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Tracey on track with her Team BRIT ambitions Our commitment to supporting sarcoma science talent Chemotherapy – a sarcoma patient's perspective
Summer 2020
Welcome to the summer edition of Connect Richard Davidson Chief Executive
Early this year Sarcoma UK welcomed a new Director of Policy and Research, Dr Sorrel Bickley. Sorrel joins the charity from the MS Society where she spent four years as the Head of Biomedical Research. Before joining the charity sector, Sorrel completed her PhD in Developmental Biology, studying how genes and biological processes shape the way the body forms.
So much has happened since the last issue of Connect as all of our lives have been affected by the outbreak of COVID-19. Many of this summer's fundraising events have been cancelled or postponed. While we're still hopeful these events will go ahead later, this isn't good news for everyone who has been training hard. It isn't good news for charities like Sarcoma UK either, which will see a drop in the donations and income from these events. It's really bad news for the people who depend on our support. Our Support Line staff have been working tirelessly to help those in need, with the number of the team doubled since early March. The demand for our services is at an all-time high and the cancellation of fundraising events is putting an unprecedented strain on our income. Read (page nine) about the team’s work and how we’ve collaborated with other charities to offer consistent advice and keep our beneficiaries at the heart of what we do.
A big thank you to everyone who supported us by taking the 2.6 challenge. We were so impressed by your creativity and spirit from clocking up the miles and steps to counting wriggly worms! As always, Sarcoma UK is committed to supporting sarcoma research. As you might expect, many clinical researchers will be spending time on patient care and our priority is to support researchers to do the best work they can in the current environment. Our current plan is to continue providing opportunities for researchers to apply for funding as usual this year. Learn more on page six. Finally, why not make the most of the summer with a Great British Picnic anytime until October – in your own space? It’s a simple and fun way to get creative as well as raising funds and awareness for Sarcoma UK. I’m already planning my picnic – please join me and get inspired here sarcoma.org.uk/gbp. Help us keep supporting everyone affected by sarcoma – it has never been more important
The Virgin London Marathon is one of our very biggest events. While the decision to postpone the race was the right one, we completely understand the disappointment for everyone who has trained so hard for this challenge, and so many others. But our incredible runners are keeping motivated (see page 18) and we will be with them every step of the way.
Inside this edition: Tracey on track with her Team BRIT ambitions A determined grandmother has set her sights on joining a unique racing team, despite having elected to have a leg amputated.
Chemotherapy – A patient’s perspective Andrew Sutton, 39, shares a few practical tips he wishes he had been given when starting chemotherapy after his diagnosis with osteosarcoma.
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“I think you could describe my interest as unravelling how all the complexity of the human body arises from such a simple beginning,” says Sorrel. “But as much as I enjoyed doing lab based work, it was too far away from making a difference to people. I wanted to do something that would help change people’s lives for the better.” Sorrel then spent six years working at the MS Society, leading on research communication and overseeing some major research programmes, including a Tissue Bank and an International Progressive MS Alliance. In late 2019 she was approached about an opportunity with Sarcoma UK, a cause to which she has a very personal connection. “My mum, Fran, died from sarcoma eight years ago, and for a long time I had kept the door on sarcoma shut. She became ill and passed away very quickly, within about a month of first noticing something was wrong. We were told it was a rare form of cancer, which we later found out was spindle cell sarcoma.” Spindle cell sarcoma is a rare type of soft tissue sarcoma that starts in the bone. At the moment, not much is known about this sarcoma sub-type.
A tribute to trustee Ian Hughes We were sorry to hear of the death of Ian Hughes, one of our talented trustees, in January.
Your greener Connect
Our commitment to supporting sarcoma science talent Sarcoma UK funding for PhD students includes two research projects ultimately hoping to make a difference to sarcoma patients.
sarcoma.org.uk
Dr Sorrel Bickley joins Sarcoma UK
Sarcoma UK is committed to looking after the environment. This publication is printed using paper sourced from well-managed sustainable forests and non-toxic ink. All resources are distributed with a minimum amount of shipping and recyclable packaging where possible. Please work with us, care for our environment and recycle this publication responsibly.
Ian stepped down from the board of trustees last November after eight incredible years helping to guide and grow Sarcoma UK. Having experienced sarcoma himself, he was truly committed, determined and inspired to make a difference for everyone affected by sarcoma. Ian was diagnosed with leiomyosarcoma in 2010 and again with retroperitoneal leiomyosarcoma in 2017. During this time, he not only excelled as commercial and managing directors for some of the largest food companies in the UK, but joined the charity in its early years, contributing his knowledge and expertise to help develop and encourage the team though a crucial period of dynamic change and development.
“Losing my mum like that was a hard experience to go through. It’s disheartening to see that there have been so few breakthroughs in sarcoma research or significant progress with treatments in the past few years, especially when we’ve seen this in other cancers.” “But there are glimmers on the horizon. I want to bring more ambition and collaboration to our research and policy work, focusing on understanding what matters most to people affected by sarcoma and working with others to achieve a greater impact.” Since starting at Sarcoma UK she’s already seeing sarcoma through a different lens. “The supporters who have hope for the future and are so committed to improving things have really helped me to open up about sarcoma. I’m excited to get stuck in and be a part of this community.”
Ian and Marie sadly lost their son Oscar in 2014 to meduloblastoma, a type of brain cancer. It was after experiencing an outpouring love and support from friends and family that Ian also began to fundraise for Sarcoma UK. Though sponsored bikes rides and team challenges, he channelled his experience following Oscar’s death into raising awareness and funds for everyone affected by sarcoma, in the hope that other families could eventually be spared losing a loved one to cancer. Ian was a kind, generous and thoughtful man who had been ill for some months and in a hospice for the last few weeks. Despite surely knowing that his condition was worsening, he still made time for Sarcoma UK, actively and cheerfully contributing to our work, including Connect. It was very much our honour and our pleasure to work with Ian over the last eight years. We wish his wife Marie, his children and his family the very best.
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“I’ve always loved driving and when I gave it a go, that was it. I wanted to do everything I could to be involved. I even offered to make the tea!”
a process called ‘hip disarticulation’ which resulted in the amputation of the leg from the hip down. For Tracey, this decision came as a relief – a move that she described as ‘the best thing I did in 2010.’ Her feelings were shared by her family – two children and two grandchildren – who Tracey says took it all in their stride. “To the grandchildren, I am Nanny One Leg; in fact, I was Nanny Three Legs at one point when I expected to lose a limb and I didn’t,” she laughs. “They have grown up with me like this and maybe knowing me with a disability has made them all kinder people – they all give and give and give.” Team BRIT photography: Scruffy Bear Pictures
Tracey is truly on track Tracey Pahel is on a mission – and nothing is going to stop her achieving her need for speed. The determined grandmother from Coventry has set her sights on joining Team BRIT which aims to be the first all-disabled team to race in the Le Mans 24 hour event. And if this seems like a big goal, she is someone who has already experienced cancer three times and elected to have a leg amputated. Through its racing academy, Team BRIT supports drivers with a range of physical and psychological challenges in accessing motorsport. Team BRIT is just one of a long list of ambitions for Tracey, demonstrating how far she has come since her first diagnosis of sarcoma in 2004. At the time, Tracey was living in the US with her second husband who was in the United States Air Force. She was happy, fit and walking up to ten miles a day. When she found a lump in the back of her left thigh, it was diagnosed as an aggressive form of sarcoma which grew very quickly. “I had never even heard of sarcoma when I was diagnosed,” she recalls. Tracey was very poorly and could only have four of the six lots of chemotherapy plus radiotherapy after the surgery. After this, she was getting her life back on track. Just two months before reaching the milestone of being cancer-free for three years, Tracey was cleaning her 4 Connect Summer 2020
house in Florida when she found another lump. This time she elected to go to the renowned cancer centre MD Andersen in Texas. Again the treatment was gruelling but Tracey got through it. Two years later, she found another lump. This time she expected to lose her leg, but this wasn’t necessary; however, it did leave her with a drop foot. “In reality, there wasn’t much of my leg left, and part of my right leg had been used for surgery on the left.”
