Month: June 2025

It was a year ago this week that I started the radiation treatments and the first round of chemotherapy. As the weather has turned warmer and the trees greener, I’ve definitely been thinking back to last summer and those daily trips to Winnipeg. I’m pleased that I’m in a very different place this summer, even if this summer is different again from every summer before my diagnosis. (Okay yes, every summer of your life is always different than the one before it, but I mean specifically that this summer I’m pooping into a bag, which is something most of us don’t normally do).

Looking back over my blog posts and the timestamps, I had forgotten already that the treatments lasted for just over a month. The side effects hung around for longer, but the almost-daily Mountains of Pills + Car Ride to CancerCare went from June 20th to July 26th. 0.2% of my life, if my napkin math is accurate, but at the time it was everything. I wrote back then about being unable to think about the future, and just getting through the days. A valuable skill that we humans possess! But, it feels weird that I’d have to refer to my own blog posts to bring back details of something huge and novel that happened only a year ago. That’s the other valuable skill, I suppose — to be able to forget and move forward.

I guess I knew about this from when our kids were babies. You’d sit up with them at night as time dragged on, and it began to feel like their little rooms were the entire world and the night would never end. Now, those nights feel like ages ago. To quote a certain podcast I listened to long ago, I’m “…left with nothing but a powerful wonder at the fleeting nature of even the most important things in life”.

So I’m learning that This Too Shall Pass. As with many of the life lessons I’ve learned on this journey, it’s something I already sort of knew. I think the trick is to remember these things the next time a difficult situation arises. Also, in this case, I want to learn grace, patience, and empathy for those who are going through their own world-encompassing struggles. Even if I think their problem is trivial or I know it will pass, I know how these situations can feel like everything, and maybe I can best help by just being there and sitting with them through it.

Speaking of radiation, my posts from that time seem to have glided over the details of the discomfort I was feeling. To tell the truth, as the treatments went on, I was in a lot of pain every time I’d go to the bathroom, and I came to dread the feeling of an impending bowel movement. Pain medication helped with the time between trips, but couldn’t remove the sharp, intense discomfort of actually going. Warm baths helped as well, and I started running one as soon as I entered the bathroom, knowing I’d be clambering into it shortly.

One of my posts mentions a “low point”, which I believe was referring to a moment during treatments when the pain was at its worst. The burning was so intense that I felt like I couldn’t operate my legs correctly, and in desperation I ended up just lying facedown in the bathroom, sobbing. This drew Lori’s attention but there wasn’t much to do except wait for the sensation to pass. I’m telling this story now because I wanted to talk about the thing that helped me get back up, and it was this image:

This is a picture taken of the computer I write these posts on. The image on the screen is a single frame from the volleyball-themed anime Haikyuu!!, depicting its protagonist Hinata, facedown on the floor. He’s in anguish, having run himself ragged in sheer frustration after a devastating defeat. Teeth gritted, with tears on his face, he’s clenched his fists. In the next shot, however, he gets back up, with new resolve to continue practicing and improving himself. It’s a powerful moment that becomes part of the end-credits montage of the show.

I was watching the series at that time as a comfort show, so I’d seen that image many times before the moment I found myself on the floor, teeth gritted and in tears. Yet in that moment of suffering, the image of Hinata came to me, and like him, I clenched my fists and struggled upward and into the bath again.

Until surgery, things rarely got that bad again, thank God. After that, I would often admit to Lori that even though I was uncomfortable or in pain, I wasn’t “lying on the bathroom floor”. I often thought of that image of Hinata as well. It wasn’t really something I drew from again after that, but sometimes unexpected things can help you in a specific moment. I’ll always be grateful to the writers and animators of Haikyuu!!, half a world away and whom I’ll never meet.

Since folks have expressed interest in the day-to-day mechanics of having a colostomy, today I’m going to write about changing your bag. There will also be a bit of a tribute to my Mom, in light of her birthday this past week.

But first, let’s talk about bag changes. I swap mine out every 3-4 days. That’s based on advice I was given at the outset, and I would not want to push further than 5 days unless I absolutely had to. This is mainly for two reasons. One is the bag’s structural integrity, meaning that they can develop leaks through normal wear-and-tear, and that’s a bad time. The other is that bags are just stuck to my body like big ol’ stickers, and that adhesive gradually lets go, largely due to sweat. Actually, the first time we talked about all this with an Ostomy Program nurse was also the first and only time a medical professional was happy with my sedentary lifestyle. She knew I’d have an easier time getting adjusted if I didn’t have to change bags as often.

