The unadulterated joy of three

Three (cake by Mariacristina; ‘B Positive’ hoodie a gift from Tim; beard artist’s own)

There’s something special about the number three. The rule of thirds. The Holy Trinity. The Good, the Bad and the Ugly.

Earlier this year I turned three. Three years ago, my new birth day (Day Zero, the day of my transplant) had a lot riding on it, to say the least. My first birthday was a huge milestone, not least because it meant moving from counting months to counting years. The second anniversary marked the potential – then realised – end of anonymity between me and my donor, who turned out to be a thoroughly decent chap called Tim.

Turning three boasted nothing quite so epic – but in many ways that was what made it so special. It was the first commemoration of my lifesaving transplant not to carry the weight of another tick in the box, another item to be crossed off my ‘to achieve’ list, accompanied by a sigh of relief. It was simply and purely a celebration of life.

The power of three… I wouldn’t be here without these two

Three cheers

So many great things have happened since my transplant, but when it comes down to it, they’ve all been side-effects of the ‘bonus’ life my donor’s stem cells gave me. Most milestones, though, brought the precariousness of my existence into sharp focus. Most of the reasons donors and recipients have to remain anonymous for two years after transplant in the UK relate to the fact that those first two years are the most risky.

I’d never take surviving another year for granted, but whereas I had eagerly (and slightly nervously) anticipated my first and second birthdays, my third just happened. And when life is just happening, three years after a generous medical marvel, the fog clears and you can start to appreciate how special it is to be alive. It’s like seeing something beautiful you’ve already ticked off in your i-SPY book: now you can appreciate it fully just for what it is.

The other one

The Three Supermarketeers (nephews Sasà and Samuele keep George under control)

I’m the third child of four, too. I always delight in complaining that while my elder brother got to be the eldest, with all its trailblazing connotations and attentive parenting; my sister was blessed to be the only girl, with the unique privileges and natural defiance that brought; and my younger brother gathered the spoils of being the youngest (a Gameboy, for a start!), I was left to be ‘the other one’. The third child, but not the youngest. The middle child, but skewed off-centre by virtue of not being the sole occupant of the role.

But maybe that role – or lack of one – gave me a freedom from the expectations weighing on my siblings. The achievements of the first two before me were impressive, but diverse enough to leave my own road open (or closed, if I preferred: I learnt to drive far later in life than any of the others). The milestones in my life marked off the years, but didn’t demand any greater meaning than celebrating another 365 days of life.

Celebrating life – and three years after transplant – with more than three friends

Bronze benefits

Even in the sports arena, coming third brings its own surprise benefits. Win and the pressure’s on to set a champion’s example, defend your title and respond to all the media demands. A silver medal, though, reminds you how close you were to reaching the pinnacle, and makes you feel you need to push yourself even harder to reach it. Someone once advised me to avoid coming fourth: it’s agonising to miss out on the three medals – to be in a sense the first loser.

But a bronze medal? You’ve achieved something, but you weren’t so close to winning that you wish you’d trained just that little bit harder – you had two opponents to overhaul, after all.

Reaching three years post-transplant was great, just for being what it was. I’m more than happy with that.

When my donor met my father: all three gangs enjoy the sunshine

The cancer look – or, why I have a beard

I’m too busy enjoying conchiglioni ripieni al forno to get a haircut

I remember my first day at Goldsmiths in 2007, officially registering for the Masters in Journalism I had decided to pursue as I neared the end of my chemotherapy course. I’d almost forgotten I was still on chemotherapy: a measly pill of a low dose could have been my daily vitamins. My hair had grown back thick and wavy, and I’d even blagged my way through four months as a temporary charity fundraising manager over the summer. Nobody who met me would have guessed at my unfinished treatment for acute lymphoblastic leukaemia.

At the time, though, almost every conversation I had with someone new turned quite quickly to the question of what I’d been up to for the previous couple of years. I’ve never been hesitant about talking about my cancer diagnosis and time in hospital – but nor was I keen to kick off too many conversations with: “Hi, I’m George, I’m recovering from leukaemia; what’s your name and have you had any life-threatening illnesses?”

Apart from anything else, the MA was in many ways the symbol of a new start for me. Before I was ill, I’d loved working for Literary Review, but after my life had been turned upside down in so many ways I needed a change. After a couple of speculative job applications weren’t even acknowledged, I decided a postgraduate journalism degree would be a good step towards a career. Fortunately I was accepted. I’ve sometimes wondered how much my interesting story might have helped my application…

Mariacristina wears her beard better

Registration at Goldsmiths required a form of identification, so I had my passport. As my new course mates and I queued up, still in the early days of finding out about each other, the photos in our ID inevitably became a good ice-breaker. For me, it also provided an unexpected opportunity to bring up the subject of my cancer in what I like to think was a hilarious way.

