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The bone & soft tissue cancer charity
Summer 20 16
IT’S OFFICIAL‌ 10 Downing Street chooses Sarcoma UK as their Charity of the Year in tribute to Chris Martin
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Run London
Team Sarcoma smash their fundraising targets as they cover 26.2 miles of the marathon
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100,000 Genomes Ground-breaking research project to include sarcoma
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Sarcoma Story
Inspirational cancer patient Andy Roast never lets his diagnosis define who he is
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 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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here’s so many exciting things going on in the Sarcoma UK world that I don’t even know where to begin! The first extra special announcement is that we have officially been chosen as No 10’s Charity of the Year. This partnership is a legacy to a charity friend and loyal supporter, Chris Martin, who was Principal Private Secretary to the Prime Minister. Together we will increase sarcoma awareness – read more on page 8. I would also like to give a huge round of applause to our inspirational team of runners who ran 26.2 miles of the London Marathon to raise much-needed funds! Each runner had a very emotional story to tell, you can read more on page 4. One member of Team Sarcoma even ran dressed as a golf ball to highlight our ‘On The Ball’ awareness campaign. Think you’ve got what it takes to run it too? You can find out how to apply for next year’s race on page 5. We ran a poll of the general public in 2015 and it informed us that 53% of people have never heard of sarcoma, which makes Sarcoma Awareness Week a very important and necessary date for your diary. From Monday 4 July to Sunday 10 July, we have lots of exciting fundraising and awareness campaigns launching, find out more on page 3. Thank you for your continued support, it really does make a difference and helps us to continue to push boundaries and ensure you get the right information and help when it is needed. Best wishes.
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
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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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• 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 • Ewing’s sarcoma • Chordoma
sarcoma.org.uk
SAW2016
Sarcoma Awareness Week
Monday 4 July–Sunday 10 July 2016
July marks International Sarcoma Awareness Month, and during that period is our very own Sarcoma Awareness Week. So get the date in your diary and get involved to raise awareness and support the sarcoma community.
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poll of the general public we ran in 2015 informed us that 53% of people have not heard of sarcoma and only 26% knew it was a cancer.
We need to amplify sarcoma awareness and we need your help. The ask is simple: • Like and share our film “What is sarcoma?” (released 4 July) • Tell five friends that sarcoma is a cancer of the bone and soft tissue. This can be as simple as sending an email to five people.
By spreading the word, you can help people to receive an early diagnosis and ultimately save lives. The more sarcoma aware we are as a nation, the more we can empower people to get any lump checked out with their GP, and promptly. There are many other ways you can get involved: organise a
fundraiser, share your sarcoma story or visit your GP with our ‘On the Ball’ pack. Read more on our website: sarcoma.org.uk/getinvolved/saw2016 So mark the date in your diaries and keep your eyes peeled on our website, particularly on 4 July when it all kicks off!
Read more about sarcoma facts here: sarcoma.org.uk/sarcoma-uks-key-facts
During Sarcoma Awareness Week, we will launch a very special ‘Sarcoma and You’ online photo exhibition, which will challenge perceptions about cancer and body image. @sarcomaandyou #sarcomaandyou Look out for more photos and stories on 4 July
Photo of Holly Hamer for Sarcoma and You portrait series by Alison Romanczuk sarcoma.org.uk
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Fundraising
The inspirational #teamsarcoma From running dressed as a golf ball to following in family footsteps, our biggest ever Team Sarcoma pushed boundaries and their bodies to transform the landscape for everyone affected by sarcoma.
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hat a marathon! 2016 saw 30 runners support Sarcoma UK in the London Marathon and each had an inspiring story to tell. Thank you to each and every one of you! And thanks too, to everyone who came to our two cheering points, at mile 12 and 25, to give some much-needed encouragement to our team as they conquered those infamous 26.2 miles!
Thanks so much to everyone who ran for Sarcoma UK, #teamsarcoma take a bow!
