Hi Lenny12. Welcome to the forum.

I am so sorry to read of your husband's situation.

We don't have many bladder cancer sufferers and carers on this particular forum. 

However, Macmillan cancer do have some bladder cancer forums (click here), and there is a Facebook group (click here).  I think it's possible that someone on one of those groups would be able to help you.

Hi, 

Although I am on here for other reasons (husbands &oesophageal cancer) I have some experience with bladder cancer.

My old Nana was diagnosed with this at 80 years old. She was treated with BCG and some kind of 'abilation'. I know she hated it and during treatment caused her bladder to get extremely cross, red n inflamed. I know she was pee'ing every 10 mins or so to start, but that improved. I think she was on low grade antibiotics throughout treatment. Her biggest gripe was having to go onto de caffeinated tea!!. She never gave up her heavy tobacco use though(:

Anyway, to cut the story short , it worked, she was checked for 5 yrs with no reoccurrence in the bladder.

She checked out 4 yrs ago at the grand old age of 96 yr old, nothing to do with the bladder.

If things are difficult for you guys at the mo, go back to the Dr's , ask for a review, tell them the amount of pain he is in, have they excluded a plain old urine infection- which are incredibly horrible. Of course stress and anxiety kinda goes hand in hand with any cancer diagnosis and chronic pain and makes a difficult time 100% worse.something also to mention and discuss with the docs.

good luck