Darren's Story

On April Fool’s Day 1996, at the age of 11, I was diagnosed with acute myeloid leukaemia. As you can imagine, at the time I didn’t see the funny side, even though I wanted it to be a practical joke being played on me.

My symptoms of leukaemia

I had just started secondary school so was in the process of making new friends and finding my feet. I was enjoying playing different sports, like rugby and I seemed to be fitting in fine. Not too long into the New Year, I noticed that I was getting bruises in various places on my body. To begin with, it didn’t seem to be anything to worry about. I was doing a lot more sport at school and my parents and I put it down to that.

As time went on however, the bruises appeared on more parts of my body and were taking much longer to go away, if at all. Perhaps stupidly at the time I ignored it, as I felt fine within myself. However in late March, I remember becoming more and more tired which ended up with me taking a day off school. It was on my day off that I came out with red blood blisters all over my body.

When the doctor came and told my mother I had to go to hospital, something was clearly not right. A day later we were taken to The Royal Marsden and told that I had leukaemia. I broke down at this. At that young age the connection between cancer and death is easily made.

What follows is a breakdown of the six months that followed, including various milestones and procedures.

My treatment for leukaemia

The first procedure was the insertion of a Hickman line. Unfortunately the operation did not go to plan and my lung was punctured. I was unconscious as we sped along under blue lights to another hospital and I ended up waking up in a makeshift ward surrounded by young babies in cubicles. A chest drain had been inserted and taken out in what seemed a matter of hours and the whole experience was a bit of a blur. I do remember a pressing need to go to the toilet and taking ages to drum up enough courage to call to the nurse across the room.

After I returned to the Marsden, things weren’t hitch-free in the months ahead. I had trouble taking tablets and I was forced to either crunch them or take liquid medicine. One in particular, for replacing potassium, still haunts me to this day and I dare anyone not to gag after taking some. I had to take six mouthfuls a day. I tried to drag it out as long as possible, ending up taking three or four in one go most evenings and stuffing my face with fruit salads in a desperate attempt to take the taste away.

During the course of those six months, there were highs and lows. I made friends and I unfortunately, lost friends. I celebrated my birthday with a visit from Cobra from The Gladiators (remember them?!) and spent my hospital days trying to avoid going to the school room. I was ill so technically I shouldn’t be at any school, right? There were new medications and trips carting them around on a stand, making sure wherever I was, I was plugged into a mains somewhere. There were also further operations for checking bone marrow and going under anaesthetic wondering if I was going to wake up in the same room I fell asleep in.

I noticed that my hearing had decreased

Near the end of my time in the Marsden, I noticed that my hearing had decreased. I had recently been placed on new drugs for a bout of septicaemia (caused by a chicken nugget scratching my throat no less) and this just seemed like my body shutting down a bit. Long story short is that I survived leukaemia but with the legacy of losing my hearing. I am now a wearer of two hearing aids. Some might say that it was a bitter pill to take… beating cancer but then having something that would affect me for the rest of my life. Coming out of hospital and having to return to normal didn’t go exactly as planned. The boys back at my school turned out to not be a very sympathetic bunch and I made it through there due to sheer will and determination.

I got married in August 2017

I got married in August 2017 and I will say now what I said in my speech. Of course it was tough growing up, and even in my 30s it is still tough with the hearing loss. But I made it through school, went to university, got good jobs and had relationships and am now very happily married. Having cancer didn’t dictate my life, it merely took me down a route I wasn’t expecting to go down. Do I wish that I had never had it? Of course I do. But as I am told often, what makes me ‘me’ could have had the seeds planted during that experience. Leukaemia might have dealt me a rubbish parting present but who knows what kind of person I would have become without that experience. Especially when I understand how close I was to not having any  life at all.

Acute Myeloid Leukaemia Treatment

Update: April 2023

It has been a few years since my last update – life has got in the way as well as a worldwide pandemic. But I felt now was a good time to talk about what has been happening with me recently.

So as a recap, I had leukaemia when I was 12 and also became deaf during chemotherapy. I went on to finish school go to university, have loads of fantastic jobs and be married to a wonderful lady.

I have however been suffering quite badly with my mental health. Although I have been cancer free for over a quarter of a century (yes I am approaching 40), the impact of those seven months has stayed with me all this time. Not with having leukaemia itself, but the knock on effect it had after causing me to lose most of my hearing. It was only until recently that I realised a lot of my mental health struggles could be circled back to that point. This isn’t to say that everyone that goes through having cancer as a child could have these difficulties in the future, but there is something to be said about having such a dramatic period so early in your life. So sharing is caring – and for those adults reading this who had cancer as a child, hopefully it will help if they are going through the same struggles I did.

I took the big decision of moving jobs during COVID; a former colleague offered me an amazing opportunity that was too good to turn down. However, what came with it was a heightened anxiety that I had been bubbling under the surface for a good many years. Would I be able to cope? Would my new workmates like me? What happens if I fail my probation? From those few questions, my brain snowballed into catastrophe – a regular habit of mine that. From what happens if I fail my probation?, I went to would I be able to pay my mortgage? This then continued rolling into being certain my wife would divorce me and I would be living on the streets. My wife noticed the difference in me, perhaps more so than at any other point in our marriage. I was on edge a lot, any little thing I would blow up and I was struggling to cope.

Work was amazing – they had a wellbeing team that I contacted and from those initial chats, I seeked outside help. After a few months of really deep diving into my state of mind, a lot of unseen issues that came from that stay at hospital in 1996 with AML began to become clearer. And because they became clearer I was able to acknowledge them and work to counter them. Instead of worrying about what could happen, I strived to feel proud of what I had accomplished. My go to answer of no (regardless of the reason) became more likely a yes and I opened myself up to things that I would never dream of doing. A wonderful work colleague called it facing the fear and doing it anyway…..and it was true.

So my life now, mentally, is as good as it’s ever been. Plus I am returning the favour…..I am now a part of my works wellbeing team and even won an award at Christmas for my wellbeing work. I do strongly believe that the events that happen in your life do shape you as an individual. I had often classed having leukaemia, and the subsequent events as a nightmare start in life. But I like who I am and my life I am leading now (even with hearing difficulties) and who’s to say I would be in a better situation if I hadn’t had gone through that period at 12 years old? This update shows that being a child with cancer will always be a part of your adult life. But it can turn out to shape you as a positive and not as a negative. Be proud of who you are and the journey you have travelled, hurdles you have jumped and obstacles you have overcome.

You are you for a reason. A child who had cancer but so very much more besides.