On hope, life affirming moments and one beautiful graph

It’s fair to say that chemo has hit me hard.  How hard?  Just have a look at the video I took after I got home from chemo 2.  If a picture paints a thousand words, that video will tell you a lot about what it’s like dealing with the various side effects of oxaliplatin.  And that’s without the twice-daily top up of capecitabine that, amongst other unpleasantness, has aged my hands by about 40 years and the fingerprint scanner on my iPad doesn’t recognise it any more.  Moisturising ain’t gonna cut it with this stuff.  Add to that the constant sickness, chronic fatigue and draining diarrhoea and my full time chemo job is pretty demanding; I’m pulling plenary of extra shifts and a load of overtime.

How do you measure success?  Health, wealth, happiness, purpose, inspiring the next generation or making your mark on this world?  Well for me in chemo times, success is managing the symptoms and side effects well enough to avoid unscheduled trips to A&E.  It has been a very very rough ride in this second cycle, but I have at least achieved this.  And until last Thursday, four days before chemo 3, that was pretty much all I’d done in two and a half weeks, save for a couple of concert appearances and rehearsals on the days where I could drag myself out of the house.

Thursday was expo day and this may be familiar to anyone who’s followed this blog for at least a year.  The Music and Drama Education Expo is set up like most trade fares, with companies promoting themselves and selling all manner of instruments, equipment, software and services.  There are also a few spaces set up with a schedule of seminars, practical demonstrations and workshops.  I ran one last year on classroom improvisation – they put me in the keynote theatre!

This year, I was on the bill again, not to deliver any training, but to be ‘interviewed’.  Well – they called it a ‘fireside chat’, but there wasn’t a fire, so if you’ve got a stage set up with comfy chairs, bottles of water and microphones, that sounds like an interview to me.  Phil Croydon, the editor of Music Teacher Magazine, had the dubious honour of keeping me from meanderingly rambling on as I tend to do. We essentially discussed what’s important to me in music education, given that I’ve chosen to use much of my time left on this planet to stay involved.  It also helped that I’ve spoken to a couple of prominent Labour Party figures and wrote an article for the magazine about the vague policy directions they’ve so far declared.  Phil did a great job with this and fed me opportunities to be gushingly passionate and proud of some significant recent achievements in the field. But I wouldn’t recommend playing poker with him for reasons I’d discover later that evening.

After returning home for a quick power nap, I readied myself for the second event of the day.  The Music and Drama Education Awards.  I was given a free ticket due to having been on the judging panel, giving up a day during October Half Term.  Being at this glitzy ceremony required dressing up in black tie and that accessory is important here because I’d spent the previous Sunday unable to move much but with a proper self-tie bow tie and as many YouTube videos as I cared to access.  Given I’m so cack handed with this kind of thing, it took me hours but eventually I cracked the bow tying procedure not once but thrice.  There’s much talk floating around about resilience.  Forget choosing harder maths problems – if you want to test someone’s inner fortitude, give them one of these fiddly little things!

It turned out on Thursday afternoon that I hadn’t reinforced this newly acquired skill with enough daily practise, so almost made myself late for the ceremony by working it out again.  But I strode my way through a bit of unfavourable weather to find Susie at Bond Street Station before we made our way to a posh Mayfair hotel and drinks reception.  Susie and I spent our teenage years playing in wind bands around Barking and recently reconnected through music education events etc. and I’d say that, between us, we’ve got a well founded opinion on just about everything.  So when I was offered another ticket to this swanky ceremony, Susie was a strong candidate to help this huge introvert through all the networking and small talk – like an emotional support human!

It turned out I needn’t have worried about making conversation.  All sorts of people, including fellow judge Ruth from the ISM, seemed to have plenty of shared ground to cover, like running and charity fundraising, including all the talking shop, so the evening breezed by.  I should probably have been more curious about the extra ticket.  And that we were sat right at the front, next to the red carpet.  This gave us the best seats in the house for the music and drama performances that nicely broke up the evening.  I’d pretty much forgotten who’d won what, so the award announcements were surprising enough.  These joyous moments for those concerned reminded me of the feeling I’d left the judging day with: The sector really is in good hands.  Given that I’m looking at early retirement sooner rather than later, knowing this does my heart good.

But it turned out that another surprise was coming and right in my direction.  When the citation for the ‘Editor’s Award’ came with a few words from Phil,  with who I’d spent half an hour in conversation earlier that day, a few of the statements were suspiciously familiar.  Too familiar.  I can’t really say how it felt when my name was announced and with it a huge picture of me with baton in hand.  Because as I made my way along the red carpet to accept the award, shake hands and pose for photos, it was all in a complete daze.

It will take a while for this to really sink in.  I can’t ignore the nagging voice in my head that tells me this only happened because I’m dying of cancer and all I’ve received is a glamorous gesture of pity.  Perhaps I’ll take the display of professional respect and acknowledgement of what I’ve done, especially recently.  The award was given for teaching, advocacy and writing for/on music education and it’s hard to deny that I’ve done all of these things, hopefully as well as possible.  Either way, I get to keep this award and have a daily reminder that maybe, just maybe, my efforts have had an impact.  I hope I have the opportunity to do more to justify the plaudits I’ve received.

And after Friday’s appointment and blood test, there’s a promising indication that I might just have another comeback in me.  When a Doctor feels the need to start a post-appointment email with ‘amazing news’ and sign off with ‘I am truly delighted for you’ then that is pretty positive.  The amazing news comes from the CEA blood marker taken from my most recent blood test.  It doesn’t necessarily correlate with how big the tumours are but, roughly speaking, the more cancer cells, the more CEA.  Not being a fan of data analysis, I can’t believe I’m writing this but – well – I’ll let this graph do the talking:

This represents my cancer journey so far, with a drop after chemo, then surgery and steady growth through September, followed by a sharp ascent from December to January.  You might notice it’s gone down by quite a bit in the past six weeks and that is due to these two cycle of chemo that I’ve been going on about (literally) ad nauseam.  It looks like they’ve had an effect and quite an effect at that.

You’d think I’d be unmitigatedly thrilled at this most promising result.  But I’ve got mixed feelings.  You see – cancer has taken a lot from me.  It’s debilitated my body and crushed my spirit.  I don’t mind that – both will heal in time.  What really gets to me is the loss of control and any notion of certainty.  Mine is such a precarious existence.  This is a ridiculously irrational thing to think but it’s far easier for me to take in a constant stream of increasingly bad news.  I can understand that, every day, I’m dying a little more until … I do.  

But hope is a dangerous thing.  What I hope for in order to not be disappointed again?  A good few months, year, few years, decade?  Well certainly not a decade.  That’s been made very clear to me.  But a bit of hope leads to more and at any point, cancer could easily take hold in a life limiting way.  I dare not hope too much.  It would be too painful to be let down again.  It’s so much easier to fear the worst than hope for the best.

And talking of fearing the worst, here I am in the chair for chemo three, shortly before my hands start buzzing.  I hope a vein doesn’t collapse or anything.  But I can hope that, with a reduced dose, this lot of chemo won’t be quite as bad as the last one.  It can’t get worse.  Or maybe it can.  I was talking to someone the other day who’s on chemo and being given morphine for bone pain.

That puts things in perspective – there’s a way to be thankful for anything!