Who's Lynne and what's she FOMO about?
Who's Lynne and what's she FOMO about?
My cancer journey so far.
Before we start, please recognise that this blog may be upsetting for some. It's not my aim to upset anyone, only to speak my truth. You have a choice as to whether to read this or not, make it now.
I like the idea that when I was first diagnosed with Lymphoma my mind went into a fuzz and all I could remember after was the miss-heard statement "Who's Lynne and what's she FOMO about?"
But it didn't happen like that.
Aug 2019 I'd been stuffing my face during lunch at my Salsa Rapido 1-Day courses. Service was often slow so I'd have to gobble my food down then get up and dance. It was uncomfortable and after a few weeks I realised I had a lump a few inches above my navel a little to the right.
I went to the GP who was one of those young and tech savvy GPs, who sent me for an ultrasound scan without any physical examination.
The ultrasound was 'inconclusive' and there were anomalies, so weeks later I'm sent for a CT scan with blood tests.
Blood test result: You've a slightly high level of white blood cells which is called MBL meaning: Monoclonal B-cell cyto-Lymphoma. Let’s stick with the MBL.
Checks every six months, carry on and keep calm.
Jan 2020 “Yes it’s definitely cancer” said my consultant at Chase Farm (Enfield). I’d pressed him as MBL and Lymphomas are only separated by white cell count. Over and it’s Lymphoma, under and it’s MBL. He put it in the letter. I’d also taken the opportunity to transfer to UCLH in central London. You may not realise you have a choice as to which NHS trust you‘re treated at. A neighbour had told me, so I asserted my rights! It’s a scary conversation with the implicit risk of pissing off the very person who treats you for a life and death condition!
UCLH is a teaching hospital with a research centre attached so that’s where the best expertise would be i thought. The consultant at Chase Farm was clearly miffed until I uttered “....and it will be far more convenient to get to via the tube.” I said. Finally an acceptable answer and the only one used on the transfer letter.
In fairness I thought Chase Farm and its twin Barnet hospitals were good, but UCLH was an upgrade to business class. First meeting, no delay! My case nurse comes in and introduces herself and gives me a welcome pack. No sunset cocktail vouchers but a Macmillan book on my condition plus loads of other info. The doctor gives me ample time and I feel welcome.
Most impressive is the MyChart app. At Chase Farm (it may have changed now) you have your blood tests two weeks before the consultation where they gave you the results. At UCLH I’ve had results posted on the app within 24 hours! That’s two weeks less worry which is important. It’s the opportunity to conjure up the questions to ask, both at the consultation and Dr Google e.g. ‘one in 750 people have only one kidney.’ Thank’s Dr Google, good to know. ‘....and here’s several steak and kidney pie recipes’ hmmmmmm! ‘.....and here’s the mortality rate for your age group within five years of diagnosis’ ENOUGH Dr Google!
So back to normal as in I get on with my regular life. (see marathon and Mamblasa blogs) To cut to the chase, the white cell count graph looked like a sales chart of e-scooters. Steadily going up in spite of regulation banning them. Metaphorically speaking: the excrement is a long way from the air-conditioning until.....
“You’ll probably need to have chemo within the next 12 months. “
I was expecting a same ‘ol same ’ol chat about the ever increasing white cell count, but what I heard (which was not what they said), ‘get your affairs in order, we’ll leave a revolver on the desk!’
This was Feb/March 2023
Let me be clear, nothing had changed in my condition from five minutes earlier before the conversation started, but something certainly had shifted. ‘Tick tock!’
With hindsight, I had experienced anxiety (no shit Sherlock) and loss.
What had I lost, time? No. It was pretty much five years since detection and I’d been told I’d need treatment in five years, but this seemed somehow extra real. The threat was closer, the wolf was about to leap out of the shadows and rip my throat, and it’s not even a full moon! The Dalek was about to glide around the corner with no prospect of regeneration (me not the Dalek).
I have lost the opportunity to live my life as I choose.
I have lost naivety, something that’s undervalued until it’s lost.
I have lost part of the person I was before diagnosis.
I have lost....t.b.c.
And then a week or two later, I’ve come to terms with it, and agreed an action plan and turned it into motivation to live life to the fullest. It never was a death sentence, just the start of treatment. Six monthly treatments of two consecutive days of chemo. That’ll be uncomfortable but so was the second half of the marathon last year. It disrupts my schedule as I’ll be prone to infections for 10 days after each session and generally susceptible to bugs for two years. It effectively resets the white cell clock and off we go again for another five years.
Optimism has returned.