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5 years 4 weeks ago #47047 by GKLINE
There are three stories going on in this post.
And that is the case with this frigging diesase.

I am so sorry to hear your story graymare. I cannot imagine having to live with the time bomb inside and no way to fight it. I cannot express my sorrow for your situation. My heart goes out to you. Please live the time you have, with grace and happiness.

Lorraine, You are why we are here. We ALL have times that we feel very sorry for our lot in life. It is really OK to "get down" about this disease. We are here to listen and to let you know that you are not alone with your emotions. There is no weakness in being emotional when they say "cancer" and as you recover and have a lot of time to think, things begin to weigh on you. Feeling depressed is normal.
We are here to cajole, talk and to kick you in the ass if need be! We want you to get better and become a true survivor. You may stay and share your experience with others, or you may drift away to your real life.... We just want you to have a GOOD life. I am glad you came here and responded to another post and tried to help. You Go Girl!

EMC
Thanks for starting this post.
This is the place to share your story with us. Share your fears with us. Ask questions of us. This is the place to let it ALL hang out! There is nothing, and I mean NOTHING that is Verboten. If it concerns you.........it concerns us.
Like you, I came to this site after I had been through 2 TURBs and a Radical Cystectomy and a neo bladder (nerve Sparing) I came here and meekly asked my concern;
"Am I going to die from bladder cancer?" I was sure that this was just the beginning of a long battle. I was afraid to ask this of the Dr. with my wife in the room.
Well. I got an answer back real quick. Some smartass on this site responded;
"You will not die of bladder cancer. You might die from being hit by a bus! You have no bladder, so you will not die of bladder cancer." Smartass!
I also had nerve sparing surgery, and it was almost a year before I could work up a minor erection. It was 3 years before I could call upon myself to "perform"

Thank you all for posting here. The emotions spoken here are exactly like the emotions of this disease. No story is perfect. There is lots of heartbreak and setback in this journey. Please keep coming back. You may really help someone who never post's here, but needs you help.

Thank you all for being here
George Kline

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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5 years 1 month ago #47040 by emc007
Hi Graymare,

Welcome to the forum. Unfortunately, I don't have anything to offer you for your cancer. I am like you, in that I try to live every day for itself. Thank you for the reminder and my thoughts and prayers are with you.

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5 years 1 month ago #47037 by CatherineH
Hello Graymare... Welcome to our forum. I am very sorry for your diagnosis of such a rare cancer. My type of cancer is classified in the "rare" category as well and I know what you are going through trying to find meaningful information that seems to be nearly non-existent.

Your post is wonderfully written. Your words about making each day the best it can be is such a great advice. I appreciate being reminded of that, especially when life gets hectic and I start to sweat the small stuff again.

I have no personal knowledge of your type of diagnosis and I am sorry that the chemo you went through did not help you. Have you spoken to your oncologist about any clinical trials that you might join? I wish I had more info to offer but I can only extend an invitation to come back here any time you feel the need to talk or just want to be among people who understand.

Best wishes... Catherine
Forum Moderator Team

TURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
Nashville, TN

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5 years 1 month ago #47036 by graymare
This is my first post also. You are very fortunate to have such a good experience. I also have 'invasive bladder cancer', which was described to me by my oncologist as "small cell bladder cancer" which is very rare and very aggressive. I am wondering is there is anyone registered here who either was diagnosed with this type cancer, or is a loved one of a person who had this diagnosis. I was treated with chemotherapy of two different kinds over a period of 5 months. It was not successful and, since I am 87 years old and the tumors had penetrated the bladder muscle wall, there is basically nothing more that can be done. Surgery is too dangerous due to my age and the bladder wall penetration. I still have at least one tumor that occasionally bleeds. However, I feel fine. I have no pain except for a little arthritis. I walk a mile every day, eat well, and sleep well. However, I don't know what's ahead for me. Since this type of bladder cancer is rare, there has been little research on it. Any information I can get from anyone who reads this forum will be most welcome. Right now I live each day for itself and make it the best day I can. I can do nothing about yesterday nor anything about tomorrow until it becomes today. So each day is a work in progress.
Thanks for hearing me out.
graymare

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5 years 2 months ago #46806 by Flamenco.
Hi and welcome. And thanks for sharing your experiences with us. It is a great help for others who are going through similar problems to know that here is where the real information is. Doctors are not always forthcoming about what is in store, and very often it is the small detail which is so helpful to others. Your post is not too long, I think you have managed to condense it really well!
Diane
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5 years 2 months ago #46805 by lorrainevalentine
Thank you for sharing your story. I had a partial cystectomy about 10 days ago and I am sitting here feeling sorry for myself. Hearing your story helps me put things in perspective. That's awesome things are well 9 months later! Take care & God bless you!
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