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Just plain sick of it

8 years 11 months ago #33495 by sandie
I know just how you feel. I am in the same boat only I've been in the boat longer (first diagnosed in 2001). I've had 33 bcg's and 11 TURBTs or biopsies. Every time I get put under anaesthesia, it takes longer and longer to recover. I was told what "good news" I had received after my last biopsy because it was low grade again and not CIS. At this point, I was ready to hear (and almost hoping) that it was CIS and that my bladder had to come out.

I am dreading my next cysto in 3 months. I am so, so tired of this. Just plain sick of it.

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8 years 11 months ago #33464 by Moonerj
I fully understand your situation. Yes bladder cancer sucks and so do BCG treatments. BUT if they work and keep you cancer free WELL just maybe worth it.
I like you have had 2 recurrences, was TA Grade 1 and had 3 sets of weekly treatments do to recurrences, and 12 maintenance treatments. Treatment 13-30 went from tolerable to just plain Hell. You see I got spoiled with no side effects during 1st 12. Maybe that is why I got the recurrences.
Been cancer free over 33 months now, and finished with BCG, so hang in there there is a good life after BCG.
I hope you remain cancer free forever,
BCG = Bladder Cancer Gone

TA Grade 1
3 Turbts
30 BCG Treatments
Cancer Free since Nov 2007

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8 years 11 months ago #33452 by lhpdogs
Thank you, all. #12 is done; and we did cut the dose to 50%, and I got some samples of Prosed. OK, I don't think the Prosed worked, other than to turn my pee blue for 3 days now. When I also passing blood, well, if you are familiar with the color wheel, it was pretty spectacular! Jim, I think I donated most of my bladder lining to the sewer system this time, too. I was glad I took the day off, as I usually try to work from home on BCG days - well not anymore. I deserve to lay on the bed curled up with my dog and watch HGTV all day, right?

I have not stopped to think too hard about the next round; you live one day at a time, and I don't like thinking about this disease between poke and peeks - so I just don't B) . But my life is laid out in 3 month increments right now, as is many of yours. And I did figure that if I have to start again 6 weeks after the poke and peek, I will be peeing blood FOR CHRISTMAS.... auugh. Perhaps I'll ask to wait till the new year, and start it off with a bang (heavy sarcasm intended) :side:

Good luck to everyone going through this.


TaG1 12/05
3 recurrences
BCG started 9/09

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8 years 11 months ago #33448 by Okie
I don't think I could have vented any better if I had done it myself. I take advantage of the opportunities to mostly lurk in the background and read posts from everyone. A couple of things have come to mind while doing this: first, I now realize that I am not the first to be suffering the indignities and pain of this insidious parasite; second, I can keep up a good face for my family and others and still have the understanding, space, impathy, and out and out tolerance from the kind souls I have met here that actually have the capacity and the ability to really understand the frustration and sometimes the absolute need to scream as loud and the type-set will permit.

I am in the process of finishing the second round of six bcg's (number 5 is this Friday) and I agree with you that examining the bottom of a comode or urinal each and every time I go is not exactly what I had in mind for my "golden years" (come to think of it, I'm not sure what, exactly, I did have in mind for those years - or for that matter if I am even in those years yet - I think the scale has slid to the right while I wasn't looking - but I digress). I also agree that waiting to see what little chunks of me get passed through my body after being subjected to a procedure that no one can explain why it works or exactly what strength or duration of exposure is sufficient is maddening. I keep thinking that at some point, the whole damn bladder is going to come shooting out the end of my penis!

There is nothing even remotely pleasant about any of this and yet, I justify enduring all of it because it means an opportunity to survive and cheat cancer of its prize. When I think about the number of times I have been subjected to the pain of bcg, I need only look at the number of times some of you have endured and it makes me more resolved than ever that I too can tough it through (I do believe that if anyone going through what we all are enduring was not a "type - A" personality when diagnoised, you most certainly are now) just to prove I can do it if for no other reason.

I started this diatribe as a short note to empathize with you, it appears that I had some venting to do myself, thanks for listening.

TURB 10 March 2010 dx small papillary TCC, CIS non-invasive
2nd TURB 7 April 2010
1st 6 BCG treatments completed
cysto 6 July 2010 - "No Recurrent Cancer"
Start 2nd round of 6 BCG 23 July 10


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8 years 11 months ago #33430 by vgau
There are times when you feel that you must put on a good face for others so they don't worry so much. Even with those that are your best support.

That is one of the greatest parts of this site. It is a place where you can be honest, vent, and then know you will be supported so you can go on.

I'm sorry you are having a bad time with your treatments and sending good thoughts that lowering the dose will make it easier.


Dx 10/5 Non Invasive Papillary

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8 years 11 months ago #33424 by Nix
Most of us have been exactly where you are right now. Never seeing the end of BCG and three month checks - it does suck! Since 2006 my life revolved around BCG and cystos! Please don't lose light of the big picture! If the BCG works you will have saved your bladder and life will return to normal. If the BCG fails, you will have the surgery and life will return to normal. The important thing is to get rid of the cancer and keep it away, and so far you are succeeding.......congratulation :laugh:


Nancy S
dx Ta 11/06
dx Ta CIS 10/07

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