I was bald in my passport photo, my eyes were dark eyes and my unsmiling face oozed malice. The others frowned, laughing nervously as they wondered whether they’d signed up for a year studying alongside a released convict. “No no,” I said: “I was just in hospital getting treatment for cancer!” It definitely broke the ice – though for trainee journalists an accessible criminal as a source for stories might have been a bonus.

For 10 years from the printing of that passport, I could enjoy the double-takes of immigration officials as they looked at the photo, glanced up at me and rapidly back down at the picture, confused. It never took them long to recognise my face underneath the hair that had grown back – but it usually conjured up at least a smile.

Ch-ch-ch-ch-changes: my passport photos (bowl, Tintin, bald)

Now, to Mariacristina’s relief, I have a new passport – and I look a lot friendlier than in the last one. I had secretly hoped I’d be able to renew when I’d lost my hair again after relapse and my transplant, but alas: it had all grown back before I could. Passport control is much more boring nowadays.

I thought about this recently when a friend posted a picture with a ‘colour expert’ and posed an open question about whether others had had their colours – “or any styling” – done. It was in a group for people moving forward from cancer and brought up the topic of appearance and self-esteem for people who have/had cancer.

Funnily enough, I’ve never had my colours done (though I did dye my hair black once to play a Greek-American character in a play). I’m not sure what it means. Nor have I ever worried much about my appearance – sometimes to Mariacristina’s despair. As long as I look respectable, I’m happy, and the most I’ve ever done with my hair was to use a bit of gel to create a Tintin, back when they were fashionable. Actually, I don’t even think it was fashionable – just more acceptable than the bowl my hair falls into naturally.

It grew back every time!

Even when I lost my hair and looked rubbish and ill, my appearance was the least of my concerns. If anything, I enjoyed the opportunity to see what I looked like bald without having to make the big decision to shave it all off to find out. I didn’t mind looking ill, either – after all, erm, that’s exactly what I was. My self-esteem was never really affected by appearance, even through cancer and all its ravages.

But since my hair grew back after my transplant, I’ve had longer hair than ever before. And for the first time in my life I have a beard. Mariacristina likes it (at least when I remember to keep it tidy) and my nephews find it fascinating. I’ve never been very hairy at all, so even not shaving for a week only ever resulted in some pathetic straggles of almost invisible facial hair.

After I lost my hair, though, it came back voraciously. The hair on my head had some life, and my beard sprouted like a proper Viking’s at last. So I kept it.

If I could just grow my hair this long…

It’s only now, though, that I recognise appearance has had a more important part in my leukaemia story than I had ever acknowledged. I still have my hair longer than usual, and I have no intention of losing the beard. That’s partly because I quite like the look, and partly because I worry that if I shave I’ll never be able to get a beard again – but the main reason is something else.

My life has changed a lot since my relapse and treatment. Some changes have been enforced; others I’ve made as a result of circumstances, mindset and priorities.

My beard is a symbol of that. Without any conscious effort, it’s become to me an outward reminder that I’ve had cancer twice, been through a stem cell transplant and come out the other side a new person in so many ways. My beard (to me, at least) shouts defiance and joy – and the occasional crumb of Mariacristina’s delicious cakes, to save for later.

Save tiramisù cream for later in your beard – or on your nose

My changed appearance has given me a chance to make a positive statement about my life post-cancer. Life might have had to change, but I’m still here, and proud of who I am.

I’ve never believed we’re defined by our appearance. If that was the case, I’d never have been allowed through passport control. It’s so easy to make snap decisions about other people based on how they look, but how often do we know the full story behind the appearance?

I work in Shoreditch, collect records and have a Brompton (folding) bicycle. Anyone might assume my beard is just part of an attempted ‘hipster’ look (though it’s a bit more unkempt than most).

But sometimes it’s worth delving a little deeper… You never know what crumbs of meaning you’ll find within.

Life lessons on and off the pitch

Mariacristina and Geoff weren’t so interested in the rugby…

I’ve been glued to the Six Nations rugby tournament. Mariacristina, on the other hand, is baffled at why I want to spend a large portion of my weekend watching two or three dozen grown men kicking and throwing a ball around. I sympathise with her view, even if I lost the bet that in marrying an Italian I would be signing up for life with at least a fellow football fan. Funnily enough, she’s more tolerant of rugby…

The annual clash of England, Italy, Wales, Scotland, France and Ireland has not only given me countless occasions to leap off the sofa in frustration or glee, though. It’s also made me think about the many, many ways in which sport mirrors life.

