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May 3, 2011

TRIALS AND TRIUMPHS May 3, 2011

Quick Facts About Teen Cancer

About 2,100 young people (aged 13-24) are diagnosed with cancer every year in the UK. Thats about six people every day, and this number is rising yearly. Teenage Cancer Trust has built 17 units in the UK and plans to build another 16 1 in 312 males and 1 in 361 females will get cancer before they are 20. The predominant cancers among 13 to 18-year olds are leukaemia, lymphomas, and brain tumours. The predominant cancers among 19-24 year olds are lymphomas, carcinomas (soft tissue cancers), and germ cell tumours. Nearly three-quarters of people aged 13-24 who develop cancer now survive. The survival rate for leukaemia has risen by 20% over the last 20 years. The survival rates for brain tumours, bone cancers, and soft tissue cancers have remained nearly unchanged since the 1980s. (From Victoria Evans at the Teenage Cancer Trust. Research from The Ofce for National Statistics 2005. Analysed by Dr. Robert Alston, Professor Jillian Birch, and Professor Tim Eden.)

The Teenage Cancer Trust hosts numerous concerts and events to raise money for the foundation. Photo by Amanda Blaze Pillon

TRIALS AND TRIUMPHS May 3, 2011

Whats life like for teenagers with cancer?

By Amanda Blaze Pillon On the 25th of March, Dom Dichen, 18, appears onstage in front of 4,500 people at the Royal Albert Hall. But hes not a musician or a comedian or a stage performer. Hes a teen cancer survivor, and the show is one of seven in a series of annual concerts to raise money for the Teenage Cancer Trust (TCT) in order to help young people with cancer. When Dichen was just 17, he was diagnosed with bone cancer. More than a year of treatment and one knee replacement surgery later, hes in remission, back in school, and spreading awareness about the prevalence of teen cancer. His goal is to show people what they can do to make the ght against the terrible disease easier for young people everywhere. T h e W h o s Ro g e r Daltrey comes onstage to introduce Dichen. Daltrey has been a patron of the TCT nearly since its inception. The TCT's concerts at the Royal Albert Hall are organised every year with Daltreys support. Starting in 2000, the concerts have raised more than 10 million. In the past, the shows have featured a range of musical acts including The Who, Coldplay, Kasabian, and Paul Weller. But tonight Daltrey isnt performing. Hes here to talk about raising cancer awareness, and to set the stage for Dichen. Just a young adult, Dichen takes the stage and addresses the rowdy crowd with condence. The fans are here to see Beady Eye, and even though its a concert for the TCT theyve already tried to get the emcee from Absolute Radio off the stage twice by chanting the singersname. But when Dom appears, the crowd goes silent in respect. They nally listen. "So, I feel like I can let you in on a bit of a secret about cancer, Dichen says, conding with the crowd. It is... well it's shit, to be honest. The rough crowd cheers and applauds. Cancer patients typically face painful, tedious treatment and long stays in hospital. Chemotherapy can be especially brutal, says Luke Peaple, a nurse with the TCT unit in Manchester. "For half of a 21 day cycle, they feel crap," Peaple says. For the rest of the time, they try to recover and live normal lives. Once patients have had serious cancer treatment, they m i g h t n e e d t o s t ay o n medication for the rest of their lives, Peaple says. Further, the medication might reduce their life expectancies. There are increased risks of heart disease with many medications, and fatigue and chronic pain are both common symptoms of radiotherapy, chemotherapy, and surgery. While chemotherapy treatment kills the cells causing cancer, it also kills healthy cells within the body. According to Iigo Tolosa, a psychologist at the Birmingham Cancer Centre. One in ve people die from luekaemia treatment. Leukaemia is one of the most common forms of cancer among children. Cancer and its treatment can also cause changes in physical appearance. The disease visibly affects patient health. Cancer removal can mean amputations of whole limbs, and visible scarring, which can result in issues with body image. Chemotherapy
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can result in hair loss, which, especially for young women, can be devastating to who Days 1-4: Drug treatment patients feel, Tolosa says. The Day 7: Patient recovers from treatment changes not just affect how Day 10: Chemo damages bodys ability to ght infection patients look, but can serve as Days 11-15: Return to hospital for recovery a constant reminder of the
Typical 21-Day Chemotherapy Cycle
Day 21: Patient fully recovers again, cycle starts over

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Image courtesy of David Millward

