Hair loss, chemo and the silence of friends
Ben was the most gifted athlete I have ever come across," says Nigel Revell, beginning his talk to a hall full of Year 12 pupils. Fourteen- year-old Ben played on the rugby team that Mr Revell coached and was expected to go far.
But Mr Revell is not here to talk about rugby. He has been invited to the school to talk about cancer. It was "the last thing I expected to happen to any of those lads," he says.
Over the next hour, the pupils at Beaumont School in St Albans, Hertfordshire hear how Ben kept going back to the doctor about his sore knee but was not taken seriously; how he was finally diagnosed with cancer after four months; how he was put into a children's ward and could hear parents voicing their outrage that a teenager was sleeping next to their young children; how he then coped with being in an adult ward with 17 other men and had to listen to one of them die over the course of a night.
Ben's hair loss, chemo and hospital stays are the universal story of life as a teenage cancer patient. But it is one that rarely gets told. Young children with cancer are a relatively familiar - and distressing - image in newspapers and on television. But teenagers with cancer are virtually invisible.
Ben died just before his 18th birthday. But it was through his experience that Mr Revell was introduced to the Teenage Cancer Trust, where he is now director of education. He did not expect any of his rugby team to get cancer. But teenage cancer patients face a distinct set of challenges, on top of the disease itself.
Teenagers are more likely to have difficulty in getting doctors to take their symptoms seriously, says Mr Revell. Then when they do get a diagnosis, doctors tend to talk to the parents, rather than the patients about what is happening. This may be appropriate for young children, but can leave teenagers feeling powerless. Rapid changes taking place in their bodies also means the treatment often has much stronger side-effects than it does on adults.
And aside from the medical issues, the everyday things that teenagers take for granted - school assembly, homework and hair straighteners - can become filled with unspoken questions and concern.
"Ben told me that he knew what all his friends wanted to ask him. He said: `I've lost the hair on my head, and I know they want to ask me if I've lost all of my hair on my body'," says Mr Revell, raising a couple of laughs in the hall. "But he said if they couldn't work up the courage to ask him, he wouldn't tell them."
The trust's primary focus is setting up and equipping specialist wards for teenagers. Too old for children's units and too young for adult wards, teenagers often feel out of place in either setting. Alongside this, the trust also runs a comprehensive education scheme.
After speaking to patients, they realised that teenagers needed to be better informed and more confident about asking doctors for advice. The trust drew up an outreach programme and last year its education team delivered 2,000 talks in schools across the UK, reaching 180,000 pupils.
While these talks raise awareness of cancer and its symptoms, they are also designed to give teachers and classmates a deeper understanding of what teenage cancer patients have to go through.
Claire Woolger is now 20, but she still remembers the difference that the talk made to her life at Highworth Grammar School in Kent. At 15, she was diagnosed with a rare cancer - embryonal rhabdomyosarcoma - the first sign of which was a lump on her jaw and then in her mouth. By the time it was diagnosed, it had spread to her right lung.
Claire went through a series of chemotherapy treatments and radiotherapy over the course of a year but managed to keep going to school the whole time, only missing the odd day or half-day.
"It was a way for me to cope - a way of trying to keep up normality," says Claire, now studying at the University of Southampton. "I'm a bit of a worrier. If I had stayed at home, I would have worried about it. All my friends were there when I went to school, and I tried to carry on as normal."
She credits her teachers for making allowances and being understanding about what she was going through. Inspired by her experience, Claire plans to train as a teacher after university.
But she says relationships with her peers were more difficult. "I spoke to my close group of friends about it, but I don't think they really grasped it. It is quite a scary topic," she says. While her friends were talking about their love lives, Claire had other things on her mind that she did not feel she could share.
"I couldn't really say: `Well actually I am worrying about the fact that I have stage four cancer (the most serious), am undergoing heavy chemo, which means that I am going to lose all of my hair, possibly my eyebrows and eyelashes too; that I could be sick on a very regular basis'."
One of her teachers contacted the Teenage Cancer Trust and arranged for Mr Revell to come into school and give a talk to her year group. At first, Claire was apprehensive, but she decided to sit in on the talk with her classmates.
"Nigel did something that I could never do: he made cancer seem something that you could speak about," she says. "He grabbed the attention of all of us by telling stories about other people. He showed everyone in my year that a teenager with cancer is still a normal teenager."
It was through Ben's treatment that Mr Revell got to know about the trust's centres. He initially took a year off from running his business to dedicate time to giving talks at schools, but after 15 years he is still with the charity.
He says schools are still reluctant to discuss cancer. "The PSHE curriculum has helped, but staff are still afraid of the C-word. Teachers often have more problems with it than the pupils."
Some schools have also vetoed parts of his talk. One Roman Catholic school asked that he did not mention the link between HPV (a sexually transmitted infection) and cervical cancer, or discuss the practicalities of teenage boys freezing their sperm before undergoing treatment. "That is a shame, really, because a lot of young men become infertile, so it is an important issue," says Mr Revell.
Paul De Kort, head of sixth form at Beaumont School, says that teachers may also have personal reasons for a reluctance to discuss the issue with their pupils. "At the age a lot of our teachers are, at least two or three of them probably have parents with cancer," he says. Mr De Kort's own father is currently being treated for prostate cancer.
"There is also the fear that it will be a difficult subject, and tough, and that pupils will get upset," he says. "We have a very active parent body here and I get feedback from them quite a lot." But the school has never received complaints about the cancer talks. Since the first one six years ago, Beaumont School has arranged for the trust to give an annual talk to its Year 12s.
"It is similar to things like drugs or sex education, people are always wary about teaching it," says Mr De Kort. By bringing in an external speaker, he says the teenagers become equipped with the knowledge they need and will feel more comfortable discussing it with friends, parents or even teachers.
Finding out that one in every 500 teenagers get cancer was a bit of an eye opener for this year group, including 16-year-old Mariam Samirava. "You don't think about the fact that teenagers get diagnosed with cancer every day," she says. "You can easily read about it on the internet, but not understand what it means. The way Nigel described it, you really understand what the person is going through."
Other pupils were angry on behalf of the teenagers Mr Revell cites in his talk, many of whom were not taken seriously by their doctors. One suggested a girl was pregnant. Instead she had a tumour the size of a grapefruit that was not treated for months.
"A lot of people think that teenagers aren't quite adults, but we're really quite close," says Benjamin Williams, 16. "We understand an awful lot."
After the talk, a few teenagers stay behind to ask questions. Sometimes they want to find out more about the young people Mr Revell talked about or learn more about the centres for teenage cancer patients, which have pool tables, kitchens, widescreen televisions and rooms where adults are not allowed access. But sometimes the teenagers want to ask him about a lump they have found and whether they should get it checked out.
Whether the audience is made up of undiagnosed cancer patients, former patients, their friends or teachers, these talks speak to everyone present. "I just felt that it was important to have someone come in because it's so potentially preventable," says Mr De Kort. "It could have been a different outcome for so many teenagers."
A survey of 400 12 to 19-year-olds across the UK found that cancer is a big issue for teenagers:
- 70 per cent know someone who has, or has had, cancer;
- 74 per cent said they would not know what to say to a friend with cancer;
- 50 per cent said they would avoid talking to them about it;
- 37 per cent thought that cancer could be caused by knocks and bumps;
- 12 per cent thought cancer could be catching.
Source: Macmillan Cancer Support.