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facing a radicl cystectomy and terrified

3 years 7 months ago #51136 by Plk
HI Mary,

We all wish for the magic wand, but think about what is important. you are alive and are getting back to living your life. I have an Indiana Pouch, so it is different, but Cynthia gave me a solution for my leaking problem, I wear a camisole, with a pantyliner on the inside to catch any leakage. This way it doesn't show through my shirt. that might not work for your situation, maybe it will give you some ideas.

Look at the bright side, about hitching to the bag for the night, I have to set an alarm to wake up every 4 hours, I would love a complete night without waking up!

We have the best thing, our lives. I wish you the best, you do adjust with time.

With hope,
Paula

PLK in NJ
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3 years 7 months ago #51128 by cancersucksbigtime
Hi George,

Yeah, I wish you had a magic wand for all of us. I am managing, but I'll never like what has to be done now. I am sure you don't appreciate it either.

Really the only times I think about it are first thing in the morning when I have to "undo" myself from that @##@ overnight bag, and at night when I have to hitch myself back up to it. I feel like a horse being tethered to a hitching pole and I do not like it one bit. I do however like being alive! Guess we can't have everything we want, huh.

I do want you to know that I very much appreciate your kind words. They help. I do know I'm not alone, I just wish this hadn't happened. Just like you.

Mary
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3 years 7 months ago #51127 by GKLINE
Hello Mary
Thanks for the update. I hope you are doing well and healing.
I can certainly understand your frustration with your "new normal" and for this I am so sorry. Please know that I feel your anxiety. I sometimes get frustrated with my normal too. It sucks.
But I wanted you to know that we are thinking of you and would love to have a magic wand to make it all go away. I will just send you my thoughts and know that you are not alone.

Sincerely
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 7 months ago #51114 by cancersucksbigtime
Hello Elliedot!
Thanks you, in case I did not do so earlier. I have not been on this site for a while, trying to relearn how to take care of myself!
I had the surgery on March 1 and I'm doing fairly well these days. I have had some issues with leakage, I guess most people have had some of that. But I am at the point now where, although it is not pleasant to have happen, I can get through it with more poise and dignity than even just a few weeks ago.
So, I do appreciate your concern and your kind words. It is good to know I'm not alone in this journey.
Mary
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3 years 7 months ago #51113 by cancersucksbigtime
Dear GKline,
]If I didn't thank you earlier, I thank you now for your words of wisdom. I had this super fun surgery on March 1, and I am indeed learning to live with it, since I very much prefer living.
I will probably never be happy with this new way of taking care of myself, but I will eventually learn to accept it. I am on the right road. I have excellent medical care, a super great circle of friends and my family, and so I do have a lot to be grateful for.
We are starting to get back in to the swing of things and our social calendar is filling up. All good.
So, I do thank you for you input, and I know that I can always come here to vent, praise, sing and laugh!!
Mary

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3 years 7 months ago #51112 by cancersucksbigtime
Hi Jim's wife,
Sorry if I have already thanked you for your wonderful message of hope to me. I have been trying to relearn how to live these past weeks! I am on the road to recovery, with a number of bumps large and small along the way.
You are so right about realizing my husband is just as involved with this journey as I am. It has been pretty rough on him too, especially when something unexpected happens to me and I get upset (an understatement for sure!!). He is my life and I don't know what I would do without him.
So, while I am not at all happy about what is happening to us, I will eventually learn to live with it, because as you say, the alternative is not one we want.
Again, thank you for your kind advice and insight. Every bit of it helps.
Mary

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