A conversation with David Millward

David Millward is only 16 years old, and as I speak to him on the phone I wonder how willingly he is going to discuss the illness that nearly took his life last year. Im struck immediately by the maturity of his voice and the supreme condence with which he answers. He immediately makes it clear that the fact he had cancer doesnt dene him. Instead, David talks about his keen interest in sport. Hes an avid cricket and football fan. He calls himself a future cricketer. Hes played sports since he was 4 years old, and since he lived in Texas in the United States for 6 years starting at the age of 7, he even has the skills to play a few American sports under his belt. But just last year, playing any sport was out of the question for David. His health problems began in November of 2009 when he was treated for a viral infection that lasted three weeks. He had typical symptoms and the doctor sent him home saying he would recover. When he returned to the doctor with extreme muscle pains, they told him it was a result of his chronic cough. His third return to the doctor, on 1 December, revealed David had a collapsed lung. I was obviously shocked to begin with when the doctor sent me to the hospital, David says. Id never been to hospital my entire life. He was immediately taken to the Leicester Royal Inrmary, an hour from his home in Warwick. On 4 December he had an operation to remove uid in his collapsed lung. He was in a medically induced coma for ve days. Waking up from the coma shook me a fair bit, David says as if hes thinking about it for the rst time in a long while. He sounds almost detached from the incident, like hes remembering something from another life, I remember it was December and my main goal was just to get home before Christmas. I didnt think about the illness so much, I just wanted to get myself out of the hospital. He was able to get back home for the holidays and tried to put what had happened out of his mind. In January, doctors did further tests. At rst, they were inconclusive. I was more nervous right before. I was left in a medical mystery, David says. On 18 January, David had surgery to remove a mass from his chest. It was then that he was diagnosed with T-Cell Lymphoblastic Lymphoma, a massive malignant tumour in his chest. There was an underlying sense of dread. Cancer. David says, with a strong emphasis on the C-word. Thats a big word to be thrown around. But I felt more condent just knowing

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what it was. Further boosting his condence was that he was already receiving treatment in a paediatric oncology ward, geared specically toward treating children with cancer. His father would be able to stay with him, and David knew that the doctors there would be able to meet his needs and know how to treat him, which he said felt a lot better than being left undiagnosed. David was bedridden in the hospital for 83 days, from early February 2010 to late March during heavy treatment. The side effects from chemotherapy left him very weak, with microfractures in both kneecaps, his ankles, and his lower spine, and his muscles barely worked because of the steroids he was taking. To dull the pain they gave him morphine. As a result, he has no recollection of six of those weeks. It was quite scary, David says. I had no idea what I was doing for all that time. On top of painful treatment, there were further downsides to being treated in a paediatric oncology ward at the age of 15. David was usually surrounded by small children. After hed recovered a bit physically, he was sometimes able to socialise with another boy his age, named Mayer. Still, he was typically the oldest patient around. The ward treats people with cancer from babies to the age of 16. When David was there, his average neighbour was 10 to 12. At rst, David didnt pay too much attention to the lack of people his own age to hang out with. Hed always wanted to do a sports science degree and become a childrens coach, and he had coached younger kids before. He found it quite natural interacting with them and trying to be a positive role model for them during the difcult recovery stages of cancer. The small children were brilliant, David says, his words tinted with his fondness for them. Id go into the playroom and help them along, and that was always good fun. But before long, David found difculty with it. It became hard not having others his age around to speak with, and often he was denied some of the luxuries hed grown used to as a teenager.

I would speak with Mayer sometimes, but theres a limit of what you can talk about, what you can watch on TV and the lms you can see because youre surrounded by small children, David says. You dont want to scare them or show them anything inappropriate. Instead, David found himself talking to the childrens parents often. Still, they were brief passing conversations. He longed for the chance to socialise properly and get to know people. Missing so much school, I denitely missed just having everyday conversations with people, David says. That was the worst bit. Missing my social life. And I was treated in a hospital an hour away so my friends couldnt visit. He did nd some solace in the friendship of Faye, a youth worker from the Teenage Cancer Trust. I think the main thing keeping me going was Faye, David says. She would come in and see me for a couple hours in the afternoon, and shed ask how I was doing. It was like having a friend from home. Any emotion or frustration or anger of sadness I had, it would be perfectly ne to talk about, nally. After a long ordeal in hospital, David is now in the remission stage. The tumour has been dead for months, and the mass in his chest is shrinking. Hes on the way to complete physical recovery. Recovering the life he had before he was diagnosed with cancer may take longer. When you get released and once you go home, its hard adjusting back to normal life, David says. He was out of school for eight months last year. Im a big sports person, and the feeling of not being able to go out and play sports because of the effects of the medication, and not being able to go out and go out with friends- well adjusting is a really big step. With sports such a huge focus of his life, hes working hard to get back into the shape he was strength to get back to that point.
David poses with a friend, former cancer patient Jac
Image courtesy of David Millward

