Urine It for the Long Haul...Get Used to It
(I think I get more pleasure from creating headlines than writing the whole post.)
When we had our first child, oh so many years ago, and I had to “learn” how to change a diaper, I remember going to unimaginable lengths to ensure I could get through the ordeal with a clean changing table (which was the top of the washer and dryer in one house), clean walls and of course, a clean me. For many men (at least this one) even your own child’s bodily fluids were essentially weapons-grade Plutonium with the same lethal side-effects. Even the slightest bit of “contamination” would send me into a 20-minute steam-shower with lye soap and steel wool. Don’t get me wrong. I loved the little gal/guy (we had one of each). I didn’t mind the spit up … but pee and poop were side-effects of parenting I could do without. Potty training couldn’t come sooner.
And then I got bladder cancer.
And then I got a neobladder.
And then I got extremely comfortable with bodily fluids.
At least the urine for sure.
It’s not that bad
One of the reasons I write these posts is to hopefully give people who are going to be on the same or similar journey as I have a peek into their future and let them know it isn’t that bad. I also want others who are already catheter deep in bladder cancer to know that there are others like them who are making the best of what we’ve been given. I’m not an optimist. I’m a realist. I can’t go back in time and change anything and I can’t change what will happen in the future. But I can manage real time. Right now. And so can you.
This post idea came to me the other day as I lifted up some boxes of Christmas decorations to put away and peed a little. With a neobladder, even with great daytime continence, if you’re past the ½ full mark and you exert yourself you will push out some urine. It’s a fact. So I lifted a box. Felt the urine escape. And grabbed the next box. And the next. And pretty soon I had forgotten I’d leaked a bit. On with the day. When I did go to the bathroom a bit later I remembered the little leak and changed. But for a couple of hours I was basically wearing underwear that I had peed in.
And I didn’t care
The guy who would wear full a hazmat suit with air tanks to change his own kids’ diapers was working around the house for an hour or two with damp underwear and not giving it a second thought.
(For the Record: When you feel yourself leak a bit it will feel like you dumped a 40oz soda in your pants. Trust me though - it will be more like a tablespoon. So it’s not like I was walking around squishing all day. I’m adjusted, not crazy.)
That will be you as well. You will get used to leaks and roll with them.
You will wake up some nights when you’ve been continent for months completely soaked and consider for a short minute not getting up because you’re so darn comfortable. (Pro-tip: always have a pad on the bed - forever)
You will worry about light-colored slacks, just in case.
You may have to catheterize.
You may (like I do now and then) have to measure your urine output to get an idea of how much your neobladder is holding. (Trust me - you always get some on your hands - you just do.)
In other words. Wet hands, wet pants, wet towels, are the new normal. Get used to it.
You’re in this for the long haul.
How long did you wait before telling others about your diagnosis?