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A question to live by

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19 Sep 2019

Rob has been living with chronic myeloid leukaemia for nearly eight years - but still finds himself thinking back to the first question he asked his doctor after he was diagnosed.

I can still remember the first question I asked when I was told I had blood cancer.

I had just turned 22. I was quite active. I’d just got engaged and felt like my whole life was ahead of me. Being ill just didn’t happen to me, and cancer was for old people.

Suddenly, in the space of less than 48 hours, my whole world had been turned upside down.

Missing the symptoms

After grudgingly submitting to my fiancee’s pestering, I’d booked a doctor’s appointment to discuss a nasty bruise that I had picked up on the rugby pitch. 

With hindsight I’d also lost some weight quite suddenly (which I was obviously delighted about!), and yeah, maybe I had been a bit sweaty during the night a few times. Probably just the result of a hot summer, and naturally lucky genetics right?...wrong! 

And just like that, here I was, in a consultant haematologist’s office, being told I had leukaemia.

“Am I going to die?”

With the benefit of hindsight, nearly 9 years on, it’s a question that sometimes feels dramatic and a little surreal. At the time it felt very real, and despite the reassurances of my consultant it was a question that didn’t go away for quite a while.

It’s all well and good to be told that there’s some fantastic new drugs available that should help you live a normal life, but when the leaflets in the hospital waiting room measure survival in terms of five year mortality rates, that’s pretty scary for a 22 year old.

Initially I couldn’t understand why my consultant seemed so confident, but as it turned out, the mother of all repeat prescriptions I was about to receive really was a miracle drug.

The drugs gave me a new verve

There’s a reason why imatinib was on the front cover of Time magazine.

Drugs like imatinib, nilotinib, dasatinib (all of the nibs) had seemingly turned a disease that would kill you in a matter of months, into a treatable chronic condition.

If it wasn’t for those little pills, I almost certainly wouldn’t be here today. And if it wasn’t for the pestering of my fiancée (now my wife!) then it might have been too late for the tablets anyway. But I am still here, and (contrary to sentiment of the great Richard Ashcroft), the drugs do seem to work.

So why not just keep taking the tablets that keep me alive?

Sometimes I’m not even sure I know the answer to that question.

Unlike others, my side effects are almost non existent. I have a beautiful daughter and two hilarious twin boys, partners in crime - so I don't need to come off the drugs to start a family.

But clinical trials such as the DESTINY trial in the UK have shown that people with CML who have sustained many years of good results on the tablets are sometimes able to scale back and even stopping treatment without the leukaemia returning.

Where I don’t need to plan my day around when I can and can’t eat to suit my medication. Where I don’t have to have annual heart health checks, and where I don’t have to explain to my kids why “Daddy has to take special tablets”.

A gradual, controlled, dose reduction will likely take months if not years. And that’s fine by me. When all is said and done, it’s worth remembering that first question in the consultant’s office. “Am I going to die?”…

If the dose reduction doesn’t work out, I’ll just keep taking the tablets, and be thankful for the miracles I’ve already got.

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