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especially for young women, can be devastating to how patients feel, Tolosa says. The changes not just affect how patients look, but can serve as a constant reminder of the disease. Intense cancer treatments affect patients not just physically but also psychologically. 18-year-old Carolina Tenorio-Espionosa beat lymphoma at the end of last year and felt the strains of the disease not David with cricketer Michael Clarke only on her body but in her mind. "Knowing that you are in Image courtesy of David Millward hospital and you're seriously sick makes you feel a lot worse, Tenorioshrinking. Hes on the way to complete physical recovery. Espinosa says. The only thing you Getting back the life he had before he was diagnosed with want is to be back to normal." cancer may take longer. Different types of cancers can When you get released and once you go affect people uniquely. The concerns home, its hard adjusting back to normal life, David of a patient vary not just according says. He was out of school for eight months last year. to the way they handle the disease, Im a big sports person, and the feeling of not being but to the disease itself and how able to go out and play sports because of the effects of cancer affects them specically, the medication, and not being able to go and hang out according to Tolosa. with friends- well adjusting is a really big step. Young males with testicular With sports such a huge focus of his life, hes cancer, Tolosa says, primarily want to working hard to get back into the shape he was in maintain normality in their lives. before the disease took hold. It requires a delicate They want to put the cancer behind balance of training and taking things easy. them, and typically they do. Im still taking tablets everyday but Im "We have a 95 per cent getting healthy, he says. I can go out no problem and Im starting to play cricket again. I wouldnt be recovery rate with testicular cancer able to play football or rugby or full contact sports, patients," Tolosa says. "They have he says with a sigh. I can jog but Im still building this young male mentality and they strength to get back to that point. move on." But even after all hes had to face, he keeps his Lymphomas are common head high and is ready to face the next challenges. among teens. Complex uterine Last year was one of the darkest years of my sarcomas tend to be powerful in life and Im sure it will remain that, David says. It young people, and ovarian cancers was very painful and very hard emotionally to get are often detected very late, which through it. But I dont regret anything about it, and I can be fatal. Brain cancers and wouldnt have changed any of the last 16 months for leukaemia are also prevalent. the world. Ill never take anything for granted again. Dealing with cancer is difcult Before Im done speaking with him that I for most people with the disease, but know the adult quality of his voice comes from all hes faced. Though he went in for treatment in a cancer it can be especially so for young ward for children, he certainly didnt come out a people. child. "It's the existential crisis, Everyone I know who has had cancer and Tolosa says. They think 'I'm too made it through has kept a positive attitude young to be in this position.' It's not throughout, he says. I just never give up and keep part of a plan. It's a blow out of the
going forward.

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blue." Young peoples reactions to the news that they have cancer can vary dramatically from person to person. Some immediately ask, 'What are my chances? What is my treatment going to look like? When can I get out of here?' Tolosa says. "On the other hand, some people want us to speak to their mums for them. They want others to make their decisions. Some of them stand up and want to know everything and want to make their own decisions. They don't want help. They want to be in charge. Others can't do it. They do what they need to get by and shelter themselves from the thought of having cancer." Tenorio-Espinosa felt these effects during and after her battle with cancer. "I was also mentally affected, she says. I changed. I wasn't as happy as I used to be and I was constantly worried about my health. I didn't want to die, which had become my biggest fear. My head was consumed with the negative t h o u g h t s r at h e r t h a n t h e positive. I was getting better but I wasnt thinking about that. Because the mental affects of dealing with the disease are so prevalent at the young persons unit at the Birmingham Cancer Centre, the psychologists go around the ward giving interviews with patients even if they're not meeting to see them. "The idea is that we want to think about their getting used to the idea of a seeing a psychologist, Tolosa says. They need to realise it's not weird.

