The last few months have been a bit of a head trip and I kind of fell off the wagon of providing updates and insights on what’s going on with me and this whole cancer thing. The fatigue and brain fog are still plaguing me so writing isn’t at the top of the priority list for when I do have some energy. I think if I wait till I ‘feel like it’, I suspect I won’t be writing at all, so here we go!

It will be long – I want to bring you fully up to speed and (selfishly 😀) it’s easier to write it all in one post rather than splitting it up into multiple posts. So, get your beverage of choice and maybe a little snacky-poo, and hunker down for a big read!

Also, I won’t be doing much rereading and editing. There will likely be spelling errors and other grammatical and writing style issues. I’m definitely not vying for a Blog Post of the Year award! ha ha ha

Note: If you’ve been following along with my cancer journey, some of this post will be repetitive. At 15 months in, though, I want to do a quick recap before getting to where I am today. More details on the diagnosis and treatments, if you are interested, are found in previous posts.

Diagnosis and treatments

On February 16, 2024 I went in for a routine colonoscopy. The results from the recent fecal immunochemical test (FIT) that I had done showed blood was present, so the colonoscopy was to check things out. I wasn’t too worried.

My GP had called to let me know he wasn’t worried, either; he said that blood could show up for multiple reasons. He also assured me that if there was anything found, then we were finding it early enough to be able to address it.

Surprisingly, at that test, I found out I had rectal cancer. Biopsies were taken and there were a flurry of CT and MRI scans, along with various types of blood work. When all the results were in, it was confirmed that my cancer was stage 3, having spread to a nearby lymph node.

I met with a radiation oncologist, medical oncologist, and colorectal surgeons. Rather than proceeding immediately to surgery (removing the rectum and giving me a colostomy), I opted for a fairly new treatment protocol (OPRA – organ preservation in patients with rectal adenocarcinoma), where we do aggressive external beam radiation combined with chemotherapy (in the form of pills), followed by 8 cycles of pure chemotherapy administered through IV – in my case, it was a PICC line.

The 28 fractions (doses) of radiation were done from April 18 to May 28, 2024. The approximately 400 hours of chemo were done from June 24 to October 17, 2024. There were side effects from both (ranging from mild to quite painful), but they were definitely preferable to a colostomy!

Results

Towards the end of November 2024, I had a couple of CT scans, an MRI, and a sigmoidoscopy. The results from those tests (discussed in my immediately previous post) were quite positive. Things were looking up and it was a great way to go into the Christmas season.

The surgeon who did the scope wanted to do another one in January, to see what further improvement there might be, so we didn’t make any next-steps plan yet.

On January 8, 2025 I had the next sigmoidoscopy. At that test, there was a 180° turn from the last one. That surgeon advised me that I would need to prepare myself for surgery for a permanent colostomy. At that moment, the world fell out from under me.

The surgery wasn’t even presented to me as a choice. He told me I needed to prepare for surgery. It wasn’t, “When we talk in clinic, we’ll be talking about your options now, including possible surgery.” Nope. Just that I would need to have the surgery and had to start preparing for it.

Please know that he was very kind and caring as he spoke. It wasn’t a question of bedside manner at all. It was just the fact that it was an assumed done deal.

I thought to myself at the time, “I don’t think I’ll be having the surgery,” but I knew enough not to say that to him then and there. I was obviously in shock and distress, and he, rightfully, would dismiss whatever I said at that point as being due to that.

I also knew that I really needed to give myself the time to think about it. I was now at the moment where I would have to make that decision. And in that moment, lying on the gurney, I was in no way, shape, or form in the right mental state to make such a life-and-death decision. I had to give myself time.

Shock

The mental whiplash that day was crazy hard to deal with.

I had been super stressed waiting for the first post-treatment tests and then so happy in December with the initial results. Hope had been shining brightly for the future – that I would even have a future – and now it had been ripped away so unexpectedly.

After a couple of very rough days mentally, I pulled myself together and got to work doing some serious reflection.

I knew from almost the get-go of this whole experience that, even with the treatment approach I had chosen, a permanent colostomy might still be the eventual outcome. I also knew that it wouldn’t be smart to wait until decision time to start trying to learn about it and figure out how I felt about it.