“After 17 years of marriage I felt my life was over and that I had to start again – back to Devon where I had been born and brought up.” Tracey experienced a tough couple of years which saw the end of her marriage and ultimately a return to the UK. “After 17 years of marriage I felt my life was over and that I had to start again – back to Devon where I had been born and brought up.” When she found yet another lump, she was treated at the Royal Devon and Exeter Hospital in Exeter. At this point Tracey was adamant that she wanted her leg amputated after everything she had gone through. Once the medical team knew that she was capable of making such a decision, the surgery went ahead;
Remarkably, she was the first patient to have the US developed ‘bikini socket’ prosthesis fitted at the Exeter unit. While it is up to 200 per cent more efficient, Tracey says it takes more effort and energy to use. “As a patient, you don’t always feel that you can say I want more, or I want the best. I found the new limb by doing more research. You have to be your own advocate.” Tracey has a prosthetic limb but up until about two years ago she hardly used it due to how cumbersome and uncomfortable it is. Now she walks with crutches but has trouble with the use of her hands so spends most of her time in a wheelchair. Tracey is currently investigating the latest developments in the US in the hope that a new prosthetic limb is an option. Tracey’s resilience and positive attitude has stood her in good stead, right from her move back to the UK and her medical experiences through different career paths. Three years ago, she moved to Coventry to be nearer her daughter and has embraced a new life in the Midlands. “I bought a house at auction which was in a state, but I’m doing it up myself as a lifetime project!” The year 2019 was viewed as Tracey’s ‘year to start again,’ kicking off with a new-found interest in motor racing which has quickly become a real passion. Team BRIT was looking for female drivers and Tracey was intrigued by the idea when invited with three other women to Silverstone to learn more about what it takes to be a racing driver. “I’ve always loved driving and when I gave it a go, that was it. I wanted to do everything I could to be involved. I even offered to make the tea!” Team BRIT Founder & Team Principal Dave Player recognised Tracey’s enthusiasm and gave her the opportunity of a role at the Academy. “He’s an amazing man in a
wheelchair himself. Everyone on the team has things to overcome, which aren’t always visible, and everyone strives to be better. Everyone helps everyone else.“ Dave is hugely supportive of Tracey’s ambitions. “Tracey has been so passionate about driving with us and supporting our Academy and she embodies everything we are about. “We’re very grateful for the support she’s giving the Academy and we’re looking forward to supporting her in her entry into racing. “We’re making huge progress but we are yet to have a woman on the team and we want to change that.” Tracey is determined to rise to the racing challenge and make the team. “I’ve found something I like – I want to be part of the team and I want my licence. People get into a car with all sorts of disabilities and they come out with a huge smile on their faces. Sometimes we spin off the track, but we get back on.“ The innovative hand-control technology pioneered by Team BRIT for manual vehicles has only helped Tracey to feel like a ‘real’ driver again. “I’ve met some amazing people along the way. It’s a bug, a passion for me – something I didn’t know I would enjoy doing or be a part of.” Now she is continually up for new challenges – a Lake District weekend with 33 other amputees she had never met, doing things she has never previously tried. She also runs a coffee morning in Nuneaton which helps people to empower each other. Tracey has learnt to scuba dive, despite being terrified of having her head in the water, and signed up for a photo shoot to show a different side to her and her prosthetic. She’s also done a high ropes course despite a fear of heights. All this is as well as being an active member in the Rotary e-club of District 1070 where she is the treasurer and supports activities, including helping a school in Mexico, and fundraising for a 600 mile charity bike ride involving her children and grandchildren. As for the future, Tracey would like a prosthetic limb again and is currently focusing on her many new interests. “I don’t see myself as an amputee. You need to live life while you can – don’t put things off. I still have down days but my advice is to have that day, and know it is one day. Tomorrow you get up and carry on.” Find out more about Team BRIT at teambrit.co.uk Connect Summer 2020 5
Supporting sarcoma science talent
“Our approach to PhD research is constantly evolving as we listen to the scientific and patient communities.” Phd Students: Brad Hocking and Molly McNae
Sarcoma UK believes in the research community of the future. That’s why we are so committed to funding PhD students, which we see as our support for the beginning of the rest of their career in sarcoma. In 2018/2019, we awarded two PhDs and part-contributed to two more as part of our overall research investment of £655,663 – up 35% on the previous year. Our current support for PhD students includes two projects tackling different areas of research but hoping to ultimately make a difference to sarcoma patients and expand our knowledge of this rare cancer. At London’s Imperial College, Dr David Mann (Principal Investigator) is leading the way in developing new drugs for sarcoma by a novel approach which uses chemical tools to ask biological questions. The PhD project builds on preliminary work by this team which identified fragments of drugs which bind to a protein called Mcl1 and permanently modify it. Mcl1 is used by many sarcomas to prevent cancer cell death so blocking its function would offer a novel route to therapy. The methodology has involved screening a library of around 1,200 compounds, using Mcl1 as ‘bait’ and identifying a number of hits. The PhD funding – £119,873 for 42 months – was awarded to Brad Hocking who studied natural sciences at Cambridge and is now applying his chemical knowledge to biology. Brad’s first experiments are to purify the Mcl1 protein so that he can determine the atomic structure of the drug fragments bound to the protein. This will allow him to develop more effective compounds that block Mcl1 function and can form the basis of novel drugs for the treatment of sarcoma. The Sarcoma UK funding has proved critical both in progressing this exciting work and enabling career development for one researcher. “Without funding, we wouldn’t be able to develop the compound,” says Dr Mann. “And for a PhD, a funding source is essential; it is impossible to start a research career without doing a PhD. Around 99 per cent of scientists need PhD funding otherwise you lose the bottom of the career pyramid.“ Genes and cell signaling pathways that are dormant in normal cells are activated in Ewing’s sarcoma cells, causing them to grow and divide out of control. A critical regulator of these changes is the MYC-C protein, sometimes called a ‘supercontroller’ because 6 Connect Summer 2020
it promotes cell growth and survival in many types of cancer. If this protein could be switched off, this may stop the cellular changes that drive progression and relapse. At present there are no clinically useful drugs that directly switch off MYC-C. Another PhD studentship funded by Sarcoma UK will test whether the protein Aurora-A regulates the activity of MYC-C and explore the potential of inhibitors to kill Ewing’s sarcoma cells. The aim is to develop targeted treatments to improve patient outcomes.
“Grant rounds are now open for longer so people have more time to work on their applications and establish collaborations.” Molly McNae will undertake this laboratory research. She has a first class BSc in Biological Sciences from the University of Leeds and was the recipient of the prestigious Faculty of Biological Sciences Excellence Scholarship. Professor Sue Burchill, supervisor of the project and director of the Children’s Cancer Research Group of the University of Leeds where this research will take place, says “Professor Richard Bayliss (co-supervisor) and I are grateful to Sarcoma UK for funding this PhD studentship. The innovative science behind the project may help to fast-track much needed targeted drugs into clinical trials for patients with Ewing’s sarcoma and will provide excellent training for Molly, an outstanding young scientist who is dedicated to a translational career using her knowledge for the benefit of patients.” Our approach to PhD research is constantly evolving as we listen to the scientific and patient communities. For instance, we’re now funding more PHDs in our lab-based research rounds. This move is in response to the high number of good quality PhD applications that we just weren’t able to financially support before. We’ve also adapted our grant round schedules to better mirror university timelines, so that we have a higher potential of getting strong applications for the PhD projects. Grant rounds are now open for longer so people have more time to work on their applications and establish collaborations – the result of direct feedback from previous applicants. You can learn more about our research at sarcoma.org.uk/research-programme
Award honours memory of tireless sarcoma advocate The year 2020 kicked off with a research first as we announced the winners of the inaugural Tricia Moate award. The worthy winners are Lucy Dean, Senior Physiotherapist and Sarcoma Lead at the Royal Marsden NHS Foundation Trust, and Charlotte HarveyWright, Advanced Practice Radiographer in Sarcoma Oncology at Cambridge University Hospitals NHS Foundation Trust. We received a large number of applications for this award. While it was difficult to choose the overall winners, it was very encouraging to see the amount of excellent work being done all over the UK. The winners were sponsored to attend the British Sarcoma Group 2020 conference in Glasgow, a visit to another study service in the UK, a study day and support to produce and present a poster at the National Sarcoma Forum in 2021. Tricia Moate worked tirelessly as a nurse and as a patient advocate for sarcoma before she died in December 2018. She trained as a nurse in the 1970s, specialising in palliative care nursing, and combined her experience as a patient with her professional knowledge to become an advocate for the sarcoma community. Sarcoma UK hopes that this award will help support nurses and health professionals involved in sarcoma care to improve their knowledge, network with peers within sarcoma services and ultimately put their learning into improving sarcoma patient care. “I am delighted to have won the Tricia Moate award,” says Charlotte Harvey-Wright. “The sponsorship will be extremely valuable. I have established some aspects of my role but further development is needed to increase the scope of practice. As well as the welcome contribution towards the costs of engaging with ongoing development and learning opportunities, I look forward to being able to give back by presenting the poster.”
£2.5 million into sarcoma research ‘will pave the way for better treatments’ A milestone investment in sarcoma research is expected to deepen the scientific understanding of sarcoma and help bring muchneeded new treatments closer for patients. The funding injection is part of the Cancer Research UK Accelerator Award programme which provides around £27.4 million towards a range of international research projects. These initiatives will focus on developing tools and resources to improve scientists' understanding of cancer, including rare and hard to treat cancers like sarcoma. The network of teams from the UK, US and Europe investigating high-risk soft tissue sarcoma will be co-ordinated by Dr Robin Jones at the Royal Marsden NHS Foundation Trust and the Institute of Cancer Research. It is the first opportunity of its kind for collaboration from fields as diverse as pathology, artificial intelligence, oncology and radiology on a single project. Excitingly, it is the most ambitious and comprehensive effort into understanding this area of sarcoma treatment – preoperative treatment or treatment before surgery – to date. This investment has been welcomed by Sarcoma UK as a way to ultimately bring sarcoma patients closer to new treatments. “It’s hugely exciting to see this major new investment which will drive forward progress in sarcoma,” says Richard Davidson, CEO of Sarcoma UK. “This is a welcome opportunity for the sarcoma research community to bring together expertise and diverse technologies to lay the foundations for developing more targeted and effective treatments.” Sarcoma UK is committed to funding research into better and kinder methods to diagnose and treat all types of sarcoma and has been supporting sarcoma research for over a decade.