All of the psychologists are in their late 30s or early 40s, which Tolosa says he hopes makes opening up to them easier than if they were older. Rather than asking a lot of questions and trying to gure out whats going on with the patient psychologically, they open up conversation with the patients and try to form friendships. "Seeing a psychologist is a difcult step for young people, Tolosa says. It's a bit of a double whammy, no matter what age. They just think, 'Okay, I have my body letting me down and it's hitting me hard, now I have to face all of these feelings. Ray Travasso, a musical therapist from Suffolk Musical Therapy, agrees. "Sometimes the longest journey is from meeting the client to arriving in the therapy room. Patients can be left feeling overwhelmed and confused, but faced with the stigma commonly associated with seeing a psychologist. Tolosa says that by the time a patient accepts the offer to see a psychologist, they've often already done a lot of work on their own emotionally. One of Tolosas patients was a young woman who had developed a crippling fear of needles during her cancer treatments. "By the time it became very stressing, she knew she had to work on it, Tolosa says. Finally she accepted help, really wanted it, and in one session they cured her needle phobia." Fa c i n g c a n c e r a s a teenager can be especially difcult because the teen years

are so crucial in terms of development. The developmental psychologist Erik Erikson spoke about adolescents being in a stage of confusion in developing an identity, Tolosa says. They try to integrate different life roles. Peer pressure affects them, and they look for a balance between intimacy and isolation. "It's hard enough to develop these roles for a healthy teenager, Tolosa says, but these roles are thrown badly into disrepair during treatment." It is also important to consider how much happens during the teenage years and into young adulthood. In the upper age range, people go to college and university, and may even begin building families. Cancer can seem to throw the path of a persons life far from the expectation. Dealing with cancer can be especially difcult for people between the ages of 16 and 24. "They see themselves as workers, and suddenly that generativity is taken away, Tolosa says. It can also leave a nancial burden, when instead of being able to work a patient must stay in hospital or recover from treatment at home. patients get older, they might feel the need to be more independent as theyre being forced to depend more upon their families for support. They might be more secretive about what is going on with them in order to feel like less of a burden, Tolosa says.
Dom Dichen onscreen at the Royal Albert Hall, 25 March, 2011 Photo by Amanda Blaze Pillon

TRIALS AND TRIUMPHS May 3, 2011

"They're all so different, Tolosa says. 18-year-olds are massively different from 19-yearolds. Every year is a huge step developmentally." There's also the control problem and the issue of who keeps the information. Teenagers are in a strange space in terms of rights. 16 and 17 year olds have a lot of say about what treatment they get to say, but often it depends on the specic doctors and what importance they put on listening to young people. The family is also an issue in younger cancer patients. As patients get older, they might feel the need to be more independent as theyre being forced to depend more upon their families for support. They might be more secretive about what is going on with them in order to feel like less of a burden, Tolosa says. Not only might young people feel left behind by friends, but parents can come back into the picture in a powerful way. Normally, a person under 22 or 23 with cancer doesn't have a place and moves back in with their parents, Tolosa says. They have to give up jobs and their social worlds. They take a very signicant step back. Its like theyre going back up to ve years. Cancer is always unexpected, but especially so in younger patients. "If a young person has cancer, it's extremely hard, Tolosa says. It's mostly people over 65 with cancer. Even in a difcult situation and you're surrounded by 65 year-olds with cancer, having a completely

different set of problems. Basically, it's society deciding it's rare. Patients can also start to feel like theyve grown beyond their years. It can take a lot of effort to reintegrate after a year or so out of their normal life, Tolosa says. And once theyre there, patients may have less patience with the social aspects of everyday life, such as chitchat. They just want life to get back to normal and they don't want to waste time, Tolosa says. They want to talk about real stuff, have real relationships, because they don't know how long they've got. Normality is their wish," Tolosa says. "They begin to feel more disconnected from peers at school and uni and work. When they're away it becomes much more of a social challenge. Friends and relationships are tested. Family dynamics are prone to change in a family with a young cancer patient. If they were complex before cancer, cancer will typically make them worse. The divorce rates of children with cancer shoot up well above the average. Individuality is also a crucial factor in making a teens ght against cancer unique. " Te e n s a r e i n t h e individualistion stage, Tolosa says. They're becoming independent, and it's a huge challenge to be sent back and to be made to feel so different." " Te e n a g e r s a r e a n interesting group, according to Travasso. Their identity is quite important to them. Music is quite important. The types of music and the bands they listen to, and the clothes they wear, the TV

