Dear Tubguy,
My name is Mary and I haven't been on this site for quite some time, and yet when I saw your story I feel that I should share my story with you and maybe give you an idea of what my bladder cancer journey has been.
I went through 10 mitomycin and about 16 BCG applications. After several TURBs, my urologist told me the bladder could not be saved. That was in 2015. I went for a second opinion at a highly regarded cancer center, Fox Chase Cancer Center in Philadelphia. I got the same bad news about losing the bladder. So, I made the decision to stay with Fox Chase, as they only do cancer!
Had two treatments of chemo in Dec. 2015 and had the cystectomy on March 1, 2016. The surgery was completed, they put me in ICU overnight for observation, and then a hospital room for the next four days. I had an excellent team - surgeon, oncologist, ostomy nurse and social worker - the entire time. Quite impressive.
Since the surgery, which I greatly resented (that's just me venting!!) I have been healthy. I have no more cancer, and since I have no more bladder, no getting up in the middle of the night to go to the bathroom. I attach the daytime pouch that collects my urine to the nighttime collection bag. So, the logistics are pretty straightforward.
Emotionally, it took me better than two years to come to terms with losing my bladder. Fox Chase sponsors a support group that meets once a month where patients new and old get together with our ostomy nurse and our social worker. We discuss all kinds of topics - problems, solutions, who just had a new grandchild and a general bonding of people who all have the same thing in common - the experiences of losing the bladder and how to come out on the other side and thrive.
After my surgery, while still in hospital, my ostomy nurse, Tina, came in and showed my husband and I how to change the bag that collects urine. It took some practice to get comfortable with the procedure, and with time I have become quite adept at the job, if I say so myself!!!
I can tell you that, although this whole process has taken 4 years now for me to finally accept what I have to do, I do accept it. I see my oncologist once a year now for blood work and scans to assure there is no more cancer cells lurking anywhere. I do believe the logo that Fox Chase uses in their advertisements, "Where you start matters". To trust your medical team is the first, and probably most important, step in getting through the whole bladder cancer journey.
I would be more than happy to keep talking to you sir! Just say hi and I will be there!
Mary