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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.

My wife’s aunt suggested that I could take reader questions about my ostomy or whatever else I’ve written about thus far. I think that sounds great, so if you have a question you’d like me to write about in a future post, you can:

• message me on Facebook or Instagram
• leave a comment on this post
• send a letter via electronic mail (e-mail, they’re calling it) to npfehr [at] gmail [dot] com
• or I guess just ask me in person!

One thing Aunt Bev had wanted to know herself was about dietary requirements these days. Were there definite do’s and don’ts, or had they changed since before having a colostomy? I looked back on this blog and it looks like I wrote about some stuff we were trying in the weeks after I got home, but not much after that.

Generally speaking I am still working with the advice my dietitian gave me last year; avoid heavily processed or cured meats due to nitrates and their link to increased colorectal cancer risk. Red meats are a ‘sometimes’ food, so as a household we are still in the habit of mostly eating chicken or plant-based proteins, but I’ll definitely have a hamburger here and there.

Post-surgery we had read a lot of advice about different kinds of foods to focus on or avoid with an ostomy, but it turned out that was a bit of overachieving on our part. When I spoke about this to the Ostomy Program nurse, I was told that a lot of online dietary advice is for people with Ileostomies rather than Colostomies. An Ileostomy is higher up, exiting from the small intestine instead, and I’m told they are more finicky and difficult to manage. The intestines have had much less time to do their intestiney things when food exits. The nurse reassured me that following the ileostomy dietary restrictions would certainly not harm me, but it probably wasn’t necessary in the long term.

Turned out they were right; looking back I think it mostly just took time for my guts to heal and settle down from major surgery, rather than reacting to any specific thing I was eating or drinking. That said, the things that upset my tummy before, like large quantities of onions, dairy, or watermelon (as it turns out this week) will still upset me now. For the most part, these days I do not worry about what I put in my body beyond my general health and the cancer risk guidelines I mentioned earlier.

I will admit — Sorry Kim! — that the dietary advice to avoid things with increased cancer risk seemed like too little too late at times. I only got this advice after I was already diagnosed, and wouldn’t it have been more beneficial ten years earlier? Why am I trying to mitigate my cancer risk when I’ve already been diagnosed? Why close the barn door after the horses have already escaped, to coin a phrase? The rationale at that time was that we were giving my body its best fighting chance, instead of continuing to pile on the things that had gotten me in trouble in the first place. I didn’t always feel like it, but I went with it.

Continuing to follow these guidelines still feels a little silly, because now I’m like: “yeah, but I already DID the whole cancer thing, and we fixed it.” As though there’s no way that particular problem could ever come back. As though cancer has a Double Jeopardy rule and the same kind won’t harm the same person twice.

I know this isn’t rational to think, and I’m going to keep trying to do right by this body of mine. But, I’m sure I’m not alone in getting through a difficult medical situation and feeling as though that particular problem is done and dusted forever.

I’ve had this colostomy deal for three whole months now and, as far as I can tell, I haven’t written about farting at all. That ends today >:(

Rude content warning: this post is about farts.

So, yes, I still get gas and I still fart. But (hehe), there are two major differences now. The first is that the expelled gas and smells get captured by my colostomy bag. The bags I currently use have a small charcoal-filtered vent at the top, which helps to keep the bag from ballooning up and ensures that no smells emanate from it. It works pretty well, but occasionally it can’t keep up and the bag balloons up anyway. This feels weird and not nice, so it’s necessary to vent the bag.

That’s done by opening the ‘drain’ end of the bag, holding it up so nothing else gets out, and kinda squeezing the excess air out. And honestly, the smell is brutal. It is punishing, and it lingers. This makes sense when you consider that venting a bag is actually like farting four or five times simultaneously. I try never to do it when anybody’s around; otherwise I’ll find a well-ventilated but enclosed space (like a bathroom) or, now that the weather’s nicer, just go outside for a moment. Once, Lori walked into the living room at least ten minutes after I’d vented and asked me if one of the pets had pooped behind a couch or something.

That’s the first major difference between farting before and now. The other major difference is that I no longer have control of when or how they happen. The typical human exit point for gas has a muscle to work with, and my stoma does not. As a result, I no longer have the option to hold things or otherwise be discreet; my stoma can and will interrupt my day with fart sounds as loudly and as frequently as it wants. At times I can feel a fart coming just before it happens, but otherwise my stoma seems to have a mind and comedic timing all its own.

(Yes, I can make dietary changes or use over-the-counter drugs to mitigate the gassiness; generally it actually hasn’t been so bad or embarrassing just yet. On the other hand, that one customer service worker renewing my driver’s licence is probably still wondering if I completely soiled myself in front of him. Neither of us commented on the horrible fart sound when it happened, and to his credit, he kept a completely straight face)

My plan going forward is to simply apologise and say “I have a medical condition” in most situations, and leave it at that. If I’m in the prolonged company of people who don’t know me so well, as I was last Tuesday, I’ve rehearsed a slightly longer explanation that should serve to get ahead of the awkwardness. Actually, that particular night, my stoma was well-behaved and only quietly burbled a few times. However, I wanted to make a good impression and felt it wise to just take a moment and address things. Part of my longer explanation is also to say a.) that it’s not a taboo subject for me and b.) folks are very unlikely to offend me with questions or jokes.

(I hedge a little there because people are creative and I’m sure someone could find new ways to hurt my feelings about this issue, if they really tried. I do not want them to try.)

The ostomy program nurses warned me about all of this, but it’s another thing again to experience it. Oh, actually hang on, I just wrote that it hadn’t really been embarrassing, but my stoma did get a little rowdy during a play we went to in Winnipeg. It was mid-show and not really the moment to explain myself so I just tried to smother it in layers of clothing plus a jacket. That felt bad. It quieted down, but I spent the rest of the show ready to bolt for the door if I felt the pressure build again.

Overall I’m still grateful to be here, even if it means my body will randomly make rude noises. And I’m grateful that most people have responded with good humour, because we’re all human and farts…are pretty funny.

A Guest Post by Lori Fehr

A little while ago, Nathan asked me if I would do a guest blog post. Since then, I have debated what I would write about. I thought I could share about what it’s like to walk alongside someone through a difficult time when you are used to walking together. There are certain parts of this journey that Nathan and I experienced very differently. Like walking in the same forest on the same path, and then suddenly being forced to walk on separate, but parallel paths.

Or, I could share about how Nathan and I cope differently in stressful times. I cope by ruminating over all possible scenarios (usually dwelling on the worst case) and preparing for them all. Compared to Nathan, who says he’d rather hope for the best and cross the more difficult bridges only if we get to that point. 

I thought maybe someone would want to read about what it has been like to navigate this last year with young children. Or what I’ve learnt about trying to manage the things I can control and letting go of the rest (still a work in progress). Or maybe about learning to be present in the good and more challenging moments, and finding sacred moments in ordinary situations. 

However, the thing I have been reflecting the most about lately is: what do you do when emergency measures are over and we are told that we can go back to “normal“? What does “normal” look like now?

I was thinking about backup power generators. This might seem like a jump, but hang in there, I will explain. When the power goes off at a hospital, for example, there are backup generators that kick in fairly quickly. But just because we have power from the generator doesn’t mean that we are using all the power at full capacity. When the backup generator is used, power is limited and diverted intentionally to the essential areas. For example the lights are dimmer, and only a fraction of the outlets have power, just to name a few of the differences. 

That is how the last year has felt. We have been in survival mode, conserving our energy, time, and brain space for appointments, treatments, keeping the household running, and the bare essentials. Now we are being told that the power is back on (so to speak). We’ve been in conservation mode for so long that it’s hard to remember where we used to use all that extra brain space, energy, and time. And now we have a choice of where to redirect some of this newfound energy. This is a bit overwhelming sometimes. When the power has been off for a while and suddenly returns…you become very aware of how bright those lights are, and how noisy the fans and appliances are when they are on full power and working order. 

After a life changing event, it’s normal to wonder who you are now that ______ [fill in the blank] is a part of your story. And I think that is the work I get to do now. As an introvert, it is easy for me to get used to survival mode. There is comfort in just hunkering down and riding out a storm. It’s not necessarily healthy for me to stay in the storm cellar just in case another storm comes along. At some point I have to emerge after the storm, assess the damages, and do the work of rebuilding.

Another way of looking at it is to think about trees. Mighty trees lie dormant in the winter, though not because they’ve given up. It’s because they know that they need to stop, rest, and conserve their energy and nutrients in order to thrive in their next growing season. When winter is over, they continue to grow.

We have just emerged from a season of being in survival mode.  So I expect this next season of life to be one of growth, stretching, and change, as we cautiously step out into this “new normal” for our family. One that can never be the same as it was before, but one that I hope to experience with curiosity, intentional presence, and an open hand.

Thanks from the bottom of my heart for all your support this last year. We could not have done it without a community surrounding us with love, encouragement, good food, listening ears, and prayers. No words can ever express our gratitude!

Today is the one-year anniversary of getting my diagnosis. One year since the colonoscopy that we thought would be routine, but which showed a rude surprise. One year since Lori and myself took a moment to cry in the car outside the hospital, and afterward going for Subway before starting the drive home. A year since I stood in the kitchen and made myself say aloud “I have cancer.”

Today has been a very different day than that day, and thank the Lord for that.

Today I played music, ate a delicious cinnamon bun, watched Howl’s Moving Castle (as planned) and had a nice supper at the home of friends. Spirits are much higher, as you might expect. And, on the advice of my counsellor, I took a moment with my family to acknowledge aloud that we all worked hard at getting through the last year, and that was worth noticing and celebrating.

Another thing I discussed with my counsellor was identity. I did mention last week that I’d write about this, and here we are! I described an experience I’d recently had where someone from church asked how I had been doing lately, and I felt like I blanked. I didn’t have any recent treatment news to talk about anymore, nor anything in the immediate future. Outside of that, I also couldn’t think of anything else about myself to say. Later, I got into my own head as one does, and wondered to myself and later to Lori…who am I now? I’m physically not the same person as before I started, and I’m sure that extends to the emotional and spiritual parts of me as well. So…what am I like now?

My counsellor assured me that this was an extremely common thing to go through, post-cancer. To paraphrase her, I’ve assumed the identity of Cancer Patient for the past year and now that’s gone. It’s very normal to wonder exactly what I’m wondering, and there’s no quick path out of it. I had already started keeping a list in the notes app on my phone about things (and people) that I love; she told me to keep doing that. Some folks in my position apparently work through a list of suggestions, and use this as inspiration to try new things and surprise themselves.

I’m not planning to completely reinvent myself. I think most of what matters to me is fairly consistent from the before-times. I still want to be open to new experiences, but for instance I’m not suddenly super interested in learning to drive a motorcycle. However, it occurred to me this morning that maybe my experiences in the past year can help me be more confident, authentic, and at ease in the world.

A few days ago I listened to an interview with a comedian. She talked about how, despite being well-established and successful, she’d found herself doing a show in a comedy club that was getting absolutely no laughs at all. She said the whole thing suddenly seemed so hilarious to her — she’d had successful shows in much bigger venues, and certainly wasn’t new at the comedy scene anymore. She described climbing down from the stage mid-show to sit with some audience members at a front table and actually workshop, in the moment, what was and what was not working for them and the rest of the audience. Somehow this got the room on her side, and the rest proceeded well.

Reader, I was astonished. First, at her ability to laugh at the absurdity of it all. To step outside of herself and the situation, and say wow, this is really going poorly, and that is very funny. Then secondly, the humility that it takes to own a failure like that, and the freedom that comes from it. She didn’t blame the audience for not ‘getting it’, she didn’t deflect and say it was an ‘off night’, she didn’t get angry at the perceived disrespect. She calmly sat down and examined the situation with genuine curiosity and interest, and eventually it got better. I’m certain she didn’t spend the following days beating herself up over such a rocky start to the performance.

I’m afraid of making mistakes, and I’m even more afraid of upsetting anyone and harming my connection to them. So many times I’ve held back my authentic self, or my true opinions, because I’ve decided to prioritize comfort and safety. What if I was able to just sit in discomfort, knowing that I’ve lived through much worse? Maybe I could actually believe that I can’t please everyone, that mistakes will happen, and that I’m able to take up space and speak my mind, because no matter what happens as a result it probably won’t be worse than having cancer.

I want that to be a part of who I am, going forward. I think it will still take a long time for me to get there. I also think it is worth pursuing. Fortunately, my counsellor reminded me that there’s no timeline or due date on self-discovery. I look forward to the journey onward.

^{just kidding, I’m speed-running all of this and will have attained self-actualization by next week! Should be easy!}

In the past two weeks I’ve had followup conversations with both my chemotherapy doctor and my surgeon. These conversations have slightly complicated my good news and optimism. The news is still good! As far as anyone knows I am Cancer Free. So what’s complicated about that?

First of all, one of the things the chemo doc told me was that actually, thirty lymph nodes were “harvested” (weird word, unpleasant) rather than just a few. I still have tons left in my body, so that’s not the issue. Twenty-eight of the nodes were clear. Two had cancer cells. Hearing this, I became anxious, as you might imagine. No no, he assured me. This was totally expected. The news is still good. He wants a follow-up CT scan in a few months, but he told me that any future appointments aren’t as time-sensitive and can be rescheduled to fit around my life.

Our visit with the surgeon, a week later, was brief and followed a similar theme. Yes, those two lymph nodes had cells but they were probably the ones right near the tumor. There were nodes harvested from my hip region, further away, that were clear. There is the issue of a small hernia along the closed up part of my backside, of the kind which is really hard to do anything about surgically. So we’re just going to wait and see if it resolves itself. The surgeon wants a follow-up CT scan in fall, and a scope in a year. I suppose the hernia accounts for the discomfort I’m still experiencing when sitting for long periods of time.

“So as far as we know,” I asked worriedly, “I’m free of cancer?”

“Yes, as far as we know.” It was a relief to hear him say it, and yet the mood around us as we left and made the long walk back to the car was not one of elation. Now, in fairness, this was the late afternoon and our day had been fairly long by that point already. So Lori and I were naturally a bit low on energy. But I had thought that getting in-person confirmation like this would…maybe energize us a bit, y’know? Not that we’d be dancing in the streets exactly, but what I felt was much heavier than I’d imagined it would be.

As we walked, we talked over what we’d heard from the surgeon, and it felt to me that we were trying to convince each other that this was really good. I was puzzled and spent the next part of our drive home trying to identify what was going on in me, and with us.

Part of it is probably that the news is good but not Perfectly Good. Going from “lymph nodes were all clear” to “lymph nodes were mostly clear and it’s probably fine” was something of a comedown. And the not-easily-fixable hernia thing. I’ve been feeling well and wanted my recovery to be complete, which was probably not realistic in hindsight. And anyway, even if it was, it’s not like having a Perfect Recovery is going to put things back to how they were before this journey started. Still, I don’t feel ashamed of being a little crestfallen.

It’s also been suggested that after a year of ups and downs, being told “okay you’re good to go” might be hard to accept. That it might be difficult to trust good news after experiencing such bad news. I’m actually not very sure this is the case; I felt pretty good sharing my good news after the surgeon first phoned me. The idea does feel worth noting, however.

I’m more sure that Lori and I were also thinking that we’ve known people who got the All Clear and whose cancer came back. What if our good news is only a temporary reprieve? What if I’m right back in treatments and appointments in only a short time from now? What if, what if. We talked about this on the drive back from Winnipeg as well. The place we came to involved those words: As Far As We Know. We don’t know, so, in a way, we get to choose. Do we choose optimism? Gratitude? Faith? Or do I choose to withdraw inward, cultivate a bleak outlook and choose pessimism instead? I’m doing well these days, and it seems to me it’d be a terrible waste if I just sat around waiting for the good days to end. (Like falling into The Maw, from the previous post).

The thing is, we’ve had to go over this conversation and remind each other more than once since then. We’re trying to be upbeat and lean into optimism, but it’s not a one-and-done choice. This week I’ve started saying to myself “Today is a gift.” Not sure how long I’ll keep at it, but even when things seem chaotic or overwhelming, it makes me smile a little to remember that I get to be here today, doing whatever it is I’m doing, by God’s grace and the timely intervention of medical professionals.

It seems cheesy when I read it back to myself, but right now it’s working for me. Things are gonna be okay. Even if it goes bad again one day, right now, it’s like this, which overall is pretty good.

In a week from today it will be exactly one year since I got my diagnosis and this journey started. I plan to watch Howl’s Moving Castle, and later, write about identity or something. Also, tomorrow’s our 13th wedding anniversary! This, too, is a gift. (Which we plan to celebrate with some Boursin and mimosas 🙂)

Back in January I wrote that I had rejoined the Prairie Singers choir for their spring season, but I’ve realized that I never did continue the story of how that went for me. At the time, I wrote:

“it remains to be seen whether my other life stuff will interfere with my practices and performance, but I was advised last year not to stop doing the things I love because I might have to quit them at some point. We don’t know! So I’m going to try and assume the best.”

Well, the concert has come and gone and I…was not a part of it. I was in the audience instead, loving the music even if I was occasionally sobbing quietly.

When rehearsals started out I had a difficult time enjoying myself. I can sing capably enough (I’m a 2nd tenor, if you’re curious) but just barely read music by sight, so I rely quite a bit on those around me to keep pace when learning a song. And, our choir director is someone who likes to challenge his groups, so the early going was quite difficult and slow-going for me. On top of all that, I was getting over a cold when rehearsals started, so my vocal range was impacted and I was frustrated by that as well.

A few rehearsals in and I still wasn’t ‘feeling it’. The previous year’s choir rehearsals had been challenging as well, but energizing! Where was that feeling? Then, the even bigger questions started setting in. I was pretty sure that my surgery date was going to be before the concert in March, so was there really a point to continuing if I wouldn’t get to take part in the finished product? And then I started thinking about space.

I took this slightly blurry picture of the moon a few days ago, through the lens of a friend’s powerful telescope. This friend runs the local astronomy club and gets absolutely fired up about interstellar topics, which is interesting and fun to chat about. But, it’s also thanks to him that I’ve been gaining a new appreciation of just how incomprehensibly vast space is, and how relatively tiny we are.

I’m coming back around to my story, I promise! But I also want to properly plug my friend Kenton’s Pembina Valley Astro Club which just kicked off the 2025 season! What follows in my story is not his fault. Anyway, tell him I sent you, and if you have some time, ask him where the tungsten in my wedding ring comes from and buckle up 😄

So, my thinking spiralled from: why am I not enjoying myself at choir? To, why am I bothering with this at all? Which became, we’re so insignificant and life is so short, so why bother with…anything? I’ll admit that being between cancer treatments and major abdominal surgery likely had something to do with my downer headspace. Kenton says he has a friend that calls this mode of thinking “The Maw”, after the sort of philosophical chasm that can open up beneath you when you start to go down this road.

Lots of folks have lots of different answers to these kinds of questions. I came around to a better place eventually, aided by the choir rehearsals that started the whole thing. This might not make a lot of sense, but I remembered two main things. One is that it’s all relative. We’re tiny compared to the solar system, but our bodies are galaxies to the cells inside of us. Thinking about this was a way to sort of recenter myself, and lead into the second thing; what we do with our time here matters, to us and to others, right now.

I know that in a hundred years, probably nobody will remember this particular season and concert of the Prairie Singers. But, that doesn’t mean it wasn’t worthwhile for me to do. This is my one go at living life here on planet earth, and when I really think about it, I’m not going to sit around doing absolutely nothing, affecting nobody, making nothing, and expending no energy, just because it might fade from memory one day. I definitely shouldn’t have had kids if I expected to just sit quietly in a room and wait for the afterlife. I’m gonna live.

Accepting this means it isn’t feasible, or really any fun, for me to sit in the constant knowledge that we’re motes of dust dancing in a ray of sunlight. So I had to set that aside, and decide for myself that things like choirs matter because of the time and energy we invest in it. Things…got better from there. Rehearsals started to feel better. Still challenging, but at one point a really beautiful piece of music clicked while we were working on it, and I mentally stepped back from the song and marvelled at the beauty of this group of people making art together.

I got my surgery date and exited at the last rehearsal before the 20th, which was also the best and most energizing one I’d done this season. However, I didn’t want to stress about missing practices due to recovery, and I knew I’d try to push myself too hard to rejoin the choir if I tried to say I’d be back. I was deeply pleased to be able to attend the concert, however, and got to finally see how the pieces we struggled with had come together. And yes, I really did cry more than once, not only because of the beauty of the music, but because of the layered feelings around the experience.

This has been: The Time I Had An Existential Crisis About Singing In A Community Choir. Please enjoy this picture of my children getting mad at Super Mario Bros. 3. (There are two of them because I was also testing a Raspberry Pi computer running a Nintendo emulator, and they are not great at taking turns)

I had a chat with my CancerCare Counselor this week, and brought up my sense of frustration and unhappiness with having a colostomy that I mentioned a few posts ago. Again, it’s nothing extreme, just a feeling that persists even though I’m dealing with the mechanics of the situation reasonably well. I asked if this was something that needed to be addressed and dealt with right away, perhaps with a worksheet or something. She chuckled and said she did not have a worksheet handy, but could possibly come up with one if needed.

Instead she told me a few good things to remember. One was to remind me that it hasn’t actually been that long since getting out of the hospital. Processing my feelings is going to take time, and there isn’t a rush or a deadline. (However, she did acknowledge that if I was in my eighties and still deeply unhappy about it, the situation might bear more serious discussion.)

Another thing is that two things can be true, something Lori also reminds the rest of us about on a regular basis. We often think that our feelings about a topic have to be either/or. Either I’m totally adjusted and content with my colostomy or I am not at all, which I tend to assume is a failing that must be corrected. But, I can be grateful to it for allowing my continued existence, and frustrated at the change to my body. Also, frustration at having to think about ostomy supply levels on top of everything else in my life. ALSO, frustration at the way the weird caramel-coloured bag adhesive is absolutely ridiculous to try and work with if you don’t put it on properly in one go.

Anyway the point is that we can hold more than one feeling about something and that’s a normal thing to do.

Lastly we talked about grief, which is something I haven’t really thought about since starting this journey last year. We talked and I wrote, back then, about the sense of another life, another timeline where I didn’t get diagnosed and our house renovations and travel plans continued as expected. I’ve had plenty of time since then to come to terms, but now I get to do it again; because the pathology report being good news doesn’t mean things are ‘over’. Things are not ‘normal’, as they were before last May, and they will not go back. So once again, there’s a sense of loss to become accustomed to, one I hadn’t really noticed on my own yet.

(This sense, I observed, may have also been why the pathology results weren’t as exciting to me as to others I talked to; because for me the results didn’t provide a definite sense of resolution.)

This week I was energetic and confident enough to go with my family to the Manitoba Museum, and we had a great day. I’ve felt deeply grateful to be up and about as much as I’ve been able to, although the seats in the planetarium did get right up my stitching and I was happy to keep moving after the show. (On the other hand: Lori and I got to have dinner and see a play last night, and even though the seats in the theatre were ancient they were perfectly comfortable for the duration. How???)

All in all, it turns out physical and emotional healing take time. More time than I’d like, surely. Time, and sometimes treats for myself, and sometimes a good episode of Star Trek, and sometimes just playing an old video game I’m really good at.

I got some good news this week and it is this: as far as we know right now I am Cancer Free, Babyyy! (you should click play on the sound below)

My surgeon phoned me while I was following my boy through a grocery store. It was right around supper time and there were very few customers, and at this particular store there are child-size shopping carts that Avery just loves. We had our list covered and were meandering toward the tills when my phone rang.

The surgeon informed me that the pathology report had come back on the growth they removed in surgery, and the news was good. He said the tumor showed signs of being reduced by the treatments last year, and had “good margins”, which he explained but I also looked up at home; it turns out that when excising a tumor you take a layer of the healthy tissue surrounding it as well. When the mass is examined later, this layer is checked, and if cancer cells are found, there’s a chance it wasn’t all removed in surgery. In my case, the healthy tissue layer was intact.

The surgeon also removed a suspicious lymph node that was near the mass and showed up as a bit enlarged on scans. This node was worrisome because — as I understand the human body — the lymph nodes are like Super Mario-style Warp Pipes for cancer. If a node is infected, the cancer can get into the lymphatic system and pop back out basically anywhere. Thankfully, that lymph node was found to be clear as well! Hopefully I can do without it? It doesn’t seem to have been load-bearing, in any case.

_{[Editor’s note! Another quick search reveals that people have, on average, 600-800 nodes around their body. Removing them is not without risk, but for me, the benefits greatly outweighed those risks. And overall I’m probably not going to miss it.]}

I’ll admit that the excitement of the news did not occur to me right away. I was happy that the results were good, but it wasn’t until I started getting really excited reactions from others that I realized “Oh, this is like, really good news. Great, even.” In part this is probably because I received the news while half-distracted by my small child going this way and that through the produce department. But, as I’ve thought about it over the week, I think that part of my subdued reaction is because that it just hadn’t occurred to me that the surgery would not have worked. (Not bothering to think of negative outcomes is a theme that has definitely come up before on this blog.) I think in my mind I was irrationally convinced that all the pain and suffering guaranteed a positive outcome — otherwise, what was it all for? Nothing?? Impossible.

In any case I’ve been spreading the news all week long, and now I spread it to: you, dear reader! Thank you again for coming along on this journey with me.

In other post-surgery news, my recovery is still continuing, and even though not every day is easy they are getting easier on average. Also, I’ve gotten Good Enough At Colostomy that my home care visits have officially ended. This is good because I can now change bags on my own schedule. Lastly, I know I threatened to slow down at posting a few weeks ago, but I still feel like I’m coming up with things to talk about, so we’ll see you here again next week I guess.

Last Thursday was exactly a month since I went into the hospital! It feels like ages ago, and also yesterday.

At this point I’ve also had a couple of weeks of regular visits by home care nurses. They’ve been very encouraging and tell me I’ve made great progress on learning the colostomy bag replacement process. Actually, the last time or two I’ve basically done it myself, while the nurses supervise and offer tips and suggestions. It’s a little time-consuming, but not terribly complicated.

The physical process may be coming along well, but the psychological side of things has been going more slowly. At first, while still in hospital, I wasn’t even able to look at my stoma. Once I could do that, it was another hurdle to be able to touch and interact with it. Again, even though it’s a bit of your intestines on the outside of your body, there’s no actual nerve endings there. The most you’ll tend to feel is a bit of pressure from the skin around the stoma rather than any feedback from the thing itself. But there it is, a roughly 1.25″ red thing on my stomach that looks for all the world like a gaping wound. When a nurse or myself would interact with it I kept trying not to flinch away. My mind kept telling me that it should scream with pain, like any other wound would.

But, over time, I’m learning that it’s okay. I mean, don’t be rough with it, but it’s not going to hurt, either. And so I’m heading toward the next hurdle: just…sort of generally being very unhappy about the whole situation. I actually did change my bag myself today (with Lori giving things a quick look over before I started, and being nearby for questions / concerns). While approaching completion, Lori happened past the bathroom and I said aloud what my mind was repeating to me: “I hate this.” Not said in anger, just unhappy resignation.

This one will probably take a bit more time to deal with. Probably quite a while, if I’m honest. At least I can begin to deal with the mechanics of my situation. And, I get to put on some good music when I do it myself.

Otherwise, my healing slowly continues. I keep being surprised by hitting my limits in a day, and feeling exhausted and uncomfortable as a result. We did get to attend church in-person for the first time in ages, and I had a lot of wonderful folks tell me I “looked great” and give hugs. I never used to be a hugger, but tbh it meant a lot today.

People! They can be pretty nice, it turns out! And sometimes they bring you delicious baking that’s shaped like the first letters of your family’s names: