in Dublin who is currently looking for support and information as he feels there is nothing available for him in Ireland. Both joined in via Skype and we were delighted to see Barney Simon’s dog offer his approval too!

Andy was also with us who is from the Birmingham group, also present was Doug a regular contributor and prolific blogger on this site and Jack who has been filming the group for the last ten months was on hand to capture everything we said and Martin was joined by Sean and Andrew to make sure everyone had birthday cake and non-alcoholic fizz to celebrate the group’s first year.

It was an extra special birthday treat to have Dawn Doran with us who has been so busy over the last few years researching the needs of gay and bisexual men affected by prostate cancer. She is now in the final stages of writing up her report but more on that later.

To kick off Martin asked each member of the group what they wanted to get out of today’s meeting.

For himself Martin wanted to share the trials and tribulations of managing expectations when as a gay man after prostate cancer treatment you constantly need to make arrangements to meet a sexual partner, which practically requires a prior rehearsal schedule of various weights and pulleys to get everything in working order and to make sure your body can ‘perform’ and not let down either the partner or the sexual need within. Now all very well after you’ve prepared your equipment and your missile is ready to launch when requested, only to be let down by an unreliable liaison. Something familiar to many of us as gay men but when you’ve gone to so much effort to get everything prepared not only is there no outlet for your carefully prepared and much anticipated sexual outlet but you are left feeling disappointed, let down, angry and deeply unfulfilled.

Andy related to Martin’s feelings very much as he mentioned a bisexual friend of his who was recently discussing similar disappointments and he mentioned that it was important not to let the sexual side of things dominate your thoughts or the feeling of closeness when you are intimate with another man.

Something he had learned from Martin almost a year ago. Of course the worry about lack of sex drive, lack of sexual opportunity is constant with men before, during and after treatment but the need to be desired and express sensuality is always there, even if it is suppressed by the dominant forces of the sexual equipment will it work, will it let me down, will I feel anything etc.

Doug added that sex is still important to him and he has decided to go through the implant procedure as he will have the option of having an erection on demand and hopefully the psychological aspect won’t get in the way. He added that he really enjoyed talking to other men and wanted to offer help and support to others but he wondered if anyone actually read his posts on the Out with Prostate Cancer

website. It is important to him to use the group online and in person as a communication outlet as he continues to be affected by erectile dysfunction.

Donald needed to discuss issues related to hormone therapy and radiotherapy as it is all a bit new and scary to him. He contacted the group as there is nothing like it in Ireland and for gay men there really isn’t a lot of options. His hormone therapy has killed off any sexual desire and he doesn’t feel the same person as he did just a few months ago. Feelings of guilt towards his partner were on his mind and noticeable body changes to his skin, his hair and smell were all things he had noticed had changed since starting treatments.

Martin added that even psychosexual counsellors would not have had experience of the needs of men who have sex with men and reminded everyone that we all have to be prepared to be on a journey with many changes and emotions that we might not have experienced before or know how to deal with.

Doug added that it was important to be upfront with your oncologist and radiologist to ask about the side effects of treatment.

Apart from the Cancer charities, it is important to see if gay charities can be of use to offer a friendly ear but Donald asked if a buddying system could be put in place to help those men who hadn’t got the option of talking to either.

Andy agreed that having someone to talk to that is appropriate to you as a gay/bi man affected by prostate cancer was hugely important and Martin said he would be able to offer support in this area.

Doug chipped in with a recent experience of his and asked if anyone had actually had an orgasm but instead of ejaculate, urine was the end result of the climax. Sean acknowledged that this was a known condition and many of us learned a new word that this condition was called ‘climacturia’ and you can read all about it here folks! http://sexuality.about.com/od/glossary/g/Climacturia.htm Talking about all of our issues it felt like a good time for Dawn to bring us up to date with her three year PhD research project. Responding to the offers of help from so many men to discuss what life was like as a gay or bi man dealing with prostate cancer she had to draw the line at twelve men as she couldn’t handle any more! (Sorry for how that sounded Dawn).

The important thing about Dawn’s research is that not only has she got to know the real deep issues affecting the men she’s interviewed she has also had to explain to health professionals why she is focusing her research on gay and bisexual men with prostate cancer. When she explains her findings to health professionals they are soon stopped in their tracks when it ‘dawns’ on them that the issues that these men need help and support with have been completely missed by them and support organisations. The resulting publication of her research will probably be more in book than journal form as she wants to make sure that her findings are accessible to men themselves and not just academics.

Dawn’s contact with the group and some of our member has been extremely useful as she can see from an objective point of view the need for support groups like Out with Prostate Cancer and also see some of the common themes that all men seem to be identifying. They are yearning for some kind of

community and peer support in having to come to terms with a new identity and the violation of that identity as a gay or bi man, as well as the assault that their bodies have been through during treatment.

Dawn is able to convey to health professionals what our guys have been saying all along, that there is a distinct gap between the needs of the men themselves and what help and support health professionals are aware of and equipped to give.

Simon felt that it was important for him to connect with the group again as this is where it had all started a year ago. The Metro Walnut, based in London, is now up to their third meeting and is going form strength to strength. Simon is currently waiting for updates on his own personal progress but added that the most important thing men need is the offer of support on initial diagnosis, but of course this is not always done in an appropriate way.

Andy updated that the Birmingham group was also doing well and is held at Birmingham’s LGBT Health and Wellbeing Centre on the 2nd Saturday of the month (2-4pm). They have also taken on the name of Out with Prostate Cancer so we now have two groups, one in Manchester and the other in Birmingham.

Andy wanted to share that after the initial progress with his sexual function following his prostatectomy, for the last few months he hasn’t even felt like having sex and he wondered if he was becoming clinically depressed. Martin identified with this and suggested that self-esteem is such a big issue that counselling and well-being support must not be underestimated and must be sought out for guys who are feeling low, not just for their health but for of their sexual wellbeing also.

Confiding personally in someone you trust and having relevant resources for gay and bisexual men are something that all in the group agreed were hugely beneficial to moving forward personally and for all.

Sean wanted to let everyone know that the Out with Prostate Cancer Facebook page and Twitter account is going form strength to strength. The group is busy on social media every day to make sure that the voices and concerns of gay and bi men are heard. Sean also shared that he recently delivered a talk to staff at the Manchester Royal Infirmary and that Out with Prostate Cancer were informing work that is happening with Macmillan, Prostate Cancer UK and The Christie cancer centre in Manchester to offer targeted support and information to gay and bisexual men.

So what have we achieved one year on…    

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A network of support across the UK Links with major charities such as Prostate Cancer UK, Macmillan, The Metro Centre, Birmingham LGBT Health and Wellbeing Centre and The Christie Great contacts with major research into the needs of gay and bisexual men affected by Prostate Cancer A network of proactive and empowered men who are all in their own communities talking to health professionals and supporting other men to ensure that our community is not neglected or invisible.

A new guide to Male Cancers that will be published by the Lesbian and Gay Foundation and Manchester NHS in the summer.

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Case studies and speakers to go to meetings and events to help organisations realise that gay and bisexual men need specific information and support and that we are here to help make sure they are capable of communicating to all men to help them deal with the issues that affect them.

It’s been a busy year but we want to thank everyone who has contacted us or has come to any of our meetings as you guys are the ones that are making such a massive difference to the lives of gay and bisexual men affected by prostate cancer across the country and believe us when we say…We have only just begun!

Happy 1st Birthday to Out with Prostate Cancer.