Imperfect 10: a defiantly different decade

Cheers!

My relationship with diaries is a troubled one (erm, happy belated birthday, everyone!), but a growing number of dates have been sticking in my mind. Back in March I celebrated my first second birthday, a year after my stem cell transplant. A few months later, as I celebrated my 33rd birthday and fourth wedding anniversary, I realised it had been 15 years since I’d left school, and 10 since I finished university (completing my undergraduate degree). In mid-October I found myself thinking back two years to my relapse with acute lymphoblastic leukaemia. And yesterday (31st October) marked a year since I started my staggered return to work.

Bigger than that, though, while people all over the world dressed up as blood-sucking vampires and bloodthirsty zombies yesterday, I was contemplating the completion of a decade since my first diagnosis of blood cancer. At least my medical history should frighten off the vampires…

It feels like a suitable moment to look back over the past ten years and say: “Wow.” Ten times.

I think this is how some meds were made

Wow 1: George’s Marvellous Medicine
Whichever way I look at it, it’s astonishing that I’m here. From identifying lymphoblasts getting in the way of good blood cells to bombarding me with enough chemotherapy and radiotherapy to knock out the baddies but not the goodies, and from finding a stranger’s matching genetic make-up for a stem cell transplant to shepherding my new immune system through billions of bugs, modern medicine has been a marvel.

Wow 2: People power
People are truly, mind-blowingly wonderful. If you don’t believe me, try contracting a life-threatening illness. Or, preferably, take my word for it.

Wow 3: All bets are off
When educating 16-18-year-olds about the life-saving potential of being a stem cell, organ or blood donor, I try not to say anything about what inspired me to be there prior to asking the students where they think they might be in five years’ time. Then I show a photo of me looking suitably bald and in hospital and say that wasn’t where I was expecting to be. It’s a pretty extreme case, but even the smallest ups and downs of my illness, my treatment and my life have constantly reminded me that however carefully I might wish to plan for the future, I can never be certain what’s around the next corner. That’s fun, sometimes.

Wow 4: Life goes on
I reckon that for about 43% of the decade, I’ve been in the midst of some sort of treatment. But for 100% of the time, life has gone on. I even managed to watch most of 24 with my sister, Harriet, and all of Breaking Bad with my wife, Mariacristina.

The vows didn’t mention beards…

Wow 5: Valuable vows
Mariacristina reminded me (and anyone else in her Facebook world) the other day via a shared article that whoever thought up the marriage vows wasn’t joking when they included “in sickness and in health” (or “nella salute e nella malattia”, as we also said, making it twice as powerful, right?). Nobody insists on seeing medical records before getting engaged, but Mariacristina knew what she might be letting herself in for when she leaped around Wandsworth Common shouting “Si! Si!” back in 2010. But reader, she married me anyway – and stubbornly refused to let me take on leukaemia for a second time by myself. She even let me off the washing-up for a while.

Wow 6: Unexpected opportunities
I was never going to make the Olympic squad or even – no, really – the England rugby team. Now, though, I have a lifelong natural qualification for the Transplant Games – and they’ve only seen the start of my (light) sporting resurgence…

Let’s talk about me… (Naples, October 2015)

 

Wow 7: Telling tales
There’s something so powerful about a real-life story. To keep an audience’s attention takes some skill, a splodge of courage and often plenty of planning. But when you’ve lived a relatively rare experience, you’re 90% of the way there. There’s a huge degree of empowerment in being gifted with a story that people want to hear.

Wow 8: Stronger together
Talking about yourself to a rapt audience is one thing, but talking to other people who are going through or have had similar experiences can be even more powerful. Meeting people further down the treatment line is inspiring, discovering their tips and tricks is hugely helpful, and knowing you’re not alone in facing your challenges is comforting. I’ve made some fabulous, totally unexpected friendships over the decade.

Wow 9: The kindness of a stranger
If my life over the past decade has been like a Jenga tower, threatening to tumble at various moments, my friends and family have consistently managed to fortify the foundations and keep me standing strong. When a transplant became the only viable option, though, it was the bricks from an anonymous donor that plugged the holes that would otherwise have brought me down. Thank you, donor.

Wow 10: Time flies…
Ten years and a day ago, I didn’t even know what leukaemia was. That was my first lesson; when I think of how much I’ve experienced and learnt since then, ten years doesn’t seem so long. But in other ways it all seems to have shot by in a blur.

Ten years on, life is still beautiful.

 

Expectation management

First birthday bonanza

Last time I posted, I was approaching my first second birthday – one year post-transplant – and somehow we’ve got to more than 100 days since that, given that it’s over a year now even since the momentous Day +100 that confirmed I was on the right track. For the record, the birthday celebration was fabulous, and involved a little more alcohol than the party 365 days before… Oh – and I’ve even had another ‘original’ birthday.

I’d love to tell you my stem cell transplant is now a distant memory and that I’m pretty much in the same shape I was before relapsing – and if I said it with enough conviction, I’d probably convince myself, too. Sub-consciously, I’m doing that all the time – but it doesn’t mean it’s true.

It’s been a very interesting pre-season for Pompey (FC – the football team I follow), as we’ve hired a successful manager who’s overhauled the squad with proven and promising players.. On the messageboards, many fans are already expecting us to win the division at a canter. And why not – aren’t the ups and downs of raised and dashed expectations a fundamental thrill of sport?