Infinite possibilities

A few weekends ago, England played Wales, leaving it late to snatch the lead and secure victory. Afterwards, I read so many comments about how one of the Welsh players had brought about the loss by kicking the ball not off the field but down the pitch into the arms of an England player. Others put the blame on the Welsh winger who wasn’t quite in the right place to stop his opposite number from flying past for the winning score.

Marrying this woman (seen here at the Berlin Philharmonie) was definitely the right decision

In truth, though, there were thousands, millions, billions of tiny split-second decisions made by every player on the pitch that together brought about the eventual result. Some were obvious: Wales could have chosen the lower-risk, lower-points option of kicking for points earlier in the game; or, with the smallest error in their exemplary passing, England could have failed to execute that last score.

It was easy for frustrated Welsh fans to lay all the blame for their defeat on the players whose slight misjudgements preceded the winning England try. But even for those players it wasn’t as simple as ‘kick it out and Wales would have won’, for example. The left-footed player had a difficult, narrow kick, probably leading to an England line-out and a very good chance of scoring. There was also a burly English player bearing down on him and potentially blocking that route.

Did he make the wrong decision? Or was it the right decision at the time, but the Welsh winger should have been better placed to stop the try? We’ll never know. Every player on the pitch made a huge number of decisions during the match, some of which will have turned out to have a negative consequence for their team. But on the pitch, there’s no time to worry about whether the decision you made was the right one or not: you just have to deal with what’s in front of you.

What if?

Poor Lewis and I had to buy more rounds so we could check the football scores

That’s true for all of us off the pitch, too. It’s so easy for us to get bogged down in wondering what might have happened had we not taken one path instead of another, or if factors out of our control meant life hadn’t turned out in an unexpected way.

A couple of months before I was first diagnosed, I went to a walk-in GP surgery and told the doctor the pain in my shoulder didn’t feel mechanical, and that I didn’t remember any particular trauma that might have injured it. The doctor pointed out there were thousands of ways we can injure our joints, most of which we won’t recognise at the time, and sent me away with a prescription for painkillers.

I really did feel it wasn’t mechanical – and it later turned out it was probably the presence of useless ‘blast’ cells (immature white blood cells that fail to develop into anything useful: ie lymphoblastic leukaemia) in my bone marrow. At that moment, I accepted the diagnosis. But what if I’d insisted on more profound checks? Could I have reduced the intensity of my subsequent treatment? Might I have avoided relapsing eight years later? Would I have needed a transplant eventually?

That was a potentially major turning point. There must have been thousands, millions, billions of moments where had I acted differently, my story might have been very different. But even writing about this has been strange for me, because I very rarely linger on the ‘what ifs’. I’d rather focus on what’s in front of me.

The limits of learning from experience

For some reason donor Tim says he’s gone off rugby

The Welsh players – and the English players – will have studied what decisions they could have made differently that might have had different consequences, so they would be better prepared if they found themselves in a similar situation the next time. That sounds easy enough, but rugby is far too complex a sport to provide any black and white guarantees that what might work in one game will work in another.

We can learn, too, from our experiences. When something doesn’t work out, we can think about what we could have done differently. But there’s no guarantee that our changed behaviour would definitely have led to a more positive outcome. We can prepare as best we can – as all sports teams and players do – but it’s what we do in the heat of the moment that matters.

Being ready for surprises

In their next match, England played Italy. The match showed that even a well drilled, record-breaking team can prepare as much as they like, but external factors will always provide opportunities to put a spanner in the works. Italy came out with a surprising tactic that confused England (unbeaten for 17 matches and expected to win the match comfortably) so much that the underdogs were winning at half-time, and only two points behind with 11 minutes to go. England had not started very well anyway, but it took them a good while to work out how to deal with what was in front of them.

A pleasant surprise – medical students recruiting stem cell donors for Anthony Nolan at St George’s

In life you can be smart, successful and prepared, but whatever you or others might be expecting, there are too many external factors to guarantee that things will go your way. That’s not to say you shouldn’t prepare and plan – but while doing so it’s important to remember that the match you’ll be playing won’t necessarily pan out in the way you expect. England learnt a lesson: it’s good to have a game plan – but perhaps it’s even more important to be able to react quickly and effectively to what actually happens on the pitch.

You don’t need to get cancer to recognise the infinite possibilities that life can throw up. Some things you can control and steer in the direction you want to go, but sometimes you just have to face up to the unexpected challenges in front of you. That’s easier said than done.

