Hello: I'm no writer and especially no doctor, so please, Sara.Anne feel free to correct me in any way you can!
I had my TURB in November, waited 6 weeks before starting BCG on Jan 5th and then the shortage of BCG came about, halting any other treatments. I really needed to get this over with because I also have prostate cancer, received a 6 month shot of Lupron in November to supposedly shut down the prostate. Since I was able to "up" my insurance coverage, I was able to go to a different facility and start up my BCG treatments on January 26th, a 3 week delay. I just had my 5th, 2 hour BCG treatment this morning. I've read that they get worse with each one and I've tried a few things that seem to have helped.
My first BCG was really nasty, in fact I came on this forum asking suggestions for pain. The second one at the different facility wasn't that bad, in fact the procedure was handled much better and more instructions about afterwards. As we hear over and over again, drinking water helps a lot.
I figured I made a mistake on third BCG, didn't drink as much water and was on my feet for quite some time. It turned out quite painful and I was thinking the remaining BCG residue was just sitting on the bottom of my bladder doing some irritation?
After that experience, on my 4th BCG, being retired, I planned nothing afterwards, went home, started drinking plenty of water, laid down and turned back/side/stomach/side like the treatment, figuring I might as well wash the water around. Naturally the urgency that comes with the treatments was there, but the pain was not nearly as bad. I did this roll over thing for at least 2 hours, drinking and urinating probably 10 times, but felt it was worth it.
Did it again today for treatment number 5 and not too shabby? Same urgency, little pain, very tolerable and hopefully won't get much worse.
Just figure I'd pass some information along. Remember, this is what I did! Didn't think of asking the nurses if it okay, maybe I'll remember on my last treatment?
Jay