Written on my 40th birthday
It was nice to finally get this down on ‘paper’…
Sometimes things happen in life you just can’t explain. You ask yourself “why me?” and you get no answers.
13th February 1997
My girlfriend (now wife) and I packed our bags, left our jobs, jumped on a plane and moved in together, 11,500 miles away from everything we owned and knew. Living in Sydney, Australia had been a dream for ages and we’d spent over a year making the dream come alive. I’d even flown out there the year before, looking for a job. The plan had worked. We were over the moon.
I had a medical through my sponsoring company – BT (British Telecom) a couple of days before we left the country. The HR dept weren’t overly organised, which in a funny way worked to my advantage. If they had have been, we would never have even left the country.
We landed and set up base in a hotel until we found our feet. A couple of days into the trip I received a fax (remember them?) asking me to call the doctor who’d carried out my medical. I called and he told me, “it’s probably a mistake, but your blood counts are a bit low, you should probably get them checked out…”
I put the phone down and did exactly what any perfectly healthy 27 year old who’d just landed in Sydney would do.
Ignore him completely.
There was no urgency attached to the conversation and I felt I had more important things to worry about at the time.
Fast forward to July 1997
I woke up one morning with a pain in my buttock. No sniggering… I was struggling to walk which was pretty odd, not to mention uncomfortable.
This then forced me to register with a local doctor (I had to remind myself what the inside of a surgery looked like) and asked her to take a look. After much prodding from not one but two doctors, I was about to be sent away with some anti-inflammatory pills. Before I left though, the wise doctor suggested she took some blood from me, just to be on the safe side. I then remembered the BT doctor’s phone call.
A couple of days later, the pain had gone, but I went back to the surgery anyway as she’d asked me to report back that all was well.
I walked in smiling and she told me to sit down.
It turns out all wasn’t well.
It was around midday and anyone who had an appointment after me was going to be kept waiting for a while.
In the space of 30 seconds, my life turned on a sixpence.
It turns out the pain in the buttock was an infection. The reason it was unusual was because my blood should have been capable of fighting such things with ease. It seems my BT doctor should have made a little more of a fuss about the blood test I had back in February.
She proceeded to say sentences with words in, that no one wants to hear in a doctor’s surgery which involved “10% of normal levels”…. “blood transfusion”… “haematologist and “leukaemia”….
My girlfriend was called from work.
I had tunnel vision and my life flashed before me. The invincible, 27 year old, healthy, fit, Asia-Pac travelling, young man, was no longer invincible.
Considering it was 13 years ago, I remember the next few weeks vividly.
I was with a specialist haematologist within about 2 hours.
He and I sat stony faced across his desk and after some initial introductions, I asked the very simple question anyone reading this would have asked, because it’s the only thing that matters at that time.
“Am I going to die?”
“I don’t know”, was the reply. “We need to do some tests to find out what’s wrong.”
Later that afternoon, I had dozens of viles of blood taken, a bone marrow scrape (which is the most unpleasant thing I’ve ever had happen to me) and various other scans over the space of 2 hours.
Our walk back through the station at Town Hall in Sydney I remember so clearly – it was like one of those sequences in the movies – where they put a mist round you and everyone else is slightly blurred out… “Why me?” is all I remember asking time and time again.
We then went home to call our respective mum and dads. Not the call they were expecting. Not easy calls to make.
For the next two weeks I had more tests scheduled in. The doctors and nurses were incredible and the private health insurance I was given 24 hours before I left the country was a godsend. For those two weeks, I had no idea if I was going to have a life shortened to 27 years or whether I would be OK, or, something in between.
I drove a lot for some reason. I remember heading out into the Blue Mountains, west of Sydney and sitting and looking at the view. I also remember taking great comfort from knowing that I had lived my life to the max. I wouldn’t have changed anything. I have to say that was very comforting.
The biggest battle in my head was coming to terms with not being with Suzanne any more – that was hurting me in a big way and there was nothing I could do about it.
I went back to the consultant for the diagnosis a couple of weeks later. By now it was the middle of August and a beautiful Sydney winter. The sky was so blue as we went in to the consulting rooms – I remember looking up at it before I went in, unsure of how I would be feeling like when I came out. As moments go in life – this was a moment.
Narrowing it down
They’d narrowed it down to three possible causes – one very bad, one bad and one not too bad. In order to complete the diagnosis, I had to have my spleen removed. It was three times the size it should have been, as it had been filtering pretty rubbish blood for who knows how many months or years. Removing it would help with treating me, as well as helping to absolutely diagnose the problem.
We left and called my parents. It was news… it wasn’t great news, but it could have been worse. There was hope and things were starting to happen. Everything is so much easier when things start to happen. It’s probably one of the reasons for me being obsessed with taking action today.
A week or so later I went into hospital to say goodbye to my spleen. My days as a sixpack model were numbered, and trips to Malarial countries were now out the window, however it was a small price to pay.
