I read this thread for the first time today - it's brilliant and very useful. I really admire the frank talking and kindnesses in the posts and replies. @Lyn: I know you have been thanked many times already - but thanks, and thanks and ever thanks.
This post is to ask for suggestions and advice re my / our situation. It's also partly a response to BobK's nice post as we seem to be in a similarish situation. Here goes ... (deep breath)
It's almost 40 years since our first date and sex has been, up and down [so to speak] over the years. Inexperienced to begin with and with all the normal worries and fumblings. Once we worked out how "what went where" we had an active and happy sex life in our youth. Parenthood was probably the first big change and then various things in life had effects. But generally we have been lucky in having had a fair amount of sex without any insurmountable issues. But we have never stopped until now.
The diagnosis / treatment btw is Stage 4 PCa (T4N0M0, Gleason 9, PSA 141) being treated by RT and HT (so no RP). HT started last June and is ongoing, RT finished in Nov last year, PSA now <0.5.
So, the awareness of the cancer hits last June and at that point sex is off the menu by mutual consent. At the same time HT begins, and the HT - I think it's the HT - has removed the "Phwoar" factor from my brain. The level of advice and support at hospital has been pretty low regarding keeping sex going. This issue has been mentioned by us at consultations / Nurse Specialist meetings but I'm struggling to recall any response other than "use it or lose it". Certainly I'm not aware of what changes the different treatments might and might not be making to my willy / balls / etc. And generally I feel that I might be missing a trick.
We're lucky in that it still works. Libido might not be there but I can get an erection: very occasional nocturnal ones, otherwise a lot of hand work before. We started to get back to it in autumn and are managing once or twice a month at the moment and it's sort of OK (post-diagnosis we might have had 5 or 6 occasions in all). Its not particularly comfortable on the willy side of things (it feels smaller, less strong, and sore after a bit, if there is an orgasm it is dry and achy). But we get across the line, which reduces my guilt a bit and I hope is nice for my partner. We cuddle, we do foot massages on each other etc. etc. but sex aint something we want to give up just yet.
I think I have heard that penis atrophy is a potential issue (so perhaps "use it or lose it" is spot on): if the willy doesn't get regular (how regular is "regular") erections then the willy gets smaller / less strong ???? And we probably have many other similar technical questions about PCa and sex.
So, it feels like time to take things in hand (funny how any metaphor on this topic feels like I'm in a Carry-On movie) and get doing something about it before it may be too late. So, I'm thinking some level of external support from someone with knowledge of PCa and its different treatments - and where might be the best place to get this support. So any suggestions for this or any other suggestions and comments are gratefully received.
[Our support group had a sex speaker last month but this was a missed opportunity for us - perhaps because they didn't to know anything about PCa. This person was a psycho-sexual counsellor, partly at support group at a nearby hospital and partly at another voluntary sector organisation - so we were a bit disappointed and a bit put-off ("how was if for you?" ..."mmm, felt like my first boyfriend - lots of footling about but getting nowhere"). But in any case that might not be the right route for us.]