Skip to Accessibility Tools Skip to Content Skip to Footer

Coming Home

Sitting in my hospital room, I couldn’t wait to get home. I envisioned myself back at home, as I had been before the neobladder replacement surgery. I think that, somewhere deep in my subconscious, I expected things to be that way again as soon as I got home. I believed that, somehow, simply walking through the door would transport me back to that time and the person I had been before cancer. But that wasn’t what I came back to.

I’d pretty well been gutted like a carp. They took a lot of stuff out of me and cut a pretty good-sized hole to do it. I suspiciously eyed the staples holding the incision together. I couldn’t shake the feeling they might give way at every cough, sneeze, or jostle, and spill what was left of my innards onto the floor in front of me. I was under orders to not lift anything, and I took them seriously.

It was hard to watch my wife do everything

Mrs. Sharon, my beautiful wife, had been with me every moment of this ordeal. She stayed with me in my hospital room and drove me home when I was released. Arriving home, she gingerly helped me hobble to the couch where I sat, holding my stomach with my hands to keep my insides… well… inside. That left it to her to do everything else. I watched her break a sweat as she tried to maintain the pace, bringing in stuff from the car, cleaning out the cat pans, getting supper ready, and trying to keep the house in order. These are things I would normally do, or at least help with. It was hard to just sit on the couch and watch her run herself ragged. But any attempt on my part to get up and help was met with a stern stare and firm admonition to sit my tuckus right back down. She’d put too much effort and money into to getting me fixed up to let me break something by ignoring doctor’s orders.

With her pulling solo duty, a few things didn’t get done. As we headed upstairs to bed, there were dirty dishes soaking in the sink, luggage sitting in the living room, and laundry piled on the washer. We also never got a headcount on the cats.

Getting a headcount on the cats

We’d left them with enough food in the feeder, water, and litter pans to last while we were gone. We closed off the rooms we didn’t want them to get into, then headed off to the hospital. One rotund ball of striped fur had been very thin when she came to us. Mrs. Sharon named her Skinny Minny. It was accurate in those early days, but it had been years since she could fit into her prom dress. I’d taken to calling her Fatty Patty. It’s amazing she could get that much fat moving so fast so quickly, but she could. And she’d picked the worst possible time to do so, dashing unseen through a door that would be closed for the next seven days.

Opening the door to our bedroom, anticipating blessed slumber, we were startled as a much more svelte Skinny Minny shot between our legs in a mad dash for the water dish and feeder. She’d been trapped in our bedroom for the last seven days without food, water, or a litter pan. Food and water she just had to do without. The litter pan, though, well that was a different story. She’d found, what was I’m sure to her, an adequate substitute. It quickly became obvious we would not be sleeping in our bed this night. With a sigh, we moved to a guest bedroom and our second bed that evening.

Skinny Minnie the cat curled up in a ball

Trying to start my new evening ritual

We’d acquired a Yorkie puppy the week before I went to the hospital. Friends kept him for us and had brought him home a few hours before we headed to bed. Thanks to a new friend I’d met at the hospital, Mr. Incontinence, we had plenty of bed pads. We stacked a couple of them at the foot of our bed as the bed for Binky, our Yorkie puppy. I left Sharon and Binky snuggling in bed as I headed to the bathroom for what would become an evening ritual for the next few weeks.

Moving to our third bed for the night

I had more bags and tubing attached to me than you’d find on a hot tub. Every evening, I had to change bags, clean tubes, and wash myself where stuff was glued or taped to me. As I was concentrating on this task, I heard a distressed Sharon say, “BINKY! Oh no!” She had stepped away from the bed for another blanket. Binky had stepped off the pads for other business. (SIGH!) On to the other guest bedroom and our third bed for the night. Not how I remembered things before the surgery.

Home was no longer the same place

Home was no longer the same place where I had been strong and normal. It was still home, a place I loved, and the place where I found strength and stability. But I was not the same man who had lived here. If I was different, I could feel my home, and my former self calling to me. This was where I would find the path back to the man I had been.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The BladderCancer.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Mac Howard moderator
    3 months ago

    Guy,
    Good thing you had plenty of spare rooms and beds. Maybe you should cover one with plastic until you and Mrs Sharon are ready to turn in for the night.

    It sounds like you are both adapting and sharing this journey. Good for you!

    Mac (site moderator)

  • Faye
    4 months ago

    What is the PD-L1 test, and how long has it been in existence?

  • Sarah Wallin moderator
    4 months ago

    Great question, @faye. The PD-L1 test is done to see if a patient might benefit from immunotherapy treatment that blocks the PD-L1 proteins from disguising cancer cells. You can read more about PD-L1 proteins and immunotherapy here: https://bladdercancer.net/treatment/immunotherapy/.I'm not sure how long the test has been in existence. Because it relates to immunotherapy, I would guess that this testing for bladder cancer is relatively recent (immunotherapy drugs were approved for bladder cancer starting in 2017). I hope this helps to answer your question! -Sarah (BladderCancer.net Team Member)

  • Poll