The operation was on 28th August 1997.
Three days later on 31st August 1997, as I was recovering from the operation and the morphine had been taken away 🙁 the doctor came to see me. My spleen had been whisked off to the lab and chopped into tiny pieces and put under a microscope. They could finally see what had been going on over the last few months and probably years.
They had narrowed it down to one of the three possibilities on a day where history was being made for all the wrong reasons back in the UK.
It was the “not too bad” one.
I had Hairycell Leukaemia. And yes, that was the not too bad one. It affects mainly men over 60 and is one of the rarest Leukaemias. Leukaemia is also pretty rare in itself. I was pronounced a freak of nature right there and then.
I still remember how happy the nurses were – there was palpable relief from all the medical staff. Everyone was over the moon that I had Hairycell Leukaemia.
No, really, they were.
So we were, because they knew how to deal with it and the prognosis was good.
Later in the day (bearing in mind the time difference in Australia) the nurses came to tell us that Princess Diana had broken her arm in a car crash and we then heard the whole event unfold – something most people in the UK weren’t awake to hear.
So, on 31st August 1997, I learnt I had a relatively treatable Leukaemia and the world lost Princess Diana. It was a day I’ve not forgotten.
The next few months I went back to work, apart from on Monday mornings where I put my feet up, had the most wonderful view and sat with a drip in my arm for my weekly dose of chemotherapy. Cladribine was a drug I came to know a lot about. I got a bit tired but other than that, there were no side effects – not what you come to expect when you hear about chemotherapy.
My blood counts hit rock bottom as the not so smart chemicals attacked the bad guys as well as the good guys in my blood. I then had the delight of injecting myself on a fairly frequent basis to keep those white blood counts up, to prevent infection. Suzanne and I tried to keep doing the things we wanted to do. I’ll never forget driving to Broken Hill and back over a long weekend (Australians will know that’s an utterly ridiculous thing to do) and keeping the injection pack in bar fridges around the outback.
As December approached, my blood counts had returned to something resembling normal again – it really was a minor miracle. By all accounts I shouldn’t still have been standing up in July – I should have caught an infection and been wiped out, as I had nothing to fight it. Yet here I was, fighting fit again and carrying on with my Pilots License and working around Asia-Pacific. I was a seriously lucky boy.
After a load more tests towards the end of my treatment, I was told that they hadn’t managed to eliminate all the Hairycells (technical term for bad guys). There were still a tiny proportion in my bone marrow and it was possible the disease would return.
It did in fact. Around a year after we returned home.
I was treated again – this time in the UK at St George’s Hospital in Tooting, where I was now under the care of a wonderful consultant, Dr Claire Dearden who to this day ranks in one of my top ten favourite people of all time. She’s an academic consultant who when I met her for the first time told me I have “her favourite disease.” Phrases like that you never forget.
I had the same treatment, but this time over a week instead of over months. It was an enforced holiday in an isolation ward with just me and some computer games and the beginnings of the Internet via a 56k modem. Apologies to the NHS if I ran up a phone bill.
More bone marrow tests were requested. I requested to be knocked out for these from now on – there’s only so much a bloke can take.
Once again, I went into remission, but there was doubt about the long term chances of the disease staying away.
My son Matthew was born in November 2003. A month before he was born, the letter I was dreading after a routine test came through the door. We had moved by then to Windsor, UK. Good enough for the Queen, good enough for us. I say this for a reason – the UK’s health postcode lottery.
Dr Dearden had tried and failed to get me on a medical trial of a drug she knew was going to help me long term when I lived in Oxford. She tried again and this time our new local authority said yes – they had the budget. Shocking, but I wasn’t complaining
And so I was one of the first couple of people in the world to have a combination of Monoclonal Antibodies and Pentostatin chemotherapy to treat Hairycell Leukaemia. There was a hope that 1+1=3 with this combination. If it worked, I’d be written up in medical journals and everything.
I had to go to the Royal Marsden hospital overnight for my first treatment, “just in case it didn’t agree with me” … great… As I sat on my bed and the drip went in I couldn’t help noticing the 10 doctors with clipboards and a tray of needles – “just in case”.
One by one they went away and after a few more weeks of treatment and tests, I went back to see some very happy faces shortly after Matthew was born.
I went into complete remission in January 2004 and have been totally clear to this day. As Matthew turns 8 soon – so will my period of complete health.
JUL 2019 UPDATE: He’s now 15 , and I’m still in remission 😉
I go back every six months currently – to the Royal Marsden hospital for a blood test. I get nervous before, but have been skipping out of the hospital for 8 years. It’s the most sobering experience sitting in the waiting room and explains why I get so cross when I see people wasting their lives.
It’s not a rehearsal.
And I like to think most days that I live that ethos. When I remember back to these times, when I see sad stories on the news, when I watch the Great North Run and hear the stories behind the runners, when I see a Leukaemia Research (now Bloodwise) collection box, it hurts me more than most – however it’s one of the few scars I have from the experiences.