Bouncing back

Bacon and eggy bread definitely helped me bounce back from another bug…

A couple of years ago I was excited to hear a talk about emotional intelligence, which in very broad terms I understood as the capacity to recover from setbacks. For how long do we stew over a perceived injustice (like the England players indignant at Italy’s surprising tactics), rather than move on and deal positively with what’s in front of us?

Football manager Iain Dowie called a similar sort of resilience ‘bouncebackability’. Sport’s like a miniature version of life, with lower stakes. Perhaps Mariacristina will understand better its appeal to me if I tell her it’s just self-improvement…

♫ And you were there, my good man ♫

It’s great being married to a feeder

“Anyone who signs up to the stem cell register must have at least a minimal level of goodness,” I was telling our guests on Saturday, not long before they went on their way. And it’s true. You’re offering to help a stranger – if you’re found one day to be a match – with no benefit to yourself. You’re agreeing to create more stem cells than you need to give to someone you don’t know, who will remain anonymous for at least the following two years. It’s a pretty selfless act.

Our guests on Saturday knew a bit about stem cell transplants. Cassie’s husband had signed up to Anthony Nolan‘s stem cell register when he was at university. “To be honest, it was mostly the idea of going in to the student union and increasing any chances of meeting any girls that might be there that got me in the door,” Tim confided to me. And he had been called in for further tests on more than one occasion – although neither in 2005/6, nor a few years later, did he go on to donate.

Before Christmas 2013, he was called in again for further tests. He then didn’t hear anything for a few months, until suddenly, in March 2014, it was “all systems go”. A nurse visited to give him growth hormones; he travelled to London to have the stem cells extracted from his blood.

Tim saved my life.

Gulp.

He was a 10/10 match. Our blood types were the same (BE POSITIVE, or B+ as it’s more commonly known). He was virus-free. And somehow, he created 12 million stem cells to send my way – enough to let us freeze 2 million and be pretty confident the rest would be plenty to maximise the chances of a successful transplant. Whenever I heard the fantastic news that my chimerism tests showed my blood was ‘100% donor’, it was actually ‘100% Tim’. And it still is.

For the two years following my transplant, I was getting on with life powered by 100% Tim blood, but knowing only it was 0% George blood. I’m glad to say he didn’t ask for any of it back when we met for the first time on Saturday.

There have been some particularly special days during my illness, treatment and recovery. Getting into remission; celebrating New Year with Gobby and Angela; going home after weeks, or months in hospital; getting out of Intensive Care; finishing all my treatment the first time around; a joyous Christmas Day with Mariacristina in spite of failing to deal with the relapse; unexpected remission after the MARALL trial; Day Zero: the stem cell transplant; the relief of getting to Day 100; being well enough to get back to work; my first second birthday; my second second birthday. And there have been so many others.

Related by blood?

Saturday, though, was something more. Tim, it turns out, has far, far more than the minimal level of goodness I reckon defines anyone who signs up to a stem cell register. He also has a wonderful wife, Cassie, and a gorgeous son, Aldous, born at the beginning of this year. Inviting them to ours for a meal was the very least we could do – and Mariacristina was desperate to cook for the man whose cells had given me all this incredible bonus life. I’m not sure whether 12 million stem cells for a Neapolitan feast is a fair deal – but it’s a start…

Her food blog, Coochinando, was inspired by a desire to give something back after my illness, and is all about showing your love to those you care about through cooking. There was no way Tim was getting away without being fed – and now he even has his own recipe named after him. It also gave Aldous his first taste of tomatoes – though I fear Mariacristina’s gnocchi alla sorrentina sauce may now have set the bar pretty high.

The magic cells

I always knew my donor was just about the same age as me. I knew he was in the UK, and that he was a man. But when you’re recovering from a stem cell transplant, it feels almost presumptuous to start imagining meeting your donor. After all, you need to get to two years post-transplant before you can even suggest exchanging details – and that seems very far off. Even then, the donor might prefer to stay anonymous. Secretly, though, I harboured a small hope that we could one day be friends. It’s a bit demanding, I know: he already gave me 12 million stem cells and saved my life. Don’t be greedy!

It’s easy to write and record songs dedicated to anonymous people (the title of this post comes from my lyrics). And however grateful I felt to my anonymous donor, that anonymity kept the emotional connection at a certain distance. I knew he was out there somewhere, but beyond the (admittedly not insignificant) 0% George cells keeping me alive, he wasn’t any part of my everyday life.

Thwarted!

