I've always seen the world through my 'cancer lens'

"Having acute myeloid leukaemia (AML) at such a young age meant I lived my life through a 'cancer lens.' I grew into a young adult acutely aware of my own mortality, which was quite an alienating and lonely experience. I was cancer-free, and treatment was so long ago everyone expected me to be fine and have moved on. The expectation is that blood cancer is something you leave behind once treatment is over. I’d love to leave it behind, but as many will know, it’s not that straightforward.

I was diagnosed with AML in June 2001 when I was four years old. I remember living at the hospital undergoing treatment for what felt like a long time. By February I was in remission.

Despite being in remission, there was always a worry my blood cancer would come back. It hasn’t thankfully, but I have been closely monitored ever since. I have a long-term follow-up team because of my risk of heart failure, and secondary cancer. I actually only realised a few years ago that this would be lifelong, I thought I’d be monitored until my teen years or early adulthood, but I didn’t realise it would be my whole life.

Part of my treatment has permanently damaged the left side of my heart. My parents knew it was a potential side effect at the time, but also knew I needed the treatment to survive. We weren’t thinking about the long-term side effects I have to deal with now. At sixteen, I then developed lumps around my neck due to a mass of scar tissue from my Hickman line entangling with nerves causing scoliosis. The damage led to chronic pain. It was a lot to deal with in my teen years. Despite not having blood cancer at that time, it was still causing me pain. Now as an adult, I know my fertility is affected too.

It sounds morbid, but I didn’t think I’d grow up. I was so acutely aware of my own mortality, and I was always aware I could die. Until the age of eleven, the chance of relapse was high, so as I entered puberty and teenage life, my family were relieved and celebrating. But I spent my entire childhood knowing doctors were checking me over because I might be so sick that I died. It’s hard to change that wiring in your brain. My scans moved to every year, and it felt like being thrown out into the world. We don’t need to see you so much anymore, but we’re also never going stop looking at you.

As a teenager, it didn’t feel like anyone else really understood what I was feeling. My peers lived more recklessly and wanted to have fun, but I saw the world completely differently: life is precious, and not guaranteed, I felt I should live carefully. Because of that, I found it hard relate to my friends and join in sometimes. It’s taken a lot to process and come to terms with the fact that it’s not their fault, nor mine.

Even as an adult, you can’t leave your past behind, so moving on isn’t always easy. When you’re around people who don’t know about your history with cancer, they just see a normal healthy 27-year-old. You don’t want to be the one to bring up that you had cancer as a child, because in most situations, it doesn’t feel relevant. I’m not a patient anymore, but my history still shapes who I am, affects my health, and inevitably changes how I’m perceived.

I didn’t think I could go on and do the things I do now. It's a hard transition between fearing death and seeing a grown-up future for yourself. It’s ok to feel like that, but I’d encourage anyone else going through it to let themselves picture the future, let yourself get where you want to go, your feelings can power you to do the most amazing things.

Having blood cancer as a child motivated me. I went onto train as a children’s nurse and even worked on a cancer ward. It helped a lot as a nurse to have the background I do, it’s given me a unique perspective to be able to sit with someone and say I understand and really mean it.

Going through treatment so young, as a four-year-old, I saw the best in everything. But as a teenager facing a future of uncertainty, I wasn’t prepared, and no one does prepare you for it.

If I could give one piece of advice to other children or teenagers, I’d tell them to find a network of people who understand. It doesn’t necessarily mean they have to have had cancer. I’ve made friends with people with all kinds of conditions. I realised the rest of the world goes through things too. I felt like the only one, but now I realise how many other people had a similar situation to me, even if not exact. It’s an experience that can connect me to people, rather than alienate me.”