How To Live After Being Told You're Dying?

And when the worst news turns out to be wrong, what happens to the person who believed it?

The Sweep The Hurl of Thee Trod, 2023, Philippa Perry

Dear Philippa,

Early February last year, aged 53, I was diagnosed with pancreatic cancer. I’m incredibly fortunate – I was on a screening programme because my mum and maternal aunt both died of the disease when they were 67. The tumour was found on my first CT scan under the programme; a 15mm lesion which the radiology report flagged as suspicious but which the wider oncology team recognised immediately as cancer. Nine days later I was in surgery – a Whipple’s procedure, which removed the tumour, along with half of my pancreas, my duodenum, gall bladder and a butcher’s assortment of other bits necessary to make my radically simplified new plumbing work. The results were as good as I could have hoped for: a small tumour, not particularly aggressive, with no spread to the lymph nodes. Nevertheless, I underwent six months of adjuvant chemotherapy just in case any errant cells had migrated beyond my guts. This wasn’t quite as horrible as I imagined it’d be, but I think I was lucky in that the side effects didn’t seem to hit me too hard. It finished in October 2025, and I was moved on to quarterly surveillance scans, the first of which declared me cancer-free.

Don’t worry – we’re getting to the good bit. January 2026 – my second surveillance scan. Huge anxiety over the three weeks between scan and results. My name comes up on the screen and my wife and I enter the consultant’s room. “I’m very sorry – the cancer’s back. You have a 30mm mass in the surgical bed…”. The box of tissues nudged gently towards us as he smiles sympathetically. It feels just like a scene in a film. I press for more information – can they operate again? I’m told that, no, that’s not an option — the assumption is the disease is systemic now. The only treatment is more chemotherapy to prolong life. I ask how long that preservation might be. The median survival for a situation like mine is nine to 12 months. Fuck. We tell the kids; we tell friends and family. I start trying to live more in the moment on the advice of a CBT-therapist, but it’s hard not to think about the very limited future. I write letters and birthday cards for the years I won’t see. I start chemotherapy. A different, more horrible cocktail. All my hair falls out. I obsess over the fatally-wounded assisted dying bill and start to formulate my own plan. I’ve stockpiled enough sleeping pills and Valium to supply a lethal dose when the time comes: I’m not going the way my mum and aunt did. Thanks to work, I have private health insurance. I used this to ask for a second opinion. Not because I thought the diagnosis was wrong, but because I hoped there might be other treatment options (something non-NICE funded? A less conservative surgeon who might remove what’s left of my pancreas and the rot within it?). I saw a charming professor at the Royal Marsden, who told me my current NHS team were doing everything by the book and that there wasn’t anything else he could offer. But he would look at my imaging, if I liked. Two weeks later, the follow up call. “Hello, I saw you two weeks ago. We’ve reviewed your imaging and, er, we’re not seeing what your (NHS) team is seeing. Can you come in for another scan?”

This letter is already too long. The abbreviated version – my NHS team got the diagnosis wrong. A private CT scan and an NHS PET CT scan confirmed what the Royal Marsden thought: no recurrent disease. Chemo stopped immediately. I’m in the clear. Although it took six weeks to get to this information. So why am I writing to you? I don’t know how to move on. I realise that thousands of people are given that awful news every day, but a vanishingly small number of those are then told they’ve been mis-diagnosed. I know that we’re all going to die, but I’m living with the knowledge of what an imminent, inescapable demise feels like. I feel incapable of planning more than three months into the future. I get frequent waves of unbearable/indescribable emotion that take me back into that six weeks – not flashbacks, as such, but emotional aftershocks. I can’t bring myself to throw away the DIY Dignitas kit I built. I’m still seeing my CBT therapist, but it’s not really helping, because the threat is real, not imagined. Do you have any advice? Huge thanks for even reading this.