Connect info@sarcoma.org.uk sarcoma.org.uk
The bone & soft tissue cancer charity
Aut um n 20 16
Focus on childhood sarcoma
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Our patron inspires in Rio!
An exclusive interview with Richard Whitehead
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“This is a temporary curve ball� Journalist Dean is learning to count his blessings
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Proton Beam Therapy
A first look inside a groundbreaking centre in Manchester
Sarcoma UK’s key facts
Sarcoma UK is the only charity in the UK focusing on all types of sarcoma That’s our purpose; that’s why we are here. Our mission is to increase knowledge and awareness of sarcoma through ground-breaking programmes that inspire involvement and transform the landscape for everyone affected by sarcoma. We are here to provide credible, high quality information about sarcoma to everyone affected by sarcoma. We are here to lend support and answer questions. We are here to improve survival rates by promoting early diagnosis and ensuring all diagnosed patients are aware of their treatment pathway. We are here to educate GPs and the public on the signs and symptoms of sarcoma so patients are diagnosed earlier. We are here to ensure that patients are not alone during their diagnosis and treatment. By working with all members of the sarcoma community – patients, carers, supporters, health professionals and researchers – we share information and work collaboratively. We are here to get sarcoma on the political agenda. We can empower patients through our Sarcoma Voices programme, to ask questions about this rare cancer and get their voices heard. We are here to guide and inspire supporters to maximise their fundraising and show them exactly how we spend their money. Ultimately we are here to find a cure for sarcoma. The research we fund adds to the knowledge base in sarcoma, provides evidence to support changes to practice, and supports potential breakthroughs to bring improvements to patients with this cancer.
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eptember marked Childhood Cancer Awareness Month, and in honour of this, we have featured two very special young girls who both have rhabdomyosarcoma. Turn to page 10 to read Kayla and Ellie’s stories, told in their own words, from diagnosis and treatment, to dealing with missing school. Cancer isn’t the only thing they have in common, both girls are an inspiration to anyone dealing with adversity, young and old. Here at Sarcoma UK, we were also glued to our TVs watching the Paralympics in Rio, where our patron Richard Whitehead stormed to victory in the men’s 200m final! We knew he could do it. Richard has been a loyal supporter over the years and it warmed our hearts to see him wearing a Sarcoma UK wristband as he crossed the finish line. Always raising awareness and helping others, we chat to the man himself on page 6 in an exclusive interview about winning gold and silver in Rio and what sport means to him. Journalist Dean Eastmond is definitely facing his cancer diagnosis on his own terms. Using his status as a journalist, Dean has written comment pieces for the Guardian about the side effects of cancer that people don’t talk about: for example losing masculinity. On page 7, he tells us the story of his own diagnosis and how he won’t let it get him down. Grab yourself a cuppa and get comfy, as there’s so much to inspire you in this issue.
Lindsey Bennister Chief Executive
What is sarcoma?
Sarcomas are rare cancers that develop in the muscle, bone, nerves, cartilage, tendons, blood vessels and the fatty and fibrous tissues. Sarcomas fall into three main types: 1. Soft tissue sarcoma 2. Bone sarcoma 3. Gastrointestinal stromal tumours (GIST) There are around 100 different sub-types of sarcoma About 3,800 new cases of sarcoma are diagnosed each year in the UK which makes up approximately 1% of all cancer diagnoses: – 3,330 people are diagnosed with a soft tissue sarcoma (including GIST) – 500 people are diagnosed with a bone sarcoma 10 people every day are diagnosed with sarcoma in the UK Sarcomas make up 15% of all childhood cancers (0–14 years) Sarcomas make up 11% of all cancer diagnoses in teenagers and young people (15–24 years) In general, patients with a bone or soft tissue diagnosis tend to be younger than the majority of cancer patients In Scotland, just 180 new cases of sarcoma are diagnosed each year
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@sarcoma_uk Connect
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• In Northern Ireland, 100 new cases of sarcoma are diagnosed each year
The most common sarcoma sub-types are:
Soft tissue sarcomas • Leiomyosarcoma • Fibroblastic sarcoma • Liposarcoma • Gastrointestinal stromal tumour (GIST) • Kaposi’s sarcoma (KS) • Angiosarcoma • Malignant peripheral nerve sheath tumour (MPNST) • Synovial sarcoma • Rhabdomyosarcoma Bone sarcomas • Chondrosarcoma • Osteosarcoma Statistics from the West Midlands • Ewing’s sarcoma Knowledge & Intelligence Team • Chordoma (Public Health England)
@sarcoma_uk
Sarcoma UK sarcoma.org.uk
SAW 2016
Let’s keep amplifying sarcoma awareness Sarcoma Awareness Week 2016 was our most successful yet! And that’s thanks to you. Our “What is sarcoma?” short film was viewed an incredible 10,000 times. We also released a powerful online portrait series, Sarcoma and You, which was shot by sarcoma patient and photographer Alison Romanczuk.
