This blog covers the past six weeks. That in itself is something to consider, considering that earlier this year, I considered my situation on a daily basis. Why? I suppose I’ve been pretty busy and have had plenty to write home about. But the past six weeks haven’t been much different to the six or so years pre-diagnosis. It’s involved some of the running and music that I used to get involved in. But more pertinently, work has built up from the odd half day to four full days a week and by November, all being well, I’ll be working full time.
I can say this with a good degree of certainty because I had an appointment in mid-September and was told that I’ll be left alone until until mid-December. That’s three months to get on with my life and double the stay of execution before the possibility of more chemo. This remarkably generous extension to my window of wellness was countered by the news that I now have lung cancer. I was a little concerned when I heard this – I need my lungs for breathing – but apparently the cancers are really small, slowly growing and won’t cause me any trouble for ages.
It’s not been easy telling people that bit and explaining why they shouldn’t be concerned. As I understand it, all of my remaining tumours are fairly small, growing slowly and aren’t causing symptoms. So the plan is to do nothing whilst I still have a good quality of life and save more chemo for when it’s really going to help with that. There’s a chance that chemo could stop having the effect it has so far and other treatments e.g. immunotherapy are ruled out by the KRAS mutation. I’m as surprised as you by the current state of affairs. Right up to the day of the appointment, I was ready to volunteer for more chemo now in order to get that 3 month cycle over with in the hope that it would give me – say – 6-9 good months, and another healthy summer. I don’t mind using winter to essentially hibernate whilst being pumped full of chemicals. But apparently it doesn’t work like that and the best treatment for now is no treatment.
People keep asking me why surgery is off the table and the aim isn’t to remove what’s currently growing. I’m a good candidate for surgery after all. This is despite the ‘standard’ letter I received from the hospital that carried out genetic testing informing me that I don’t have any genetic predisposition to getting bowel cancer. Apparently I should have another colonoscopy when I’m 55 (I’m sorry to break it to you but…) and in the meantime, need to lay off the booze and fags, clean up my diet, lose weight and get some exercise. Anyone who knows me at least a little will be laughing out loud by this point. For anyone who doesn’t, I exhibited absolutely none of these risk factors pre-diagnosis and ran 3,000 miles in the year before this all kicked off. So the considerations of whether I’d survive liver/lung surgery aren’t the same for me as for some. And the last major operation I had didn’t take all that much recovery time. But the sad reality is that – unless these cancers are identifiably giving me jip, there’s simply no point. Metastatic bowel cancer is such that it will just find its way around the body, no matter how intensively you play ‘whack-a-mole’ with it.
Anyway, here I am fit and well – apart from some kind of throat infection that is the inevitable result of working with children! But working with children I am and it’s been great, especially initially. Needless to say, absolutely all my colleagues have been wonderfully accommodating and kind to me. It’s amazing how much of the mundanities you miss. Like that brief conversation with whoever’s by the photocopier when you arrive, or just listening to a colleague moan about a difficult lesson/minor behavior issue. I felt both touched and a little saddened when one colleague apologised for venting at me. Everyone – please take this in. I don’t want to live a rose tinted, filtered, saccharine, blissful, closeted or ‘relentlessly positive’ existence. That is not real life and that is no way to live. You don’t have to construct a ‘Truman Show’ for me, I promise! Just because I’ve been through a load of tragedy and trauma, you absolutely don’t need to offset that for me. Everything is relative and your problems are important to me. They don’t pale into insignificance compared to mine because you feel them strongly and you can’t deny that and certainly don’t need to. If I happen to be the first safe person you come into contact with and you have to say something – do it. If I’ve done something wrong, tell me. If there’s one thing I value now above anything else, it’s genuine real life experience and that’s not always pleasant.
And if there was any honeymoon period to being back at work, it’s well and truly vanished by now. Sorry parents – I hate to say this but your angelic child has the potential to be reallyannoying, especially when placed in the group dynamic of a large class. I haven’t experienced anything horrible but it’s not all fun and games, even when attempting to enjoy composing percussive soundtracks for Tom and Jerry cartoons. That and the necessary admin that grinds you down. It always used to be offset by hard-earned moments of collective pure unbridled joy and yes – there have been some of those already.
That’s the social contract, I suppose. In exchange for my labours – physical, intellectual and emotional – I receive a modest but healthy paycheque and enough time off to do things like writing blog posts. But for most people, there is a clearly defined end point to this – the retirement age for my age group currently stands at 68. Clearly, that’s as relevant to me as my next scheduled colonoscopy. So it looks like this social contract is up for negotiation now – maybe I’ve found a get out clause. For now, it’s pretty simple and I’ve gone on record (you’ll see this declared on National TV next week) to say that whilst I can, I’m going to keep teaching. I’m still physically and mentally able to deliver and able to make a positive impact. Right now, I see no other option and I’m not very good at being off sick – I’ve discovered as much this year.
So far, so ‘inspirational’. But for how long? Longevity in retirement is far from guaranteed for the average person, but that average person will live thirteen years past my ‘normal’ retirement age. Have I done my time already? Do I deserve to live out my years peacefully? If I do, at what point do I actually want to call it a day? Given all that’s happened and what is known about my future, I just don’t see myself being physically able to keep working this time next year. But if I am, then what? Do my employers keep up the working assumption that I’ll at least be off sick for long periods but still allow me to make comeback after comeback? How many times should I prove this point? At what point will I be more of a hassle than an asset? Will I know when the right time comes?
Because I’m fully aware that even this vocational passion project of a career will eventually get to me as it does everyone else. This morning I encountered a picture of an exhausted looking cartoon bunny with the caption: Adult life is a constant cycle of ‘I just need to get through this week’ every week. This is exactly what it felt like and now does again. The working week has turned into a biological midlife cycle with its own natural rhythm. How long can I keep marching to the beat of society’s 9 to 5 drum (ok – more like 7 to 6 if I’m lucky) if this week I had an entire day off and still feel exhausted and croaking due to the inevitable man flu? What is sustainable and for how long?
More to the point, why do I have to think so hard about all of this right now? Can’t I just make the most of diving head first back into work? Because I’m disproportionately affected by one thing in particular – uncertainty. A couple of times recently, I’ve found myself agonising about the smallest things that might put me out of my hard re-established routine. I suppose this is understandable – I’ve lived on a knife edge for at least a year when my whole world could (and has) come crashing down any moment. So if there’s an opportunity that I might be able to take but I’m waiting on an answer, then of course this is going to magnify in my mind. It’s not at all surprising that I agonised over whether I had enough time to fit in a bag change, short run and eat dinner between work and a rehearsal. I’ve just had too much of ‘not sure’.
But that’s the truth of it. I’m not at all sure what’s going to happen and there’s no reason I should be because as long as I live, everything will be up in the air. Accepting and living with that is definitely a work in progress. Thankfully I have a load of loud and annoying children to take my mind off all of that. I think I now understand why others say that being around children ‘keeps you young’.