Every. Single. Day.
It’s been 5 years since my diagnosis. It seems like yesterday.
It seems like today.
Because it is.
My cancer was revealed to me 5 years ago and though I’ve been through chemo, surgery, kegel training (who knew that was a guy thing too?) and learning to throw modesty to the wind when it comes to dropping my pants in a doctor’s office (or elsewhere, but that’s a post for another day.) Don’t get me wrong. I have had an almost “ideal” result considering the complexity of the disease and its various fixes.
I’m sure you’ll see posts and comments about all the things that can go wrong with bladder cancer. There are a lot. But don’t fret. For every one of those negative stories there are at least two or three like me with pretty positive outcomes. Given my experience I should be the poster child for bladder cancer - but I’d need to be a bit better looking (who am I kidding - A LOT better looking.)
But here’s the thing. There’s the physical. And there is the mental.
Physical I’m a success story.
Mentally it is different. It is a process.
Anytime you get a big piece of news like “cancer” - your brain gets rewired. But it’s normal, expected and you find a way to deal with it.
“It’s almost like it never happened.”
That’s what my wife said a few months back.
My scars are fading from the surgery. I was already pretty bald prior to chemo but it didn’t take the rest of my hair on my head but I lost most if not all the hair on my legs and arms. Weirdness. That’s cancer. But my wife was commenting on the fact that on a day to day basis she doesn’t really see the evidence of “our” ordeal.
As we go about our days it’s pretty much the way it was five years ago. There are no artifacts of cancer or any illness lying around the house. No medical equipment. No ramps, no oxygen tanks, no special handles in the bathroom that many houses have when someone has had a medical issue. Sure I take a few more pills than in the past (truth - only one pill is the result of cancer the others are for all other stuff I found out about once I got cancer and started taking better care of myself - again another post.) But from my wife’s point of view it’s pretty normal.
But for me, it is different.
And if you’re reading this it will be different for your as well.
Not bad. Just different.
My wife followed her previous comment with this question…
“Do you think about it very much?”
Yeah... I do.
Every. Single. Day.
From the outside it isn’t evident that I’ve had bladder cancer. I opted for a neobladder diversion so there are no external clues. I don’t think people at work even know. If someone was paying really close attention they might notice I always excuse myself from meetings at either 3 or 3.5 hour increments. (Can’t let a neobladder get too full!) Other than that… not much evidence.
But inside my head it’s a mess. Don’t get me wrong. It’s not a disaster. Just messy. Everyone has their own tolerance for change. Me - I’m pretty good.
But I still...
- Think about bathroom locations more than most.
- See my emergency clothes in the trunk of the car in case I do leak.
- Worry every time I want to go to the bathroom that I won’t be able to - that the mucus a neobladder creates might gum up the works.
- Think about how much liquid I drink during the day (and especially leading up to the going to bed.)
- Get a bit anxious if I need to sleep over at a friend or relative’s house because I might have nighttime incontinence.
- Take a half-second extra to sit up to really clench those kegel muscles so I don’t inadvertently dribble.
- ALWAYS check the bowl for blood just in case.
- Have to put that “C-word” on every freakin’ medical form in the world.
In other words, I think about it all the time.
And that’s okay. It is, as they say, the “new normal.” I’ll admit there are some days where I only think about it when I go to the bathroom. Which is about every 3-4 hours. I guess that's still a lot.
Every. Single. Day.
Have your views towards bladder removal changed since you were diagnosed?