they watch, music ts in there as a part of identity. For the past 20 years, the inuence of music has had a growing role in the ght against cancer. Travasso uses the musicological approach of musical therapy to help cancer patients one-on-one and in group therapy, while the concerts at the Royal Albert Hall for the TCT use music to bring masses of people together and to raise money at the same time. T h e W h o s Ro g e r Daltrey has been a supporter of the TCT for more than 11 years, and himself had a brush with throat cancer in 2009. It was his decision that all p r o c e e d s f r o m Te e n a g e Cancer Trust shows would go straight to the charity and he has organised the shows and performed yearly since the concerts inception. On the 19th of March he played a warm-up gig in Bournemouth with all proceeds going toward the trust. At the TCT we have a massive budget, says Peaple. Every penny is raised through fundraising and events. The Royal Albert Hall gigs and things like that raise hundreds of thousands of pounds. Since we have all of that money, we try to make it really fun. And because of the musical aspect of these shows, they arent just benecial nancially. There is a range of spontaneous changes that people make to music, Tr ava s s o s ay s. T h ey ' re organic and innate. It's a physical response. It gets the heart beating faster, gives the

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motivation to move. It's both physical and emotional." Neurological studies show that the brain is highly stimulated when a person listens to music. The pathways are s t i mu l a t e d , e ve n i n people who have had strokes or have neurological problems, Travasso says. Music also can move people to tears or to laughter. The brain is stimulated because there is a strong cognitive response. Travasso specialises in the musicological approach of musical therapy that involves getting patients involved with making music hands-on. Rather than just listening to music or pondering what music should be, patients are given instruments and software, often in a group, to create music together. The therapy is engrained in the music, and usually the patients feel better without even realising that theyve been through a form of therapy. "It's not about making people happy, Travasso says. It's about meeting the child and their family and creating the right environment and creating the right soundtrack. Film soundtrack makers would make brilliant music

therapists, because that's what we're trying to do. We're trained to accompany people in their lives. Music gives meaning to what they're doing and it enables them to nd strength." Musical therapy has been around for many years, buts its benets are hard to study objectively because it is difcult to isolate them. People are typically suspicious about it, Travasso says. They tend to think of it as a new-age idea or an outdated hippie concept, not considering whether or not it works. "I think its actually a very practical, pra gmatic for m of therapy, Travasso says. Its just tricky to explain. My understanding is that everyone is musical, with an innate response to music, and as a therapist my job is to see how people respond and see how to engage them best." One key aspect of musical therapy is it doesnt outwardly look like therapy and so teens are more likely to open up to it and experiment with treatment that might help them. "There's no pill, Travasso says. What's the worst that can happen in music therapy? It doesn't involve needles or anything on that level. It just depends on people's own
The Royal Albert Hall is packed for a TCT gig on 25 March Photo by Amanda Blaze Pilllon

personal history of music. Across Europe there has been a huge shift in thinking about music therapy. Psycholog y i s moving out of therapy rooms and into approaches that work on bringing together communities. Instead of bringing the client out of their situation and into a clean, white therapy room, we take therapists out of their rooms and bring them into the community. On top of being therapeutic, the concerts at the Royal Albert Hall form a huge sense of community and raise money to build Teenage Cancer Trust units in NHS hospitals. Not funded by the NHS, the TCT raises all of its money through charities and puts the money to use to build wards specically for teens with cancer. Britain is a world leader in terms of cancer treatment for teens. Because teenagers are at a crucial middle-ground in their lives, their needs vary greatly from those of
Continued on page 12... The younger ones in that group still have very paediatric needs, Peaple says. Im a paediatric nurse. Patients get the balance between nurses who know how to take care of kids and adult nurses.

ground in their lives, their needs vary greatly from those of younger children or

