Callum's story

“The sharpest pain I’ve ever felt in my life”

Pain during cancer treatment is extremely common.

“Before I was diagnosed, I started getting really bad shooting pain going down my right arm,” Callum explains. “This was later discovered to be because the tumours had grown so big - they were crushing the nerve to my arm.”

Callum experienced extreme nausea and fatigue from the start of his treatment. “I couldn’t even handle a simple bus journey. After one stop, I had to get off and throw up. Chemotherapy makes you really nauseous.

It also made me extremely fatigued,” he adds. “Especially after the second cycle of chemotherapy – I was just completely wiped out.”

“The pain is still there, even five years on”

During the second cycle of chemotherapy, Callum’s nerve pain worsened.

“It started in January time – I woke up one morning, and I remember just the sharpest pain I’ve ever felt in my life. It went from my spine, radiating all the way down to my legs.

I couldn’t walk, couldn’t take any steps. We had to call an ambulance, and I was then in the hospital for almost two weeks on bed rest.

It was diagnosed as neuropathic pain, likely caused by one of the chemo drugs I was having. My consultant told me that some other teenagers he was treating for the same cancer had also presented with similar pain.

They started me on neuropathic pain drugs. But the pain was still so bad that I couldn’t walk without an aide.”

Physiotherapy helped him walk again, but the nerve pain became chronic. “I still have my crutches now,” he explains. “The pain is still there.

I now suffer with chronic fatigue as a result of my treatment,” he adds. “I'm tired constantly, even five years on.”

“I felt pressure to keep it together”

“We’re taught about cancer in science lessons – mutated cells rapidly dividing, turning into tumours. But the toll that treatment takes on your mental health and your body physically isn’t touched on at all, really.

When I was first diagnosed – I think for anybody that age, it’s very confusing. And I’m the type of person that likes to know everything.

With cancer treatment, you don’t really know what to expect and the doctors don’t always tell you everything about what’s going on. I think that’s one of the things I most struggled with – especially with my own body, I like to know everything.”

He remembers the moment of diagnosis clearly: “When the consultant said those words, it was the first time it actually sunk in. After he left, I broke down and started crying.

But I felt pressure to keep it together for my mum – she’s a single mum and I’m her first-born boy.

And then once the actual treatment started, it was a heavy adjustment. My Monday to Friday was not going to school anymore.

I’d never had to stay in hospital before. And then I was in a four-bed teenage cancer bay, surrounded by three other teenagers having chemo – they had no hair and looked quite ill. Being confronted with that was very hard.”

“My hair is part of who I am”

“My hair is something that’s really important to me. It’s curly, it’s big, it’s part of my identity – it’s who I am.

After the first day of chemo, I was getting ready, combing out my hair. As I’m combing it, big chunks are coming out.

That morning I asked my mum to take me to the barbers. I told her I’d rather it all come off than it come out in clumps.

Looking back on it now, I think that was me taking control. I wasn’t just going to watch it happen – I was actively making that decision.”

“I think I need to speak to somebody”

By the time the severe nerve pain started affecting Callum, his mental health was also hard to ignore.

“By that point, that’s when the mental effects of my treatment had begun to really take hold,” he explains.

“My nurse came to check on me and I just said I think I need to see somebody.”

He began cognitive behavioural therapy (CBT) a few days later, continuing for two and a half years. During this time, he was also diagnosed with depression.

“I was forced to grow up very quickly”

When the COVID-19 pandemic hit, Callum’s treatment had intensified.

“During what was already an incredibly intrusive, gruelling and painful process, I had to contend with the added element of self-isolation,” he explains. “This meant not seeing family or friends – I had to keep myself totally separate.

I was forced to grow up very quickly in a short space of time. I was worried about getting COVID whilst having cancer. Would that kill me? Would that be the thing that would wipe me out?”

“In the drama studio, I wasn’t a cancer survivor”

In the summer of Year 11, Callum started his own theatre company - ‘Flip the Script’.

“Drama helped me throughout and after my treatment,” he explains. “It has the unique ability to remove you from your own life and place you into someone else’s story. When I was in the drama studio and the lights came up, I wasn’t a cancer survivor, I was Macbeth, or whoever I was playing at that time.

"One of the things Flip the Script is doing at the moment is writing a play about young people with cancer. It will be a raw portrayal of the experience as told by cancer survivors themselves."

Exploring mindsets and tools

Callum took part in a study by Dr Lauren Heathcote at the Institute of Psychiatry, Psychology & Neuroscience at King’s College London, exploring how young cancer survivors can manage chronic pain by changing how they think about their bodies and their pain.

“We explored mindsets – how you coped with both treatment and life afterwards,” Callum relays. “I talked about the tools I would utilise to help me deal with the psychological aspects of treatment.”

The approach uses video interviews with survivors like Callum, sharing their experiences to help others reframe their own.