It's Steph from the Community team here, I hope you don't mind me popping in to share some recent news.
I'm here to highlight a recent Community News Blog, 'Cancer and fatigue - when will I start feeling less tired' in case anyone might find it helpful. We know that fatigue can affect so many people affected by cancer so we felt it was an important subject to talk about.
We were able to share some amazing support from the bladder cancer forum in the blog, so I hope you have time to take a look. The blog can help others find and benefit from the vital support you all offer each other.
You can read the blog by clicking on the linked title above. To take a look at all of our Community News Blogs, you can click on 'news' in the menu at the top of the page (above the forum name).
Do let us know if you have any questions, feedback or would like to share your experience. We'd also love to hear if you can think of any important issues you'd like us to talk about in our blogs.
The Elephant in the room that hardly anyone sees it seems is - takes deep breath then says - Sex after a Radical Cystectomy? - there I've got it out - I might be 70, but I still have (or had) an active sex life with my partner of 40+ years. When other bits of me are removed, along with the bladder, what are the chances of having any normal intimacy?
Hi, as I understand it sadly the effects will be pretty radical on your sex life too. But the thing is to REALLY push your medical team to give you proper answers and refer you on for whichever therapy/combination of therapies [be it tablets/injections/implants or whatever, I really don't know all the details] will be of most use to you. Do NOT suffer in silence; our old GP firmly told us that a healthy sex life was part of a healthy life and readily prescribed to suit, which many won't.
I was told very little about the sexual aspect of having a cystectomy.In women the vagina is made much shorter and most of the internal gynae bits are removed.You feel very different internally.I would like to get back to a physical relationship.I didn’t see my partner during lockdown as he was shielding.I did tell him about the changes my body had undergone.It has been difficult as we don’t see each other that much,he has been ill quite a bit recently.Jane
Sorry to hear of your situation, especially at a time when you probably need more tlc, than at what used to be normal times, with your own battle with the dreaded C.
The thing that worries me most is how the potential issues with erectile dysfunction may affect me. I suppose it's maybe more a man thing, but the thought of not being able to respond, when being aroused, I find quite hard to contemplate! It's not about being infertile, as I had a vasectomy years back, as part of our family unplanning.
Even at my age, I am a fairly fit and (was) a healthy 70 years young, I still have the sex drive, although not so testosterone driven, as it used to be. So I suspect this may be a very hard place for me to go.
I think this possible or probable issue bothers me more than coming to terms with having a stoma, although I suppose that may also have some impact on the proceedings, when intimacy may be possible.
I would feel the same if I was in your position.I don’t think men are told enough about how this surgery will impact a physical relationship.Did your surgeon tell you much about it ? I suppose it depends on the extent and position of the cancer as to what nerve sparing surgery they can do.Best wishes Jane
Hi Jane, yes the consultant was fairly open about this aspect of the procedure and likely effects. Apparently 80% of men suffer some form of ED after a RC. so the prospects aren't great.
However, she did say there are lots of things that can be done to help with such problems. Here's hoping I'm one of the luckier 20%, but it's maybe another bridge to try and cross if needed, once I'm hopefully cancer free, which is the main objective! Thanks for your input, I hope you can enjoy Christmas with your partner.
Well the almost inevitable has happened, or rather not happened!
There is absolutely no life in the old man living down below. So I'm pretty devastated, and as have suffered from mild depression for years, this has really thrown me down into the coal cellar! All the joy of having hopefully got rid of the cancer, and having a good recovery so far, completely washed away.
The torment that started in September 2020, with peeing claret and all the pain and grief subsequent to the removal of a kidney, chemo induced sepsis, then the RC taking bladder etc, still goes on, with this latest kick in the soft bits and my first stoma bag leakage at 3am this morning.
I now have an appointment with the Andrology clinic in early April, so will hope that may provide some possible cause for an improvement in the situation. Meanwhile, I have been given a prescription for Sidenafil (Viagara). The initial dose of 50mg hasn't had any effect, when tried the other day, so I will try a double (maximum) dose of 100mg next time, with fingers crossed!
My current depressed state of mind probably doesn't help. but I'm not terribly optimistic that this issue is going to be resolved very positively. As part of this follow on treatment, I am also meeting with a psychologist next week, to discuss the current situation and all the background leading up to where I am now.