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Glitter Ball puts the sparkle into spring
Four years of support
A magical night in March saw the first ever fundraising Ball for Sarcoma UK enjoyed by around 300 guests.
CEO Richard Davidson thanked them for their outstanding work and tireless support as he told guests about Sarcoma UK’s commitment to beating the disease and how their fundraising support that night would make a difference.
Helen Stradling, Support Line Lead, has seen how the service has evolved since its early days. She came on board about six months after the confidential Support Line started in Feb 2016 in response to an increasing number of more complex calls to the office team.
“Tonight is all about thanking our amazing supporters and spending time with friends and family.
From day one, it was clear that it was not just patients, but family and friends of those with sarcoma who were in contact.
Everyone at the event at London’s 8 Northumberland Avenue was treated to a stellar line up of entertainment to make the evening go in style. Enchorus, a roof-lifting London choir, and soprano Sally Harrison delighted everyone with their very special performances. High-energy party band Fully Funktional and DJ Ashley James (Hoxton Radio) were on hand to ensure the fun went on all night. The comperes were the irrepressible musical comedy duo Bounder & Cad. A special moment was a cheque presentation from supporter Anjula Thompson and her daughter Zoe. When Sarcoma UK trustee Dave Thompson died as a result of his sarcoma in 2016, Anjula and her wider family started to fundraise in his memory. They’ve now raised an incredible £211, 562 and 46 pence which was presented to the charity at the ball.
“It is both a celebration of life and a wonderful tribute to those we’ve lost who are glittering stars, shining down on us. “There is still much to do but I’m confident that by coming together, by raising awareness and much needed funds for sarcoma research we will make the change that is so desperately needed.“ A big thank you goes to everyone who lent their support to the gala evening, including the Glitter Ball Committee chaired by Amelia Granville, which helped to raise £24,000.
The year 2016 was not only a leap year but the birth of the Sarcoma UK Support Line – a service that has never been so important.
“They are the ones who don’t get to go to clinical appointments and may only get bits of information,” says Helen. “People don’t know what sarcoma is – to be told about a cancer diagnosis is bad enough, but to realise that it is one you have never heard of is hard. People contact us with questions they may not be able to ask elsewhere and get reliable information.“ The current team structure of an occupational therapist and two nurses also reflects the need to address many different enquiries by phone, email and now text. It covers all kinds of sarcoma – soft tissue, bone and gastrointestinal stromal tumours (GIST) “We are really honoured to provide this service – all three of us have 60 years of experience between us and it’s really nice that we are able to use this knowledge in a different way. “Clinical Nurse Specialists do their very best to offer support, but they just don’t have the time to sit and answer every question. We would never intend to replace them, but are an ‘add on.’ “The CNS teams are happy to point people in our direction as they recognise we know what we are talking about due to our backgrounds.” A new text service began in November 2019 and by the end of April, there had been around 70 text conversations. “These can be even more anonymous than calls or emails; you may not know whether you are hearing from a patient, a family member or a friend,” explains Helen. “While it’s difficult to quantify, it’s possible that the younger age group find texting easier. It’s simply another way to be in contact.” In July the service streamlined its hours to be the same every day (10 am until 3pm). This has decreased the number of ‘out of hours’ calls and ensured that the service is used consistently throughout the day. The questions vary tremendously, but there are common topics and touchpoints. People often get in touch around diagnosis as they have never heard of sarcoma.
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When a patient is being treated is also a time when people want information about why they might be having surgery, for instance, but not radiotherapy or chemotherapy. “Because there are so many different types of sarcoma, people want to know what is being done and why,” says Helen. As there are so few treatments for sarcoma, and they don’t work for everyone, clinical trials have become an increasingly asked about topic. “People want to know what more they can do, and what trials might be available. This is often more family and friends – people are desperate to keep their loved ones close to them for as long as possible. As there aren’t that many for sarcoma, due to so many sub-types, it can be really hard to explain to those who just want to help. “There are always questions that we have never heard before, but we are lucky to be a small team with different knowledge and backgrounds so we can discuss these. Our Medical Advisory Group of clinicians are really supportive.” Within days, the team doubled and demand was at an all time high with the team responding to nearly four times as many calls, texts and emails as usual. People have been very worried about their treatments, for instance, and hospital appointments were moved online. There has also been a welcome collaboration with 22 other national cancer charities in producing advice for those living with cancer, including sarcoma. “A number of people do just look at the website; having information visible, so they don’t have to get in touch, is enough. GPs and clinical teams are currently inundated which makes us even more invaluable. “The service is going from strength to strength, helping people that really need it,“ says Helen. “We really are here for anyone, it doesn’t matter who you are.“ Helen is also keen to hear ideas about what people would like to see from the service – you can feedback to supportline@sarcoma.org.uk
Sarcoma Support Line Call: 0808 801 0401 Monday to Friday 10 am–3 pm Text: 07860 058830 Email: supportline@sarcoma.org.uk Connect Summer 2020 9
Let’s connect – the lowdown on support groups Support groups are a key part of the sarcoma community, whether local or online. An experienced Support Group Leader in Sheffield shares tips about how they can make a difference.
Local groups are often patient led, with patients and carers working with local sarcoma Clinical Nurse Specialists (CNS) or doctors. Most groups are small and relaxed, taking place in venues like a cancer support centre, community hall or even a pub. The format of the meetings can be whatever works for members to feel welcome and comfortable. Barry Davis from Chesterfield co-runs the Sheffield group with John Beeden. Barry first got involved after he was diagnosed with a more common type of sarcoma, gastrointestinal stromal tumour (GIST) in 2010. Barry’s sarcoma was detected almost by accident as he was undergoing a scan for a different problem. He was told about the group by a CNS upon referral to a consultant oncologist. “When I was hit with this, I was a bit wary,” he says. Barry took over as Chair in 2013 and John, also a GIST patient, agreed to help run the group. Their wives have also become involved. When Barry took over, numbers were low so it was decided to consult members on the timing of meetings. A Friday night was suggested, and the group now meets six times a year, usually on the second Friday of every other month from January. The Sheffield group covers a large patch including Barnsley in the North, North and South Yorkshire, Worksop as well as North Derbyshire, and meets in Sheffield at Weston Park Hospital.
Join the fun at home! Host a Great British Picnic Get together with friends and family this summer for a picnic to raise awareness and funds for Sarcoma UK. For fundraising tips and ideas as well as more information visit sarcoma.org.uk/gbp or email fundraising@sarcoma.org.uk
One of the biggest successes is the speakers enlisted by John. These have covered a wide variety of topics from steam trains, butterflies and moths to climbing in Alaska. A Q and A session and refreshments follow before members chat in smaller groups. “This is where the real support happens, and people can talk about where they are on their sarcoma journey, the football results or whatever else is topical. We don’t talk about sarcoma all the time, which is a good thing,” says Barry. There are usually about 15–18 regular attendees from a core group of about 28 patients and carers. The group is supported by at least one Sarcoma Clinical Nurse Specialist at each meeting, so it’s not just patient/ carer to patient/carer support. However, group members cannot replace medical advice or offer second opinions on a particular sarcoma problem.
The last Friday meeting of the year is an annual Fish and Chip supper in November, when the group meets informally. It also enjoys visits to local landmarks such as the Cathedral and the Cutlers’ Hall in Sheffield. The local church of one of the patient members, Jane Studd, adopted Sarcoma UK as its annual charity in 2019. The church knew some of Jane’s history of sarcoma and she was able to put them in touch with Clinical Nurse Specialists to speak at a Ladies group meeting. Barry and John also spoke about the patient perspective and the role of the support group. Fundraising for Sarcoma UK was spearheaded by members of the Ladies group throughout the year, raising over £2,200; a magnificent achievement. Sarcoma UK holds regular Group Leader days which offer an invaluable opportunity to learn new skills, meet others and share experiences. When it comes to running a group, Barry is very clear. “You have to first gauge the level of interest of patients and carers, and have a good clinical network as one challenge is to get to the people who may need us. The clinical nurse specialists help to promote the group as the Data Protection Act and patient confidentiality can be a problem in that patients have to give their permission for their contact details to be released to the group leader. “The people that make the group are the people who attend,” said Barry. “It’s not a club we want to belong to but we are where we are and it’s there if people want it or need it.” Sarcoma UK has produced useful Support Group Leader guidelines written in collaboration with experienced group leaders. The publication offers ‘best practice’ advice on all aspects of organisational and key issues. Find the guidelines and other resources at sarcoma.org.uk/resources The website includes dates of next meetings and useful resources at sarcoma.org.uk/news-events/events. You can also sign up to the regular Support Group Bulletins or contact Laura Hart, Information and Support Officer, at laura.hart@sarcoma.org.uk Local and online support groups are run independently of Sarcoma UK. While the charity provides support and assistance, it does not take responsibility for group activities or services, such as campaigning or information and advice.
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Fundraising update From planning your own summer picnic to taking on a virtual challenge, here’s a host of ways that you can have fun and raise muchneeded funds for Sarcoma UK – plus some inspiring stories from our amazing supporters.
Virtual Runner 500k challenge
What could be harder than training for a marathon?
We kicked off 2020 with this intrepid initiative – allowing you to run, cycle, walk, jog or swim 500km over a whole year! Some people are tackling it as part of their training for another event while others gave it their all as part of a New Year’s resolution. Plenty of people when lockdown started in March saw it as part of their permitted exercise.
Ryan Banner could talk for Derby. A happy-go-lucky chatterbox, he’s no stranger to raising money for all sorts of good causes. This year he decided to challenge himself with the Edinburgh Marathon in honour of his aunt who was diagnosed with soft tissue sarcoma in 2017.
If you haven’t yet started, there’s still plenty of time to get involved, get fit and have fun your way. Not only are you raising much-needed funds for Sarcoma UK but you’ll get a medal too. It’s super-simple – sign up with Virtual Runner (virtualrunneruk.com/product/500kmchallenge-2020) and register your participation with Sarcoma UK. You’ll get a fundraising pack and a Sarcoma UK top to wear. You need to record your distances – see here – and submit your proof by 5 January 2021 to get your medal. What better way to keep you motivated for the rest of the year? Susan Wheatcroft from Nottingham (pictured) was the first person to hit the 500 km target in early March. She’s non other than the organiser of Virtual Run UK who likes to practice what she preaches and confesses to getting a real buzz out of fundraising. Hats off to you Susan!
Give a little, do a lot Donating small sums can make a big difference: If you saved money on your daily commute or coffee by working at home, why not help others with the price of your travel or caffeine hit? Can’t get to the shops? You could donate the money you didn’t spend on Easter goodies or bank holiday treats to Sarcoma UK’s vital work. Your gym membership on hold? Work out at home and flex the money you’ve saved to helping our sarcoma work continue.
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Having run long distance races before this time, he decided to push himself even further in his bid to tell the world about sarcoma. The challenge; to stay silent for one whole day at work. “It’s the hardest thing I’ve ever done but my work team really came together and were behind me 100%,” says Ryan. Ryan’s sponsored silence, which raised £600, was part of a charity day he organised with his company to raise awareness of sarcoma and Sarcoma UK. “The whole day was amazing. My mum made bacon and sausage rolls for the team to buy for breakfast, which went down a treat, and after work there was raffle and a sarcoma quiz which everyone got stuck into. Loads of local cafes and restaurants got involved; they listened to what I had to say about sarcoma and then donated vouchers or prizes for the raffle. Even Nottingham Ice Centre donated an ice skating experience. “It was a great way to start everyone’s weekends off. It was a good laugh but also really educational.” By not uttering a single word, Ryan has brought sarcoma to everyone’s attention. “95% of my office hadn’t heard of sarcoma before my silence. Now everyone knows that sarcoma is cancer.”
Thank you everyone During this uncertain time, your generosity is continuing to make a difference to so many people. People affected by sarcoma still need your support. And we still need you to be there for them. Since the start of the COVID-19 outbreak, we have expanded and adapted our support services (read more on page nine). It’s only thanks to your fundraising and donations that we are able to offer this much-needed help. We are incredibly lucky to have such determined, creative and committed supporters. Every penny is vital.
Virtual fun while staying in touch
Time for a Great British Picnic
You can connect with friends and family through a host of fun and inventive ways thanks to the magic of technology. Here’s our top suggestions for fundraising at home but do get thinking about your own!
What better reason to link up with your nearest and dearest than for a picnic? As we all become ever more inventive, Sarcoma UK is asking you to host a Great British Picnic in your own space.
Get creative over dinner
By getting together with friends and family this summer for a picnic, you can raise awareness and funds for Sarcoma UK. You can hold your event anywhere you choose, anytime from May until September, so it’s really easy to get organised and have some foodie fun.