In April this year, though, when we exchanged details, my donor became real. He became Tim. And on Saturday, Tim became even real-er. We almost managed to meet up a couple of weeks after finding out each other’s name, when my and Mariacristina’s emotions were still running wild, and our heads and hearts were still getting around the enormity of it all. Tim proved, though, that even if his donation had revealed him to be a superhero, he wasn’t invincible; he broke his ankle and everything was postponed.

Various health niggles, football championships and holidays conspired to further delay our first meeting, but meanwhile we got to know each other a bit better via old-school letters (updated to PDF), Facebook stalking and some of our favourite photos. There was Tim, in March 2014, hooked up to the apheresis machine that was extracting his stem cells; another photo showed the bag of cells. I responded with my own photo of the same bag of cells – this time on their way into my body. As an engineer, Tim was fascinated by the process. As a recipient of his stem cells, I was fascinated by Tim.

From Tim…

…to George

I don’t believe in fate. But I’m always ready to celebrate happy coincidences. Tim almost wasn’t my donor. There was a 27-year-old match the doctors/Anthony Nolan were hoping would give his cells, but for some reason it didn’t work out. There’s some poetry in the fact that this allowed Tim to step in – the dates of his previous further checks make it clear he was the one match I knew about back in 2005/6 when I was going through treatment after my first diagnosis and a transplant could have been an option. Our connection goes back to then; he may not have helped save my life that time, but he was there, ready and willing to do so if he’d been needed.

It’s him! It’s me!

In 2014, he was still there. And on Saturday, we met. I burbled various incoherent efforts to express my joy, gratitude and love in Tim’s direction. Mariacristina, the non-native speaker, was far more eloquent. She told him how close she had felt she was to losing me before my transplant, and how special every day since had been – thanks to him. It’s a strange situation; for a donor, the process is short and involves little disruption to life; for a recipient, the transplant is everything – an unexpected bonus chance to live. I feared we would overwhelm Tim and Cassie even more than I’d overwhelmed 7-month-old Aldous with an oversized stuffed elephant.

But they were perfect. They didn’t blink at our excess emotion, but showed they understood, accepted and appreciated what we felt. We all laughed when I threatened to get out my guitar – but I knew I couldn’t get those words out directly to the man for whom I wrote my Donor Song. The delay from April/May had probably been a good thing, we all agreed: the emotional intensity back then would perhaps have been too much. It gave us all a chance to start getting to know each other and build some sort of relationship before we met in person; Tim was no longer simply my only-just-not-anonymous donor – he was, and is, Tim.

A particularly glittery silver lining

He’s still my donor, of course, and always will be. I don’t know where I’d be without him. I don’t know whether I’d be without him. But now he’s real, and he’s family (whether he likes it or not) – as well as a true friend. There have been many silver linings to the cloud of my illness: meeting Tim and his family feels like a particularly glittery one.

Serious illness reminds us life is short. Since my transplant, even before I knew my donor was Tim, I have wanted to make the most of the extra time I have been given. I try to give something back. The big changes in my life that had never seemed so urgent became a priority. I’m still trying to be less scared of doing what I love and saying what I believe. I’m not just grateful to Tim for saving my life. I’m grateful for every extra day his cells have given me. And I’m grateful for everything this extra chance has taught me.

Thank you, Tim.

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You, like Tim, could save the life of someone like me. Sign up to a stem cell register at:

Anthony Nolan – if you’re aged 16-30
DKMS (formerly Delete Blood Cancer) – aged 18-55
NHS Bone Marrow Registry – aged 17-40, male, blood donor; or 17-40, female, from Black, Asian, minority ethnicities and mixed ethnicity backgrounds

Well worth the wait!

Terrible twos: remembrance of things past

Happy birthday to me

I probably shouldn’t have been celebrating with Prosecco, but last week I turned two.

Before then, though, since my fabulous first second (second first?) birthday on 26th March last year, I had discovered that my first first birthday was pretty fantastic, too. Mariacristina and I were staying at my father’s with my sister Harriet, her husband Duncan and their indomitable twins (just a few months older than me in haematological terms), and my father had prepared a special treat for us.

Family fun (pre-Fred)

Closing the curtains and switching off the lights, he powered up his old cine projector and dusted off his collection of 8mm films from his childhood and ours. It was magical and moving. There were my grandparents, brought to life again on the screen enjoying an English summer in the garden: just parents then, with my pre-teen future father and aunt, Katie. Fast-forward 25 years or so and my heart lit up to see my mother at about the age I am now, with my elder siblings (Tom and Harriet), and, later, my then very small younger brother (Freddie) – and me.

Sitting in a wooden high chair, I wait as my strawberry-topped birthday cake, decorated with one candle, is delivered – then start picking the strawberries off the top. Perhaps my love of cream came later, but that love for fruity puddings has never gone away.

