When I was diagnosed with cancer, friends said they were too stressed about GCSEs to offer support

Fifteen is a transformative time for any young person. There are GCSEs, prom dates, and looking forward to driving lessons. But for Amelia Howe from Rugby, 15 was also the year she received her cancer diagnosis.

“I was shocked because it took so long to be diagnosed,” Amelia, now 23, says of her diagnosis in February 2017. “I just assumed if it was serious, it would have been found with more urgency. It felt like a nightmare to be honest.”

Despite symptoms including hearing loss, swelling in the roof of her mouth, Horner Syndrome (where something pressing on a nerve makes one eye droop), and fatigue, doctors diagnosed Amelia with nothing more serious than excessive ear wax.

Four months after her first symptoms, Amelia was sent to A&E where doctors found a tumour. It was only then she was diagnosed with Stage 3 Rhabdomyosarcoma, a rare cancer in the parameningeal space behind the sinuses and, in Amelia’s case, affected the head and throat.

“Because of where it was, the tumour was inoperable, so I was treated with chemotherapy and proton beam therapy [a different kind of radiation therapy],” explains Amelia. “It was classed as a high risk cancer. The survival rates weren’t good, and doctors told me even if I did recover, I would probably relapse and if I did, I’d probably die. My odds weren’t great.”

Amelia’s world collapsed. “It was obviously difficult,” she says.“I couldn’t be at school because chemotherapy suppressed my immune system so there was a risk of infection. School had always been a big part of my identity, I’d always done really well but because of the treatment - I was receiving proton beam therapy in the States, so I wasn’t able to sit my GCSEs - which had quite a massive effect on me.”

But the most trying thing for Amelia was the insensitive comments she received from the people around her. “I got quite a mixed range of responses,” she says. “Some friends said ‘sorry, I can’t support you, I’m too stressed about my GCSEs.’ I had a teacher say ‘if I woke up tomorrow and had your life, I couldn’t get up in the morning, I don’t know how you do it.’ The most common thing was people telling me about their relatives who’d had cancer, often quite traumatic stories.”

With the benefit of hindsight, Amelia has come to understand the latter response. “If people don’t know what to say: they will try to relate to the situation,” she thinks. “It’s just not helpful because you end up having to be the comfort to them.”

While she admits to being a “people-pleaser” who mostly just took the insensitive comments on the chin, one which did cause Amelia to speak up was when a friend wrote a letter saying, “If I could take the cancer from you and have it myself I would do.”

“That was insane,” says Amelia. “People who say things like that are thinking about themselves rather than what would actually make the cancer patient feel better. There is no option for you to ‘take the cancer’, why suggest that? I didn’t think that was on.”

Amelia’s treatment took a year. From being diagnosed in February 2017, she received chemotherapy in the UK until April 2017, before moving to Florida for proton beam therapy for three months, then came back to the UK and continued having in-patient chemotherapy until August, followed by six-months maintenance chemotherapy which she took at home.

By August 2017, doctors told her scans were all clear, and by February 2018, a year from when she was first diagnosed, Amelia was finally in remission.

Now that she has been discharged from the oncology clinic, Amelia has begun volunteering with the Teenage Cancer Trust’s Youth Advisory Board. Within this role, she and other young cancer patients who’ve been supported by the charity have helped to create new resources for other young people about how to deal with cancer. They have also worked with the Trust on projects which aim to change the way young people’s cancer is communicated about.

“One of the things I had the biggest problem with around cancer is all the fighting talk,” says Amelia. “‘Battling cancer’, ‘beating cancer’, ‘the fight against cancer’. These phrases are so ingrained in the way we talk about cancer, but for people going through it, it’s so unhelpful.”

Amelia’s biggest frustration with the talk of ‘fighting cancer’ is that it implies a level of control which, in reality, is something of which cancer patients have very little.

“One of the things I found hardest about cancer, especially as a young person who was otherwise healthy and able-bodied, was that it ruins all ideas you have about the control you have over your body,” Amelia explains. “Cancer takes over your life, what you can do, who you can see. You miss opportunities. When I heard things like, ‘you’re so brave, you fought so hard’, it just exacerbated the focus on control which I didn’t have.

“I’m still coming to terms with the fact that there’s no control over anything in life at all, it’s quite frustrating to hear people tell you the opposite constantly,” Amelia explains.

When Amelia did finish her treatment, the fighting talk took on a sinister edge. “I made friends on the ward who ended up dying from their cancers,” she says. “People saying I’d ‘won the battle with cancer’ implied they’d lost because they didn’t fight enough. That exacerbated my survivor’s guilt and made me feel guilty being in remission. I hadn’t won any battle, it was just luck.”

The other difficulty in telling someone they ‘beat’ cancer is that there’s always the possibility it could come back. “A lot of cancer wards have an ‘end of treatment bell’, which is a bell you ring to celebrate being cancer-free,” explains Amelia. “It took me years to ring it because I kept thinking, ‘imagine how awful I’ll feel if I ring it and then my cancer comes back?’”

Ultimately, Amelia says, what anyone going through a life-threatening illness really needs is not platitudes but time. “I appreciated the responses which let me know people were still there. The offers of time to talk were really important – so often I didn’t want to reach out to people because I felt like I was being a bother so I appreciated the people who made sure to tell me they wanted to be with me. Being there is the best thing you can do.”

Teenage Cancer Trust is one of four charities supported by this year’s Telegraph Christmas Charity Appeal. The others are Humanity & Inclusion, Alzheimer’s Research UK and Army Benevolent Fund]. To make a donation, please visit telegraph.co.uk/2024appeal or call 0151 317 5247