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Dad had Radical Cystectomy

7 years 4 months ago #42076 by jack1956
Hey Mike! Good to be back. This week I feel like i've only been hit by one truck instead of two!! :)

Will be glad to put my experiences down for others to see and use.

Put it together ovr the next couple of days.

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7 years 4 months ago #42075 by mmc
Hey Jack! Welcome back.

It would be nice if you could post a new post in the invasive section that talks about your experience. For some of us here it has been quite a while.

Having information from folks who are just out of surgery and the early stages of recovery is helpful (as you know) for folks.

Did you walk a lot? How long were you in the hospital, how are you doing now, etc. You know...all the stuff you wanted to know before you went and and tips on getting better faster that you did or didn't do.

Thanks and GLAD TO SEE YOU BACK ONLINE!!!

Mike

Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results....distant mets
2/2014 ct result...spread to liver, kidneys, and lymph...

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7 years 4 months ago #42074 by DebiLMT
Thank you Jack. Hoping all is going well for you following your surgery. I will tell my Dad about this forum and let him know there are others that have gone through this that are willing to share their experiences with him.

I will be seeing him today.

Heal quickly.

Debi

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7 years 4 months ago #42071 by jack1956
Hello All,

I am back among the functioning people again. Whew!!!!! That was a tough row to hoe!!!

Don't let your Dad be alone to too long. He will need help and support from all that love and car for him. If he needs someone to talk to, he can get in touch with me and I would be happy to help him along. I just went through my RC on 16 May... so I think I can give him some fresh viewpoints and help keep him positive.

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7 years 5 months ago - 7 years 5 months ago #42001 by DebiLMT
Thank you Mike, Mark and George,

You are absolutely right that the clot is a very dangerous situation. Our family is all too aware of those dangers. Several of my family members have a genetic clotting disorder that increases the risk of DVT and stroke. We lost my little sister when she was 26 because of it. I do not have it but my other sister, my dad, my uncle, several cousins and my niece and nephew do, unfortunately.

He has been put on Coumadin and they bridged it with Lovenox until he was at therapeutic levels. They had him on heparin after surgery but because he had never gotten a clot before they felt he was safe without blood thinners when he was discharged from the hospital. Well now that has changed and I am sure he will be dealing with it for quite a long time.

He is frightened of the clot traveling to his lung or brain, which is a very real risk.

The good news is, that he is getting his appetite back, and seems to be able to keep himself hydrated and is starting to feel better. His mental outlook appears to be improving. But this is definitely a huge change for his life. It is a heavy load.

He certainly hasn't given up and has been willing to do what is needed to fight for his life. I am inspired by him. And by all of you.

Debi

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7 years 5 months ago #41999 by upnorth
Keep us posted. We are here if you need us.

Mark

Age 55
Diagnosed BC 12/20/2011 Ta No Mo 0a Non-Invasive At age 48
"Please don't cry because it is over..... Smile because it happened!" {Dr. Seuss} :)

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