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Alex Ferguson, 4:11:34 Barry Colley, 5:00:16 Bonnie Holdcroft, 3:27:51 Cameron Kavanagh, 3:38:04 Carl Wood, 5:15:13 Chris Mayne, unknown David McSweeney, 4:26:56 David Shawe, 4:07:06 Deborah Ebbrell, 6:08:46 Dirk Strauss, 4:00:17 Edward Taylor, 4:00:09 James Arrowsmith, 2:59:57 James Read, 6:05:45 Joanne Kerr, 5:44:20 Joel Silverman, 2:59:13 Keith Walmsley, 4:30:05 Kerry Buckland, 7:14:50 Lorna Reeves, 4:21:11 Louise Charlesworth, 4:00:35 Marco Ferri, 4:35:04 Mark Gardiner, 6:10:38 Megan Davies, 4:35:39 Michelle Harris, around 4:45 Nancy Stringer, 4:59:58 Nick Stone, 3:45:37 Nikki Reeves, 4:19:42 Rachael Donnelly, 4:13:16 Ray Hill, unknown Richard Pepper, 3:17:59 Victoria Payne, 4:27:04 Connect
James Read “I ran for my wife who was diagnosed with sarcoma, just two months after we got married.” James donned a specially made giant golf ball costume to raise awareness of our ‘On the Ball’ campaign to highlight sarcoma to GPs across the country. Straight after the race, James rushed to be with his wife in hospital.
Nancy Stringer “I ran my second London Marathon in a bid to continue to raise awareness and money for such a worthy cause.” Nancy ran in support of her sister, Hope, who is going through sarcoma treatment. Nancy was happy to finally run a sub-five-hour marathon and raise more than £11,000. Her support means we can raise more awareness among GPs and the public, helping to ensure all sarcoma patients receive an early diagnosis.
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We applaud you, Nancy. Search the cleverly created hashtag #cancerhasnoHOPE on Instagram
Michelle Harris “I ran London for my friend Katherine Stittle, we both used to apply every year, but never got a place. When we realised she would never be able to run it herself, I told her that one day I would run it for her.” Michelle even dyed her hair pink for the occasion, even though it is her least favourite colour, it was Katherine’s favourite and a colour she would have dyed her own hair had it ever grown back. Michelle set herself various fundraising targets and reaching £2,000 was marked with the change in hue.
sarcoma.org.uk
Fundraising
marathon runners Lorna Reeves “My friend Vicky passed away from sarcoma and I promised I would run the marathon for her.” Lorna was thinking about her friend during the tough parts of her run and felt motivated knowing that she had raised muchneeded funds to support sarcoma research. Lorna smashed her fundraising target by raising more than £4,000. She even wrote the names of people who sponsored her more than £26 on her arm, so they were running with her! Go, Lorna!
Dirk Strauss
Victoria Payne “Clinical trials and sarcoma research gave our family time to create some wonderful memories together. It goes without saying the importance and meaning this charity has for us as a family.” Three sisters, three years, three marathons... Victoria followed in the footsteps of her sisters by completing the London Marathon as part of #teamsarcoma. She ran in memory of her mum, who Victoria said wouldn’t believe she could run a marathon!
“I know the people at Sarcoma UK very well and wanted to support the amazing work they do. Most of my donations actually came from my patients, which I thought was very nice!” Sarcoma surgeon Dirk swapped his scrubs for a running vest and chose to run his third marathon as part of Team Sarcoma.
Richard Pepper Keith Walmsley “I normally run marathons for fun, but this one was for my daughter Kayla, who has rhabdomyosarcoma.”
“You cross that line and you know you have done something special.” Richard got a ‘Good For Age’ marathon spot and dedicated it to Sarcoma UK.
Think you can do it too? Feeling inspired and ready to run for a reason? Applications to join #teamsarcoma for next year’s London Marathon are now open. 020 7250 8271 sarcoma.org.uk/running
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Fundraising
Dance all night and take a dip in the sea! Our creative fundraisers get up to all sorts to raise cash for Sarcoma UK – take a look at this inspirational lot. William’s cross-country marathon
Team Hope runs half marathon
William Balchin completed the Belvoir Challenge, a cross country marathon, in 4 hours and 24 minutes. He raised £600.
Team Hope
Forty-one friends and family of Hope Stringer, who was diagnosed with sarcoma in 2014, formed a team to run Brentwood Half Marathon in March. Team Hope smashed their fundraising target, raising over £15,000. #teamhope #cancerhasnoHOPE
Paul’s London Half Marathon Paul Mills ran the North London Half Marathon, achieving a new personal best and raising £80.