182% increase in users of our
website
3,000 visited
Sarcoma
and You
online
79% of media coverage highlighted that
“sarcoma is cancer” The Sarcoma and You portrait series includes photos and stories of patients and their families, who have been personally affected by sarcoma. Alison is a liposarcoma patient herself, she was empathetic to every subject in the series and brought the consequences of sarcoma to life: “I think the project has been powerful in many ways, because I’m not just a photographer. I am a patient, there is total trust and understanding.” View Sarcoma and You or watch our film “What is sarcoma?” on our website: sarcoma.org.uk/get-involved/SAW2016 sarcoma.org.uk
Share your own photos and let us know your sarcoma stories by using the hashtags #sarcomaaware #sarcomaandyou and follow us on Instagram @sarcoma_uk Connect
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Fundraising
From Harry Potter to climbing mountains… As always our community of incredible fundraisers have been busy raising awareness and funds for Sarcoma UK. Thanks, each and every one of you! You’re all marvellous. Prudential Ride London–Surrey 100 Twenty-three brave riders took to the roads of London and Surrey to complete the course made famous in the 2012 Olympics. Together they’ve raised over £21,000, which will go to helping everyone affected by sarcoma. A year ago, Jill was diagnosed with liposarcoma. Recovering from major surgery, she didn’t dream of taking on such a monumental challenge. Roll forward to 31 July 2016, and Jill is the proud owner of a RideLondon medal having cycled 100 miles. “It was a wonderful way to celebrate,” says Jill, who raised over £1,300. Apply for a place on the 2017 team: sarcoma.org.uk/get-involved/ take-challenge/cycling
Ultimate Charity Auction
Jill Fillerman with her medal and (above) Dave, James and Wendy give a thumbs-up
Sarcoma UK is extremely fortunate to be one of four beneficiaries of the 2016 Ultimate Charity Auction, which runs from 22 October to 6 November. The auction, established by legendary fundraiser Gina Long MBE, is expected to raise many thousands of pounds through the sale of money-can’t-buy items and experiences. Last year, the numerous auction lots included
an invitation to the FIFA Ballon d’Or awards, a week on a luxury catamaran in the British Virgin Islands, and a VIP guest experience with the Red Arrows. See the full list of incredible prizes at ultimatecharityauction.com
Indietracks for Carey Lander
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Indietracks Festival raised funds for Sarcoma UK in memory of Carey Lander, Camera Obscura keyboardist. The band played at Indietracks twice, and are much-loved by both the organising team and audience. Festivalgoers raised a total of £1,146 through a lucky dip, with prizes generously donated by bands and volunteers.
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21st birthday skydive How do you celebrate your 21st birthday? By taking on a skydive, of course! Natasha jumped from 10,000 feet to raise funds for the sarcoma community and face her fear of heights. She raised her sponsorship by organising events at work, and even a speed dating night! justgiving.com/fundraising/ Natasha-Perkins3 sarcoma.org.uk
Fundraising
Coast to Coast Some people celebrate their 60th birthday with a party, but not Barb Kelsey. This summer, she marked the start of her seventh decade by pulling on her boots and taking on a gruelling 216-mile hike from coast to coast to raise money for Sarcoma UK.
Laura’s fundraising journey Laura Piearce and her family and friends took on The Wolf Run to remember her dad, Will. The pack of 10 ‘Will’s Wolves’ completed 10 gruelling kilometres of woods, obstacles, lakes and fields.
Barb was joined by her friends Gill, Justin and Michele for the trek from Robin Hood’s Bay in the east to St Bees in the west, and more than 40 others went along for part of the way. Progress was hampered by stormy conditions, collapsed tents and an injured knee, but after two weeks she finally dipped her boots in the Irish Sea having raised over £6,000.
