Lastest Testing of being off the Cath

After resting my bladder neck for a full week, as my dr. advised, I did as instructed and turned off the cath and went "natural", didn't make it even a full hour.  Too much pain, and pressure, hurt terrible.  So, quit, as dr. advised this time, and back on the cath 100%.

Sitting here, aching pretty bad down there, despite being on a pain tab.  Very very disapointed, after having went through 2 surgical corrections 6 weeks apart, and 2 periods of recovery where I was wearing 2 catheters at the same time  (no way to really explain how that feels unless you experience it, and I trust no one ever does).

I see my uro/surgeon next Monday, won't be any more testing in between.  He is wanting to look up me again with the scope, under heavy sedation, but if hurt as bad as I do right now, that's not going to happen.  I believe that most of the issue right now, is still post-radiation swelling and damage to the area.  One version of what will happen is simply nothing.  Swap out this SP cath for sanitary reason, of course, and not poke around or doing anything invasive down there for another 3-6 months to see if I can get some natural healing.

David in SC

April 1 will make six months on the SP, never would have dreamed of that.

David,

I would agree that freeing Willie of the cath, and letting it rest would certainly sound logical. The only question is, will the scar tissue continue to grow, and make any future repair attempts that much more difficult ?

I realize that is and unanswerable question, just a musing on my part.

Sorry about the failure, good luck on the big decisions that need to be made. Maybe a motorcyle would help things ! GFMPH

David, sorry it hasn't gotten any better. Letting the radiation damage heal might do the trick. Hope so. So far so good on my recent surgery. Still a good stream, but incontinence is not getting better. I'll just wait it out and hope for the best. Guess you are doing the same. Squid.

Hey David, was hoping for better for you this time. I was wondering when you talk of the radiation damage was this due to too much of a dose or bad aiming or just a bad reaction of your body? I have learned alot from your postings and was wondering about this. Tim

David, I can feel your disappointment and your pain. My heart goes out to you. It just doesn't seam fair that you have to go thru all of this. All I can do is hope and wish that with additional treatment your situation will improve in time. I know you are a fighter and will not give up.

I'm just hoping that things will improve for you soon.

Magaboo

subic - sorry about the leaking, but glad you are flowing fine, not sure which is worse. good luck on your end

deerhunter - thanks buddy

t-dog - kind of hard to say, but i believe its all 3 things, the dose might have been too strong to radiate in such a deep, narrow area (my uro's speculation), i already had a long history of bad reaction to radiation prior to this. From more than 10 years ago, my rad guy told me that people that tend to get sunburned real easy and had low tolerance to heat in general, often had problems with radiation, and that was me all over, so perhaps there is some rhyme to this.

jake and mag, thanks guys - have no intention on giving up, just have to keep changing the game plan to fit my current reality


jeff, thanks, my dear cajun brother, its not some life's dream to be stuck on endless catheters, trust me, but in the bigger picture of things, there are many people dealing with much worse health matters than being on a catheter. Obviously, if I were free of it, wouldn't be having the spasms, and wouldn't be having all the other pains related to long term catheter use. I just hope this doesnt turn into an "forever thing".

david in sc

david -
I think you do deserve a well needed rest from the testing and procedures and as you put it - let your body heal...
-maybe that motorcycle would be a good thing for the doctor to prescribe for GFMPH - but have your wife as the driver and you sitting comfy in a sidecar? That is what Steve plans if I ever talk about getting a motorcyle.

-best motorcyle t-shirt I've seen was (printed on the back) - "If you can read this, the b**ch fell off"
(no disrespect intended to anyone)

vroom vroom hugs
BRONSON

Steve, I am still on stand by for that, I wasn't expecting to be on a catheter still here nearly at the end of March, the program and exercises were going to be very limited for me while I still have it. Certainly plan to as soon as I am able.  And it is a cancer rehab program, not specifially radiation related, to build strength and to help combat fatigue.

Thanks much ,Billy Mac. Not saying that's a final decision, will wet until I meet with the dr next Monday.

Michael, thanks too.

Hi David,

Has the radiation oncologist said anything about your further complications? I was under the impression that she was going to make sure there wouldn't be any collateral damage to the bladder neck area during the treatment.

Post Edited (Squirm) : 3/22/2010 9:48:34 PM (GMT-6)

Squirm, that is what she said, and probably why at first, when I was reporting pain during and after daily rad treatments. After it was all over, and only after my uro/surgeon intervened for me, did they change stories and admit that what I was reporting was directly related to the radiation itself. Common, no, but more common than some think.

Wigs, appreciate your post. You offered some interesting ideas and alternatives. Will make a note of them to add to my note when I see my uro/surgeon on Monday. Sorry you have been through what you have too, its no fun.

My dr. believes in changing out the SP caths in the 4-6 week windows, as it cuts down UTI's from developing. My wife as a nurse, working with a lot of elderly, says they change every 4 weeks to be in compliance with DHEC regulations.

Thanks, Ed. Its just a shame to be in this endless loop that I have been on for so long now. I have great reserves of patience for most things in my life, but I admit, starting to show signs of wearing down from all this going on.

As I have said before, if I can see even the slightest hint of hope post savlage radiation of slowing down or beating this PC beast, then I can look back and say its still worth it all.

Meanwhile, I just try to deal with it one day at a time. Not sure there's much more a person can do than that. Always appreciate your kindness though.

Thanks Dallan, got to keep something going there.