TRIALS AND TRIUMPHS May 3, 2011

A chat with Carolina Tenorio-Espinosa

Image courtesy of Carolina Tenorio-Espinosa

Carolina Tenorio-Espinosa is 18 years old. She is s a musician, playing the cello, electric and acoustic guitars, and bass guitar. She studies classical civilisation, chemistry, physics, and maths in college with the goal of becoming a civil engineer. But just last year, she wasnt sure if shed ever get a chance to go back to school. It began in October 2009 when she was 17 and started having health problems. She found herself suffering acute pain in her pelvic bone. Sometimes the pain was so severe she found herself unable to move. Her health got worse after a school trip to Istanbul. When she returned, she started experiencing high fevers daily. Even after seven weeks, her condition didnt improve. She then went in for blood tests. Doctors concluded that she was simply anaemic, so she and her family accepted the diagnosis and Carolina continued with her life. But over the next year, her health

continued to deteriorate. It wasnt until May 2010 that she was diagnosed correctly. They had performed a biopsy on an enlarged lymph node before the diagnosis, Carolina says, but they had told me that it was either lymphoma or just tuberculosis. Doctors nally conrmed then that she had stage 4 Hodgkins Lymphoma. Following diagnosis, she was in hospital for two months, beginning treatment in June 2010 at the University College London Hospital in its Teenage Cancer Trust unit. She underwent six months of chemotherapy and 16 sessions of radiotherapy. "The treatment was very hard both emotionally and physically, she says. The most painful part was the bone marrow tests and blood tests," Carolina says. "The doctors nd it very hard to nd a vein to use so I usually get prodded a lot." Her rst week of chemotherapy was the hardest to cope with. She already felt incredibly weak from the cancer, and the treatment weakened her further, causing her to contract gastritis. "It felt as if my stomach was on re," she says. "I wouldn't keep anything down, not even water." She had to sleep a lot because she was getting tired so easily. Even the smallest amount of activity would leave her physically exhausted. Even worse, she says, was being away from her friends. "I was away from my friends for four months, which was hard since I was used to seeing them everyday for college." She had to stop going to school and had to repeat a year because she had to miss exams while she was in hospital. And while her treatment was only an hours car ride away from home, it still made it more difcult to spend the time with friends she had been able to before her illness. "My friends were in exams while I was sick so I didn't expect them to visit me. I wanted them to concentrate on school. I guess this made me feel very lonely. I was only with my mum for the most part of my treatment." Rather than the treatment disease, the side-effects of the treatment made the process torturous.

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"The hardest part was losing my hair," she says. This was a side-effect of the chemotherapy. "I had always had long hair and I had always taken so much pride in my hair and it hurt me so much when it fell out. I didn't feel like myself and it was a constant reminder that I was sick." It was also difcult not being sure she was getting better, as the weakening effects of chemotherapy often mask any improvements as the cancer dies. She didnt see the rst health scans until two months after treatment began. She feared treatment wasnt working. Luckily for her, it was. Tenorio-Espinosa considers herself blessed to have been able to receive treatment in a TCT unit. She was treated with others her age, making the journey a lot easier. The units nurses were especially benecial to her. "They are lovely and they help take your mind off the treatment and what you are going through and they really are your friend." She also had a cousin to speak with who had also been through cancer. She was a recovered leukaemia patient and had helped Tenerio-Espinosa throughout her treatment. She knew what I was going through and she supported me a lot. She says her friends were understanding and considerate. They didn't mind not going out as much and having to walk slower along with her, and she says she was very thankful for it. At the same time, she felt guilty that her disease was causing her parents and her friends and family pain. "That was the last thing I wanted to do. It made me feel bad because I didn't want to affect anyone around me. I tried to keep it in and not to bother anyone but that was making me very angry. She asked her social worker if she could talk to a psychotherapist. She learned that keeping her resentment to herself was just making her feel worse, and that getting to talk about it helped her. "As cheesy as it sounds, the love and support of my mother helped me get through it," Tenorio-Espinosa says. "I listened to my favourite music and bands like We The Kings, and that always took my mind off the pain and the treatment. I guess you could say that it kept me 'sane.'" Her treatment ended 30 December, 2010. "I'm cured now. It took seven months of treatment and I feel really relieved and very happy that I can just get on with my life and put this behind me. It's made me a stronger person." Today, Tenorio-Espinosa still visits the nurses that helped her during her stay in the Teenage Cancer Trust units.

"I am currently raising money for the TCT so that they can open other wards around the country so that other young people can be together in a ward, she says. The atmosphere is very different to that of an adult ward and there are more facilities for teens and activities that they can do that will take their minds of their illness and treatment." She has a few of points of advice for any young people diagnosed with cancer. "Talk, she says, Because it really does help. And do things that you love and that'll get your mind off what you are going through to make things easier. And hugs. They always make things just a little better."

