Yes…Ok…I admit it…
It has been a very long time since I last cast my fingers over a keyboard with the aim of expressing my thoughts in flowery first-person blog form. And yes – it does annoy me that just two weeks into LETJOG I let the habit slip and subside completely. In my defence, at an average of 20 miles a day over the sixty from one end of the Mainland UK to the other, I was generally too tired to so much as eat and stretch, let alone do anything that involved any brain power, like writing in continuous prose!
It must be common knowledge by now that, early last September, I arrived at Land’s End, having completed the ‘scenic route’ of 1,200 miles in precisely 60 days, treading over 3 million steps. I recorded an emotional slow motion video with a voiceover stating as much. Such is the way, I suppose, of the ‘instagram generation’ which I appear to have become part of. Why pour over the carefully worded phrases when you can spend a few seconds getting the gist before scrolling along to catch up on a load more ‘inspirational’ stories? I must say I’m getting used to that way of working, but as I type this out, I remember that there is something equally valuable to be created as thoughts appear on page or screen, mechanically tapped out by flying fingers as they struggle to keep up with the speed at which my brain sometimes functions when the balance of prescription drugs enables quick and coherent thought.
And if there were a way to sum up the past year or so since that most active of summers, ‘the balance of precipitation drugs’ wouldn’t be inaccurate. This is what happens when you’re not very well and in an overall state of decline – the drugs do work and in increasingly weird and wonderful ways. For anyone not having paid close attention to the health rollercoaster I’ve experienced of late, skip back to late Autumn (2024) when a few steps away from finishing a routine local run, I was found unconscious and woke up in an ambulance. I was out cold for around 20 minutes and know this because no one thought to pause my running watch, despite many a joke T-shirt being available on the subject. A sort of smashed up face turned out to be the least of my worries and a scan for concussion after what was found to be a seizure revealed a metastatic tumour in my brain.
‘Will this affect my personality or anything?’ Was the first question that came to mind when discussing this latest turn of events with my consultant oncologist. I was told it wouldn’t but that a medium-sized brain metastasis was a bit of a game changer and doesn’t come up too often. Apparently most bowel cancer patients are dead before the things spread through liver, lungs and lymphatic system to the brain. It didn’t help to learn that this little cancer-nugget was on the ‘creative’ right side. What if I lost my ability to musically improvise or – worse – would become even more boring in conversation than I was already?! But this is where the drugs came in. Dexamethasone is a steroid (no – not the ‘anabolic’ type) that as well as managing many a chemo side-effect, happens to reduce the brain swelling that occurs around tumours. Rather than getting me ripped and full of ‘roid rage’ this little tiny tablet has (besides controlling the seizures) had two specific effects on me: I can’t stop talking and I can’t stop eating. The former is merely annoying if you’re stuck in my presence at a party or something and perhaps might give a false impression of how enthusiastically well I am. The second has had life changing consequences: be it due to metabolic effects, increased appetite or a combination of the two, I’m now double the weight and size I was at peak running fitness. It’s like I count as two people now.
It could be because I’m confronted with this change every time I look in a mirror or notice people who haven’t seen me for a while casting smiles full of schadenfreude in my direction but the rapid weight gain is still bothering me at least as much as the real piece of bad news that came with the new year. It wasn’t just the brain cancer that had been busy growing inside me. By February, a new set of scans showed at least two new liver tumours, cancer in a load in the lymph nodes on my spine and over fifty of the things speckled around my lungs. It would not be a case of hyperbole to say that I was (and still am) riddled with cancer.
This rapid growth in metastatic tumours produced a conversation at my next appointment that absolutely no one wants any part in. People have taken to describing my condition as ‘terminal’. Now – with the balance of probabilities skewed far enough – I fit the medical definition of the term, meaning I was (and still am) officially expected to be dead within a year. Some people in this situation would prefer not to be given this kind of update, if available. I suppose knowing less about the expected time scale enables one to live their life more ‘indefinitely’ like everyone else does. But at every single appointment, I ask about my prognosis. Knowing it’s more likely than not that I’ll be dead within a year helps me to make some really important decisions after all. Do I really want to try and work my way back to the classroom? Who exactly does this benefit, when I’m not just likely to be back on chemo within weeks, but in the ground within months? Not the kids, who need stability above all. Not my colleagues, who need colleagues able to (at very least) reliably turn up to work. And not even me – I like to be useful but it’s odds on that with all these health issues, I’d regularly make myself into someone else’s problem. This is why I’ve now begun the process of early ill health retirement through the teacher’s pension scheme and once completed, will be forced not to work on pain of paying it back. It’s a big step, but one that makes sense being even closer to the ‘end of life’.