Still strong? (Mexico)

One discussion on the board particularly grabbed my attention, though. One older player (it’s odd to think he’s probably about my age) from a top club was turning down opportunities lower down than the leagues, in the hope of still being able to do a job in the top divisions, whereas another was happily moving down to a level where despite his ageing legs and slowing reaction speed he could still be a key player. Only time will tell whether the former was right to push to keep his spot at the top table, or if the latter will have a more satisfying season at a lower level.

How did they decide? It’s clearly not an exact science, but some degree of self-awareness must play a part. I’m still not sure I’ve got the hang of it: truly accepting and understanding the changed circumstances and increased limitations I am now facing – even though I’ve come off pretty well, all things considered.

Now I’ve recovered to a certain point, I want to do everything – possibly more than pre-transplant – and often assume I can, even if experience proves otherwise.

When Anthony Nolan first announced they would be taking a team to the British Transplant Games, my first thoughts were that perhaps I could compete in a ‘lighter’ sport, and enter one short sprint, in the terrifically ambitious expectation of both getting fit very rapidly and not aggravating the ankle and knee injuries that pop up every time I convince myself my limbs will let me play football again.

At work, it was tough to admit to myself that I wasn’t (and am probably still not) ready to work five days a week again, and even tougher for me to understand and accept that that would mean a change of role. More generally, I dream of grand projects and ever-greater involvement in the charitable work I find so rewarding.

Believe! (Cuba)

I seem to believe that through sheer force of will, I can do everything. And, to an extent, that probably helps me to do as much as I manage – just as the determination of the older footballer stubbornly refusing to drop down the divisions will probably give him more chance of continuing to succeed. But it’s not always possible, and that’s what I’m trying to learn. Sometimes you just have to try, though, and doing so enabled me and Mariacristina to spend a fabulous 16 days on holiday in Cuba and Mexico in April.

As the football analogy shows, we all have to face declines as we grow older. Nobody at 40 will run the 100m as fast as they did when they were 18. But by then, life will have moved on. Footballers become coaches or managers. School sprint champions become providers for their family, or business champions. New doors open – and even transplant recipients with less energy than pre-illness can discover new opportunities.

Olympic wannabe

I woke up one morning and realised how absurd it would have been to enter the 100m at the Transplant Games. So, for the previous couple of Saturdays, I’ve been heading over to Streatham Park Bowling Club to get a feel for what is a completely new sport for me, prior to competing in ‘Lawn Bowls – Beginners’ at the Games on 1 August. And it’s great! The Transplant Games are basically just like the Olympics, so I’ll expect an open-tour bus if I accidentally fall into the medals…

Meanwhile, on the health front, I came off the anti-viral medicine (aciclovir) – and promptly got shingles, which kept me itching for a good few weeks but I seem to have got on top of at last. I’ve started my childhood vaccinations, but sadly didn’t even get a lolly for good behaviour. And blood results have looked good, although I’ve been kept away from immuno-suppressed fellow haematology patients since the potentially contagious shingles appeared.

I’m not the man I used to be – but that doesn’t matter. Life is different; but feels more exciting than ever.

One

One

Cuba

Cuba

Mexico

Mexico

Mexico

Naples

33

33

Nephew and niece

Family

Dodgy top-knot

Day +362: You’re only one twice

Just one candle this Thursday

Everything’s relative, and it’s fascinating to compare the 101 days that have flown by since I last posted here to the critical first 100 days after my bone marrow transplant – which took place just under a year ago. Life’s been turned inside out and upside down, but somehow we’ve bundled through it all and come out blinking at the imminent flickering of a candle to celebrate my first birthday. I may have got a bit carried away in the photo to the right: there are still three days to go…

At this point in 2014, everything we’d been working towards since my relapse the previous October was hurtling towards the crunch of the actual transplant on 26th March. What would happen after that was anyone’s guess, though I’m not sure anyone was ever ready to think too much about anything beyond the next day. One year ago, I’d kicked off the induction chemotherapy and knew my immune system was being systematically destroyed, ready to give the new stem cells a chance to build me a new one – but the extent of my ambition then was probably to get one last hot chocolate from the hospital café and a chat with the inhabitants of the St George’s fishpond.

Remarkably, far more time has now passed since that critical day in March last year than there was between being my relapse diagnosis and the transplant – though in many ways the whole period blurs into one crazy, blindfolded rollercoaster ride where you never had much idea where the tracks ahead would take you, or even if there were any tracks at all.

Day +100 – a long time ago

Wow. My first (‘second’) birthday. There’s so much to celebrate; so much for which to be grateful; so much to wonder at and breathe a sigh of relief for. Celebrate life!

I’m still recovering (though it doesn’t always look it), but things are still on the right track (as ever, that’s as much as I can say). It’s astonishing to think that it’s not even a year since I was putting my life in the stem cells of an incredibly generous anoymous donor – stem cells, it seems, that have done a pretty damn fantastic job (though I’m not sure just how long I can keep growing my hair without Mariacristina chopping it while I’m sleeping) .

This isn’t a closing post, or a signal that everything’s perfect and finished and we can all go home and forget it all happened. But it’s a fabulous moment to be grateful and joyful and full of wonder and awe at what we’ve been through, and where we’ve got to.

And yes, I’ll be celebrating. A lot. After all: you’re only one twice!

One year on, and still eating wonderful food (blame Mariacristina)…