Support also came from a contrasting event: Valentine’s dance school raised £1,300 with their memorial show. The show featured dances chosen by Will’s family and performed by dancers aged two to 22, including his two granddaughters. Will’s three-yearold grandson closed the show with a beautifully sung rendition of You Are My Sunshine. All proceeds from the sell-out show went to Sarcoma UK, with additional money raised through the sale of refreshments and handmade cupcakes, as well as a raffle which included some fantastic prizes.
Barb fundraises for Sarcoma UK as part of Team ULegend in memory of her son-in-law, Andrew Wheddon. At the end of her walk, she said, “Andrew would be so proud that one of his wishes came true: to raise the most awareness and hopefully money for Sarcoma UK.”
Richard Bevan does Tour Ride Northampton
The team will be hosting and participating in a range of fundraising events throughout the year to reach their target of £10,000. justgiving.com/Will-Hutchins
The golf ball runs again! After already completing London Marathon 2016, James Read dusted off his golf ball outfit for another tour of London – this time for the Vitality British 10K. Along with friends and family, he completed the 10,000 metre race, raising funds and sarcoma awareness in support of his wife, Sarah. sarcoma.org.uk
Barb Kelsey (left)
Richard Bevan
“I promised to myself that I would raise funds to help ongoing research into sarcoma,” says Richard who took on the Tour Ride Northampton, in memory of Luis Ghaut. Despite difficult hill climbs, he took inspiration from Luis and finished the challenge in style. justgiving.com/fundraising/ Richard-Bevan4SarcomaUK
Team Thekla bikes Susan MacKenzie led Team Thekla as they cycled the 13 hours between Loch Lomond and Edinburgh. Susan’s sister was also nominated to start the Edinburgh Half Marathon, and completed the race with a team from work. Together the sisters have raised over £3,700 in memory of their mother, Mary Thomson.
#3PeakforSam James Read
Lucy, our Director of Fundraising, was honoured to meet sarcoma patient, Sam, and his dad to collect a wonderful donation. Together with
his friends and family, including a 26-strong 3Peaks team who took on harsh conditions hiking Britain’s tallest mountains, they have raised over £14,000 for Sarcoma UK. justgiving.com/Davies-Sam
We love Harry Potter Sarcoma UK’s founder, Roger Wilson CBE, visited Burway Books in Shropshire to collect a cheque for £160, raised through sales of Harry Potter and the Cursed Child.
London Marathon 2017 Whether you’re a seasoned ultra runner or a jogging newbie, the London Marathon is one of the most incredible, must-do challenges in the world. Take your chance to run as a part of #TeamSarcoma in the 2017 race and apply for a place today. Applications close on 31 October. Find out more information and apply online today: sarcoma.org.uk/get-involved/ take-challenge/running/ virgin-money-london-marathon
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In the hot seat
Our patron inspires in Rio! You can’t help but feel inspired after watching the superhuman feats at the Paralympics in Rio. And we’re so proud of our patron, and Paralympian, Richard Whitehead MBE, after watching him win gold and silver with style…
Have you always loved sport, how you did you get into running? I was born a congenital above the knee double amputee. My parents saw sport as a means of integrating me into mainstream society and showing that being born without legs didn’t diminish me as a human being. Growing up I was involved in lots of different sports including swimming, ice sledge hockey and gymnastics. I did gymnastic classes to try and strengthen my muscles. I quickly began to learn how I could overcome the disadvantages that come with using prosthetics legs. Before turning to running, I found that I excelled in the swimming pool. Even without lower legs, I found that I was extremely strong and soon became the best swimmer in my class at school.
