I'm open with people I regularly see or talk to, because I don't feel comfortable trying to pretend nothing is wrong when there is. That has backfired on occasion because some people then fixate on my cancer, and I have to continually remind them that I can talk about something else, and, in fact, most times would prefer to. I don't mind the occasional request for an update, or show of concern. But I have coworkers who bring it up everytime they see me. I've had to say something like "Let it go, already. I wanted you to know that I'm dealing with this, but I'd like us to talk about other things, too." So do what makes you most comfortable, but be prepared that some people have a morbid curiosity that you may then have to deal with.
If I prefer not to share my health situation with someone, I give a vague reply like "Oh, things could be better but things could be worse." At least I'm not saying that big phony "FINE! Everything's going great." I have a face you can read like a book and can't pull that off anyway.
When I had my 2nd recurrence last year, I at first didn't tell any acquaintances or casual friends, because I didn't want to be treated differently. But it became difficult because it was affecting me too much. Medical care took me away from work, medical bills limited my social life, and people were wondering where I was and what was wrong. I felt better once I told them.
I wouldn't say it gets much easier with time (I've been dealing with bladder cancer for over 9 years), but I've gotten used to it.
Thanks for all of your comments, experiences and encouragement! My TURBT will be this Friday, early afternoon.
I'm mentally prepared for having the catheter. After doing some reading on my own, reading your comments here and talking to the nurse I feel better. Just not sure how my 3 1/2 year old daughter will react. She asks a lot of questions and notices everything. And I have a tendency to over-explain! We will see how it all goes.
Rosie, thanks for the info about tumors near the ureter orifice recurring and using the bi-polar instrument for the resection. My urologist did mention the possibility of needing to put in a shunt if the resection area extended to the orifice. The shunt would allow for the area to heal without scarring over the orifice. I'll ask him what his philosophy for resecting tumors near that area is. Thanks for your insight and advice!
General question to you all: when does it get easier to tell not-so-close friends and acquaintances what is going on? or do you tell them?
When people I see on a regular basis ask "how are you doing?" or "what's new?" I feel almost dishonest (maybe that is too strong a term) when I just say "Good". When I do decide to share what is happening, I feel incredibly awkward "Well, everything's great except this bladder tumor I'm having removed later this week." or "Soooooo, I've got this bladder tumor..." Is this going to get easier?
Thank you again, I am happy to be able to have a "conversation" with so many people who have already been down this road.
Yep you're right Rosie...i was generalizing....top urology centers absolutely...don't forget The Cleveland Clinic which is #2 in Urology next to Johns Hopkins....they battle it out every year!!...and there actually are others at major university hospitals who specialize in blc that we "old guys" know about but extremely hard for the newbie to find.....guess thats why we're here....
I had the same thing, at 45 yrs old. Doc said it looked like a stalk of broccoli.. and pretty big... but it turned out TaG1, and my TURB was outpatient at 7 a.m. and I was home by 2, with NO catheter. So again, it depends on your doctor and his protocol and diagnosis, I guess. I found it to be painful to urinate for the next week, but only unbearable the first day..kinda like a really bad UTI, but no worse..
So keep your chin up, and JOKE all you want. Everyone handles a diagnosos of cancer differently, but I have a problem tolerating the gloom and doom crowd - you are in charge of your recovery a hell of alot more than the doctors are, if you ask me. Attitude and self-care are so important to recovering from ANYTHING!
Let us know how it turns out.. I have my 2nd annual cystoscopy in 3 weeks, and have had no recurrence yet... Life is good! 8)