Has the experience changed me?
Ask those around me. Especially Suzanne.
Not really I don’t think. I’ve always tried to live a very full life and took great solace from that fact. I’m incredibly driven, I take on too much, I get frustrated when those around me don’t move as fast, I rarely sit and relax, I run with the ball too much, when I should pass (metaphorically speaking) and I can’t watch the sad films on Comic Relief or Children in Need. All said and done, I don’t think that’s so bad, considering.
So what to the future? I was 40 two days ago. What will I take forward with me for the next few years, 13 years after the spectre of Leukaemia reared its very ugly head? In no particular order – I will use these statements as a guide… I’d love to know whether you agree.
- Change is inevitable – go with it, embrace it or fall behind the pack.
- Having children changes you. For the better. Enjoy them while they’re young – and don’t pay lipservice to that statement, or you’ll regret it.
- The pause button once in a while isn’t such a bad thing.
- Running your own business is a privilege. It’s tough out there, but having a process and following your vision is key to success.
- It is OK to say no once in a while. In fact, it’s quite good.
- If you don’t ask, you don’t get.
- You are the luckiest person alive if work is a hobby.
- Don’t be afraid to tell people the truth, even if it hurts.
- Time is the most precious thing we have – use it wisely.
- Life is all about choices – you can actively choose how to live every day. Every decision, every reaction is down to you. Don’t blame others for your choices – just make better ones.
- And the biggest learning point of all from this whole experience – which will be enscribed on my tombstone – “It’s not a rehearsal”. I genuinely subscribe to this. Grab chances while you can. It maybe too late tomorrow.
So that’s my story.
I’ve been asked to speak about it before. When I couldn’t make a conference in New York in 2013 – I decided to record my story instead:
The story of giving back
A plan was hatched
And so it all began on the morning of 18th September 2011, when my wife and I sat and watched the Bupa Great North Run in our dressing gowns whilst having a relaxed Sunday morning.
Before the race started, as ever in true BBC style, wonderful tales of heroism, courage and support were told by everyday people, all running for their cause – all running for something they believed in passionately and all doing something positive to help that cause.
Listening to their stories and watching them run put me to shame that morning.
We’d just come back from a pretty special summer holiday. We live incredibly privileged lives and it hit me squarely between the eyes that it was time to take some action, raise some money and generally give something back to the charity that in an indirect way had saved my life 15 years’ ago.
That morning we hatched a plan for me to run four half marathons in a month. Not ground breaking by any stretch of the imagination – but challenging enough for me. What would make it even more special however would be to run it with a group of friends and persuade them to do the challenge too.
On 17th November 2011, after much research, thinking and fine tuning of my pitch, I assembled 10 “dad’s” in our local pub and waited till pint #3 before pitching the challenge.
So, how did we get on?
Our challenge is now over. 6 of us ran every race, one of us kayaked two half marathons and 10 others were involved in single races, which was no mean feat. Somehow I managed to run 4 personal bests in a row and am now fitter than I’ve been for a long time which was the icing on the cake really!
So – quick report on the last month…
- 16th Sept – Great North Run – Red Arrows, 50,000 people, rain, Tony with the Fridge,Denise Lewis, My story featured on BBC1… 10 hour journey home.
We then had a week off
- 30th Sept Bristol – 10,000 people, went off way to fast, horrible small hills, great city atmosphere,
- 7th Oct Windsor – the hardest – closest to us and arrived late, the hills hurt a lot, the children running the home straight with Paul was a real highlight
- 14th Oct – Henley – I was somewhat surprised by us being joined by 7 of my school mates, stunning weather, gorgeous scenery, the hardest mile of the 52 in Henley Hill, a great celebration afterwards.
Wind forward to Friday 19th October 2012
We celebrated the end of our challenge by gathering runner and supporters at the Thames Riviera Hotel in Maidenhead. It was a great night to reflect on the last few months of training and the pain of racing 52 miles across that month. Everyone had their own stories to tell and everyone had a lot of special memories. Some of us were even sad it was over!
I did stand on a chair and make a speech I’d spent most of the day writing – it was predominately to say thank you to everyone, and to award some certificates – I’d even laminated myself…
I also wanted to announce a total (which is still going up)… across 242 individual donations, including gift aid, we had exceeded our target of raising £10,783.20. However, in addition, I was delighted to announce a matched donation from BP (thanks to Simon Hodgkinson – one of their employees was part of the team )of £2,783.
There were gasps from the audience…
But even better than that, Paul Johnson then stood up… he’d applied for a grant from the foundation of his company Allergan (Allergan International Foundation) and had been successful. He proudly handed over a cheque for £10,000, making our total raised so far £23,566.
Donations on the night took the total to £23,758– which we were all thrilled with.
And so what a journey it’s been. What a lot of fond memories and most importantly, what a lot of money raised.
Thank you, thank you, thank you.
Let the next adventure be as fun…