Not in a good place right now. Mix of emotions, quite angry because I was told that they would call me to let me know when to go into hospital to be with my wife so we could hear together the results of yesterday's clinicians meeting. She has just called me to let me know that the doctor has been to see her already. I wanted to be there so she wasn't on her own.
Some back story - my wife was diagnosed with bladder cancer nearly a year ago. She opted for chemotherapy (gemcitabine and cysplatin) and had a partial response. She was on 15 day cycle, but could never manage day 8 as she was too sick or they couldn't get the cannula in to deliver the drugs (this has been a recurring issue).
After that she was offered "salvage surgery" which would not only remove the bladder but a whole load of other things, and leave her with a stoma for life, even if it was the "gold standard". She was still in shock and couldn't face that future. The alternative that she opted for was radical radiotherapy, six weeks of driving to hospital every day as the world fell under the shadow of coronavirus. And pain and exhaustion towards the end, and for weeks afterwards.
She had her 50th birthday on VE day weekend, we couldn't do what we had planned but made up a big cream tea ourselves.
In July she had a cystoscopy and initial prognosis was good - no signs of the cancer, just necrotic tissue But there had been problems with fluid retention, ending up in A&E needing a catheter. It got removed, then there were continence issues with nights of lost sleep. And she has continued to lose weight.
Finally got GP to take notice after blood tests showed poor kidney function and her haemoglobin levels were very low. Ended up in A&E again last Tuesday, where she has been ever since. She had to have blood transfusion and CT scans over the weekend which show the cancer escaped and spread to two lymph nodes. These have grown and were blocking the ureters. On Monday she still seemed quite bright, but they had to put tubes in her back to fit stents internally and external drainage bags, and she has been in a world of pain ever since. She is exhausted and doesn't feel she has much fight left.
Sorry for the long post, I think there is a lot that has been pent up for too long trying to be brave and supportive.
All they are offering now is immunotherapy, has anyone got any experience of how effective this is at this late stage?
Hi
I'm sorry to hear how you're feeling at the moment. It must be very difficult with your wife currently in hospital and extremely frustrating that you weren't with her when she received the latest news.
I'm from the melanoma group where immunotherapy is routinely used for advanced melanoma, as chemotherapy and radiotherapy don't have any effect on melanoma, and it's had a lot of success.
I hope you don't mind me suggesting that you post your question about the use if immunotherapy for bladder cancer in the Bladder cancer forum, which I can see you're a member of, as you should then hear from people with your wife's type of cancer on how they are getting on with immunotherapy.
Wishing you and your wife all the best
x
"Never regret a day in your life, good days give you happiness, bad days give you experience"
That's great news that your wife is back home . I'm sure she'll feel far more comfortable in her own surroundings. I know I certainly do 
"Never regret a day in your life, good days give you happiness, bad days give you experience"
I'm so very sorry to read that your wife has passed away but glad that you were able to fulfil her wish to be at home and that her passing was pain free.
The fact that you were with her at the end will, I'm sure, have been an immense comfort to her.
x
"Never regret a day in your life, good days give you happiness, bad days give you experience"