New Year’s Day dip Chris Lawrence braved the cold water and took a New Year’s Day dip in the sea in memory of her nephew. She raised more than £400.
Wendy’s first marathon Wendy Arnold completed the Manchester Marathon, her first one ever, for Sarcoma UK.
Team Fairlawns’ Ram Run Team Fairlawns completed a very muddy Ram Run challenge in support of a team member, raising £1,000. Go, team!
Wendy with her medal
Team Fairlawns
Dancing the night away... Photo by Robert Smythe
Let’s dance!
Members of Belle and Sebastian, Teenage Fanclub and The Wellgreen teamed up to perform as part of a Glasgow All-Star Band at a 12-hour sponsored danceathon. The charity danceathon, held at the Flying Duck in Glasgow in February, required one member of each participating pair to be on the dance floor at all times.
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The dedicated boogying raised an incredible £11,000 for the sarcoma community. A huge thank you to the organisers Daniella and Holly! Connect
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sarcoma.org.uk
In theResearch hot seat
Meet Karen Fisher Karen is based at the Freeman Hospital in Newcastle Upon Tyne. Here she tells us more about her work as a Clinical Nurse Specialist for bone and soft tissue sarcoma services. What is a typical work week like for you?
and work alongside my colleague Liz. Yet I believe there is always room for improvement within our roles.
Each week presents different challenges in between timetabled clinics on Mondays, Wednesdays and Fridays. These consultant-led clinics are attended by 30+ patients at any one time. They are spaces for us to manage patients’ wounds and also provide a support network for them. We try to support every aspect of recovery, we use our experience to observe and manage every patient. Outside of clinics our workflow is more flexible, directed by patient and service need. A patient might call us with concerns at any time. We try, if we can, to alleviate them or offer reassurance and, if need be, bring them to the next available clinic. We believe it is important that patients have direct access to us when possible. We also advocate patients to talk to other patients, if they so wish, to share their experiences.
What do you find to be the most challenging part of your work? It is really difficult to tell someone they have cancer. But I think that when that gets easy, it means you’re in the wrong job.
What do you like most about your job? The patients, the flexibility and working as part of a great team. Trying to make a difference. I feel very fortunate to work at the job I do, sarcoma.org.uk
What do you hope a newly diagnosed sarcoma patient would gain from your service? Support, confidence, reassurance – just knowing that we are around and here for them.
Karen is always on call for her patients
What are the most common questions that patients ask you? And how do you respond? “Why me?”“Where have I got it from?” It is very hard for me to answer these questions, I mean where can you possibly even begin? The most important thing is not to give any false hope, but also not to take any hope away. Hope is so important, but above all I aim to be truthful and honest to all my patients. I tell them that they are here to be treated and that is what we can provide. There’s also the patients who don’t want to know anything, I guess that is their coping mechanism.
You have recently been on a three-month sabbatical, where did you go? Yes, I decided I need a break, I have always worked full-time and never had any extended time off, so I booked a trip to Thailand, Laos, Vietnam and Cambodia. There were many highlights of the trip but for myself the trip to an elephant orphanage and feeding the baby elephants was fab. I travelled by all forms of transport – including an overnight sleeper train – some better than others. The trip opened my mind further, which I think really helps with my work, too. Life is so precious. I am very aware of how the news I often give to people affects their lives – and I don’t mean just telling someone that they have sarcoma and giving them a cancer diagnosis, but some people require extensive limb sparing surgery or even amputation. This can save their lives but have an enormous impact on their quality of life.
How else do you look after yourself? Well, as I am partial to chocolate and have a good appetite, I cycle to work daily and I love walking.
How do you protect yourself “It is difficult emotionally, especially to tell someone separating they have cancer. But your work from your when that gets easy, personal life?
it means you’re in the wrong job.”
I used to work solo, but now I have a part-time colleague and we help each other out and talk to each other, which has been amazing. Other than that: friends who I don’t talk hospital with, walking on the beach and a nice cold glass of lager – perfect.