Hopefully I’ll find ways to keep myself busy in retirement. In the quieter times, my mind tends to wander and I’m not sure if I’ll ever get used to this probably being my last iteration of the current day or month, e.g. not living to see another July 30th. Suddenly, it feels a bit overly ambitious to think about next summer or mentally plan even modest bucket list type activities. It’s such a consideration that makes me realise quite how fortunate I’ve been in the past two and a half (or so) years since diagnosis. This is a strange sentiment to come out with in the fate of terminal illness but please – hear me out. Up until this year, with a few notable exceptions, the cancer itself hasn’t caused too many symptoms. And just look at what I’ve achieved since diagnosis…. Having updated this website to include a list of cancerous achievements, it’s a little overwhelming to go through everything and it’s quite possible I’ve missed off a few major ones.
Even in a 2025 dominated by chemo and not a lot else, I’ve received a good few accolades, including a lifetime achievement award from the Independent Society of Musicians, being made a Music Mark Champion and even an MBE. It really is a shame that my late father didn’t quite make it to see the last of these being conferred upon me as the chance to make my family proud one last time is what stopped me refusing an honour with ‘British Empire’ in the title. It’s a bit unclear exactly how these things are given out and I’m most grateful for the gong and the prestigious awards, but I can imagine hesitant conversations happening in boardrooms along the lines of ‘how’s he doing? Will he be here next year? No? Ok – we’d better give out that gong sooner rather than later’. Perhaps this also happened at my Alma Mater the University of Birmingham but there was already a backlog for honorary doctorates, so I was asked along as an ‘Alumni Representative’ to don a gown and funky Tudor hat to lead a procession of English graduates.
The desire for winter sun took me to Tenerife and what may well be my last proper attempt at what could even generously be called ‘running’. Coaches Kelvin and Leanne helped get me through unscathed as we hit the dusty high-altitude trails, before various combinations of family came along to see what all the fuss was about. By the end of my month in the sun, I was starting to notice some aches and pains. By the time I returned home, the pain especially in my back was overwhelming and all-consuming. I did my best to rationalise this. Perhaps – now in my 40th year – this was the kind of back pain that comes with middle age? Or was it due to the rapid gain in weight? At my post-scan appointment, I found myself both relieved and saddened that the back pain wasn’t down to ageing or gluttony but tumours in lymph nodes by my spine digging into pain receptors or nerve endings or some such. Whatever the cause, the solution was (and still is) twice daily doses of slow release morphine tablets. That’s right – I’m now effectively a junky – relying on the benefits of ‘controlled’ substances.
By April and in the midst of my latest three month chemo block, there was one more award to pick up – that of the ‘Spirit of the London Marathon’ for last year’s efforts with the trombone. The reward for this? Guaranteed London Marathon entry…for life!!! Initially, I was told that (for admin reasons) I wouldn’t be able to take part in this year’s event, until I pointed out that given the whole ‘terminal prognosis’ thing, it really was (in all probability) a case of ‘now or never’. Then it dawned on me…I had to go and run the thing!
With Jon as my ‘guide runner’ we trudged those 26.2 miles through London in not much under 8 hours, but nonetheless, we got there and I received my second finisher’s medal in two years. For anyone not familiar with how long it takes to run a marathon, this was a run at most people’s walking pace. I put it down to being in the midst of chemo but it really was quite hard work and far more difficult than I remembered running being, even at altitude back on the Tenerife trails a few short months earlier…
Around three weeks later, and about to undertake chemo round 6/6, I was still feeling a bit unwell and increasingly breathless. But on the day I presented myself at the chemo ward, I could barely walk a few steps before having to stop for a breather. Not exactly the behaviour of an athlete in his prime. By the time I was seen by the nurses, it was clear it wouldn’t in fact be a chemo day and I was taken for a scan. The first sign that something was up came in the form of a nice comfortable hospital bed for me to lie on. A little strange for a ward full of arm chairs but never mind… Then the second came in the form of a transfer to…the resus ward. Was this the only place they had a space or was I in real trouble?!
Probably the latter. Because I was eventually told I had a (rather large) pulmonary embolism that was (and possibly still is) ‘saddled’ across both lungs and right in front of my heart. By the time of my 2am transfer to the respiratory ward, I was being told increasingly worrying news. This peaked when a frazzled looking resident doctor asked me about DNR preferences and priest visits. Not even being allowed to sit on the edge of the bed, let alone get up, I was quite incentivised to follow these instructions. I certainly didn’t want my blood clot to dislodge and block my lungs completely. Thankfully, the real danger period lasted around 48 hours and after 5 days of being regularly stabbed with blood thinning injections, I was discharged with a couple of days at home before…being sent back back to the chemo ward! After all, I had another cycle to get through.
This may sound like unnecessary cruelty but I’m pleased to report that, in fact, the drugs do work and six chemo cycles had shrunk my dozens of cancers enough for me to have a break from treatment of at least three months. With numbers trending back up, that may be all I end up with for a break but nonetheless, I’m taking my two or possibly even three summer holidays very seriously. Knowing that this is more likely than not to be my very last summer – full stop – does incentivise a person to take every opportunity available.
Holly bobs blog to follow at some point when I’ve worked out what’s going on. In the meantime, enjoy all of yours!