A happy first first birthday!

It was wonderful to see, and reminded me that however important my philosophy of living in the present has been during my illnesses and treatment, none of it would be significant without all that history behind me. I’ve learnt to try to minimise the backward-looking “if only” thoughts that inevitably invade my brain when something doesn’t go to plan – but however idyllic or challenging different moments of my past may have been, they will always be the foundation of who I have become.

So even as I get on with life, dismissing regrets for bad decisions I cannot change and focusing instead on what I still have a chance to get right, I recognise that the past gives me that vital fixed point from which I can measure the significance of the present. As I celebrated my second second birthday (two years since my stem cell transplant) last week with a surprise party at the fantastic tivoliPizza in Italy, I could only grasp the magnitude of what the milestone meant to me by appreciating what had come before.

Almost 33 years ago, I was sitting in my high chair stealing strawberries from my first birthday cake. Fourteen years ago my mother died, having taught us how to live and love. Just over ten years ago I was diagnosed with acute lymphoblastic leukaemia. Nearly five years ago I married another incredible woman bursting with love and life. Two years ago I had my transplant, six months after relapsing.

And today, I soak up the moment of being here, being alive and being loved, knowing it only means so much because of everything that came before.

2×2=nearly 5?

Anthony Nolan’s March milestone

My young father and aunt

Me and my immunotherapy, on the national news

It’s probably no surprise, given my continuing existence, that were I to be given the opportunity to change any of the decisions made regarding my treatment, I wouldn’t alter a thing. However shaky some of the steps may have seemed at the time, and whatever slings and arrows outrageous fortune may have flung at me as a result, it’s impossible to know whether any tiny step off that specific path would have brought me to where I am today.

And I rather like today. Not just because I was on two national news programmes on Tuesday, nominated by Bloodwise to give a patient’s point of view on some striking cancer treatment news… Few viewers will have realised from my brief appearances on 5 News and the BBC News at Ten, though, just why this news sounded like potentially a big deal to me.

I relapsed with acute lymphoblastic leukaemia, reached a point where conventional treatment had failed and turned to an innovative, only partially tested immunotherapy trial to get me into remission, just like the patients in the widely reported trial (“94% of ALL patients given only a few months to live” alive and in remission after 18 months). What’s more, had we made a different choice among my short list of ‘last-resort’ options, I might even have ended up on that trial myself.

Live news focuses the mind quite wonderfully

When my ALL  relapsed in 2013, a stem cell transplant was always the target and my very best (if not only) hope for sustaining any remission for any more than a few months, and that’s rightly played a leading role in my story. However, it might not even have come into play had I not reached that remission in the first place.

When the regular relapsed-ALL-beating intensive FLAG-IDA chemotherapy failed to banish the lymphoblasts, I was looking at the prospect of living out a version of Einstein’s definition of insanity: having the same chemotherapy over and over again and expecting (or at least hoping for) different results.

I’m glad I’d tended my beard

Fortunately, though, the exciting progress of immunotherapy presented another option: monoclonal antibodies whizzing around my bloodstream with a couple of familiar chemotherapy drugs and steroids, targeting the leukaemia. It was rough, but – seemingly against expectations – it worked! I remember two of what were perhaps three other options, all unproven: another, more promising trial in the UK that wasn’t starting for what could have been a critical few months, and volunteering as a guinea pig for some interesting research adapting patients’ own T-cells to attack cancer cells in the USA.

Not only could I have had an excuse for an, erm, holiday (that might be pushing it) to America, but I might also have ended up among the 94% – or, of course, the 6% – headlining global news bulletins this week. Instead, I was sitting in a Channel 5 news studio with newsreader Sian Williams and immunologist Dr John Gribben to give my reaction to the revelation of this news, having been rushed up there as soon as the BBC had finished filming a brief interview with me and complex ‘walking down the stairs and sitting down with my laptop’ passage at home for the News at Ten (yes, I always put on a smart jacket to drink my tea).

Romantic setting for the BBC crew…

Fortunately I had had a rare haircut and trimmed my beard a few days before, and even tidied the dining/living room for Valentine’s Day: lucky coincidences. It probably worked to my advantage to have the BBC pre-recording first, as I was more fluent and confident about what I was saying by the time I got to the 5 News studio, where I wouldn’t have the luxury of multiple takes…

I had read the news story that morning with considerable interest, but little did I know I’d be explaining how I felt it about on live television later that day. Once the interviews were on the cards, I was almost so busy keeping track of the logistics of the day that there was little time to really get my thoughts in order. I like to think I came up with honest, coherent answers in front of the cameras, but in a way, my words were not the most important thing.

