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I loved my original bladder. Well, love seems strong, but once it was gone, I appreciated its capacity and function. No leaks, no wet beds, no question about whether or not I needed to visit a washroom. It communicated with my brain in such a way that I knew when I needed to go. And I could always delay going if I chose to do so – at least for awhile.
My radical cystectomy changed that picture. My neobladder seemed to have a mind of its own. It eventually stretched to store a comparable amount, but it did not tell my brain when I needed to go. I became a clock watcher and if I was lax concerning my timekeeping, there was some chance that I would be going before I could stop the process. And at night, well, nights had a regimen of twice or thrice having to get up and go to the washroom. Sleep became a craved desire. But I loved the freedom from disease and the almost normal appearance of function and form.
Multiple recurrences of disease have changed that picture too after three years, two months and ten days (but who is counting?). Ten days ago I underwent a urethrectomy, cystectomy and conversion of neo to ileal conduit. The two surgeons masterfully recycled part of the neo into the formation of the conduit and brought it out to a cute, small, bright pink stoma on my right abdomen. I thought I might be repulsed; I am not in any way. It is working well, I am sleeping eight hours a night, I do not ever feel a full bladder (since I do not have one), I am amazed at the volume of fluid that passes through my body, and so far no leaks (though they are inevitable, and probably at the least convenient time and place!).
Most people only get one plumbing system. Some are forced into a second. I have been forced into a third because of recurring disease. And yet, I find myself grateful to be feeling so well, eating, losing only a moderate amount of weight so far and accepting this third variety of waste management with little or no regret.
If I could start all over and pick a diversion, which one would I pick? If my original equipment was diseased and in need of removal, I’m not sure I can answer that. I was happy with my neo most of the time. If early days with my IC remain the norm, I will be happy with it most of the time too. In speaking with some who have an Indiana Pouch, they too are happy with their diversion most of the time. The one person I know who has a Mainz ll is also happy with that diversion most of the time. The choice seems so huge prior to the surgery. I have discovered, at least for me, that it need not be so huge.
Bottom line? We are very fortunate to live where we live at a time when these options are available by world-class surgeons at major cancer centres.
Feeling very blessed.
Greg, the appliance man
Greg, you astound and humble me. What incredible spirit and strength of character and outlook you have! So glad things are going well. This post is inspirational and I know it will help many who read it. A beautifully optimistic, glass half full perspective (cause if it was full, it might leak! smile).
Greg it is great to hear the new diversion is work very well for you. You are certainly an inspiration for us all. Your strength is remarkable…I’ve not met you in person yet but looking forward to the opportunity.
God Bless & Stay strong,
Rick
Oh my, Appliance Man. That was a really good post. Reminded me to be thankful. And it will give much hope to those still facing cystectomy and some kind of alternative “elimination” system.
Thanks for the reminder about all we have to be grateful for.
Best wishes from Susan the marsupial.You are the hero, I wish all BC patients be as brave and positive as you, and their recovery be as smooth and uneventful as yours!
What a great post from such a great mentor. You helped me so much when I was facing my neo surgery and your tips have been bang on. So far, I’m doing fine, thanks to you and to David, who was also there for me consistently.
One of the great things we have to be thankful for is people like you and David and many other folks here who share their experiences and advice. Without you, and this wonderful group of people, we would face BC alone. It’s scary and there are so many uncertainties. You’ve put a human face, encouraging words and tremendous support front and centre.
I’m glad I had the pleasure of meeting you in the hospital after your surgery. You looked great and you’ve likely recovered quite well. I can only hope that I can keep my faith, confidence and humour half as well as you have.
Rest well and I’ll see you in the ‘hood this summer!
I’m not going to flatter you with words of amazement as it will impede your healing having to lug around a heavy ego and possibly strain thyself. 😉
I’m just very happy to hear you are on the mend and I’m looking forward to seeing you in the not too distant future.
Cheers Gregaratus (Greg+apparatus)
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