So, it’s bag change time, now what? First step is to turn on the bluetooth speaker in my bathroom and get some tunes going. Something energetic and upbeat is good. Then I lay out everything I’m gonna need. I keep a travel kit of supplies in a small pouch that I take everywhere, and that kit has the good scissors, so I leave to go find it. It was still in the car, again. I put out wet and dry disposable wipes, a fresh bag, and a tube of Stomadhesive. I have other supplies in a nearby drawer as well.

I take the fresh bag, and the good scissors, and cut a hole in one side to fit my stoma. Everybody’s is different, and bags always come with these paper sizing guides so you can get an idea. They’re little cardstock sheets with a series of circles cut out, and you just put them up against your tummy to see which one best suits your stoma. There are also concentric rings on the sticky side of the bag to help guide your cut. I give myself a small margin; too tight and it’ll feel uncomfortable, but too large and you increase leak risks again. Plus mine’s kinda oval-shaped, so I work with that too. The good scissors are good because their ends are blunted; normal scissors, with pointed ends, run a higher chance of puncturing the bag before you’ve even put it on.

So, cut out the hole in the new bag, and then it’s the part I’ve been avoiding for as long as possible; peel off the old one. This never feels good; think of every time you’ve had to peel off medical tape or the like, and the hair it inevitably takes along. I can mitigate this effect by shaving that part of my stomach, and I’m told it will gradually get better with time; presumably this will be when I’ve pulled out every last hair from the area 🙁

I re-use bread and produce bags as garbage bags, so the old bag goes in there straight away. Now my stoma’s exposed, and I want to spend as little time on this stage as possible, because, again, there’s no muscle for control. If my body decides in that moment to ‘move product’ there is currently nowhere good for the product to go. This is why I was trained to lay everything out and prepare as much as possible beforehand; we’re minimizing the exposure time as much as we can. (Have messes happened in the past while in this stage? Reader, I must retain some dignity and keep that answer to myself.) I clean up the stoma area, and I’ll often use special wipes to clean up any adhesive residue on the skin surrounding the area. This stuff is annoying, and leaves a film on your hand.

Once the area’s clean and dry I’m ready for the new bag. I take the Stomadhesive and lay a bead around the hole I’ve cut in the bag; it’s thicker than toothpaste and light brown, smells weird, and acts as a kind of glue to seal the area and help keep the bag in place. This stuff is also annoying, so even though time is of the essence, it’s important to go slowly and do a good job in one pass, just because of how difficult it is to adjust a misplaced spot afterward. And if this stuff gets on your hands, ugh. Remember caking your fingers in white glue in school, so you could peel it off? Feels a little like that, only it doesn’t peel. It’s horrible to get off. In the early going I thought of buying a big bottle of that Fast Orange soap that mechanics use, but instead I learned to slow down and do better work.

Okay! The bag is now prepared, so I gently press it on myself and clamp a hand over my stoma for the next ten minutes. I was told that my body heat activates the Stomadhesive, so this is sort of sealing everything in place. Meanwhile, I try to use my free hand to clean up. (I don’t have to keep pressure on the area for every second of the next ten minutes, so I can quickly use both hands as needed).

And then I’m ready! Right now this all takes me 20-25 minutes, and it will be my routine, twice a week, for presumably the rest of my natural life. However, as I like to point out, medical technology advances every day and there may be possibilities in the coming decades that we couldn’t imagine now. Who knows?

Let’s completely shift gears here, near the end of this post. June 3rd, this past Tuesday, would have been my mother’s 75th birthday. I briefly mentioned her in the early days of this blog. Her name was Eunice. She loved reading, was an amazing cook and baker, went for walks on the hottest days of summer, and had a brilliant smile that I see in my son Avery now. In the fall of 2016 she was diagnosed with stage 4 kidney cancer, and by the end of January 2017 she was gone. Every year since then, on her birthday, I try to visit her grave with a cup of Tim Hortons coffee (small with one cream, her favorite). And I talk, and open the floodgates for a bit.

This year landed harder because of the milestone birthday, and because I’m now a survivor where she was not. I’ve thought of her often in this past year of my life — I think her often, regardless — but it was especially poignant to have been on this journey without her. I try not to get too far into the weeds of wondering Why, but when I was visiting this past Tuesday, I came to the conclusion that it’s now my job to show my kids her kindness, humility, and gentle spirit. Seeing as she’s not around to do it herself.

On rare occasions I dream of chatting with her, and I like to think that it’s just possible, through the mysteries of time and space, of life and the hereafter, that it’s really her. And if that’s the case, I told her she was welcome to keep visiting.