Does Your Neobladder Know the Clocks Changed?

Funny thing happened on the way to winter. We changed our clocks back to “normal” time.

Recently a small part of the world pushed their clocks back one hour. It was the end of daylight savings time. For the normal world it isn’t a big deal. In fact, since it happens on a Saturday night many revelers see it as one more hour of partying! I know my younger self thought that.

My bladder-enhanced, post-cancer self has a little problem with it.

Bladder removal for my stage 2 cancer

For a good number of us with muscle-invasive bladder cancer a “radical” cystectomy is a predictable outcome. That is the fancy way of saying removing your bladder. I’ve been told it is the gold-standard for T2 type cancers where there is risk it would spread inside your body. Obviously, rerouting where the urine goes after you lose your bladder is the next “to-do” on the illustrious BC (bladder cancer) list.

Getting a second opinion about my urinary diversion options

When I was first diagnosed my doctor suggested an ileal conduit urinary diversion which would mean an external bag. After that meeting, I had resigned myself to that reality. But a good doctor friend of mine suggested I get a 2nd opinion which I did. I actually got three opinions. Two of the opinions suggested a neobladder vs. the one for the bag. I liked the majority opinion, so that is what we did.

Setting the “P” time

With a neobladder (a “fake” bladder made out of small intestine) you need to make sure you don’t exceed the maximum “capacity” of the neobladder which is about 400 ml. If you do, you can damage it, or cause some other uncomfortable long term problems. The average person produces about 100 - 150 mL of urine every hour; therefore, a neobladder needs to be emptied about every 3-4 hours. I set an alarm on my phone to go off every three hours.

Getting a better of idea of when it's time to empty my neobladder

Sometimes, after I go, I forget to reset the alarm and then I end up scratching my head wondering when the last time I went was. See how much of a hassle this cancer stuff is?! After 5 years, I can sort of feel a difference in my abdomen so I know if I’ve got a full neobladder even if the alarm hasn’t gone off yet. It’s a weird feeling - not ever knowing if you need to use the bathroom or not. Another “new normal” for the cancer squad.

Timing is everything

They say good comedy is tragedy plus time. Who knew comedy and cancer had so much in common. Time and a neobladder go hand in hand. During the day it’s not really a big deal because if you can’t remember when you last went you just go and then set the alarm and start over.

But...the timing issue happens at night too. I can’t sleep 8 hours straight (or 6 or 5). I need to be try to be sure I don’t exceed the 400 ml limit. Some folks can’t handle waking up like that so they sleep through the night and wear an adult diaper or a pad. Some men can use an external nighttime catheter. I just set the alarm, stumble to the bathroom and back with barely a hitch. I checked with other guys my age with normal bladders and they can’t make it through the night without getting up to pee so I figured this is a behavior I would have had to deal with regardless. They blame it on their prostate. I can’t do that. I don’t have one of those anymore either!

Daylight Saving Time confusion

But the “fall-back” part of daylight savings time gets me every winter.

Setting your clock back occurs at 2:00 am. So if I go to bed at say 11:00 pm - and set my alarm for 2:00 am to go to the bathroom - and then the clocks go back - 2:00 am actually becomes 1:00 am which means the alarm goes off after 4 hours not 3. Which means I may have to change some nightwear. I do put a pad under the sheets as insurance so I’m covered regardless. But I’m so sleepy when I get back to set my alarm for the next “go time” I’m never quite sure if I should set it for 3 hours, 4 hours or 2 hours. I’m sleepy, it’s late, the clocks change automatically. I’m SO confused. Sometimes it doesn't pay to have cancer.

Don’t let anyone tell you bladder cancer is easy. It can be brutal. Especially around the time of year we need to adjust our clocks.

See - tragedy plus time. This is funny no?

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