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facing a radicl cystectomy and terrified

2 years 9 months ago #52203 by jaggyquimper12
I am still looking at option, but would you consider Neo Bladder?
Roger new with pathology report with cancer

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3 years 1 month ago #51350 by cancersucksbigtime
Hi George,
I haven't posted for a while, so I thought I would catch up a bit. I am moving forward every day. It's not as bad as it was in the beginning, although I'm not all better yet.
And, as if I didn't have enough on my plate, I was diagnosed with a basal cell carcinoma in a place where the sun don't shine!! Don't ask me how or why, the doctor doesn't know either.
So I had to have yet another surgery just two weeks ago, and now I have a rather tender incision in a spot where there should never be one>>
No more cancer there, so that's something.
I just had three month follow up scans last week and a meeting with a new oncologist this past Tuesday. He told me the scans are clear, so that is a huge relief, as I'm sure you know. My original oncologist was recruited by the National Cancer Institute in Washington, DC, and he left Fox Chase the end of May. I was sorry to see him go. Not only was he excellent and personable, he was very tall,dark and super handsome. Oh, well.
So, I am in a better place than I was a month ago, and I realize that it's only been three months since my surgery. I have to be patient with myself. (Not a strong suit)
I thank you in advance for your good advice and support. Keep it coming, and I hope this long note finds you well.
Mary
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3 years 3 months ago #51161 by cancersucksbigtime
George,

I hear what you are telling me, and I am sorry for you as well. I guess there is no perfect bladder replacement system at this time. Maybe some hot shot doc will invent something that all ostomates (that's what we are called from what I hear!!) can have that will make us the "old normal" !! Not really funny tho.

I do appreciate very much what you write to me. I am still struggling, and maybe I always will, but I'll take my life as it is over the alternative.

Cheers,
Mary

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3 years 3 months ago #51149 by elliedot
Hi Mary,
I hope you are doing well. Two months after surgery isn't fun. I just passed my one year after chemo and realize I have more energy. You have that to look forward to. Are you having chemo? Do you have the urostomy bag? I have the urostomy bag and have found it to not be a big problem. Loose clothes. Two problems. Drainage from abdominal lymph nodes continues and is a nusance. My night bag connection is a problem since it sometimes comes unhooked and I have leakage into the bed. Haven't figured out what to do about that.
Life can be good after you heal. A positive re the radical cystectomy is that chances are very good that they got all the cancer. I keep reminding myself of that. My oncologist feels pretty positive although he keeps saying "You aren't out of the woods yet but...." Hang in there. It will get better.
Hugs to you. elliedot
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3 years 3 months ago #51148 by GKLINE
Mary
Just so you know, I have been without my origional bladder for almost 8 years. The Dr made me a new bladder out of my small intestine. It works quite well most times.

But it is not perfect. I have a constant incontinence problem that is controllable during the day..... but there are surprises that come up on a semi regular basis.
During the night I always have some issues. I have been on a 7 years search for the perfect "control system" but have not found the perfect option yet. This is an ongoing pursuit. This is not meant to make you feel bad. Yes, we are all thankful we are alive.
But that doesn't mean we cant bitch about the "new normal"

Your new normal is a pain in the neck. It is OK to be mad about it. I get mad about it all the time. But I will not let it stop me. Tomorrow I am leaving for a sports car race in Pittsburgh. I am a survivor and a competitor.

So are you

Keep sending us your issues and we will talk about them.

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]

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3 years 3 months ago #51144 by cancersucksbigtime
Hi Paula,
Thanks for your response. I originally asked my surgeon to do the Indiana pouch and she discouraged it.
I think the only plus to this overnight bag is that I do not have to get up during the night.
I just saw my surgeon today and she says I am doing very well. So, I will gladly take that!
Good luck with everything, and I know we're all in this fine mess together.
Mary
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