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facing a radicl cystectomy and terrified

3 years 11 months ago #50644 by cancersucksbigtime
Thank you Paula. I appreciate your kindness!
Mary

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3 years 11 months ago #50643 by cancersucksbigtime
Cynthia,

I have read and reread what you just told me, and I know you are right.
I had blood work and a CT scan yesterday and the oncologist told me there is no cancer. They couldn't see inside my bladder, but there is no evidence of cancer anywhere else, so I have been cleared for surgery.
I get to meet my surgeon this Thursday and of course I am very anxious about whatever she has to say. I am told she is excellent, that she specializes in robotic surgery, so we'll see what she wants to do with me.
I actually have been seeing a therapist for the last month, and it helps a lot to vent to her. She is a very kind, compassionate person and I feel much better when I see her.
I know my journey is far from over, and I also know that I have to do this. I want to grow old with my wonderful husband, I want to see my four young grandchildren grow up and be happy, and I want to live long enough to see my daughter get married!! (she gets embarrassed when I say that , but it's a valid goal in my mind!!)
So, again I thank you for your comforting message. I know I can do this, it's just so very hard. But you already know that.

With gratitude,
Mary

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3 years 11 months ago #50641 by Plk
Mary,

I am thinking about you. PLease listen to everything Cynthia says as she is experienced and so wise about this process. She has helped me so much in adapting to this journey. THinking and praying for you,

Paula

PLK in NJ

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3 years 11 months ago - 3 years 11 months ago #50631 by Cynthia
Mary,

Your only having one kidney may be a factor in they type of diversion that is recommended for you. I only have one kidney but I lost it after my RC. The truth of the matter is that no one really knows what type of diversion they will get in the final analysis as much depends on what they find once they get in there who knows how long their ureters are? I know a lot of people who live very full lives with all types of diversions. We can't lose sight of what is important here and that is living that long full life. I have been in your spot and fully understand how you feel but don't lose sight of the end game. I lost sight of it and am lucky to be alive I swore at one point I would rather die than have an RC.... Yes you heard me right and for almost two years I ran from a DX of T2 with CIS by perusing a clinical trial and every treatment but. The truth was I would have been much better off without a lot of the lasting side effects I have now by doing what was best medical wise for me in the first place. I guess the point I am trying to make is that we do what we have to do. That does not make us a baby by not liking it, it makes us human. This is hard on many different levels and we all have the right to yell at fate. If you find you don't get the diversion you want think about going into therapy now and start dealing with your feelings going forward. I found a good therapist and said all the things I felt and worked through them one by one. I was having depression, panic attacks and feeling of hopelessness. Time is our friend and facing our feeling and dealing with them helps a great deal. I sometimes think the healing from our treatment and surgery is much quicker than the scars cancer leaves on our minds. I know as I am writing this that it will not really help but know I wish there was a way to make this journey easier for all of us. But the truth is we all have to arrive in our own time and way to the other side. For me that was the day when bladder cancer no longer was the story of my life but a paragraph. Keep talking, keep us updated and know we are a family here and you are a part of it now.

Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society

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3 years 11 months ago #50630 by cancersucksbigtime
Jill,
I thank you very much for your prayers. I go today to have a CT scan, bloodwork and a visit with my oncologist.
Thursday is the day I see the surgeon. I am trying to convince myself that I will get through this, although I do not want to hear "ileal conduit"!
Sometimes I feel like a baby with all this!@

Thanks again,
Mary

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3 years 11 months ago #50585 by cancersucksbigtime
Thank you Paula. I am glad to know that you are doing so well. I hope I can join that club after all this is behind me.
Mary

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