I have just had my second bcg one more to go , now last week I was so tired leed a little very painful to go for a wee and a little blood , this week slept all afternoon having a wee about every 15 min and more blood this time , so I am thinking that there are more cancel cells there so I am very worried for next week and the 8-10 week break before I go back to get checked out
I'm no real veteran of this, but willing to share my experience and what my friends here (and doctors) have told me:
- Don't let a bit of blood lead you to determine your tumor is back. Could be/could not be. This could, in fact, be the BCG doing what it's supposed to -- spurring the immune system -- and leading to an aggravated lining of the bladder and a bit of blood.
- I went 6 weeks from my last BCG (the 6th of 6 in the installment course) and now they've pushed my appointment back, so it will be 7 weeks before I get my cystoscopy. I can tell you I worried every time I saw red or pink. I think we all do. In fact, I just took a pink pee today. I'm hoping it's just a bit of dehydration and my so-so kidneys letting me know. I'm hydrating now.
- I was wiped out the day after all my BCGs. I hear that's not uncommon.
- If really in doubt or worried over what you're feeling/seeing, talk to your urology nurse.
- Don't feel bad about the worry. This dang disease puts all of us through it, and we come here to talk about it.
- In my experience, and from my GP/internist tells me, the 6 weeks post BCG is absolutely necessary to let the bladder heal, and a bit of red or pink should not make us too jumpy.
I wish you the best of luck. This thing is a trying experience, and in my case the mental aspect has been perhaps more difficult than the physical. Hang in there!
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