‘After surviving teenage cancer I have so many questions. I hope Our Future Health helps answer them’
While other teenagers were preparing for their GCSE exams at home or in the library, Ellie Philpotts was revising from inside a hospital, sitting in a chemotherapy treatment chair.
At 15, she was diagnosed with Hodgkin lymphoma, also known as blood cancer. Hodgkin lymphoma starts in white blood cells and affects the lymphatic system. Ellie’s experience left her with some unanswered questions that continue to shape her life today.
Now a journalist and writer, she shares her story to support survivors of children’s cancer, the number of which has more than doubled since the 1970s in the UK.
“Until a few decades ago there weren’t many survivors of childhood cancer because research and treatment were so limited,” she explains. “It means that we’re still learning how teenage cancer impacts survivors in later life.”
Ellie signed up as an Our Future Health volunteer in October, hoping that our programme will lead to a better understanding of childhood cancer.
‘Just a normal teenager’
“I was just a normal teenager,” remembers Ellie, casting her mind back to her school days spent with friends. “I was into writing and journalism but still trying to figure out what I wanted to do with my future.”
Shortly into her first GCSE year, Ellie started to feel fatigued.
Breathlessness and night sweats caused Ellie to visit her GP. “My school was only up the road but after walking there I’d be really struggling to breathe, which I couldn’t just blame on my fitness levels! I’d get terrible night sweats too, which I’d never had before.”
In December, with Year 10 exams just six months away, Ellie visited her GP. She left with an inhaler and a possible case of asthma. On her second visit, she left with antibiotics to rule out an infection. On her third visit, Ellie was immediately referred to hospital. She left ten days later with a cancer diagnosis.
In the UK around 2,100 people are diagnosed with Hodgkin lymphoma each year. It is one of the most common cancers in young people. While certain factors, like smoking and taking immune-supressing medication, can increase your risk, the major causes of the variable genetic mutations that underlie Hodgkin lymphoma remain unknown.
‘It’s hard to imagine how I would’ve breathed’
Ellie and her parents spent ten fraught days in hospital waiting for various test results. “I was in a hospital bed doing my homework when the consultant explained I had Hodgkin lymphoma and introduced me to a nurse who explained my treatment plan. I was diagnosed on the Friday night and had started intravenous chemotherapy by the Monday, so it was quite a lot to take in.”
Medical professionals had discovered three main masses – growths caused by white blood cells growing uncontrollably. Doctors refer to these as masses not tumours in lymphoma, as they’re not as solid as non-blood-cancer lumps. They needed to move quickly because Ellie’s masses were in a dangerous place. “One of them was nine centimetres long and six centimetres wide, wrapped around my windpipe like a snake,” explains Ellie. “It’s hard to imagine how I would’ve been able to breathe if that one got much tighter.”
Over the next six months Ellie had four rounds of chemotherapy in total. She usually spent eight hours in the hospital for her treatment and slept at home. “Cancer aside, the treatment was quite intense,” she remembers.
Two-and-a-half months and two cycles of chemotherapy later, a PET scan showed her masses were responding well. Doctors carried out another two cycles to be sure before assuring Ellie that radiotherapy or a transplant wouldn’t be necessary.
‘I was the only one wearing a wig’
As Ellie moved in and out of hospital, she took her revision with her. “It was a way of having some control, I think. I was already quite behind, and I didn’t want my cancer to take anything more from me.”
She tried hard to keep up with school, going in physically whenever she could. “I was aware I was the only one who had lost their hair and was wearing a wig – it did take strength to face up to that.”
But Ellie’s hospital revision paid off. On GCSE results day, she was featured in the local paper for getting two A*s, two As, six Bs and two Cs.
Question marks over the future
Now 27 and living with her partner in London, Ellie’s journey as a cancer survivor led her to volunteer for Our Future Health. She signed up at Boots Pharmacy in Kensington in October, hoping to learn more about the long-term effects of cancer.
“I’ve been in remission for 12 years now but there’s still so much I want to understand,” she says. “How do I know if my fertility has been impacted? Will my body remember that I had cancer? Am I now at a higher risk of secondary cancer? If I have children, will they be at greater risk of developing cancer?”
It’s these questions that led Ellie to sign up to Our Future Health. “We have come so far but we can go even further. We can’t all be scientists, but we can all take part in Our Future Health.”
Blood Cancer UK and Cancer Research UK are affiliate charities of Our Future Health.