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caregiver needs info for after RC on Monday

12 years 9 months ago #7345 by Patricia
worried daughter.....your mom is getting the ileal conduit which is the least invasive of the surgeries. Its good that she has strong family support.. if you have any questions at all just ask us...all of our experiences vary a bit but at least we can guide you. Pat

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12 years 9 months ago #7339 by worrieddaughter
Sorry about not giving all the info. My mother is 69 and will be havinf her bladder, reproductive organs, lymph nodes removed. She will not be having a bladder reconstructed but will be wearing a pouch. Sorry, I don't know all the medical terms. Anyway, I appreciate all the answers. Surgery is Monday and I am starting to get a little anxious.

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12 years 9 months ago #7322 by Mike
Hi,

Having just gone through this myself, I can say I will be forever grateful for my twin daughters presence 24 hours a day for the first four nights. After that, they'd stay until about nine or ten at night, usually arriving around 9 or 10 in the morning. What did they do? Anything I needed...help me sit up, scratch the bottom of my foot...pull the blanket up when I got cold and it was at the bottom of the bed...constantly finding me ice chips. After a few nights I found they didn't need to be there all the time and encouraged them to go get some rest (they were looking tired).

I was in the hospital for 10 days after the RC with neo bladder.

Helping your mom and dad after she returns home with housekeeping and meals will be invaluable for a week or two. It won't be that she can't do anything, she probably won't feel like doing much.

Hope this helps...good luck to your mom

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12 years 9 months ago #7301 by Patricia
Joe...not really...the stoma nurses fully educated me on how to do everything and though i wasn't home alone..my husband was not exactly what you call handy.....i mean the toaster baffled him......so there really was no choice. He did help getting groceries and things i couldn't do as i wasn't supposed to drive for 6 weeks....he brought home some pretty interesting stuff!!!! The only change that was difficult for me was the bag covering the temporary drain in my right abdomen...like the ileal conduit bag....they sometimes were defective and leaked and it seemed like i needed 3 hands to make the change.............Pat

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12 years 9 months ago #7296 by Pepa

Well from a females perspective and not having anyone to wait on me...i pretty much did change all my tubes and cook my own food ...just a slower pace........and i didn't have to wear the stockings.
You guys have it made!! Pat

Patricia,
that is almost incredible! I would not be able to do that.
I can not imagine being home alone after they discharged me. Wow...

Congratulations on making it under such circumstances.
You're a true warrior!

Joe

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12 years 9 months ago #7286 by wsilberstein

Its interesting to note that with women who have this done the stoma nurses gear all instructions to the patient not the husband....when a man has this done they gear it to the wives. hmmmmmm..........Pat

Interesting indeed. When I woke up from my initial surgery for the bladder CA they tried to tell my wife how to remove my catheter. She didn't even want to look at it. And give me a break! In medical school and residency I catheterized more than a few patients. Why would I need my wife to remove my catheter!?!

-Warren
TaG3 + CIS 12/2000. TURB + Mitomycin C (No BCG)
Urethral stricture, urethroplasty 10/2009
CIS 11/2010 treated with BCG. CIS 5/2012 treated with BCG/interferon
T1G3 1/2013. Radical Cystectomy 3/5/2013, No invasive cancer. CIS in right ureter.
Incontinent. AUS implant 2/2014. AUS explant...

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