To that end, I did some research on colostomies off and on throughout last year to help prepare myself (as much as such a thing is possible) for the time when I might have to make that decision. That way, with no immediate pressure to decide anything yet, I could just take my time with it and not feel rushed.

At the same time, I knew that if push came to shove and eventually I did have to make the very literal life-and-death decision to have or not have a colostomy, I might feel differently. So while I was leaning towards not doing it, I wanted to keep my mind open and leave the final decision till if and when it was necessary.

A tale of two Lucys

Once the initial shock wore off after the January 8 scope, I sat with it all. I thought about everything I had learned and really reflected on what life with a colostomy would look like for me. Most people seem “fine” with it or at least adapt to it, so maybe I could.

But what I learned was that it would be my Waterloo. It was the challenge that would do me in. I don’t know why, but I felt really strongly that it would.

I knew that while the path without the colostomy would almost certainly bring about a quicker death, I felt that the quality of life down that path would be better than it would be down the colostomy path.

I thought about both Lucys – the one I would become if I had the colostomy and the one I would become if I didn’t.

I saw the first Lucy sinking into a deep depression and I wouldn’t care about doing the work to come out of it. I saw myself in bed, with the blinds closed and the curtains drawn. I saw a very sad, dark existence where I would withdraw from everything that I enjoy in life. I would technically be alive, but certainly not living.

I saw the second Lucy eventually dealing with pain and uncertainty about the future. My physical quality of life would eventually decline, especially as the tumour regrew and depending on when/where it spread, but I felt that those were challenges that future me could better manage and cope with.

Other considerations

Do I know any of this 100%? No, of course not. But I know myself pretty well and feel pretty confident in it. Plus, this isn’t like deciding if I want to start biking everywhere rather than driving. I could try cycling for a while and, if I decided wasn’t not for me, I could simply sell the bike and go back to using my car.

This surgery isn’t like that. They cut the rectum and surrounding tissues out. They cut a hole through the skin of my belly and kind of pull the end of the colon to that hole, stitching it in place so it doesn’t slip back inside my body. That’s the hole that I would defecate though (via attached bags) going forward. They also close up the anus. (They call it a ‘Barbie bum’ – seriously. That’s what the surgeon said.)

If I had the surgery and found out that, as suspected, I really couldn’t cope with it, I couldn’t then go back and ask them to open ‘er up again. The shop would be closed. It would be a done deal.

Note: There are other options for tumours in different locations. Mine is very low in the rectum, so I don’t have the same options. Also, this isn’t a commentary on colostomies in general or people who have colostomies. It’s about my ability (or inability, as the case may be) to deal with that challenge in my life.

The decision

After looking at everything, I have decided that I will not be having the surgery.

To be completely frank, I think that regardless which option I chose, at some point the situation would get so bad that I would wish I had chosen the other.

Meaning that I fully expect there will be a point down this path I have chosen where the pain will be so bad that I will wish I had gotten the colostomy. I won’t care about the ‘other’ Lucy (who would have gotten the colostomy) and how she would feel. I will just want an escape from the pain.

When I’m riddled with pain, I’ll likely think that a colostomy life would have been grand and there wouldn’t be any problems with it. But right now, I have the clarity to see that isn’t true.

I’m not a sadist (or masochist) and at this moment, I feel do badly for that future Lucy, but this was a choice (for me) between two very bad options.

It was a very difficult decision and I have instructed friends and family not to try to convince me otherwise. I ask the same of you.

I respect that this is difficult on people who care for me and I took that into account in making my decision.

Ultimately, though, I am the one who would have to live with it day in and day out. I’m the one who has to empty the bags and clean the stoma hole. Me. By myself. Every. Single. Day. Until I die.

And there’s still no guarantee that the cancer wouldn’t come back somewhere else so it could still end up being all for naught.

So I will say here what I have said to friends and family:

You may have strong opinions and feelings about this. I get it. I truly do. I think you should find someone to talk to about it. But it can’t be me. I can’t manage your challenges with this on top of my own. I can’t – and won’t – take that on.

Telling the doctors

I talked to the surgeons and my oncologists at the end of January and they were all, as I expected, surprised with my decision. I knew that I was going to need to get them to understand that this was not a panicked, fear-filled decision, so that was my focus in those appointments.

