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6 years 1 month ago #45827 by ragmg
Oh, I see you got the neo bladder in '08. How is that? Do you have to use a catheter and does that disturb your sleep?

The urologist concerned about that procedure and the risks of complications due to the amount of reconstruction required and/or infection.

Everyone has been moving pretty swiftly and not dragging their feet at all; I've gone from my primary care physician to diagnostic scans in about 30 days. --rgg

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6 years 1 month ago #45826 by ragmg
Thanks, George. I like the straight talk approach to getting info. I appreciate you all befriending me and being there to give me a "HUG" when I need one and a swift kick when I need that too!

What are your thoughts and/or experience with high-dose Vitamin C injections? Did you consider it at all? There seems to be some controversy as to whether or not that treatment works. I know that I need to make a decision within the next couple of weeks, and I am trying to decide whether or not I should seek an alternative medicine opinion, like from the Cancer Centers of America or Sunridge Medical in Arizona or something. I don't want to confuse myself, but I also don't want to put blinders on.

Do I really have to lose my bladder? If this has spread to other organs, is chemo and/or radiation the only answer?

Positive but righteous anger is in order right now and I am there. I haven't even seen my grandbabies yet!

What's the recovery period for this surgery? They tell me that I should have a pretty normal quality of life. I have a trip to Turks and Caicos planned for August. I'm looking forward to singing in competition in October and doing a concert tour in Greece next summer. I need to get well.

Thanks for caring,


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6 years 1 month ago #45824 by GKLINE
I am surprised you even heard what you did hear. I missed just about everything until the Dr. said "Then we'll talk hospice"

WHAT !!!!!!!!????????????

bc has a very good rate of survival. The Treatment you receive must be AGGGGressive, to say the least, and you need to find a Dr. that specializes in bc. If you think he (or she) is slowing down and taking time.....Get another.

But you should have a friend go into each Dr. visit with a note pad. The note pad should have all of your questions on it. Believe me, you will forget them when you are right in front of the Dr. The note pad is also to write down what the Dr. says to you about what is going to happen. Every time I went to the Dr. my wife had the pad. Afterward she quizzed me on what went on. left to my memory I missed 80% of the conversation.

And your Friends. Keep them in the loop. Don't expect them to do EVERYTHING for you. Some will even keep a distance away from you. Because they are afraid too. Don't feel as though they abandoned you. But you will find some friends that really step up, and ARE there. They are both your friends.... They just react differently to it all.

And finally, Do try to keep the diagnosis to the Dr. Try not to jump ahead to all of the bad case scenario's that will just kill your energy with worry. Yes it is a BIG deal and Maybe you will have Big surgery..... But quite a few of us have and we are here to let you know that we are still around. Even Me.

Oh and that need to cry..... GO AHEAD! I order you to wallow in your emotions.
FOR A WHILE. And then it's "ON to the Fight!" This is a battle and you also have to get MAD as HELL! Not gonna let this thing get me! No Way! Fight every day, every night, and Don't Quit! Now way!

How do you Like us now?
We are your Cheerleaders, mentors, sounding board, and Guides to treatment. Sometimes we are sympathetic.
Sometimes we are going to kick you in the ass.
Sometimes we are going to help you find your way to treatment.
Sometimes we will cry


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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6 years 1 month ago #45817 by ragmg
I've forced myself to keep from shutting others out and I made personal calls to my closest friends when I got the diagnosis. I'm sure that they really don't know what to say since this hit me out of the blue. It stunned me pretty badly. Thanks for does feel better to know that there's someone to talk to who I don't have to mince my words with.

P.S. I cried this morning for the first time in the middle of my prayers.

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6 years 1 month ago #45815 by CatherineH
Welcome to our forum... I can feel your pain as I read your words as they are words many of us have lived through as well. Those first few hours, days, and weeks are brutal just to put one foot in front of the other and move in any direction. It makes you feel isolated from the rest of the world... and alone... but you don't have to be. Here you are with people who completely "get it" and understand how those feelings tear at your very core.

When and how much you choose to share with your family is up to you, but the sooner you release those secrets, the sooner you won't feel so alone all the time. I understand your not wanting to intrude on your son and daughter-in-law getting settled into their new house and life... but I can assure you that all that would take a very fast backseat to you. Let them "be there" for you and don't deprive them of their wanting and "needing" to be supportive and to help you through this difficult period. Imagine what you would have wanted to do for your own mom or other loved one.

Then, when you can find a private place, go have that good cry. It really helps just to release all that pent up emotion. Somehow it clears your head for the days ahead and the decisions you will have to make.

Sending you warm hugs...

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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6 years 1 month ago #45812 by rbmc
Feeling alone. How true. Use the offer of family & friends to "be there", that's important support from a different perspective.
"Now's the time to collect information and make decisions."
Sounds like you're on the right track there of getting things done, which includes that anxious waiting period to see results and determine how to proceed. Please stop back, to ask questions, or just talk.
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