Approaching 40 part 2: The day I found out I had Leukaemia

I’ve been wanting to write this story for a long time. I turn 40 in 3 days’ time and it seemed like the right time to do it. If you’re having a bad day, I hope it raises your spirits. If you’re having a bad time generally, I hope it helps you to put things into perspective. If you’re having a good time, I hope it helps you be thankful for what you have. 

The story is a three parter. There’s a lot to say. Part 1 was here.

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.

October 1999

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, butI 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.

The final part of the story will appear on Wednesday next week. (Part 3 is now live – here!)

[box type=”note” style=”rounded” border=”full”]Have you seen what I’m doing for our charity challenge later in 2012?

CLICK HERE to find out and please DONATE something small if you can.
[/box]