Tired of Bladder Cancer - Or Just Tired?
All this staying at home is eerily reminiscent of my recovery from my radical cystectomy, prostatectomy, and neobladder installation. Hard to believe what we’re going through now is taking longer.
I had my surgery 7 years ago in mid-January, and by the beginning of May, I was walking on Poststhe beach.
Four surgeries in one
Between January and May, I was pretty much house-bound. I didn’t realize it at the time, but surgery for bladder cancer and neobladder isn’t as easy as removing a splinter. If you’ve never read about cystectomy with neobladder, the surgery is really 4 surgeries in one.
- Removing the bladder
- Removing the prostate
- Removing some of your ileum and using that for creating the neobladder
- Installing the neobladder
That’s a lot of work in one go. I went into the operating room around 8:00 am and was in the recovery room around 5 pm. (Always remember - your mileage may vary - so this is just my experience.)
The first few days at home after surgery
It took about 5 or 6 days before I could go home and while I was able to walk around and take care of myself to a degree, things were pretty tender. Even though I had the surgery robotically, I still had roughly a 6” incision from just below the navel down. That incision cuts through the main set of abdominal muscles most of us use every day. I wasn’t ready to do any sit-ups or crunches when I got home (for the record - I couldn’t do too many before that either...). Not to mention a few drainage tubes and a catheter to contend with. All of that hardware and my general reduced mobility meant I spent a lot of time in a straight-back chair watching TV and eating sherbet. Don’t ask me why but after my surgery I craved sherbet.
All of that said - I was very sluggish and tired after my surgery.
Who wouldn’t be?
But I was also mentally exhausted.
If you think about it, after surgery for bladder cancer - you are sort of “done”.
Surgery is typically the last thing in your treatment journey.
The first step for many is neoadjuvant chemotherapy to downstage the cancer and remove any potential cancer “floaters” in your system, and then you have the surgery to remove the bad stuff and get your replacement equipment all set up. After that, it’s all about maintenance and checking now and then to make sure all those interventions worked.
You really only have one more thing on your to-do list --- heal.
Focusing on healing after weeks or months of anxiety
So, for many of us who followed a similar treatment journey, we now don’t have anything to be anxious about anymore (except your ongoing CT scans - but that’s a different story). All that time leading up to the surgery kept you sort of “amped up” and anxious. You were planning, scheduling, getting prognoses, and updates. Now you don’t have all that stuff going on, so you don’t have those ongoing elevated adrenaline levels.
So you end up having an adrenaline crash.
Your mind AND body kind of shut down.
Net-net. You are dead tired.
And that is okay. You’ve earned it. Heck - you just beat cancer!
Just don’t give up
But for every positive there’s a negative - it’s how the universe works right?
Like that infamous saying - “when you stop to think don’t forget to start again” - when you stop to heal, don't forget to start getting active again as soon as you feel up to it.
You can’t sit around and eat sherbet forever (hint: experience talking). Because you’re mentally and physically wiped out, it will be very easy to remain sedentary and it will take effort to get moving.
But do it. Get moving. You wouldn’t want to have gone through the rigors of chemo, the pains of surgery, and the mental ups and downs just to end up a couch potato.
So, when I’m asked if cancer makes you tired? I say yes and no.
Yes, it will take a physical toll on you, draining your energy. The cancer itself, the chemo and the surgery are pretty hard on our frail human bodies. The ups and downs of the mental journey are hard on our fragile egos and psyche.
Cancer will make you tired. Recovering from cancer will make you tired.
But living after cancer will give you the mental and physical energy needed to move on and be what you are supposed to be. Alive!
Don’t sit around eating sherbet.
Have you felt misunderstood as a person living with bladder cancer?