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Boston Consult Tomorrow

7 years 9 months ago #42803 by CatherineH
Hello Shirley... I am so sorry to hear of your husband's diagnosis. Please NEVER feel bad about saying you are tired because we understand the exhaustion having or caring for someone with this terrible disease brings. That is not complaining... it is just a statement of fact.

I hope your consult brings new direction and information for you to work with. Please let us know how it goes, and know this is a safe place to share your own feelings and frustrations, as well as your husband's. My very best wishes to you both...

Best wishes... Catherine
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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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7 years 9 months ago #42801 by shirleynh
Thank you. It's helped reading through some of these threads and reading from people that are in the same situation as we are. I'm very thankful for the compassionate, caring oncologist that we currently have and look forward to what tomorrow brings us in Boston. My husband actually records everything the doctors say and we listen to it a couple times when we get home to make sure we understand everything that's been told to us. I'll let you know what happens tomorrow and sincerely appreciate your feedback - I feel less alone. Thank you.

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7 years 9 months ago #42794 by Cynthia
Your post deserved it own thread so I have moved it.

Never feel bad because you are tired this is very hard on you also. I know that going through treatment and surgery that I did not always notice how hard it was on my husband. He had to take care of the day to day and take care of me on top of it. Never forget you have to take care of yourself or you can not take care of anyone. Is there anyone that give you a break to just take a nap?

I am sure you will have a lot more questions after your appointment tomorrow. Take a notebook and take notes it helps us all to do that there is just to much to take in at one time. Let us know what you find out and know we are here for you.

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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7 years 9 months ago #42793 by shirleynh
My husband has bladder cancer which has metastasized to his bones. His L2 and T7 were affected and treated with kyphoplasty. He also has a couple fractured ribs. This all began at the end of May when he went to his urologist because he detected blood in his urine. A TURP was performed and another was planned but never came to fruition because before the date for the 2nd TURP came it was already dtermined that the cancer had spread to his bones. We have an oncologist and all she has been able to do up until now is help manage his pain. He was in the hospital for 6 days to accomplish pain management. Before he left he had a post-a-cath installed in preparation for chemo. The oncologist suggests Gemzar and Cisplatin and has gotten us an appointment at Dana Farber in Boston tomorrow. This oncologist that we're going to meet tomorrow conducts clinical trials so we'll have a head full of info and questions at days end tomorrow.

He's home right now and I'm keeping him as comfortable as possible - but he is in a ton of pain. I'm medicating him every 2 to 4 hours and feel as though I'm walking in my sleep myself. That's selfish of me to complain of lack of sleep when he has a much bigger problem at hand. He spikes a fever nearly every day - is that normal? The did labs on him at the hospital and it did not show anything that would cause him to have a fever. It usually happens every day and reads 103 - 103.5

I'm anxious for tomorrow - to talk to someone that can give us hope or at least direction.

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