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8 years 4 months ago #33305 by DadsRN2010
SORRY ABOUT CAPITALS. and i will no longer write ca as "CA".. thats the nurse abbreviations coming thru when u must jot down peoples historys etc..

thank u all for your stories.

surgery in 16 days.

all suggestions welcomed as i will help my father adapt to this new lifestyle with an upcoming NEO BLADDER. THANKS!!!!

**Carolyn, RN

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8 years 4 months ago #33296 by Nix
I like that, George :laugh: from now on when I am writing about bladder cancerI will print very small :laugh: :laugh: :laugh:

Nancy

PS - I think you are funny :laugh: :laugh: :laugh: :laugh: :laugh: :laugh: :laugh: :laugh:

Nancy

Nancy S
Ta CIS
dx Ta 11/06
dx Ta CIS 10/07

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8 years 4 months ago #33295 by GKLINE
Carolyn

I know this is a small thing but, I have an aversion to giving cancer any kind of positive respect. I know you are going to punch cancer out of your fathers life, but don't give cancer any kind of respect by using Capital letters. cancer deserves no such respect. It is the worst kind of criminal and any form of salutation other than... cancer (smallest of small letters) gives me great pleasure in kicking the crap out of it! :laugh: :laugh: :laugh: :laugh: :laugh: :laugh: :laugh: :laugh: :laugh: :laugh: :laugh:

Don't worry. I think I am so funny to myself!

George

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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8 years 4 months ago - 8 years 4 months ago #33287 by dukel
Carolyn;
Sorry to hear your dad needs surgery, but you have came to the right place for info. If you search the threads on this site, you can find ones to read from pre-neobladder to as far
post neo as you care to follow. First thing is your dad is very fortunate to have a RN like yourself to help him through
this. Myself, i'm 63 and had my neo surgery about eight months ago. Post surgery, not to bad till they removed my
epidural on day three. From that point on i took no pain meds
cause i wanted my digestive track to start working. This took
about eight days. As you know as a RN that is very important.
The next month for me was the toughest part, pain getting up and down, my wife helping change the bandages and flushing tubing, etc. I think from this point on, thing start to get better. By month 3 i was nearly back to normal or the new normal. As Mike said the kegels are very important to getting control of your new bladder. And as you mentioned hydration is a must. I was never good at drinking water but i have adjusted. You asked about pressure/fullness. All i can tell
you is what my experience has been, i'm sure others will
chime in. After just the first few weeks i have felt the
fullness almost as i did before. The one exception to this
is deep into my sleep cycle. That is where the kegels and
not drinking much before bedtime come in!
Wishing you and your father the best.
Duke

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8 years 4 months ago #33260 by mmc
Even with the DaVinci, if this doc isn't doing 2 neobladders a week or so, you want another doc who does.

Doctors are split on the open vs robotic. If it is robotic it needs to be someone with extensive experience with the robot.

The kegel exercises and some other exercises are key to strengthening the pelvic floor muscles whic is key to continence and emptying the neobladder fully.

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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8 years 4 months ago #33256 by Patricia
Carolyn,
Stonybrook has 3 urologists..one in prostate specialization ..one does not mention reconstruction and all have office locations which means that they do not get the volume of bladder cancer patients that the high end cancer centers do. You have Memorial Sloan Kettering right there with 7 people who specialize in bladder cancer and one of them the grand poobah of bladder cancer Dr. Harry Herr and a multidisciplinary team to carry him through every stage not to mention top pathologists in the country.
www.mskcc.org/prg/prg/bios/54.cfm
Also Dr. Bochner is highly regarded
www.mskcc.org/prg/prg/bios/616.cfm
Also Dr. David Chan just took over as chief at Long Island Jewish Hospital..he was one of 3 top docs at Hopkins in the bladder cancer department.
www.northshorelij.com/NSLIJ/David+Chan,+MD+New+Vice+Chairman+of+Urology
If your thinking of the DaVinci your doc better have at least l00 under his belt or he's still practicing.
Bladder cancer is soooo highly specialized i would reconsider if insurance allows to go to a high volume center and one that is at least ranked highly.
Pat
had to copy and paste this from the other category as i saw this secondarily. I know you're going to hate this reply but do look into this. Things are moving quickly and anyone who is extremely experienced with the DaVinci can do it in less than 5 hrs. A second opinion is always a good idea...you know that as a nurse.
pat

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