(close to) 3 Years On — An Update

So here I am, twiddling my things — thumbs, wires, whatever’s within reach — and I figured maybe it’s time for a little distraction.

A blog update, of sorts. It might meander to many places, or perhaps very few. It might be long. Or short.

It will almost certainly ramble. And I suspect I’ll wonder, as always, whether my writing is getting any better.

As I start this, it’s the 12th of June, 2025.

That makes it 3 years, 1 month, 4 weeks, and 2 days since the diagnosis.And 2 years, 8 months, and 3 weeks since the transplant.

Not that I keep count in that level of detail anymore — I have an app for that. The dates blur over time. At some point, I stopped knowing which one to count from anyway. Now I just remember the ones that matter most: the day everything changed, the day we reset the clock, and the one that really stuck — 21st September, my re-Birthday.

That one has a kind of strange joy to it. A day that used to be nothing in particular, now tethered to everything. A marker. A milestone. A weird sort of anniversary that isn't really about celebration, at least not the kind we typically associate with birthdays. Not nostalgia either. It’s something closer to survival and defiance. A bit of stubbornness. A bit of grace.

The Vacuum

I can’t even recall if I mentioned this in my one-year update, but there’s a sort of vacuum that arrives when treatment subsides. I say subsides because, as I write this, I’m still in treatment — though nearing the end. I’m still getting Rituximab infusions every two months. In fact, I’ve got one tomorrow — Friday the 13th, no less. Eek.

That vacuum — whether real or imagined — is probably both. Real, but exaggerated by your mental state.

During treatment, everything — and I mean everything — is geared towards one thing: getting you to a state of cure (not an option for me), or remission (which I reached in August 2022). And here in Australia, we’re incredibly lucky — the system, the people, the access, the care — it all kicks into gear. You’re held, carried, coordinated.

But then, it feels like — or felt like, for me — you get cast off. Into the abyss of post-treatment life.

You’ve made it through diagnosis. You’ve endured treatment — with its ups and downs. You’ve accepted the reality of being a cancer person. You’ve dealt with the changes to your body, your mind, your work life, your relationships, your sense of identity. All of it.

And then suddenly, you're alone.

And that statement is its own paradox. Because you want to be alone. You crave quiet. You hope the constant noise that comes with cancer — the appointments, the procedures, the planning — might finally fade. But also, you want the attention, the vigilance, the focus. Because let’s face it — you’re shit scared.

Scared? I Hear You Ask…

Scared of what?"You’ve achieved remission — happy days!"

Well, of course it is. It is happy days. There’s gratitude. Relief. Moments of lightness. But with Mantle Cell Lymphoma, remission doesn’t mean cure.

As my haematologist — the impressively calm and clear-headed Dr Matthew Greenwood — reminds me, gently but firmly:

“It will come back, Innes. Maybe soon, maybe in a long time. No one can tell you exactly where you’ll land on the bell curve of relapse.”

His love of numbers is always there, framing the uncertain in stats and probability. He once told me — and I paraphrase — that without my autologous stem cell transplant, the chance of relapse within six years would have been about 70%.With the transplant, that number drops to around 35%.

Now, 35% by seven years sounds… decent. Better. But it’s still higher than I’d like. It’s still more than a third. And I live with that number now, quietly present in the background. It hums through moments of joy. It flickers on quieter days. Some days I forget it entirely. Some days it comes roaring back.

The Cancer Bogeyman

While I do forget it — the stats, the curve, the odds — it’s never far from my thoughts. It’s there in the margins, waiting for a quiet moment to sneak in. Not always loud. But always nearby.

Dr Greenwood laughed wryly when I once told him,

“Us cancer peeps tend to hang about together.”

He scoffed — not unkindly, but with a sort of knowing jest:

“That’s dangerous, Innes. You’ll collectively imagine the worst while striving for support.”

And he’s kind of right.Annoyingly.

Because in these cancer circles — in the quiet chats and the shared waiting rooms and the whispered updates — I’ve come to know names and stories. Some of them very close to my own. One woman in particular — I’m fairly certain we were diagnosed around the same time — went through a brutal Car-T experience. She didn’t make it.

It’s sobering.It’s real.It reminds you.

There’s this wee Cancer Bogeyman — ever-present. Not necessarily looming in the dark. Not wearing a top hat or dragging chains. Just there. In the corner of your eye. At the back of your mind. A presence that keeps you from forgetting entirely.

So, What Does One Do?

See, I can’t really say what one does.I can only say what I do.

And that, mostly, looks like allowing it to fade, when it wants to. Sometimes I even forget about it — momentarily, at least. I lose track of it, and for a flicker of time, it’s not there. But it never stays gone. There are very few days — if any — where it doesn’t come hurtling back to remind me. And honestly? I’m okay with that.

Because forgetting… it feels a little irresponsible.Like I’ve tossed caution aside with a bit of gay abandon.It’s a strange sort of guilt — as though forgetting means I’m disrespecting what’s happened. What could happen. What I’ve seen happen to others.

It’s another paradox.People often assume that forgetting would be a good thing. A sign of progress. Of healing.But the truth is — it’s just so bloody hard to actually do.

I’m constantly reminded.

Reminded that I had one of the most potent treatments available (I’ll write more on that later — maybe here, maybe another post). Reminded that I’m nowhere near as fit. That I’m still distinctly overweight. That fatigue, when it comes, is BRUTAL — occasionally incapacitating. Less frequent now, yes. But always lurking. Waiting.

And then there are the physical reminders.The scars. The stiffness. The way my body isn’t what it was. The way it sometimes rebels.All of it makes forgetting an illusion. An occasional luxury. But never a permanent state.

So, Life Goes On

And so — life goes on.

I’ve strived for as much normality as I can manage. Some days I chase it. Some days it drifts back toward me on its own. Either way, I take it when I can.

Keery and I have taken a simple view: life’s too short.

And that’s true, by the way, whether you’re a Cancer person or not. Let’s face it — we all do stuff every day that involves risk. We cross roads. We trust our brakes. We eat food we didn’t cook. We roll the dice in a thousand tiny ways, and most days, we don’t even think about it.

At my age, the numbers start shifting. Increasingly, contemporaries — schoolmates, workmates, neighbours — are passing on, for one reason or another. Heart, illness, accident, life just doing what life does.

So me sitting here waiting for cancer to get me?That’s like waiting for a bus to run me over.Sure, it might happen. But who knows when? Or if?

Shit — something else might get me first.

That’s It for Now

I’ve alluded to plenty — and there’s still so much more to write about. Stories, moments, thoughts I haven’t quite wrangled into shape yet. Hopefully I’ll find the space (and the headspace) to create some links to those in future posts.

But that’s it for now.

My wee fingers are tired.And honestly, that feels like a good enough reason to stop.