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I took to running slightly later on in life and found that I had a particular talent for it. I am an extremely determined person, so my mindset was particularly suited to long-distance running. I ran my first marathon, aged 28, in five hours and 19 mins [I am 40 now], and I still class this as one of my proudest achievements. Since then I have gone on to run it in a time of two hours and 42 minutes, a world record for double leg amputees. Connect
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to do in Rio, but I try not to focus too much on winning. I try to be in the moment, and think about how I feel when I am running. It was a magical moment I will never forget. I couldn’t celebrate though, as I had the 100 metres to concentrate on next, and that is a much harder race for me to win as it is hard for a double leg amputee to build up speed in the first 50 metres. Richard flying the Are you happy with your How did you feel when you first British flag and silver medal? won gold at the London Olympics raising sarcoma Of course, I put my all into that race in 2012? awareness by and I couldn’t have done any more. Competing at the London 2012 wearing a charity If you replay the video you can see Games was a dream come true. wristband as he raced! the effort in my face. That was never I originally wanted to compete the really my race to win, I am much in marathon event, however there better across the 200 metre distance. was no category for leg amputees. I am not sure what the future holds I was also refused permission for me. My coaches would love to compete against “I hope my do the next Paralympics upper body amputees. achievements can inspire meintofour years in Tokyo, but I Instead of giving up, I decided to turn everyone affected by sarcoma, have my family I want to focusing on now. my efforts to the I want to share my medals with start Watch this space! Never sprinting events on the track. I won patients and the wider sarcoma say never. gold in the 200m community. I feel they show What does sport mean T42 Athletics event and even what can be done by anyone, to you? It’s about inspiring the smashed the world regardless of whether you people around you. I want record with a time people to see the hard work I of 24.38 seconds. I am have a disability.” put in and the performance, not unbelievably proud of this just the gold medal. I like to get moment, nothing beats the out there, volunteer and be a part feeling of winning gold on home soil of the grassroots of sport – that’s – I remember the cheer and I could what is important. I also hope my just feel the support from the crowds. achievements will help and inspire While I was running the race, I also those affected by sarcoma. thought of my friend Simon, who died from sarcoma, I imagined him sitting on my shoulder saying: “Come Richard’s personal attachment on Richard!” to Sarcoma UK stems from his close friend and mentor Simon How did you feel about winning gold Mellows, who sadly passed away again in Rio for the 200 metres? from chondrosarcoma. You It was an incredible feeling to win can follow Richard’s training on the title again! It is what I set out Twitter @Marathonchamp sarcoma.org.uk
Photo: Getty Images
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s this issue went to print, Richard claimed his second medal of the Paralympic games in the men’s T42 100 metre final. It was a nail-biting race as Richard was behind for most of it, but stormed home to claim joint silver with Denmark’s Daniel Wagner. Here we chat to Richard about his love affair with sport, his reflections on London 2012 and how he felt about recreating that T42 200 metre magic in Rio…
Personal story Research
“This is a temporary curve ball” Meet 20-year-old Dean Eastmond, an inspirational journalist who is coming to terms with diagnosis and learning to count his blessings.
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n the 21st May 2016, my life as I knew it, changed forever. An overwhelming swamp of “no, surely this can’t actually be happening to me” and teary phone calls to my parents launched me onto a road of tests, scans and anxieties before 13th June. On 13th June, I was diagnosed with Ewing’s sarcoma, a rare and aggressive soft tissue cancer growing off the ninth rib on the right hand side of my chest. “Turning back time a little bit, my January self was a typical student type. Usually covered in glitter on nights out or revelling in student bars, my housemates and I decided to host a house party to christen making it through the first term. The morning after the party, I felt excruciating pain in my right hand side. I took a couple of paracetamol and shrugged it off as a drunken bump that must have happened the night before. The pain lasted and lingered, coming back in waves that, again, I just shrugged off. But when I noticed a prominent protrusion of a rib in May, I knew something was clearly not right.
Photo: Adam Packer
“This brings us back to 21 May, when I ordered myself a taxi and took myself to A&E on my own, not thinking too much of anything and expecting to be told I just have a broken rib. Wrong. I was told it was a tumour, about 10cm x 8cm, there and then by an uncomfortable looking nurse practitioner. He told me what it could be and what I could become, with my eyes unable to leave the bottom of the glass of water he offered me. The gap between discovery and diagnosis has since become an uncomfortable blur. “Within the space of a day, ‘Ewing’s sarcoma’ had gone from a pair of words I had never heard of to a diagnosis catapulted into my sarcoma.org.uk
being treated on the Young Person’s Unit at Birmingham’s Queen Elizabeth Hospital, with a team of phenomenal oncologists, nurses and charity workers. Being attached to a machine, having tubes inside of you and seemingly insuperable side effects turns you into someone you sometimes struggle to recognise, but grapes, copious daytime TV (which sometimes seems just as painful as the side effects) and a strong care network, both socially and medically make you realise this is all worth it. When I wake up, I get excited for the day I can be in back to back meetings all day again and stress over trivial matters again. It sounds as lame as it probably is, but a new found thirst for life injects an appreciation for everything.
