facing a radicl cystectomy and terrified

Hi Cynthia,
I'm not sure if I replied to your very informative message. I've been trying to find my way in this new world I'm in.
I wanted to get the Indiana pouch, but my surgeon discouraged that procedure. So I have an ileal conduit and I am not very happy with it. I've had a number of leaks, and each time that happens I do learn what not to do next time.
I have great confidence in my surgeon - she is excellent. I will be seeing her this Monday for my second follow-up visit. I have a list of questions for her, the first one concerning sexual intercourse with my husband. I have no idea what to expect now. Another not fun adventure I guess.
On top of everything else, I fell two weeks ago and broke a bone in my foot, so now I am hobbling around with this big old boot on my foot. It never ends.
Anyway, I do thank you for your kind advice and I appreciate you sharing your experience with me. I'm two months out from surgery and still learning.

Thanks again,
Mary

I'm sorry to hear of your cancer and I am sorry I didn't respond earlier. You must be recovering and adjusting right now. My response to the 'bag of pee' was the assumption that the cancer was gone and wouldn't come back. The bag of pee seems to be less a problem than my hearing aids. I hope you are doing well. I found the chemo to be a challenge but one year out I am doing very well and living as though it never happened except for the CT scan every 4 months. I am still working on getting core strength back but can do most everything I ever did. And no getting up in the night for bathroom breaks. Hang in there. You will be ok.

Mary, I come to this thread later on but I also can feel your fear and anger. That's pretty normal. I mean who the heck asks for this sort of thing? I am not the BC survivor but my dear husband Jim is. He is a stage IV BC survivor of a tad over 5 years. That in itself is some sort of miracle. That's what his onco/uro calls him..."miracle man". I will tell you this also, Jim is a Bag Man. He has a urostomy hanging from his belly. I can also tell you this, I will keep my beloved bag and all as opposed to the alternative which was to not have him with me at all. I am sure you dear husband is thinking the same thing. Please do keep in mind that cancer affects everyone in your life especially a loving spouse. Now, for the urostomy...we have traveled by air and sea since this RC/IC. Not a problem one. We've cruised we just prepared for it with supplies which was no big deal. Please as others have said before me take this in small steps at a time. It's pretty overwhelming to say the least. Know that you are in great hands at Fox Chase and that you will come out of this on the other side and do great. Right now, I think is the hardest time...the waiting time. Know that this is a great group to ask questions and to find support! Stay strong!

Mary
I can feel your anger about the diversion. You are very right to feel this way..... For now!
Get that anger out now and prepare for the changes in your life. You will be a survivor after this surgery and being a survivor isn't for sissies. An I can tell from your posts that you are a strong person.
Yup..... cancerssucksbigtime is a great way of looking at it. Yes it does suck! But you will find that, after cancer, you will be up to the challenge of living again..

Best of life to you

Sincerely
George

Hello George,

Your words of wisdom ring true with me for sure. Yes, I am angry and scared and not at all looking forward to my "new life" after I lose my bladder. But I know that I want to have a long and happy life with my husband, family and friends. There are so many things still to do.

My surgery is scheduled for Feb. 23, not too far off. My surgeon did not recommend the Indiana pouch I wanted, since I have only one kidney and that could be damaged beyond repair. So I will be getting the ileal conduit that I did not want at all. This is something I will eventually accept. Right now, all I can think about is how awful it must be to walk around with a bag of pee hanging from your stomach all the time. I know I won't always feel that way, but for now it is with me.

I am being treated at Fox Chase Cancer Center in Philadelphia. This is an excellent place for cancer treatments. I am in very good and competent hands and have no doubts that I will be fine. I will be very glad when all this is behind me and I can start living a happy, healthy life again.

I thank you again for your kind words. They help a lot!!

Mary

Hello Mary
I have been thinking about you as you start your journey to being cancer free.
Yes it is scary(very scary) but as Cynthia says "We do what we have to do and we live a new life."
I am very glad to see that you have life goals. That is a good sign. I mad a list of them before I had my RC. They gave me a goal to attain after surgery. I had a big list. Some of them I had never done before surgery. You will have fun looking forward to it.

I hope you have a solid TEAM of supporters on your side..... If not..... Recruit and train them to help push you toward your goal of being cancer free and starting your next life. Tell them EVERYTHING. You will not protect them from anything by not sharing. They are going to go through this with you and they need to be in the loop.

And it is OK to be scared and mad. Let it out and get ready to get well again!
Sounds easy doesn't it? Its not. But you will get through it and strangely enough you will feel a sense of determination that you didn't know you had. And I am on your team of supporters who will help you get through this.

Best of luck
George