Waving my arms around to distract from any hesitations

I was there to put a human face on the statistics (even if I wasn’t one of that specific 94%); to help viewers jump from the complex science (represented by scary 3D cells floating around behind my head on 5 News) to what ‘surviving’ cancer really means. My excitement at the research was as much to do with the large number of individuals to whom the trial had already given another chance at life as it was about the even larger number who might benefit in the future. 94%? I imagine 33 real-life human beings who have been able to live at least another year – not to mention their friends and family.

I know something about what it’s like to lie in a hospital bed when conventional treatment has failed. When the alternative is to ‘get your affairs in order’, being told by doctors that “there is this other possibility, which could get you into remission” is a shining glimmer of hope in a very dark tunnel. As sensible as the brilliant, informative science bloggers at Cancer Research are to play down headlines of a ‘cure’ (though too far in their own headline downgrading this sort of potential treatment to ‘fascinating science’), the limited criteria for cancer patients who might benefit directly from this research will mean nothing to the individual with ALL who has failed to get into remission and run out of other options. S/he will know there is still hope.

Totally calm before being taken to the 5 News studio

I have been lucky enough that there has always been another option, and I am still here, determined to make the most of where those options have brought me by seeking out those things in life that matter most to me. When I woke up on Tuesday morning, I never knew I’d end up on national television that day; but, looking farther back, nor did I ever know where my illness and the decisions regarding my treatment would take me. I’ll never know “what if…”, but that doesn’t matter – I’d rather focus on “what is…”.

And this news makes me smile.

A pertinent question from my friend Rae after seeing the News at Ten

Seismic shifts in Pozzuoli – and life

Soaking up the sun and ‘storia’ (history) of the Rione Terra

If any place could symbolise how forces beyond your control can sweep into your life, bringing destruction, change but also surprising new opportunities and hope for the future, Pozzuoli’s Rione Terra, in the heart of Campania’s Campi Flegrei (Phlegrean Fields), is that place.

The volcanic area of the Campi Flegrei is drenched in fascinating myth, history and geological phenomena. It’s where I was lucky enough to spend most of my teenage school holidays with my family, Mariacristina and I got married and now visit regularly to spend time with her family (as well as to enjoy the fabulous food, gorgeous weather and beautiful setting). There is so much at which to wonder: from the purported entrance to Dante’s underworld at Lago Averno and the cave of the Sibyl overseeing the oracle at Cuma; via the Roman ‘temple’ of Serapide (actually a marketplace) and Flavian amphitheatre in Pozzuoli; to the fuming volcanic crater of the Solfatara and the continuing threat of significant vertical shifts in the land (clunkily named ‘bradyseism’). And that all just scratches the surface.

The Roman bakery revealed by post-evacuation excavations

It was a particularly large manifestation of the last of these that led to the mass evacuation of the Rione Terra – the heart of Pozzuoli through the ages – in 1970, since when the area has been a ghost town, albeit teeming with history and culture. It turned the lives of its inhabitants upside down, and although the buildings are slowly being restored to their former glory, it will never be the same. But it also enabled eye-opening excavations that revealed the old Roman settlement, well-preserved and forming the foundations of the buildings built on top of them by subsequent inhabitants.

The tour we went on was astonishing: to wander the roads walked by the Romans (their existence brought to life by clever video projections), beneath the abandoned homes of later generations, in the very centre of Pozzuoli, was like drowning in history and culture. And then to emerge and stroll down the narrow streets of the Rione Terra, the stunning colours of the beautiful, reconstructed homes burning brightly against the clear blue sky: it felt as though we were in another world. Go, if you can: the (free) tours are running on Saturdays and Sundays until 27th March – book here (watch the video below to get an idea).

Buildings bask in the sun

Of course, it also made me think. The continual vertical shifts in the land are like the ups and downs of life: you know they’re there, and you can’t control them all, but at any point they might reach a level that threatens to destroy everything – like a cancer. Emergency plans are put in place to protect life, but they cause a lot of pain. Lives are turned upside down. A lot of what is destroyed will never be recovered – but just as my hair has come back, the gorgeous buildings are returning to life. Since my treatment, I’ve enjoyed unexpected opportunities that, like the Roman ruins revealed by the evacuation, might never have been possible otherwise. These include amazing people I’ve met; events such as the Transplant Games; featuring in a campaign at the House of Commons, legitimate reason to talk about myself to strangers…

The Rione Terra is still there, swelling with history and hints of its former majesty, in some ways all the more impressive as a result of the challenges it has faced. For centuries it was a thriving town centre; now its greatest glory is as a cultural attraction – and who knows what the future has in store?

