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The map of the journey--Andy

10 years 1 month ago #30445 by Andy
You guys are incredible - my inspiration! Just leaving for Ann Arbor for all the pre-op appointments. Going the day before as the first appointment is real early. Of course it's snowing to beat the band, we'll just take our time. Thanks for the advice and encouragement - let's git 'er done!

Andy
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10 years 1 month ago - 10 years 1 month ago #30444 by Humpy
rudyskier wrote:

I went skiing this weekend so here I am just shy of 4 months post op and I've hit the slopes. I didn't think that was going to happen!
Rudy


Way da go Rudy!!!!!!!!! Glad to hear it!!!!!How was the bunny hill? Just kidding.
I went golfing just shy of four months post op.
I was kinda sore, but by golly I went!
See Andy, there is life after a RC!!!!!!!!!!!!!

Age 54
T1NOMX,Grade 3 Urothelial CIS (Carcinoma in Situ)
Neobladder 5/19/2009
Prostate Capsule Sparing
U of M Hospital, Ann Arbor, Michigan
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10 years 1 month ago - 10 years 1 month ago #30443 by rudyskier
Hey Andy, great attitude is what it's all about and I see you have it. I won't lie to you it is not an easy thing to go through particularly the first 2 months.

Mike's info about the fluid build up is good advice. I had it build up in the abdomen and the scrotum. The fluid makes you feel very uncomfortable it was the main reason for my reflux problems immediately following the procedure and lasted a couple of weeks afterward. I also had fluid build up in my testicles, not terrible but it all adds to the discomfort.

Also, once you are off the morphine drip and they tell you to take pain killer vicodin and or tylenol. Make sure you take it before you have the pain and keep on some sort of schedule with it. After a couple of days try to back off on it as well as that also affects the bowels. But if you need to take something for the pain (and you will) don't wait too long. I made that mistake when I first got home and paid the price. I waited until I had pain then took the vicodin, BIG MISTAKE... make a schedule have your wife write it down and stay on it ie. every 4-6 hours for a whole pill etc.

I tried to walk as much as I could even when I felt like crap. I would just get up and walk up and down in the hospital room for a couple of minutes and sit for a little then try it again. When I got home I would walk around the bedroom or up and down the hallway. The first few days at home make sure someone is there with you because you will be weak and even dizzy, you don't want to fall.

Once your home I some tips on eating as well... speak to you then.

Good luck... as Mike says do those exercises and a lot of that other stuff too!!!

Oh and one more thing as a side note... I went skiing this weekend so here I am just shy of 4 months post op and I've hit the slopes. I didn't think that was going to happen!
Rudy
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10 years 1 month ago #30432 by Andy
Mike and Duke -

Thanks for the advice and the support. I'm an information freak so everyting you tell me about is greatly appreciated. Mike - thanks for the heads up on the fluid issue, that definitley would have got my attention - fast! And as far as the prostate issue, being dealt with as often as possible :) Duke - I've heard day 3 is the tough one. I know it's important to wean yourself off the pain meds as they cause constipation. But I also know not to be a hero and let the pain get to be too much, important to keep on top of it. Any other advice would be greatly appreciated. I'm going to have the laptop in the hospital so I hope to be able to keep in touch. Maybe not the day of surgery but hopefully soon after that! Thanks again -

Andy
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10 years 1 month ago #30430 by dukel
Andy; sounds like you are just the way i was, once i made the
decision to have it done, i couldn't wait to get started. The
2nd will be here before you know it. One thing i can tell you
is when i woke up for the first three days till they turned off my pain killer i felt pretty good! Not so much after that
for the next month.
But after that over this last month every day has gotten better. I'm hoping it will go even better for you.
One other thing i will say, I've had three cancers in the last
twenty years, but i have always believed i had the easy part
compared to my wife, who had to sit there and worry all that time. So i wish you and your wife the very best.
Duke
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10 years 1 month ago #30429 by mmc
Andy,

Those exercises that Jim posted the link to....you can start those now. They help to strengthen the pelvic floor muscles which will get you continence sooner after the surgery (if you wind up with a neobladder).

Also, they take your prostate during the surgery so there may be a couple of other things you want to spend time doing before the surgery. :)

I'm sure Jim will give you lots of great post-op advice when you see him. I will just say walk, walk, walk! That gets the intestines going and that is the key to being allowed to go home (and to feeling better).

I'm not sure if I mentioned this one possible complication either. Fluid has to go somewhere after the surgery. Sometimes, some of that fluid goes to the scrotum and one can wind up with something the size of an American football there. If you notice any enlargement, use a pillow to elevate the area.

I forgot about that until recently when a relative of someone who just had an RC asked me about it. It's not anything to worry about but I can tell you from personal experience that it can be pretty darn scary if it happens and you didn't know it was something that could happen! :blink:

Best of luck on the surgery!

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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