vocabulary, Dean Eastmond repeating itself over and over in my head. Being told you have cancer is the cliché you “Counting blessings, not flaws, is imagine it to be: awkward waiting something I find myself doing in rooms, upset parents, gory details of the early hours on the ward that surgery and uncomfortable looking transcends into every hour in the oncologists. I found myself trawling three week cycles. Being a journalist blogs, googling things I really allows me to mainly keep doing shouldn’t have, talking to my medic what I love from the comfort of friends. Anything to know more, my bed. Having a family network, whether I wanted to read “Within the an amazing boyfriend and to have what lurked on the latter side of these space of a day, ‘Ewing’s access to treatment in a country where I don’t need to worry ominous links or sarcoma’ had gone from a about funding it puts things not, I needed to know. pair of words I had never heard into perspective.
of to a diagnosis catapulted “Cancer has robbed me of “Cut to myself, but not forever. Being now and into my vocabulary, down doesn’t mean I’m out. I’m about to repeating itself over This is a temporary curve ball start my third that, because of the amount of round of 14 of and over in incredible research and charity work chemotherapy. my head.” this country does, I will overcome.” A combination of four drugs (VIDE) are pumped into my chest through Find out more at a port-a-cath over the duration of sarcoma.org.uk/sarcoma-types/ 81 hours every three weeks. I’m soft-tissue-ewings-sarcoma Connect
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Research symposium
What causes sarcoma? It’s the question we are working towards finding an answer for. It’s what our supporters and patients want to know. So we held a research symposium with the best sarcoma scientific researchers in the world…
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n Thursday 8 September 2016, 71 scientific minds from all over the world gathered at the Royal Society of Chemistry to discuss what causes sarcoma. Hosted by Sarcoma UK, it was our first ever sarcoma basic science symposium and in attendance were researchers and scientists, including Principal Investigators, and Post-Doc and PhD students. The day was led by Professor Adrienne Flanagan from the University College London Cancer Institute and featured a series of talks including one from the Director of Genomic Cancer Medicine, Professor David Thomas, who flew in from Australia especially for the event. It was incredible to see young researchers and experienced scientists all come together to discuss the current sarcoma landscape and kickstart finding answers. The day ended with an interactive and creative workshop led by Dr Andrea Siodmok, Head of Policy Lab at The Cabinet Office. Andrea had sarcoma herself when she was 18 and she discovered Sarcoma UK through our partnership with 10 Downing Street. As a result of this session, the key research priorities for the next 10 years will be defined.”
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“We are delighted to host the first basic science sarcoma research meeting for all sarcoma researchers to come together. I hope this is a lightning rod moment in working towards finding the causes of sarcoma. I am excited to see what the researchers do next and how Sarcoma UK can support this. We also hope The Sayako Grace Robinson Studentships will grow the research leaders of the future in sarcoma.” Sarah McDonald, Sarcoma UK’s Director of Research, Information & Support Services Connect
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sarcoma.org.uk
Research symposium
As part of the event there was also a scientific research poster competition. Our winner was Dr Julia Hmeljak from Memorial Sloan Kettering Cancer Centre, who travelled from the USA especially to attend.
At the conference, we announced new funding for a PhD studentship, in memory of Sayako Grace Robinson (pictured). Our aim is to attract the brightest young scientists to sarcoma and become the research leaders of the future. Find out more at sarcoma.org.uk/research/apply-funding sarcoma.org.uk
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Symposium photos: Ian Randall
Sayako Grace Robinson Studentship
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Personal story
“In our own words...” To mark September’s Childhood Cancer Awareness Month, we met up with two brave and positive young girls who both have rhabdomyosarcoma. Here they tell their stories, in their own words, from diagnosis to dealing with loneliness.
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ne day I was sitting on my bed, I was wearing my pyjamas and I noticed a lump on my left upper leg. I went downstairs straightaway to alert my mum, she said she would take me to the doctor. I had to go to the hospital, where they gave me an ultrasound. The doctor examined the screen and said that I would need an MRI scan. “Two days later we went to our local hospital to have an MRI. I was told it was just a vascular malformation and we had a choice to leave it or cut it out. I was a bit reluctant at first but soon I agreed to have it removed. “Three months later, after I had been on a holiday to Italy, they operated. It was very painful and took me a few days to walk again. The hospital called us about three days later and told us to come in. I remember my parents being very worried because you don’t get called in unless there’s a problem. It was then I was told they made a mistake and I had rhabdomyosarcoma. My mother was in tears but I didn’t understand. One of the nurses took me into a room and explained that I had cancer. We went straight to Great Ormond Street Hospital and met my consultant. I was booked in for scan after scan (PET, MRI and CT). It was a scary time.