I needed them to know that I had done the research and that I had thought it through calmly and with a lot of reflection. I am not under any illusions that there will be a magic cure – I know that what will come will not be pleasant. And, at the same time, I am perfectly calm and at peace with the decision. It is for sure the right decision for me.

I won’t go into details about each of the conversations. That could be a whole book. I will just say they were worried about me and wanted to make sure that I understood what I was choosing by opting to not have the surgery. I felt well-cared for.

My radiation oncologist, who is the person I’ve seen the most often, even said that my decision was difficult for him not just because I am his patient, but, because he has gotten to know me over the past year or so, he has come to like me as a person, too. That was genuinely lovely to hear.

It is so helpful, as a patient, when you know that your care team genuinely cares about you as more than just a disease that needs to be treated.

And now?

They did another scope in March, from which biopsies were taken, and it was confirmed 100% that cancer cells were still present. It closed the door on that little bit of hope, but it definitely wasn’t a shock.

The medical oncologist also had biomarker testing done as it may be helpful in determining if there are any targeted therapies that might help as things move along. That is super cool. I have learned which gene has mutated to cause my cancer as well as what specific mutation has happened! It’s amazing what they are able to do these days.

The surgical folks have tapped out of my care since I’m not having surgery. They won’t be scheduling any more sigmoidoscopies, but my radiation or medical oncologist can request them if we want to have a peek inside to see exactly what’s happening at the tumour site, which I will for sure want at some point.

I will be having a couple of CT scans and an MRI again next month to see what shows up there and to see if there is any indication that it may have already spread. Those results will be the new baseline going forward.

My treatment options

There aren’t actually any treatment options right now. I saw the doctors again in April and this time I had a lot of questions for them.

From the radiation oncologist:

• I had the maximum amount of pelvic radiation last year. If I were to have more full-dose radiation in that area, it would likely cause a breakdown or even necrosis in the tissues, including organs, in that area of my body. Not much point of slowing the tumour down if all the tissues and organs die!
• At some point, though, low-dose pelvic radiation may be appropriate. There would still be the same risks, but lower (because it would be lower doses) and it wouldn’t be done until/unless the benefits at the time outweigh those risks.
• If the cancer spreads outside the pelvic area, full-dose radiation might be an option for that. The two most common areas that rectal cancer spreads are the lungs and the liver. If it spreads to the lungs, which are in the thoracic cavity, not the pelvic region, full-dose would probably be appropriate. But the liver, which is in the abdominal cavity, might still have been affected by the pelvic radiation, so we’d have to see.

From the medical (chemo) oncologist:

• For the medical (drugs) side of things, it’s a matter of waiting for the right timing.
• My oncologist explained that there would be no benefit to doing more chemo right now. The cells aren’t growing quickly so there isn’t anything, really, to slow down. I’d just end up kicking in all the chemo side effects with no real benefit.
• Once we get to a point where the benefits of chemo would be worth the side effects of it, we will look at the options then – whether it would be a regular chemo-type treatment or a possible targeted therapy.

If you are wondering what a targeted therapy is, here’s the Cole’s Notes version. This is based on my understanding of what little I’ve read and only related to my own situation, so don’t run to the bank on any of this! My poor ol’ grey matter ain’t what she used to be, so take it all with a grain (or truckload) of salt.

Where chemotherapy affects the whole body, affecting healthy cells as well as the cancer cells, targeted therapies have been designed to only affect the cancer. From what I understand, they are ‘targeted’ to the gene itself, and even the specific mutation of that gene.

Prognosis

The doctors can’t really say with any amount of certainty how much time I have. The last surgeon I spoke to (in April) said she figures less than a year. But the others don’t think it will be that quick. They don’t think I have years and years, either, but exactly how long? Who knows.

The only thing we know right now is that there are cancer cells at the original tumour site. If it spreads outside that area, where it goes will have a huge impact on ultimate prognosis.

