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10 years 6 months ago #29047 by rudyskier
;) KC thanks for the info, I figured it should get better as time goes on. I guess I am just a little too impatient. I've only been using the Neo for 4 and half days now.

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10 years 6 months ago #29046 by kcnorthstar
Glad to hear that you are getting out and about. I had the same control issue with getting up out of a chair. No matter how slow or carefull I was going from sitting to standing, I always sprung a leak. That problem slowly improved over the period of about 3 or 4 weeks.


Age 59
DX Jan 2006 - T1B G3
RC - Neobladder June 2006
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10 years 6 months ago #29039 by GKLINE
Rudy, I am glad to hear you are out. Life WILL return to a NEW normalcy.
I still have the same loss of control when I strain to get up or work out. But I have long since lost the embarassment of it. I am just happpy that I have so few effects from the new high tech plumbing job.
Keep up the good work!


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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10 years 6 months ago #29029 by mmc

Glad you got out a bit today. That's great to hear. Just keep working the kegels and you'll get more and more of the sense of control.


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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10 years 6 months ago #29026 by rudyskier
Just a quick up-date. Today was four weeks out + 1 day from the operation. I was feeling good and actually went out to lunch with my wife. It was nice to see things returning to normal. My energy levels have increased considerably in just the past 3 days and I am feeling stronger all the time. Still trying to get the feel for the bladder though. I have some control but it is only sporatic like leaning up in a chair to get up and all of sudden oohps. Oh well I am sure that will improve as well.

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10 years 7 months ago - 10 years 7 months ago #28974 by rudyskier
;) So I am 4 weeks out. Had my follow-up visit with surgeon 2 days ago they took some scans of the bladder injecting contrast into the bladder and showed no leakage. I had all tubes and stents removed (Whew that was an uncomfortable experience) It seems the stents did not want to come along willingly with the foley. Once out I had had a few more minutes of pain and then none.

All the pathology came back negative, cancer was only present as CIS inside bladder wall and had NOT even made it to muscle. That puts me in the 95-98% survival area. I'll take that for sure it only confirms that I made the right decision for me.

As for the reflux! It's all gone now. I don't take anything for it or for indigestion. My apetite has been slowly returning. I really enjoyed turkey, gravy, mashed potatoes and some stuffing on Thanksgiving.

Right now my biggest issue is to try and get the feel for controlling my new bladder. Since it's only been 2 days that I have had a chance to actually use it the jury is still out on that.

One more thing, I seem to have some wild fluctuations in day to day energy levels. The other day I could hardly get up from the chair and felt sleepy all the time. Not sure if this is related to getting all the drugs out of the system, trauma, or just trying to eat enough to get some more energy. I'm sure this will improve over time.

Will keep you posted on progress.

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