On May 22nd 2023 my life changed forever – not just mine but my wife, kids, mother, brothers friends and colleagues. I was diagnosed, completely out of blue – with Acute Lymphoblastic Leukaemia. A diagnosis that derails everything.
Go to Accident and Emergency
Do not pass Go
Do not collect £200
My diagnosis was a complete surprise – initially blamed on long Covid for 2 months worth of doctors appointments resulting in what appeared to be a persistent shortness of breath and fatigue – the fact that I was travelling relentlessly to the USA at least once a month and selling the family home of 19 years to move to the Isle of Man masked and provided adequate excuses for a diagnosis not to be immediately apparent.
It was a bolt from the blue and an instant stop to everything I loved but also as significant brush with death a reset opportunity. It was how I imagine being kidnapped or sent to jail would be – a complete stop to everything.
Everything in my future was cancelled.
It was close to 9 months before I even stepped foot in a pub for a drink or even just a catch up with friends face to face. I also stopped drinking (nice glass of wine or a couple of pints isn’t really the done thing when glowing in the dark with chemo). Sadly chemo does provide the same massive hangover / cloudy mind / brain fog feeling without the fun of the night before.
Oh and it hurt – on my initial admittance to Blackburn A&E and then blue light transfer to The Christie in Manchester my condition deteriorated dramatically and the pain increased to the worst I’ve ever experienced. Having 4 litres of fluid (yes that is correct litres – 8.5 pints) drained from my chest cavity – fluid built up through leukaemia and subsequent bleeding as the drain rubbed om my inflating lung didn’t help. Told you I was breathless………
However this is not a weep fest, more a salient tale that no matter where you are in your life hopefully you take something from this route map and experience. I recognise I’m treading a path where others have gone before – although there are only 12 in my age group with my flavour of Leukaemia a year in the UK. I officially qualify as Mr May if there was ever a calendar. A calendar made up of very gaunt people, almost malnourished that make slim fast / weight watchers dieters look like they are playing at it.
What I have recognised is a commonality with lots of people who don’t have the same specific illness as me but have all the incumbent side effects and changes to their lives so this is my route map – pit falls and all.
Please don’t confuse this with self help or some confidence inspiring life hack tale. It’s not all rainbows and unicorns – leukaemia (and all cancers I suspect given the people I’ve met on my journey definitely fall in the 0 out of 5 recommendation stars – do not go here if you can avoid it – there is literally nothing good (unless dramatic weight loss, a variety of comedy haircuts and sampling a Michelin star worthy tasting menu of drugs is worth a near death experience…..).
I’m from the north. The proper north of England – north of Manchester where we thrive even in a world of drizzle, cold and perceived poverty. We also tend to have a different view of the world and a familiarity with struggle but also beauty. Secretly the area I am from – on the fringes of the Trough of Bowland is spectacularly beautiful – moors, fells, forests and empty. It rains and winter is hard and the closeness of places like Blackburn and Burnley both best described as a difficult holiday destinations lurk on the fringe.
However as a northern self-help guidance falls into a different bucket to never ending positivity masked by a fake smile I’ve seen elsewhere – this is the truth the whole truth and nothing but the truth.
I am a glass half full type of character – in fact I’m half full and already thinking how can I get the other half. I am an avid reader of the news and books and oft different viewpoints of the world or just down right argumentative and contrary (often my wife’s opinion of my alt view)
I have a questioning mind – underpinned by “WHY” – swiftly followed up by what, how, when – kinda like an annoying 5 year old. I like to understand how things work, how to make them better, how they break or fail – be it a mountain bike, an economic model or political viewpoint.
This is more of a travelog of a journey through time and space ( only kidding – the space bit only really happens when they get the good drugs out and to be honest I don’t remember much of that but I had quite a few apparently – Oramorph is the one you want (thinly disguised morphine) but also the giver of the worst nightmares.
It’s a tale of my resilience, sadness, happiness and deep sense of changed perceptive. For people in this sort of position “You only live once is often rolled out”, afterwards as part of a changed sense of perspective – you have to get there first.
I have survived this and I’m not dead yet and while I only live once it’s not baby out with the bath tub time just yet.
I don’t see cancer as a fight and perhaps that’s a good thing for people like me. Many in my position are described as a fighter and somehow if you fail you are weak – cancer isn’t a fight I believe you win – it’s more like having a high speed crash and if you get lucky and you and many others help you wrestle with it and try to find a soft landing but sometimes the crash just ends in a brick wall rather than a soft hedge – it’s doesn’t make you any less strong or weak it’s just what it is.
I’ve crashed lots of things, often at pretty high speeds be it mountain bikes, cars, motorbikes or skis and walked away – this is just a different crash and I’m not dead yet and for those that hit that wall I will never think any less of you.