There’s a season in your cancer journey that nobody warns you about, mostly because nobody has a good name for it. Not treatment. Not recovery, exactly — recovery implies an endpoint, a discharge summary. And it’s not quite survivorship, since that also implies you’ve been handed back to ‘normal’ life. This is something else. Let’s call it the ‘after.’
Last Friday, I had coffee with four other women that I only know through one of my support groups. It was the first time we’d met in person, but we fell into an easy conversation that, to a passerby, would have looked as if we’d been close for ages. It was easy — because we are all in that same space — figuring out how to live in this ‘after.’
When you look at me, outwardly I’m fixed. My first surgery was for my endometrial cancer. It removed my uterus, ovaries, and fallopian tubes. Then treatment made sure my risk of recurrence was as tamped down as possible. This year, colorectal cancer entered the picture and my second surgery revised and rerouted my colon — which is, by all measures, doing its job.
My scans are clean. My pathology reports say the words you want them to say: R0, N0, NED. If you saw me on the street, you would see a woman training for a 10K — a fairly convincing ‘person who is fine now.’
But I have two more years of detailed surveillance for my endometrial cancer. And I’m still counting days since my hemicolectomy as I write this; it was only three months ago. Underneath both of those very specific cancers sits my syndrome — the thing with no pathogenic variant, no smoking-gun mutation, just a pattern my geneticist and I have learned to read like weather.
Unlike my cancers, Cowden-like Syndrome doesn’t go into remission. It doesn’t have a discharge date. It means my surveillance schedule is now a permanent fixture, and so is the fact that somewhere down the line, there could be another primary. Not a recurrence of what I’ve already had. Something new, using the same underlying permissive structure.
So the thing I keep bumping into is this: the ‘after’ isn’t a destination. I don’t arrive at it and get to stop working. Survivorship assumes you navigate diagnosis, treatment, and a fixed surveillance timeline. But for me, there’s no version of this where enough time passes, and the vigilance clicks off.
I used to think survivorship was a border you crossed — one day you’re a patient, the next day you’re a person who happens to have a rather colourful history. That isn’t true for me, and it doesn’t serve me to believe it will eventually become true if I just get far enough past this last surgery.
Here’s what I think is actually happening: I’m embarking on a future that runs in parallel to surveillance, not one that starts when surveillance ends. This is where my running comes in. I didn’t choose it as a metaphor — it just started functioning as one on its own.
Measuring time
Training has its own calendar. Week 3 of 15. Long run on Sunday. A race in October. This calendar doesn’t care what my CT shows. It doesn’t know what CLS stands for. It just wants to know if I ran today, and if I didn’t, what I’m going to do about that tomorrow. The numbers have nothing to do with my tumor markers or NED status, but rather my splits and clear metrics measured over time.
I don’t think you can call this escapism, or at least I don’t think it’s only that. It’s an alternate frame for organizing my time, a counterbalance. It’s a slice of my ‘before’ with a new role in my ‘after.’ Instead of appointments, blood draws, and scans with specialists who know me by my pathology instead of my personality, my training calendar marks mileage and how my legs feel on the treadmill in July. Both calendars are real. Neither one cancels the other out. But I get to choose, on any given day, which one is doing more of the organizing — which one I’m letting drive.
Turning the clock forward
This week, neither has been driving. I’ve been ‘paused,’ not working out, not with any appointments. Just holding space, letting my body dictate what it wants — and that’s been rest, some good food experiments, and more sleep than I usually let myself enjoy. The result is I’m looking forward to rebooting my training calendar tomorrow when I meet for my first 1:1 coaching session in my PrehabRx program.
What I’ve been noodling over this week is this notion of shifting priorities. My appointments haven’t gone anywhere — Dr. Salvador in September, Dr. Payne in October, with accompanying bloodwork, CT scans, an ultrasound, and a biopsy. But none of this is triage anymore. They’re routine, which is a different thing than urgent, and I think I’ve been treating them as the same thing out of habit — a habit I can begin to let go.
So the shift isn’t pretending my medical calendar doesn’t exist. It’s just letting it become a background rhythm — steady, recurring, no longer the thing everything else has to work around — while my training calendar, the coffee with the women from my group, a movie date with friends, the actual texture of my week, gets to take its space in my foreground. The appointments still happen. They just stop being what the week is about.
Are we there yet?
I don’t have a tidy answer for how you do this well. I’m not sure ‘well’ is even the right frame yet. I’m just a few months out from this latest surgery, and I’m still testing whether this training calendar is sturdy enough to lean on, or whether it’s just a nice idea I have on days when I wake up feeling rested. Ask me again after October.
What I do know is that I’m not waiting for a finish line that isn’t just over that last hill — the moment where the vigilance can stop and I get handed back my ‘normal’ life. I’d rather figure out how to live in this new life, where vigilance is a core thread, but it doesn’t play a leading role. I can train through it, and let this ‘after’ be my practice instead of a destination.
More on this as I figure it out. I don’t think I’m there yet. I’m not even sure ‘there’ exists.
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