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Announcement
10 Downing Street ch as their Charity of th T
he staff at the Prime Minister’s Office, 10 Downing Street, have chosen Sarcoma UK as their Charity of the Year, in memory of Chris Martin, Principal Private Secretary to the Prime Minister, who passed away from sarcoma in November 2015. Chris ran the Virgin London Marathon in 2015 for Sarcoma UK, and was a passionate and loyal supporter.
Speaking of the partnership David Cameron said: “It is an honour to support Sarcoma UK, a cancer charity very close to my heart. Having lost Chris to sarcoma, we have seen first-hand the devastating effects of this disease. No 10 is proud to raise funds and awareness of sarcoma, helping Sarcoma UK to save lives and ultimately find a cure.”
The Prime Minister also paid tribute to Chris in the House of Commons, saying he was “someone between a father and a brother to all of us”, and “one of the most loyal, hard-working, dedicated public servants I have ever come across”. Watch a film of the moving speech here: sarcoma.org.uk/No10
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Chris Martin running the 2015 London Marathon
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Chris’ co-workers started fundraising by placing Sarcoma UK collection boxes around 10 Downing Street.
In April, ‘Team 10’ completed a 12mile assault course, Tough Mudder London West, to officially launch the partnership. They showed strong mental and physical strength to navigate the muddy obstacles, 10,000 volts of electricity, and a mindnumbing ice bath. So far they have raised £8,000 towards their annual goal of £15,000. Chris’ family, friends and Sarcoma UK staff went along to cheer on ‘Team 10’. Lindsey Bennister, Chief Executive, Sarcoma UK said: “Chris made a huge sarcoma.org.uk
Announcement
hooses Sarcoma UK he Year
Chris Martin’s legacy – Sarcoma UK and 10 Downing Street team up to raise awareness
Team 10 took on Tough Mudder to mark the start of the partnership
10 Downing Street organised a Great British Bake Off for Sarcoma UK, judged by chef Paul Hollywood and 2015 winner Nadiya Hussain. The Prime Minister even tweeted about it!
impact on the charity’s team and built up personal relationships with the wider sarcoma community. Chris ran the London Marathon only last year. It was poignant to see ‘Team 10’ show the same grit and determination in taking on Tough Mudder, a year later. We are very privileged to have their support and we look forward to working closely with the House.” 10 Downing Street have a calendar of activities planned to support Sarcoma UK throughout the partnership to fulfil Chris’ legacy. sarcoma.org.uk
Speaking of the partnership David Cameron said: “It is an honour to support Sarcoma UK, a cancer charity very close to my heart.” Stay updated in Connect, or visit our website sarcoma.org.uk/No10 Connect
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Research
The 100,000 Genome Project Mapping the sarcoma genome – this ground-breaking initiative, launched by the Prime Minister, may lead to more effective treatments and new medical research.
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his ground-breaking initiative was launched by the Prime Minister, David Cameron, in 2012 with the aim of sequencing 100,000 genomes of patients and their families affected by rare diseases, and also patients with cancer. The hope is that it will lead to the establishment of a new genomic medicine service for the NHS – transforming the way people are cared for. It may help with diagnosis, and longer term may lead to new and more effective treatments and new medical research.
Professor Adrienne Flanagan
Recently, sarcoma has been added into the programme, with 500 genomes to be collected by 2017. Sarcoma UK’s Research Advisory Committee member, Professor Adrienne Flanagan (UCL Cancer Institute – Group Leader of Genetics and Cell Biology of Sarcoma, and Consultant Pathologist and Clinical Lead Royal National Orthopaedic Hospital) is the lead researcher for the sarcoma element of the project. Here, we give an insight into the project and what this means for sarcoma.
Why do genetic research?
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Most of us have heard of genetics and how diseases can be inherited through genes passed down through our families. We know that genes work in groups and their activity is influenced by a huge variety of environmental and other factors. We also now know that the DNA between your genes is also very important. Every “Genomics can healthy cell in your body predict how has a complete set of genes. One set of well a patient will all these genes (plus respond to a treatment the DNA between the genes) is called a or find one that will genome. Genomics is work best for the study of the whole genome, what it’s made them.” up of and how it works. Connect
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What is the background to the 100,000 Genome Project? It was launched in 2012 to sequence 100,000 whole genomes by 2017. It’s currently the largest national sequencing project of its kind in the world.
How will this project transform research? By linking an individual’s genomic data with their medical record it can help us to understand disease and to tease apart the complex relationship
between our genes, what happens to us in our lives and illness. Researchers will study how best to use genomics in healthcare and how best to interpret the data to help patients. The causes, diagnosis and treatment of disease will be investigated.
What sarcoma subtypes are being included? As sarcoma has an initial allocation of 500 genomes, researchers have had to be very selective about which types of sarcoma they look at. With 3,800 sarcoma cases diagnosed every sarcoma.org.uk
Research
year and over 130 subtypes, they need to analyse 100 samples of each type to have significant information to analyse and they should be able to glean a lot of information about the disease. The project will look into the sarcoma subtypes of: Myxofibrosarcoma Leiomyosarcoma Synovial sarcoma
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Some exceptionally rare sarcomas have been chosen, which have only
10 cases a year in the UK, such as alveolar soft part sarcoma and spindle cell rhabdomyosarcoma. This will help researchers to understand the disease at the genomic level and build a platform for more research to take place.
What can genomics do for patients? Genomics can predict how well a patient will respond to a treatment or find one that will work best for them. It can also be used to test how well a cancer might respond
to radiotherapy, which may mean fewer radiotherapy sessions.
What can patients do to get involved in the 100,000 Genome Project? As with all research, patients can ask anyone involved in their healthcare about taking part in the 100,000 Genome Project. With your help, researchers can find answers sooner. For more insight into our current research projects visit sarcoma.org.uk/research
Searching for a cure Sarcoma UK funds high quality research to understand more about sarcoma, find new treatments and ultimately identify a cure for these cancers. Since 2009, we have awarded over £1 million in scientific and medical grants to better understand these rare cancers. This year, thanks to your donations, we will invest £500,000 into research, our largest annual call to date.
sarcoma.org.uk
We will be funding research that covers: Quality of Life – research into factors which affect care and rehabilitation Clinical – research into patient focussed treatment and care Basic – research that tries to find out how something works. It usually happens in a laboratory and involves carrying out experiments.
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Support & information
Counselling and cancer Feeling that dreaded “scanxiety”? Macmillan Therapeutic Counsellor, Carol Hughes, offers some words of encouragement and tells us about the benefits of seeking counselling.
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f you or someone close to you has received a diagnosis of cancer, then you will know what a difficult experience that is. We all react differently, and our reactions depend on many different things. Because sarcoma is so rare, it may have taken a long time for it to be diagnosed, which can be upsetting in itself. Your reactions will also be affected by your age, sex, personality, culture, any previous experiences you may have had with cancer, the support and resources you have available to help you and, of course, what else is going on in your life. Cancer may also bring money worries.
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And whether you are the patient or someone close to the patient, the psychological impact of cancer is very similar. Research has shown that rates of anxiety and depression, both in the short and longer term, are very similar in both groups.
Counsellor Carol Hughes
Sometimes, especially in the early days, it is difficult to discuss how you are feeling. You may be in shock and feeling numb or perhaps all kinds of thoughts and feelings are whirling round: “Why me?”, anger, anxiety, hopes and fears. It is common to attempt to protect those closest to you by pretending to be more
positive than you may actually feel, but this strategy can leave individuals feeling isolated with their feelings. Your cancer nurse specialist and doctors will be able to answer many of your questions about your disease and your treatment. They will also be able to listen to how you are feeling. They may reassure you that your reactions are normal – and sometimes that is enough. But if you, or they, feel that your level of distress is such that you would find it helpful to speak with a counsellor, then a referral for counselling should be made. Your counsellor will provide a non-judgemental space in which to explore your feelings, safe in the knowledge that what you say won’t be shared even with your clinicians, unless you ask for it to be. You will have the time and help to clarify, even rehearse, what it is you would like to say to others.
In your counselling sessions you will be encouraged to speak openly and without any sense that you need to be positive or brave. You will also be encouraged to identify fearful thoughts for what they are. A thought is not a fact, but it can certainly feel like it. Our minds are hardwired to look for threats and it is normal to run disaster movies in your mind. But this natural inclination can cause great distress. Understanding how the mind and body “Research work and how to calm them is an important has shown that skill. Learning practising mindfulness techniques like relaxation, meditation produces mindfulness reductions in anxiety, meditation and guided depression and pain and imagery will offers improvements help you respond to physical and in a sense of psychological wellbeing.” difficulties more skillfully. Connect
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sarcoma.org.uk
Support & information
Mindfulness meditation has been in the press a lot recently and you may wonder what it is all about. Essentially it is about learning a set of practices that help you to be with your experience as it unfolds in an open, warm and non-judgmental way. Research has shown that practising mindfulness meditation produces reductions in anxiety, depression and pain and offers “You will be improvements encouraged to identify in a sense of wellbeing. fearful thoughts for
what they are. A thought can
These attitudes is not a fact, but it and skills are certainly feel helpful not only during the like it.” period of diagnosis and treatment, but afterwards too, regardless of whether your treatment was successful or not. Living with not knowing what the future holds is part of the human condition, but cancer survivors often suffer greatly from the uncertainty of their future. “Scanxiety” may emerge, looming hospital followup appointments can be cause for dread and any unusual sensation can assume sinister overtones. You may need help to learn to how to balance looking after your health with widening out your life again. You may need support as you grieve the losses caused by the cancer. You may also find, perhaps to your surprise, that the profound experience of facing your mortality brings gains as well as losses as you re-evaluate the meaning of your life and what matters to you. All these are themes you could fruitfully explore with your counsellor, but how the sessions are used will always be your choice.
If you think you would benefit from the services of a cancer counsellor, talk to your clinical nurse specialist. Your GP can also refer you to local counselling services or you can call our support line. sarcoma.org.uk
Sarcoma
UK
Support Line
0808 801 0401 supportline@sarcoma.org.uk Sarcoma is a rare cancer and many patients and families find it difficult to find information. We can change that. Sarcoma UK is here for every person affected by sarcoma. Talk to us or email for information and support.
Our support line is independent and confidential
We believe no question is a silly question
We lend a listening ear
We can point you in the right direction
The service is available to anyone affected by sarcoma throughout the UK, and our team has up-to-date information about sarcoma for patients and families in the devolved nations of Scotland, Wales and Northern Ireland. “Thanks for the reply, today has been full of stress and anxiety about what comes next so your reply puts structure around the big scary unknown ahead. Thank you.”
“The support and advice you’ve given me in just a few days has made a huge difference.”
Opening hours: Monday 10am - 2pm Tuesday Midday - 4pm Wednesday 10am - 2pm Thursday Midday - 4pm Friday 10am - 2pm If you call out of hours or the line is busy, leave a message. We’ll try to get back to you within 48 hours.
sarcoma.org.uk/supportline Connect
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Sarcoma stories
‘Don’t let diagnosis define you’ A year and a half ago Andy Roast, 27, was laying in a hospital bed, now he’s training for a London to Paris cycle ride. It’s all about setting yourself goals.
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10% chance this can happen – and was slotted back into place. It was as painful as it sounds! I then had to wait motionless in bed for two weeks. I watched patients come and go, and I got so low that I didn’t want to see friends or family. I didn’t want to know that anything existed outside of the ward I was in. I was finally discharged six weeks, two more dislocations and another operation later on 23 October.
y first experience of cancer was back when I was just 12 years old. I had a precancerous lump removed from my femur, then I had a metal plate put in place to support me. Since then I’ve always felt some sort of pain – especially when it’s cold. I just put that down to the metal, or maybe it was all in my head, who knows? But it was from around 18 months before my sarcoma diagnosis, when I was 24, that it started to hurt all the time, like a dull, constant ache. At the time, I was training for a half marathon, so I just put the pain down to that. I went to see my GP in August 2013, told him I was in pain and had had a lump removed 12 years previously, and asked if they should check it out. After a few weeks, I was referred to an orthopaedic surgeon for an MRI scan, this was November 2013. A week after that, surgeons still weren’t sure what it was, but I knew it was cancer. My diagnosis in April 2014 met me with a sense of relief. I’m not sure how I was supposed to feel, you read stories about people being devastated and their lives turning upside-down, but honestly, I was just glad to know what was wrong with me. My sarcoma type was grade 2 chondrosarcoma in my pelvis and femur.
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I didn’t receive treatment until September 2014 because the surgeons needed to observe what happened to my tumour over the course of those months. They weren’t sure if it would grow, and if it didn’t grow at all, my treatment would be different. During this time, I carried on with life with a vague sense of normality. I went to work every day, living with the constant pain in my leg and just icing it when it got really bad. A follow-up Connect
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Andy Roast
appointment early in 2014 showed that the tumour hadn’t grown, which was a relief.
I threw myself back into life and wanted to see as many friends as I could. I started working with a physio and could see improvements every week, walking that little bit further each time. I continued to set myself goals, for example moving to using only one crutch, then just a walking stick some of the time. Now “You read I rarely use my stories about people stick, only being devastated and when I am really tired or their lives turning have been to upside-down, but honestly, the pub!
I was just glad to know
I try to keep By my second what was wrong active, I ride my observation in July, my with me.” bike to my job at tumour had grown. This Great Ormond Street meant I needed a hemipelvic Hospital where I work as an and proximal femoral replacement online editor. I love my job, and it operation (I describe this to my was such a positive influence in my friends as a hip replacement on life during my recovery, as I gradually steroids). I think I was a little started working from home before I naïve going into hospital, went back properly. Working meant I didn’t quite realise the I wasn’t just defined as a cancer seriousness of it, plus I had patient, and it distracted me a lot. just been on holiday to I never wanted to let my diagnosis Portugal to forget about define me. A few months ago, I even everything, so I was still on went hiking in Snowdonia. It was a high from that! such an adrenaline rush; I would never have believed this was possible when After the operation, I was I was lying in a hospital bed. I see only woozy on morphine for a week. positivity in my future, and my next I could just hear the scary bleep big goal is to complete a London to bleep of machines as I was on a high Paris cycle ride! I just want to keep on dependency ward. Ten days later, doing and ticking off my goals! my new joint dislocated – there’s a sarcoma.org.uk
Sarcoma stories
31 May 2014
18 August 2014
When Andy found out he needed surgery, he decided to document what his legs looked before, during and after. This is his journey…
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25 September 2014
@Sarcoma_UK Surgery, 19 September 2014
Pre-surgery holiday, September 2014
info@sarcoma.org.uk
uk.sarcoma 49-51 East Road, London N1 6AH Editorial and production team Editorial: Design and layout:
Board of Trustees Dr Jane Barrett Karen Delin (Chair) Prof Rob Grimer Leigh Hibberdine Ian Hughes Recovery, 30 October 2014
Alice Snape Vicki Smith Glyn Wilmshurst INQ Design Ltd 020 7737 5775
Sharon Reid Helen Stradling Dr Jeff White Sam Whittam Glyn Wilmshurst
Patron Richard Whitehead MBE Medical/Scientific Advisor Prof Ian Judson
March 2016
December 2015
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You can read more on Andy’s blog at: ihavechondrosarcoma.blogspot.co.uk sarcoma.org.uk
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Connect
• Sarcoma UK • Summer 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.
Please make a first payment of £
Address:
on
and thereafter a similar payment *monthly/quarterly/annually Postcode
Account name:
*please delete as appropriate
until *further notice /the following date
Sort code:
Payee: Sarcoma UK Sort code: 40-52-40 Account no: 00019763 Bank: CAF Bank Ltd Branch: 25 Kings Hill Avenue, West Malling, Kent ME19 4JQ
Account no:
Signed
Name:
Form B
I wish to set up a regular Standing Order in favour of Sarcoma UK.
Bank name
Home address:
Title
First name
Surname
Date
I have set up a regular donation to Sarcoma UK by Standing Order of £
per *month/quarter/year
*please delete as appropriate
Telephone:
Please treat all donations I make to Sarcoma UK, until I notify you otherwise, as Gift Aid donations. I confirm I have paid or will pay an amount of Income tax and/or Capital Gains Tax for each tax year (6 April to 5 April) that is at least equal to the amount of tax that all the charities or Community Amateurs Sports Clubs (CASCs) that I donate to will reclaim on my gifts for that tax year. I understand that other taxes such as VAT and Council Tax do not qualify. I understand the charity will claim 25p of tax on every £1 that I give or have given in the last four tax years.
Email:
Signed
Postcode:
Date
Code: SUC16
Form A
To the Manager: