Emmie

Emmie bravely shared her story at our conference in 2025

“Hi I am Emmie and I am a Childhood Cancer Survivor. On the 4th of September 2017, I was diagnosed with acute lymphoblastic leukaemia, a form of blood cancer.

 This diagnosis has changed my life – it started with feeling a bit off on my summer holiday – looking pale, green and not really eating – bruising easily and getting tired. It quickly escalated when we got home, with a trip to the GP and then A&E. Before I knew it, I was in an isolated room with my brother – cannula’s in both arms waiting for my parents to come back in the room. They had been ushered out to be told something, I thought nothing of it – this was a different experience for me, I had never been to hospital before – but they hadn’t been taken out for no reason they were being told about the disease that would significantly impact me for the rest of my life.

 At the time I was eight, I was an eight-year-old girl on top of the world excited for her first day of year 4 the next day. But in reality, I would be spending the next nine months living in and out of the hospital- not knowing where I was, what was happening, what was coming next. Constant blood transfusions, blood draws, bags of chemo, surgeries and infections and so much more all waiting to pounce on me.

 Don’t get me wrong hospital life wasn’t all bad – I went to hospital school, I made friendships, I got the opportunity to be involved in exciting things. I collected thousands of beads of courage. I was involved in the designing a new hospital garden and I started my own charity to help look after the parents staying in the Royal Manchester Children’s Hospital.

 After year 1 of treatment I returned to year 5 except no hair, constant appointments and checkups, antibiotics, medication, LP’s temperature taking at the same time as trying to maintain friendships – finding a new norm all whilst still processing the stark reality – that only one in every 500 children are diagnosed with cancer each year, why was I that one? what did I do wrong?

Two and a half years after my initial diagnosis I finally completed my treatment and rang the bell.

There is a common belief that once the hair grows back life goes back to normal. Right? But that’s so far from the truth. Research suggests that 95% of childhood cancer survivors will suffer a long term health condition by the time they are 45. This can be as a result of the toxic chemicals within the chemo which can lead to muscular problems and secondary cancers.

No one really prepares you for the guilt, struggle and pain you face throughout the years post treatment and I’m only just 5 years post NED ( no evidence of disease).

For me I experience feelings of guilt. Spending such a long time on an oncology ward made me very aware of the sudden loss of other children on the ward – having numerous close friends fighting for their lives really puts into perspective how quickly life can end – I often wonder why I survived when other didn’t – do I need to live my life to the fullest because they didn’t get that opportunity. All these question and thoughts echo in my mind. There is no real specialist mental health support available for children who have survived and how to build their lives back up to the way they wanted to be. Will I always be known as the cancer kid ?? to me and to others.

It’s only relatively recently that so many children survive into adulthood after a cancer diagnosis – in effect I understand that we are still learning the long-term health impacts! Although there is already evidence to suggest that there are impacts though out puberty, cognitive and processing speeds, fertility and a growing understanding on the risks of mental health disorders.

I have many physical scars but nobody can really see the impact on my self-confidence and self-worth. Over the past five years I have struggled with an eating disorder, delayed puberty, anxiety and significant OCD.

As a society we are increasingly more aware of the challenges young people are facing with their mental health, the covid pandemic really demonstrated how hard the impact of isolation and uncertainty had on young people and we are now seeing huge waiting lists for mental health services- imagine a childhood cancer diagnosis on top of that I’d already spent 2.5 years practising infection control and sanitising my hands – then the whole world went into lockdown.

Now I want to advocate for other childhood cancer survivors to join a global network and ensure that we celebrate life but also recognise and understand the challenges that unfold after treatment – survivorship is not only about curing cancer it’s also about living after cancer.”