Barring divine intervention or medical miracles, I’m operating on a 1-3 years perspective. I need to get all my ducks in a row in case it turns out to be less than a year. (Even though that doesn’t seem likely, I want to have everything ready.) Anything I get beyond 3 years will be gravy. 😊

Side effects and such

Right now I still have heavy brain fog and a lot of fatigue. That’s a big reason why I haven’t written in quite a while. It takes a lot longer to do things and I’m just too tired. I am doing a course to help with the brain fog that is put on by this great organization called Wellspring. (If you have or know someone who has cancer, have them check it out. They have a lot of great resources.)

I still have chemo-induced peripheral neuropathy in my hands and feet, but it has really improved in my hands and has just started (this week) showing some signs of improvement in my feet. Things aren’t as painful as they were from that, which is great.

I also, since December, have been having trouble with my hips. They have really tightened up, which is common from the radiation treatment. I didn’t attribute it to radiation at first, because it had finished about 7 months before I started feeling it, but it usually starts within a year after radiation and can even be delayed in showing up longer than that.

I’ve been seeing a physiotherapist who specializes in cancer patients and she has given me some stretches and exercises to help with it. When I stand up from sitting, it’s like I’ve turned into a 90-year-old. Nothing wrong with being 90 – unless you’re only 55. ha ha ha

I’m still losing weight, so I have to keep an eye on that. There’s no big risk – I still have plenty to lose – but if it happens too quickly, it could be a sign that something’s not right. Well, something else isn’t right. 😁 I need to make sure I’m eating balanced meals to get the nutrition my body needs for everything that’s currently going on and what’s to come.

I’m also still talking to the oncology social worker on a pretty regular basis, in a counsellor capacity. That has helped throughout this process in dealing with the mental side of things. She recommended a little while ago that I talk to my GP about an antidepressant to help even things out. I did and, while the drug makes me groggy in the morning, it has helped keep me on an even keel, which is great!

I am having some discomfort in the rectal region. I expect it’s the ulcerated tissue. It’s not really painful, mostly just uncomfortable. One of the oncologists explained that eventually it gets too painful for a lot of people to sit up and they end up in bed a lot of the time. I’m definitely not there! (I’ve ordered a recliner that I’m hoping will help me avoid that, though, or at least delay it as long as possible.)

How I’m feeling about it all

Once the initial shock of everything wore of in January, I was fine. I realized, in fact, that my biggest stress or worry wasn’t the fact that I’m now likely to die a sooner, more painful death, but rather it was about having to get people to accept my decision and dealing with that.

I’m honestly fine with it. As I said to my social worker when we talked a couple of weeks ago, I don’t see this as being any better or worse a time to get this news than some point in the future.

I don’t have a death wish, by any stretch. I enjoy my life. And, if I have decent health, I see me still enjoying it as much in 5, 10, or 20 years from now.

But I don’t expect anything momentously different happening over the course of time – I don’t have kids or grandkids that I want to see grow, marry, become successful, etc. and I’m definitely not on the cusp of any humanity-saving discoveries (or any discoveries at all ha ha ha) that I want to stick around to complete.

All that to say I don’t think I’ll be missing out on anything by this happening now.

So whether I die in 2 years or 20, I expect I’ll be enjoying my life and I’ll still not want to die. I won’t feel any better about it then than I do now.

What’s next

My focus right now is to get my brain in shape to return back to work. At least part time for a while. Between the brain fog and the fatigue, I’m not much good to anybody right now. I can’t process much information or do anything with what I can process. I’d be stealing a paycheque and getting in the way.

I don’t drive much any more because I don’t trust myself with it because of the fatigue. I’m trying to be more active, doing more walking.

I do some crafting to help keep busy when I can. Mostly I am making appointment card folders for the radiation clinic and, now that my fingers have started to feel better, I’m also making cards to bring there for the patients, too. Doing stuff for other people is a good way to feel better about your own situation!

I’d like to do some genealogy, but it’s too much right now.

There we have it!

Now you are up-to-date!

Please know that I am happy. I am at peace. There will be times when I’m struggling with the existentiality of it all, but not at the moment.

Thinking of getting back to work helps me think a bit more long-term, which is something I haven’t been able to do since February 16 last year.

I continue to learn about myself and I am so grateful for that. I have way more things in my life to be grateful for than not.

There are people who live into their 80s and 90s who don’t feel the joy and gratitude in their lives that I feel in and for my life, right at this very moment, even given what’s ahead.

How can I be sad about that?

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