Discomfort after final BCG treatment

Hi PoppaSmurf. Good to know you have got over the worst of it and good to know your Doc has not got any concerns. We go through a lot of invasive treatments. Prodded and poked , and pumped full of toxic substances. It is no wonder we have these longer term unusual feelings and pains. Hopefully, things may settle down for you in time. Best wishes.

Thx Rily, 

I guess after the last dose of BCG which was on a Tuesday,i was really hoping that by the following week i'd be feeling more comfortable with going out and not having to run the loo but sadly, alas, this hasn't been the case , i'm clawing the walls lol

Good luck with that one. I finished mine 7 weeks ago and it`s still not good. I also have chronic fatigue and anxiety disorders to add to it now. Back in surgery in a few weeks time to make it worse. Getting help is like trying to get blood out of a stone. But keep your chin up and stay positive there`s always someone worse off than yourself. Remember what the Monty Python boys say when they are hanging from the cross :-)

Hi PoppaSmurf, I had 27 doses of BCG which fingers crossed has kept my cancer free but the inside of my bladder still looked wrecked a year later. It takes time to recover, mine looked a lot better at my last flexi (18 months after last dose) keep drinking the lemon barley. Hx

I only had 14 instillations but that was enough to give me a lot of grief. Thankfully it's kept the cancer at bay but to this day I have a lot of discomfort and pain. I'm currently on cocodamol prescribed by my GP. I'm of the opinion that once the cancer appears to be under some sort of control (if that's even possible) any fallout from the treatment isn't something that they can necessarily treat. 

For sure. But after 6 different Doctors not one of them twigged to the fact that I have Chronic fatigue Syndrome. Should have guessed after they didn`t get I had bladder cancer until 6 months later when I was pissing clots instead of just blood. At 62 years old you`d think it was a no brainer. Anyway now I know I can try to cure myself. Yes cocodamol and offered anti depressants but I have a plan after my next op. Watch this space. And keep your pecker up :-)

What’s with the Lemon Barley 

One of the group had a GP who recommended drinking lemon barley for sore bladder. Also years ago it was folk medicine (or an old wife's tale  ) to drink lemon barley if you had cystitis. I find drinking it is an easy way to get enough fluids down (aiming for 2 litres daily). I think hydration is the key issue, and lemon barley is caffein free and water diluted. 

Thank you 

Hi, it was my GP in Bedford, around 1979.

Because I'd already had cystitis once and was miserable due to delay in getting treatment where I'd previously lived, when I had the onset again, I recognised it and went straight away.

The new GP said, "yes it is a touch of cystitis, go out of here and buy a bottle of Robinson's Lemon Barley. Dilute it as per the label, get through the whole bottle in the next 24 hours. If you still have symptoms come back and I will then give you the antibiotics. But I don't think you will need them."

He was right!

I believe it may be something to do with the natural chemicals provided by the barley, possibly influencing the pH [acid/alkali balance] in the bladder, making it harder for bad bugs to take hold. And obviously an extremely thorough flush-out.

Hope that helps, 

Denby

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