Hi everyone, although I am new to the group, I was diagnosed with bladder cancer in May 2021 age 52. My cancer experience has not been a good one due to poor communication between the consultants and myself and I was not assigned a cancer nurse or given any literature until my second Turbt! I found all my information from the Internet! In total I have had 3 TURBTs and on that third one I discovered that they had mislaid my notes from the second operation so they thought I was only in for my second turbt!! When I tried to get some information from the consultant about what he had found on my recent and last operation, he tapped my arm in the recovery room and said "dont lose sleep over it???" It is hard enough being on any cancer journey I should imagine but my consultants seem appear flippant and evasive about Bladder Cancer!! I was also not told what I should and shouldn't do after I had chemotherapy in my bladder and had I not read up about it myself, then I could have ended up with some nasty sores or given my family some! I was told that the nurse would ring me in two weeks with the results, however, I was asked to see one of the consultants six weeks later in his office and there he broke the news that my cancer was highly aggressive and that I would either have to have BCG or a complete bladder removal! My partner and I had 10 minutes to decide what to do!! I opted for BCG and I had the 6th one two weeks ago! I am due to have a biopsy on 31st May! Where i have always been positive, I have found myself to be full of anxiety and every little ache and pain has me worrying that the treatment has not worked and that maybe it has spread somewhere else? My partner is super supportive even though we only got together in the April of last year and I was diagnosed in the May! He has even made it possible for me to have time away from work and has supported me financially but I tend to tell him I feel OK , when perhaps I am not, as he worries about me so much he makes himself sick! I feel alone on this journey even though I have friends and family around me! They just tell me to " be positive"! Which is easy for them to say!!
For those of you that have had the BCG, did it make you feel tired? As I feel exhausted all the time but don't know if I am making a mountain out of a molehill?? I know this next question is a little sensitive but when will it be ok to have sex without protection? I cannot find the information anywhere? My new partner is also terrified of making my bladder feel worse or somehow make the cancer come back and it is putting extra strain on our relationship ( from my end only). Thank you for listening to me.
Hi Sparkle68 and a welcome from me. Sorry to hear you have had little information from the medics. I think we are all familiar with the unusual aches and pains and think the worst, but usually we are just overthinking things that we would normally ignore. I Had a different treatment myself, but been here long enough to know that the treatment has a build up effect and takes its toll on the body causing extreme tiredness. It is strongly advised to use condoms during sex. Macmillan have produced some information on this which you can see if you click HERE .There is also a lot of information on that page regarding BCG. I hope all goes well at your check up. Best wishes.