I, too, have faced a destructive threat and been through painful changes in order to save my life. I’ve lost some certainties and in some ways been knocked backwards, but I’ve also discovered new opportunities and strengths. My life has changed with me, but I still carry the memories, lessons and heritage of life before cancer within me. I may never have had the commercial, residential and historical significance of the Rione Terra – or the beauty! – but with time I’m recovering as much of what I had as I can. What I have to give may not be the same – but perhaps my experiences mean I now have even more to offer…

There are lots of fishes [sic] in Pozzuoli

Pozzuoli, with Rione Terra looming

Striking colours

The narrow streets of the Rione Terra

George, astounded

The ghost town

Mariacristina and zia Carla

“…created before Paradise”

To be reconstructed…

Sunny Pozzuoli

Incredible views

Another reason to love Pozzuoli

A time for giving?

It’s Christmas!

I know I’ve left it a bit late to ask for Christmas presents this year, and the chances are I’m not getting you anything, but I’m going to inflict with my wish list anyway – BECAUSE IT’S CHRISTMAS! And, of course, as any John Lewis advert devotee will remember from a few years ago, the joy is in the giving, so I’m probably doing you a favour. Right? Just don’t give me any more bugs, please, after the metapneumovirus (not as cool as it sounds) that’s been challenging my immune system this winter…

I’ve been given so much (not least the stem cells necessary to build a new, functioning immune system to keep the leukaemia away), but some of my greatest joy over the past couple of years has come from opportunities to give something back. Of course, there’s only so much I can do as an individual with a job and around 400 Twitter followers, and a mixture of a wonderful crazy wife who keeps me very busy and occasional fatigue means I never manage to do nearly as much as I could, and should. But when I know I’ve done something I know could potentially help someone else going through the sort of experience I’ve faced, it feels very right.

So perhaps you’d like to help me through a Christmas gift this year?

1. 

   This is how I’ll feel if you sponsor me…

   Give a donation to sponsor me on the 2016 Great Escape Hengistbury Hike to raise money for Shine Cancer Support
   It’s not just me, actually, and that’s what makes it even more special. Shine supports young adults who have / have had cancer, not least through getting us together and enabling us to share experiences, learn how to deal with our changed circumstances, inspire each other and celebrate life together. That’s what we’ll be doing at the Great Escape for a few days in January, and on the final day we’ll be pulling together to get every Escapee from the start to the finish of the Hengistbury Hike. Please sponsor me: quite simply, the more money we raise, the more young people facing the uncertainties and challenges of a cancer diagnosis Shine will be able to support.
   GIVE to Shine this Christmas!

2. Give blood to support any number of people in need, almost certainly helping to save lives
   I lost count of the number of blood transfusions I had during my treatment. Donated blood can help so many people in so many ways, and it could help you – so have you signed up as a donor? These are some ways your blood could be used, as NHS Blood and Transplant explains:
   • red blood cells – used to treat some types of anaemia and replace blood lost as the result of an accident
   • platelets – used to treat problems with bone marrow, such as leukaemia and people with blood clotting disorders
   • plasma – used to treat conditions where abnormal clotting causes bleeding, such as liver disease, and where large volumes of blood have been lost

   Blood donors can also sign up to the NHS’s British Bone Marrow Registry; an alternative if you don’t meet the criteria for Anthony Nolan or Delete Blood Cancer. But hopefully you’ve already signed up to potentially save a life as a stem cell donor…

That would be more than enough for me this year. Thank you!

Have a happy, happy Christmas!

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.

 

Lead role: watch why I was persuading politicians…

As you may remember (or, if you’re really unlucky, you’ll have witnessed), I’m always keen to tell my story, if it might help others going through similar challenges – and that’s why I went to the House of Commons on 15th July to try to persuade MPs to support Anthony Nolan’s major Destination: Cure. I could type away to tell you all about how the event went here, but the written word isn’t always the best way to convey a story…

So I’m delighted to be able to show you – in professional technicolour – just how the Destination: Cure event panned out, in this short video Anthony Nolan put together about my day pestering politicians:

It was a great day, and I got to the end of it feeling pretty exhausted, but inspired and encouraged by the start we’ve made in persuading MPs to support Anthony Nolan’s aims to ensure “a future where the destination for every patient is a cure”!

Just as finding a match is just the start for a blood cancer patient needing a transplant, though, the launch of the campaign is just the beginning of the effort needed, so keep the momentum going by visiting the campaign page – and make sure you sign up to tell your MP all about it!

Oh – and do please share my story to spread the word and help more people like me facing life-threatening illnesses.