-
Just plain sick of it
I was diagnosed TaG1 and had a TURB in December of ’05. Three recurrences; will have my 12th BCG tomorrow. All this time, I have felt so positive – never worried about my life being shortened by cancer or even about the procedures I have to keep enduring (other than those here, who else can say they know the inside of their bladder like the back of their hand?)… But today, I am so low….these treatments HURT; there is a lot of blood and tissue, and I find I am increasingly unable to work on the same day (even from home), because of the discomfort. It’s taking me (and my bladder) longer to recover every time. Next round, we’ll dilute the stuff more, and I may ask for some narcotics!!!
I think I have 4 mos. till my next maintenance round (I am only 1-yr tumor free at the moment)…. I don’t want to think about it, remember it, look in the toilet for blood every time I pee, for the next 4 months. I don’t want to give up my Personal Time at work for more pokes and peeks and invasions. I have never ONCE felt sorry for myself since my diagnosis, as I know I am not losing my hair, throwing up, or writing my will like others with more killer cancers…. But I am finally feeling it, finally feeling like “damn it, i have this stupid cancer and I HATE it!!
Just venting here… I hate to bother my family and friends; after all, they’ve been going through this with me for almost 5 years now, and who knows how much longer they have to listen to me? Thanks for listening!
TaG1 12/05
3 recurrences
BCG started 9/0912 Replies-
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.
-
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
Jack
TA Grade 1
3 Turbts
30 BCG Treatments
Cancer Free since Nov 2007
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.
Lauren
TaG1 12/05
3 recurrences
BCG started 9/09
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.
Jim
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 10Jim
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.
Vi
Dx 10/5 Non Invasive Papillary
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
Nancy S
Ta CIS
dx Ta 11/06
dx Ta CIS 10/07
I watched my father suffer through BCG treatment after BCG treatment. It was terrible.
I know what you are going through.When I was diagnosed, I was actually relieved that BCG was not an option,
and RC was the only way to go.It may sound silly, But I am glad to have had an RC,
donated about 3 months of my life to recovery, and have it all behind me.
I don’t think I could have gone through BCG treatments.I really believe a RC is less painfull than BCG. Mentally & physically.
Age 54
T1NOMX,Grade 3 Urothelial CIS (Carcinoma in Situ)
Neobladder 5/19/2009
Prostate Capsule Sparing
U of M Hospital, Ann Arbor, Michigan
It is OK to vent here. We all know how this roller coaster ride works! So, please vent away! You couldn’t find a better or more sympathetic set of ears!
George
Light a man a fire and he is warm for an evening.
Light a man ON fire and he’s warm forever.08/08/08…RC neo bladder
09/09/09…New Hip
=
New Man! [/size]
Yes, it sucks and yes it is certainly the place to vent because we all certainly do understand that it sucks.
Sorry to hear the treatments are getting you down. You do want the reaction because that indicates it is doing its thing but if it is too much of a reaction maybe the doc can lower your dose?Hope things are looking up again soon!
Mike
Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results….distant mets
2/2014 ct result…spread to liver, kidneys, and lymph system
My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.
Never lose track that there are all sorts of suffering. There comes a point that you are really glad to be alive but this whole thing does suck. And you get sick of dealing with it, and the pain, and the bother and the never ending nature of it. Yes it could be worse there is always someone who has it worse and be grateful for what you have but today you are past it. Invasive or non invasive we all have things in common, check and rechecks, procedures, treatments and on and on. We all deal with it and try not to complain and just not think of it anymore than we have to. Yes we are grateful but we are human and at times it is hard. That is one of the things this site is for; when it won’t fit into the box anymore bring it here if it helps. Then we go on because that is what we have to do and put it back into the box until the next time. If you are like us for the most part you have a pretty good life but there are days ; let’s just hope we don’t all have one on the same day that would not be pretty.
A discussion on reduction of BCG next time might be a good idea.
Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society
If there was ever a place to receive some sympathy, this is it!! When I had my first BCG I thought “piece of cake”. Don’t quite feel the same way now. And yes, sometimes I just want to SCREAM.
THIS IS THE PLACE TO SCREAM
Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum ModeratorVent away…..and maybe try this next time with a lower dose
http://cat.inist.fr/?aModele=afficheN&cpsidt=15376024
patSign In to reply.
