I should have been diagnosed last year…

Cancer has been part of my life for almost a decade. Before 10th June 2022, I’d been diagnosed three times since the age of 26, and miraculously- despite it repeatedly rearing its butt ugly head- it had never spread further than to my underarm lymph nodes. Loco regional disease they call it.

I’d been lucky. I knew it. A combo of working in clinical trials for a long time, including on some high-profile cancer studies, and being an obsessive information seeker, meant I was armed with some of the not-so-fun/sobering facts from the off.

I knew that a clear scan doesn’t actually mean no cancer cells are present (they could well just be ‘undetectable’ or laying dormant, biding their time) and that some types of scan aren’t the greatest at picking up masses less than 1cm in any case. I’d read all about the ‘one in three’, and knew that time wasn’t the healer you might expect with the possibility of late recurrence, and was uneasy when it came to survival statistics for reassurance from the get-go. Here ‘survival’ or more specifically ‘overall survival’ is actually the percentage of study patients who are alive at the end of trial follow-up. And the length of trial follow-up will vary from study to study but more often than not it is 5, sometimes 10, years from the start of treatment. Not long enough to comfort young people who’d like a pinky promise that they’ll see their milestone 30th or 40th.

So yes I’d considered myself lucky that this cancer had remained somewhat contained but in the same breath had never fully allowed myself complete peace of mind during periods of ‘no evidence of cancer’. And to balance what might sound like absolute misery and scepticism, this is despite hearing COUNTLESS incredible stories of long happy survival posts even MULTIPLE cancer diagnoses (I’ll share these sometime).

So last July when a highly suspicious lesion on my liver was ablated and biopsied, I thought the worse was coming. That my luck had run out and the devil I’d be trying to keep two steps ahead of had now caught up. It would be horrific but it would make sense, no? With the multiple recurrences I’d evidently had cancer cells in my body for at least a decade (well before I was first diagnosed according to one oncologist), and to think these invasive cancer cells hadn’t made a merry voyage to other parts of my body, would be naïve.

But it wasn’t cancer. And something then happened. A shift in my mindset. Like Neo in the first Matrix movie started to believe. It had taken me to be at my lowest to realise that hey…my body is amazing, it’s doing the best it can by me, and we are all independent of statistics. Our stories and outcomes are what dictate the data, NOT the other way around. Post the now seemingly pointless liver ablation procedure I couldn’t walk for six weeks but in that time I’d had some kind of soul awakening and found a new, deeper, and more powerful level of hope.

Then June 2022 came.

The ablated lesion had grown back. Now significantly bigger and significantly more active. It was also now joined by a second lesion that looked nasty. Why had it grown back if it wasn’t cancer? Well more scans and finally a biopsy held the answer to that.

It WAS cancer. And what’s more, it was ALWAYS cancer.

The oncology team concluded that cancer being the insidious sneaky fucker it is, had duck n dived or offered up a relatively normal piece of tissue for the biopsy and skewed everything.

I should have been diagnosed last year. In July 2021. I should have been 12 months into much-needed further treatment.

I was a year into living with stage 4 disease and didn’t know it.

So there we have it.

Emotionally? When I sit with it? Jesus. Day to day I feel as though I’m avoiding direct or deep conversation on the topic because when I go there it really fucking hurts. The uncertainty is difficult and I don’t enjoy those moments when I look at my two year old Lilah and feel my stomach drop to the depths of neverwhere. In those, I don’t feel safe. 10 years in the game, I’ve seen this cycle more than once and it’s now me riding that precarious wave and praying it doesn’t break any time soon.

But you know what? When I don’t get too into it all I’m ok. Cracking on, showing up, living and being merry where side effects permit.. that’s my way of coping. What’s more, that soul awakening thing still stands. My body is amazing and my own path is independent of any statistics. Hey, we always hear of outliers doing better than anyone would have believed. Why not me? If you’re in a similar position to me, why not you?!

I should have been diagnosed last year but it was only then I found the deep, soul level kind of hope which is keeping my head above choppy water*.

*though I still bloody wish I’d started treatment sooner.