Courtenay's story

Inconclusive diagnosis – and confused doctors!

My dad was the first to notice the lump on my neck. The left side had swollen to about twice the size of the right. That was Easter Sunday, 2001. Two days later, I was at the local doctor’s surgery being told I had glandular fever. A blood test was taken, but it came back negative. Several blood tests later and my condition was still no clearer. I had everyone confused: both my GP and the specialist at the hospital were convinced I had glandular fever but the blood tests just kept showing up negative and the lump on my neck wasn’t getting any smaller. With the doctors at a loss as to what was wrong with me, I was sent for a biopsy. But even then the initial results were inconclusive. I was told I had something called toxoplasmosis; I just had to rest and I’d get better. Two weeks later I had a different diagnosis: Hodgkin Lymphoma.

Total shock – I’d always been so healthy

It was more than just a shock for me and my family. I’d always been a happy, healthy and active child. I was rarely unwell; I never missed school. Suddenly I was faced with six months of chemotherapy. I was told I wouldn’t have the energy to do sports anymore, nor was it safe to do so, with a port inserted just under my right collarbone. I spent the whole summer reading and sleeping: they were the only things I had the energy and the ability to do.

Losing my hair

The biggest thing for me was losing my hair. I remember being in tears, absolutely inconsolable, just for my hair. I’d just been told all about the treatment I would undergo, what it would involve, how long it would take, how it would make me feel but the only thing that concerned me was my hair; my beautiful long, thick hair. It took me 10 years to grow it back to the length it was before my treatment and I now refuse to have it cut short.

Six months of chemotherapy

I underwent six months of chemotherapy. One month was oral: two weeks of 16 tablets every day at lunchtime. The next month consisted of two intensive sessions of IV treatments. And it carried on like this for six months. It’s hard to say which kind of treatment was worse. It got so hard to take the tablets that I was prescribed another tablet aimed at calming and relaxing me so that my throat would open up enough to swallow the other 16 tablets. The IV treatments, on the other hand, would make me so sick and weak that the only thing I was capable of doing was sleeping and vomiting.

When the treatment ended I got a terrible cough

The treatment finally ended on November 30, 2001, but that wasn’t the end of it. Just when it finally seemed that everything was over I came down with a horrible cough. I remember insisting that I was going to school: it was supposed to be all over, I’d finished my treatment, I didn’t need to be in the hospital anymore. But here I was, back in hospital, in more danger than ever. My dad was only days away from leaving on a cycling trip, raising money for cancer charities, and I was delirious, with no clue whatsoever what was going on.

My parents started running for charity, and inspired me

My parents took up running shortly after I was given the all clear. I watched them both train and complete the Great North Run and it inspired me to try it out. I was back at school and I wanted to do all I could to ensure that I never found myself in the same situation again. At age 16, I took up running. I hated it, but I kept at it. My dad encouraged me and I found myself improving. It’s now an obsession. Running makes me feel strong, healthy and powerful. It’s my way of escaping from the difficult things in life and gaining some perspective. It makes me feel in control – something that’s impossible to feel as a teenager suffering with cancer. I know what an important role cancer charities play in getting children, young people and their families through the horrific experience of childhood cancer. What better way to give something back than to run a marathon for Children with Cancer UK? Watching the London Marathon in 2013, I felt inspired. My dad had already completed several running and cycling challenges for cancer charities but neither of us had ever run a marathon.

Running for Children with Cancer UK

We both signed up to run for Children with Cancer UK, training through the wet and dark winter and doing our best to raise as much money as possible for the charity. On a hot day in April 2014, we both completed the marathon, raising over £2000 for Children with Cancer UK. As I crossed the line, my eyes filled with tears. Almost 13 years after being diagnosed with cancer I’d run a marathon.

How you can help

If you’ve been touched by Courtenay’s journey, help us invest in the high quality research that really matters which would otherwise go unfunded. This helps to support children with cancer so they can be with their families for longer. Donate Now       Fundraise Here

Have you or a family member been affected by childhood cancer?

Many of our supporters have been affected by childhood cancer – either through family, friends or their own personal experience. These patient stories can help inspire others to get involved with us, or can support our media work. If you have a story that you would like to tell, please contact us by email.
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