Fundraisers show their support for the Teenage Cancer Trust during the Brighton Marathon Photo by Amanda Blaze Pillon

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younger children or adults with cancer. In places where there are no wards specically for teens, people under 16 are often treated with babies and people above 16 are treated alongside elderly patients. The TCTs units are built to specialise in treating young people with cancer so that teens can be treated in an environment suited to their needs alongside others of the same age. They are created especially to keep teens lives as close to possible to what their lives would be if they didnt have to face cancer. TCT units cover cancer in young people from the age of 13 to 24. For logistical reasons and practicality, units tend to cover only a section of this age group. The Manchester unit where Peaple works, for example, covers the 16-24 age group. The younger ones in that group still have very paediatric needs, Peaple says. Im a paediatric nurse. Patients get the balance between nurses who know how to take care of kids and adult nurses. 16-year-old David Millward battled cancer last year and is currently in remission.

I still have down days and whatnot, having my family is good and they do help you, but you can never really express how you feel or understand how you feel unless you're with people of a similar age and going through similar things, David says. If I had the opportunity to be treated in a TCT unit it would have made all the difference. Though the treatment itself is just as good at a normal NHS hospital than at one equipped with a unit specically for teens, it is the social aspect of these wards that make a big difference for patients. I t w o u l d h ave b e e n brilliant just to take my mind off treatment, discuss how family and friends and dealing with it, Millward says. Its so good to have someone who understands. It would have made recovery mentally a lot quicker, and made me more equipped to go back to school. Tenorio-Espinosa says that being treated in a TCT unit was

crucial to her recovery. I was around other people my age, which made it a lot easier to deal with since I knew I wasnt alone. If for whatever reason one of the teenagers ever has to go to an adult ward, they always cant wait to get back, Peaple says. We treat them like young people rather than adults. Small changes can make a big difference. In most adult cancer units, for example, patients have to get up at 7am and go to bed at 10 at night. TCT units typically let patients sleep in and go to bed late because its more appropriate for the age group, Pe a p l e s ay s. T h e d i f f e re n t environment is suited for teenagers. Some units, including the one in Manchester, have a bed and breakfast connected to the units for friends and family to stay with their loved ones if necessary. The at has six bedrooms so parents, girlfriends and boyfriends, or in the case of the older patients,
Roger Daltrey onstage in Bournemouth on 19 March 2011 for a one-off benefit show for the Teenage Cancer Trust
Photo by Amanda Blaze Pillon

stage. He received all of his treatment in at one of the Royal John Fratelli performs a paediatric Albert Hall hospital 24converts for the Teenage Cancer Trust on March 2011
Photo by Amanda Blaze Pillon

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spouses and children, can stay for as long as is necessary. The key reason that young people are treated together is that it makes it a more social atmosphere and makes it closer to a normal environment. The units have playrooms with computers and internet access, and teachers so that patients can keep up with school. "We treat patients up to the age of 24. The young adults, ones my age with families and kids sometimes might even have 3 or 4 year-olds, Peaple says. We keep family together as much as possible." People involved with the Teenage Cancer Trust also do a lot of fundraising individually. On the 17h of April, Peaple and one of his patients, Ross, did a charity skydive to raise money for the TCT. When a patient is admitted to a TCT unit, the nurse that is there essentially becomes their main nurse. Peaple was assigned to taking care of Ross, and during Rosss year of treatment they've built a close relationship. "It's something he said a while ago, that he wants to do this skydive for a fundraiser," Peaple says. "I said, as a joke, that I wanted to skydive. And I'm doing it now!" Together, they raised 10,000 for the charity. " We e s s e n t i a l l y wo rk within the NHS," Peaple says. "Our NHS budget got cut. We raise money because something small actually makes a huge difference. Funds come in from people who raise it by themselves. It's lots of things on a massive scale."