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, d l o s r a e Kayla, 9 y e r i h s p m Ha
Photo and cover photo: Warren Boyle
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“I had to have an operation to insert a Hickman line directly into my veins, this took me a few days to get used to the stiffness in my neck. This was where they inserted the chemotherapy and took blood. I then started nine rounds of chemotherapy. I couldn’t eat anything, all smells put me off, and I felt sick all the time. The nurses had to clean my line weekly and change my dressing, it was sore but after a
sarcoma.org.uk
Personal story
few months it got easier. A few weeks later my hair began to fall out. I went to the Little Princess Trust and they fitted me with a wig. I chose one as close to my normal hair as possible, I feel much happier wearing it and I never go out without it on.
“Over the course of my treatment, I have had radiotherapy, three platelet transfusions and one blood transfusion, too. It was months of horribleness, but I am pleased to say, I am now in remission. I do have scans every three months, though, to check everything is OK and that the cancer hasn’t come back. My brother now wants to be a scientist so he can find a cure. We fight a lot, like brothers and sisters do, so for once it’s nice for us to be in agreement about something. I think he even got a little jealous, as I got so much attention during my treatment. My dad is amazing too. He ran 26.2 miles in the London Marathon this year to raise money for Sarcoma UK. We raised over £3,500. I love cooking, so I baked cupcakes and sold them for a pound to put towards his fundraising target. We had a party afterwards to celebrate and it was great, I got to drink loads of raspberry juice – my fave!”. For more information on rhabdomyosarcoma visit: sarcoma.org.uk/sarcoma-types/ rhabdomyosarcoma sarcoma.org.uk
Ellie, 15 years o ld, Northamptons h ire
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found a lump in my bottom, but I didn’t think anything of it. I thought it was just a muscle or something and I didn’t tell anyone. My leg started to hurt too, but I run all the time, so I just thought that was why. But then I did a 5k Colour Run, I collapsed and my mum took me to the doctor, who asked if I had noticed anything else wrong, but I was too nervous to tell him and I kept quiet about my other symptoms. It
Photo: Heather Shuker
“I am a tomboy at heart, and I hate wearing dresses, I only “My brother wear a dress if now wants to be I am playing a part. I am an a scientist so actress, you see. he can find I have starred in adverts, modelling a cure.” campaigns for major fashion houses and also a British soap. But when I am not doing that, or at school, I like to wear plain, comfy clothes, my three favourite T-shirts are plain white, red and black. I like to wear clothes I can have adventures in. As I love playing so much, the hardest bit about treatment was not being able to go to school, I couldn’t see my friends, jump around or go swimming.
was only when I got in the car with my mum afterwards that I thought I should tell her the truth. “I went back to see my GP who told me it was just haemorrhoids, so I was prescribed antibiotics, and when the lump didn’t disappear, they just prescribed me more. Eventually the lump got so painful I couldn’t sit down, so I went to the hospital for tests. Connect
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Personal story
“My diagnosis floored me, it was totally unexpected – I was only 14 years old, cancer was one of those things that happened to other people. I was healthy one minute, then the next I “I am making the was aware of this ‘thing’ best out of my cancer hidden inside me. I wasn’t afraid, however by making videos and I was worried about raising awareness. what the future would hold for me. “What’s the point of going The doctors said that through such an intense I had stage 4 alveolar rhabdomyosarcoma. experience and not doing It sounded bad, but something with it?” doctors reassured me that chemotherapy could get rid of my tumour. “The experience has been hard on my family too, seeing someone so close to you suffer is heartbreaking. My mum helped me through all the medical stuff and, because of this, we grew an unbreakable bond. My twin sister has been affected greatly by me getting cancer, she was very depressed for a while, which was extremely hard for me as I felt to blame. “I went through six months of intensive chemotherapy, five and a half weeks of radiotherapy and I am currently on a 12-month maintenance chemotherapy plan. Intensive chemotherapy was very hard. Rhabdomyosarcoma is very aggressive, so it had a harsh chemotherapy plan: the nausea was horrendous, and after chemotherapy I just felt like every bit of my energy was taken away from my body, I would stay in bed for days - it was a very lonely time.
eather Sh Photos: H
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“As for radiotherapy, I hated that too! Radiotherapy was very intense because it was every day, five days a week. Now, I am on maintenance chemotherapy, which is amazing
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in comparison! It consists of IV chemo once a week for three weeks, with one week off, and oral chemotherapy every day. I have so much more energy and I am able to go to school, which feels incredible as I have already had to repeat a year due to my cancer. “It is really hard to watch all your classmates go to school and also socialise, while you’re stuck at home in bed, but one of the things that has pulled me through is writing my blog and social media. Writing my thoughts into blog posts helped me to process how I felt. Instagram also gives me the sense that I’m not alone, and I am able to talk to other kids just like me! I also do something called vlogging, I set up a camera in my bedroom and film myself speaking and then edit and upload the video to YouTube. My aim is to give advice and help to other cancer patients, plus give knowledge to people who don’t know about cancer. It definitely helps me deal with my sarcoma better as I know that I am making the best out of my cancer, what’s the point of going through such an intense experience and not doing something with it? “I have met two girls called Mary and Sophia, they also have sarcoma and vlog about it. They are based in the USA, but we help each other think of video ideas and recently we actually did a collaboration video about sarcoma, so we are working together to spread awareness. Making videos gives me purpose and I love that it might inspire others, too. “I want to focus on positive things. I will continue on with my blog and vlogs and, of course, I want to work really hard at school and be able to go to sixth form and university. I have a bright future ahead of me. I loved watching The Apprentice and I think I could definitely be an entrepreneur in the making.” Follow Ellie on Instagram @teamellie_blog, read her blog at teengirllivingwithcancer. blogspot.co.uk and catch up with her videos on YouTube by subscribing to Team Ellie. sarcoma.org.uk
Personal story
What’s in my hospital bag? We asked vlogger Ellie what she takes into hospital with her to make chemo that little bit more comfortable.
Facial wipes You don’t want to get spots!
Blanket and a pillow It’s nice to have things that smell of home
Lip balm Mouthwash and Difflam spray To prevent mouth sores and help relieve any pain in my throat
Eye mask So I can sleep in the day
Comfy clothes Chemotherapy isn't glamorous so you don't have to be!
Mints/fruit boiled sweets I barely drink or eat on chemo, so to make my mouth taste better I suck on sweets Tablet case So I can keep all my pills organised
Dressing gown I love my dressing gown so much, and it's really cosy to sleep in at night, and also easy to put on over your IV tubes
Word search books/phone/iPad/ colouring books/reading book To keep me occupied in the hospital as it gets very boring sometimes! Olbas oil To relieve blocked nose
Moisturiser Chemotherapy makes my skin dry, so always keep moisturised
Vapo rub It helps me go to sleep as it calms me and makes me breathe well
Lavender oil To relax me
Ear phones So I can watch videos or listen to music Fluffy socks I love them because they are super soft and make me feel comfy
Good luck charm My elephant charm that my great-grandfather took with him when he was in the war. He got shot down from his plane three times and survived, so I think this charm is very lucky
Cuddle bunny I got him at the start of my treatment
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Support & information
Proton Beam Therapy is coming to Manchester We were delighted to be invited to The Christie in Manchester to get a tour of the construction site for a brand new proton beam therapy centre, due to treat its first patients in 2018.
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miles and spend months away from their family and friends.
he build for a ground-breaking first in the UK is well underway: Proton Beam Therapy is coming to Manchester in 2018. On Friday 5 August 2016, Sarcoma UK’s head of information and support Claire Kelleher and Connect editor Alice Snape travelled up to Manchester to get a tour of the centre from the staff involved: Project Manager Fiona Lewis, Lead Radiographer Hazel Pennington and Consultant Clinical Oncologist Dr Catherine Coyle. High energy proton treatment is currently only available in the USA and certain countries in Europe. The effect this has on patients from the UK was pictured on boards surrounding the new centre, powerfully illustrating what it will mean to those cancer patients who currently have to travel thousands of
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As incredible as this project is, the key message we got from speaking to Hazel and Catherine was that this therapy is not for everyone, and in fact current radiotherapy and chemotherapy treatments may still be what certain patients need. It is completely different for every individual cancer patient. We found out more about how the build is going and what it means for sarcoma patients...
Boards around the new build highlight patients’ stories about travelling abroad for treatment.
Sarcoma UK has a factsheet about Proton Beam Therapy for sarcoma patients, which can be downloaded from our website: sarcoma.org. uk/support-information/ patient-guides
sarcoma.org.uk
Support & information
Registered as a charity in England and Wales (1139869) and in Scotland (SC044260). A company limited by guarantee in England and Wales (7487432)
sarcoma.org.uk 020 7250 8271 info@sarcoma.org.uk @Sarcoma_UK uk.sarcoma 49-51 East Road, London N1 6AH Editorial and production team “Radiotherapy can play an important role in the management of some patients with specific types of sarcoma, but not all patients. Technical advances have allowed significant improvements in radiotherapy delivery and planning which have improved the quality of the treatment and potentially reduced side effects. For a few patients, however, there is room for improvement and advanced technologies are required. One of these is a type of radiotherapy known as proton therapy. Currently NHS England supports patients who need to have proton therapy but only by them travelling to Europe or USA. At the Christie in Manchester we are delighted to have been chosen by NHS England to provide the first UK-based high energy proton centre. We are already working hard to prepare for our proton opening in 2018, to ensure that the small group of sarcoma patients who might benefit from protons get the same world-class treatment that we currently offer to our radiotherapy patients.” Dr Catherine Coyle, Consultant Clinical Oncologist “The build for the first NHS England high energy proton centre is well under way, which you can see from the picture [left], and we are on target to treat the first patient in 2018. The build will house three gantries, or proton treatment rooms, as well as integrated CT and MRI imaging facilities to enable the planning of the proton beam therapy. There will also be colocated anaesthesia induction and recovery areas, for both the gantries and the imaging facilities, as there will be a large group of paediatric patients who will require anaesthesia. I am the lead radiographer for the project and will be the operational lead once the services starts. I am very privileged to be involved in such an exciting project which is bringing a brand new service to the UK. My role involves looking at the build design, workforce, education and training, patient information, as well as providing input into the patient pathway design to ensure a patient centred service that is world class.” Hazel Pennington, Lead Radiographer, Proton Therapy Project sarcoma.org.uk
Editorial: Design and layout:
Alice Snape Vicki Smith Glyn Wilmshurst INQ Design Ltd 020 7737 5775
Board of Trustees Karen Delin (Chair) Dr Jane Barrett Andy Eckles Prof Rob Grimer Leigh Hibberdine Ian Hughes
Prof Ian Judson Sharon Reid Dr Jeff White Sam Whittam Glyn Wilmshurst
Patron Richard Whitehead MBE Founder Roger Wilson CBE If you no longer wish to receive Connect, contact head office at info@sarcoma.org.uk or phone 020 7250 8271 Disclaimer: Please note that personal views and opinions expressed are not necessarily endorsed by Sarcoma UK. The material in this publication is provided for personal, noncommercial, educational and informational purposes only and does not constitute a recommendation or endorsement with respect to any company, medical professional or product. Sarcoma UK makes no representations and specifically disclaims all warranties, expressed, implied or statutory, regarding the accuracy, timeliness, completeness, merchantability or fitness for any particular purpose of any material contained in this or attached document/s. The information contained in Connect is not intended to replace advice or medical care from your doctor. No part of this publication may be reproduced in any way without prior permission from Sarcoma UK.
Connect
• Sarcoma UK • Aut um n 20 16
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Donate monthly sarcoma.org.uk/donate
More and more Sarcoma UK supporters are making a monthly donation. Will you join them? Bigger research projects produce far-reaching results. Thanks to supporters like you, we are funding more research than ever before. By choosing to make a monthly donation, you can help us plan ahead and commit to more long-term research projects.
Will you donate £10 a month to help us fund more sarcoma research?
Or make a donation By Text: Text SAUK00 £10 to 70070 Minimum donations £1 and maximum donation is £10. Gift Aid can also be added. By cheque: Make payable to Sarcoma UK and post to Sarcoma UK, 49-51 East Road, London, N1 6AH By Bank: Lloyds TSB Account name: Sarcoma UK Sort Code: 30-97-62 Account No: 02884274 Reference: Your name
sarcoma.org.uk/donate Return the form below Thank you!
I’d like to help researchers find the answers sooner. To register, please fill out both forms. Form A should be returned directly to your bank (or you may be able to do this online), and Form B to us at: Sarcoma UK, 49-51 East Road, London, N1 6AH. Form B notifies us that you have set up a standing order gift and allows us, if applicable, to claim Gift Aid from your donations.
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