Most of Our Worries Are Timewasters
This article is for those who are newly diagnosed with bladder cancer and have chosen to have a radical cystectomy with an ileal conduit diversion. Take heart! The surgery and months following likely will not be nearly as overwhelming as you fear they may be. So says this 75-year-old bona fide nervous Nellie!
My brain was full of "what ifs"
I was diagnosed with stage one high-grade, non-muscle invasive bladder cancer in December 2021. After consultation with my wife and surgeon, I chose to have a radical cystectomy (and prostatectomy) with an ileal conduit. My surgery was scheduled for February 28, 2022. In the intervening months, I did what most do, even if advised not to: I Googled everything.
Unfortunately, I came to believe most of the troubling outcomes would surely be my fate. Sometimes I double-checked with the surgeon’s nurse, and sometimes I didn’t. Same with the two wonderful persons who’d been through my ordeal and had volunteered to help me. Nonetheless, by the day of surgery, my brain was full of “what ifs” and questionable strategies for dealing with the mountain of problems I was certain awaited me.
What do I need? How will I manage it all?
My fear wasn’t about the surgery itself — I didn’t fret about that for some reason. Instead, I worried about how I’d learn to care for a stoma and manage all the accessories it required. I have sensitive skin (taking off a Band-Aid leaves an abrasion), so I just knew working with the pouches and their extra-strong adhesive would leave me in constant need of medical attention: what do they do if the first stoma gets messed up?
Preparing for every possible scenario
And then there were all the supplies I read about and, I presumed, would need beginning the first day. Skin barriers, pouches, combination skin barriers and pouches, how do you know what to choose? Leg bags, really? Adhesive removers, skin protectors, sprays, wipes, a sticky, smelly lollypop for something, pastes, powders, little rubbery-like pieces that fill in gaps, belts, what is a stomagenie, how do I protect everything when I shower, night jug or bag or both, would I need a longer tube for the jug/bag, how do I sleep with all this stuff?
I requested free samples from suppliers and ordered others online; I’m sure I was the talk of the Amazon warehouse. I can’t tell you how many fanny-pack or shoulder bag-type things I bought so I’d always be ready in case I sprung a leak, something I was certain would happen, daily at least. I put a change of clothes and towels in my car and ran through in my mind the location of the restrooms in all the places I might go. I practiced what I’d say to my class of adult students should I discover a leak—"Excuse me, avert your eyes; I’ve got to get the hell out of here!” I watched YouTube videos about products and problem-solving so much I upgraded to the Premium service to avoid the annoying ads.
Being a nervous Nellie is a colossal waste of time
By February 28th, my surgery day, I knew everything, even though I wasn’t all that wise. I was a star patient in the hospital and discharged after four days. In skilled nursing, however, I developed a urinary tract infection that extended my stay a week. And, yeah, I was moderately depressed for a couple of months afterward, as some are. So, it wasn’t all peachy. However! However, I can also attest that the familiar adage is true: most of what we worry about never comes to pass. As far as the complications that did arise, they were all managed without much difficulty.
Through a predictable amount of trial and error and with advice from visiting nurses and helpful ostomy supply company representatives, I’ve learned what products I need (and don’t need). I’ve also got the barrier and pouch thing down pat. As well, I discovered my skin doesn’t mind the adhesives if I’m careful with the prep and removers. Most amazing—except for the first week in skilled nursing, I’ve had NO leaks!! (Anyone want a fanny-pack, cheap?)
My major takeaways
My takeaway that I offer to you? Don’t assume you’ll be an exception to the norm. By definition, you surely won’t be. In addition, don’t assume there may not be an effective way to address the complications you may have. Few of us are so unique that there aren’t tried and true fixes for us. And, finally, don’t forget the network of people who’ve traveled the road before you, including those who monitor and reply to posts on this website. My experience is that they can’t wait to be helpful.
And my major takeaway that I hope will serve me well with any future medical issues: Being a nervous Nellie is a colossal waste of time.
This is my story.
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