Luke Peaple and teen cancer patient Ross takes to the skies
Photo courtesy of Luke Peaple

Thanks to this difference, the TCT has a lot of money for events and comforts for their stays in hospital. The units are tted with Playstations and widescreen television sets. The teen themselves play a key role in planning out the new units. In the past they've requested everything from vending machines and pool tables to computers equipped with webcams. Now they're regular unit xtures. Every Wednesday, his unit takes the patients to a different activity run by youth support coordinators. "We run to the cinema, go to a pub or to a meal out when they're feeling good," Peaple says. Both the patients and staff within the units a re ex t re m e l y s o c i a l , Peaple says. " I t ' s a ve r y l a i d b a c k atmosphere. We're all health

professionals but we keep the mood light." U n fo r t u n at e l y, i t ' s n o t possible to always maintain a happy atmosphere in the units. There are days when we have bad news or a death, Peaple says. "We spend so much time together in a small environment, so it gets pretty rough. But 90 per cent of the time it's invariably very positive. The way we deal with it is getting on with it. Having a laugh." Death can be a big issue, especially when groups of teen cancer patients become friends, Tolosa says. Some cancers have high mortality rates, and many cancers that are common in children can grow in severity as the patient approaches 20. The death rates in the young people's wards are high, To l o s a s a y s . " T h e r e ' s n o Luke is tted with his parachute protectionof Luke Peaple from death in that Photo courtesy s ens e. It's s till hu m on go u s

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TRIALS AND TRIUMPHS May 3, 2011

says. "We spend so much time together in a small environment, so it gets pretty rough. But 90 per cent of the time it's invariably very positive. The way we deal with it is getting on with it. Having a laugh." Death can be a big issue, especially when groups of teen cancer patients become friends, Tolosa says. Some cancers have high mortality rates, and many cancers that are common in children can grow in severity as the patient approaches 20. The death rates in the young people's wards are high, To l o s a s a y s . " T h e r e ' s n o protection from death in that s e n s e. I t' s s t ill hum ongous compared to what any other young person sees But there's a lot of peer support and it's w o n d e r f u l t o s e e. T h e r e ' s heartache if they get close and they can carry the burden of existential guilt, but they do work through it. According to Tolosa, the response of teens to the possibility of death is very different from that of older people. Older patients might feel ready to die and that t h ey ve l i ve d a f u l l l i ve. Adolescents cant say that. Instead they might feel their lives are being cut off at the beginning. The thought of coming so close to the edge when I was rst admitted without ever getting to say goodbye is just too horrible to think about, David says. So Ive learnt to enjoy every moment I have, and take full advantage of any opportunities in life Im given. It is probably both despite this and because of this that the cancer patients who conquer the disease go on to lead very full lives.

"Their lives are sometimes a little bit more owned, a bit more deliberate, Tolosa says. Some people do what they thought they should do when they were young when they're much older. But in this case it's young people seeing how delicate and precious life is, hopefully without too much stress, but they live deliberately and they do what they should do." "All of it shows the resilience of young people and the strength they have, Tolosa says. They adapt, they nd a way to rebalance life, and they grow emotionally. " This growth and strength proves that cancer doesnt necessarily mean the end. It is a struggle, but one that can be triumphed over and one that creates stronger people out of everyone involved. Thanks to the w o r k o f Te e n a g e Cancer Trust, I didn't lose a year to cancer, Dichen says. People talk about losing things to cancer. I didn't lose anything... And if I had my time over again and I could remove this section from my lifethis experience with cancer- I wouldn't. That is all thanks to Teenage Cancer Trust. "

Contacts
Victoria Evans, Teenage Cancer Trust media relations executive email: victoria.evans@teenagecancertrust.org mobile: 020 7612 0714 Contacted via email 2 Feb. 2011 at 9:45am David Millward, teen cancer patient Contacted via Victoria Evans Interviewed via phone 21 March 2011, 3:30pm to 4:05pm

Luke Peaple, nurse at the Teenage Cancer Trust unit in Manchester, doing skydiving fundraiser email: lukepeaple@gmail.com mobile: 078 0071 7418 Interviewed via phone 21 March 2011, 3pm tp 3:20pm

Carolina Tenorio-Espinosa, teen cancer patient treated at the TCT unit at UCLH email: carolinatenorio@hotmail.co.uk Contacted via email 21 March 2011, 7:50pm

Ray Travasso, music therapist with experience with cancer patients and young teens email:ray@suffolkmusictherapyservices.co.u k mobile: 014 7371 4194 Interviewed via phone 24 March 2011, 10:30am

Iigo Tolosa, psychologist at Birmingham Cancer Centre, has worked with cancer for over 10 years and treats people from the Young Persons unit email:Inigo.Tolosa@uhb.nhs.uk mobile: 079 0513 9685 Interviewed via phone 25 March 2011, 8:30am Comments by Dom Dichen and Roger Daltrey recorded live at the Royal Albert Hall on March 25 at approximately 9pm

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