So many of us have been getting creative in the kitchen so why not share your foodie moments with others by a virtual dinner party? Celebrity chef Brian Turner has come up with a very special Sarcoma UK menu to make the meal go with style. There’s so many different twists to host a night to remember right from the planning and cooking through to the dining and entertainment! Get started by donating and downloading the menu while getting your guests to do the same. Pick the date and time for your virtual meal as well as deciding how to link up and you are on your way! You can even share your tips and tastings as you cook together before the main event. Add a bit of competition to the evening with an auction or a raffle – whatever works for you. Here’s everything you need sarcoma.org.uk/get-involved/raise-funds/virtualfundraising/virtual-dinner-party
Go the distance at home Does the Eiffel Tower feel a world away? Is the Gherkin beyond your gaze? Not if you take on a virtual climb in your very own home. Transform your stairs into the world’s most iconic structures and ask people to sponsor you as they would for any other climbing event. Set a date and pick your distance from a selection which spans the Sydney Harbour Bridge (1,002 steps) to the mighty Ben Nevis (22,197 steps). It’s easy to set up your sponsorship page on justgiving.com/sarcomauk – suggested target of £100 – and share on social media so your friends and family can lend their support. Check out more ideas for a virtual climb and other challenges here sarcoma.org.uk/virtual-fundraising
For fundraising tips and ideas as well as more information, visit sarcoma.org.uk/gbp or email fundraising@sarcoma.org.uk
Carol concert update It’s never too early to think about Christmas! After the sell-out success of our very first Christmas Carol Concert last year, we are already busy planning our next event. The festive evening of Christmas carols, readings and solo performances in aid of Sarcoma UK will be held on December 9 2020. We already have interest in tickets so don’t miss out – add your name to the waiting list: sarcoma.org.uk/carol-concert-2020
Let’s get quizzical The annual Chris Martin Quiz Night has become legendary for its fiendishly difficult questions and hugely supportive participants. The last event was as fun as ever and raised an incredible £37,000. Our thanks go to Zoe Conway and everyone who came out in such numbers with unfailing generosity for a fantastic night in aid of the Chris Martin Fellowship. It was a wonderful tribute to Chris in what is a vital development in the foundations of Sarcoma UK’s Genomic Research programme. If you fancy your own brain-teasing chances, here’s your perfect chance to enlist some friends and family with a quiz night in. Download a premade quiz or you can come up with your own. With your teams and a quiz master sorted, make a donation and you are all set. Our Virtual Quiz nights every Sunday and Wednesday have proved really popular since the spring. Its £3 to play against other Sarcoma UK supporters. See here for full details virtualquizevents.com/author/sarcoma-uk Connect Summer 2020 15
Clinical trials – what should you know? The phrase ‘clinical trials’ is increasingly familiar even beyond the medical world – but what does it mean in reality? In essence, clinical trials are medical studies involving people; a way of testing drugs to ensure that they are safe and effective. But dig a little deeper and there are some variations of clinical trials beyond new treatments, according to Sarcoma UK's clinical trials hub – a one stop shop for the key questions and considerations around clinical trials sarcoma.org.uk/support-information/clinical-trials-hub/ about-clinical-trials. Beyond treatment, these may focus on: • New ways of giving treatments, drugs or combinations of drugs to treat sarcoma • New tests or scans to diagnose sarcoma • New drugs or complementary therapies to control the symptoms or side effects of treatment • The risks and causes of sarcoma, often looking at genetic factors. Sarcoma UK launched its clinical trials hub in early 2018 and user feedback has shown that the service is making a big difference to patients. Are clinical trials for you? What do they involve? How do you get on a trial? The hub can help navigate through such common questions with in-depth answers and expert advice about these ways of advancing treatments. Martha, 41, was diagnosed with liposarcoma six years ago and underwent surgery. Almost five years later, her sarcoma came back. During that time Martha had become pregnant and had a healthy baby boy who is now two years old. When her son was around four months, it was discovered that the cancer had spread into her bones and soft tissue, resulting in tumours and lesions, including her torso and hip. She had radiotherapy a year ago, but was told that the standard care in the UK would be six rounds of chemotherapy to temporarily halt the spread of the disease. Martha recently flew to the States to take part in a selffunded clinical trial in Tampa, Florida, at the Moffitt Cancer Centre which she discovered through her own extensive online research. The pilot study involving around 30 people is an immunotherapy trial for men and women who have a specific type of sarcoma that has come back after treatment, or cannot be removed by surgery, known as myxoid/round cell liposarcoma. Immunotherapy is a relatively new type of treatment that uses the body’s immune system to treat cancer. Recent research has shown promising results that could 16 Connect Summer 2020
Chemotherapy – a patient’s perspective
lead to more treatment options in the near future.
Andrew Sutton, 39, was diagnosed with osteosarcoma last December and is currently receiving chemotherapy. Here Andrew shares a few practical tips he wishes he had been given about starting chemotherapy.
The treatment around which the study centres is made up of the patient’s own white blood cells, known as T-cells, which are collected from the patient and genetically modified in a laboratory. Ultimately the aim is for them to destroy the cancer cells. Martha first visited the US before Christmas 2019 for a variety of tests and a biopsy when they took T-cells before being given the go-ahead to take part. She has subsequently had two rounds of chemotherapy. Her participation in the US trial included further chemotherapy to decrease the white blood cells, scans, more tests and ultimately the new T-cells. There was follow-up through daily outpatient appointments to monitor Martha’s progress and any side effects. “I have always felt fine physically – the mental strain of the whole process has been the most difficult,” says Martha. “It is very strange to be told that you have these tumours and are very sick when you don’t feel it.” Martha did a lot of research covering Europe and beyond in a bid to find a trial that was very specific to her rare type of sarcoma. Her husband Jack has been very supportive of her desire to take part. “It was a very easy decision to make; as soon as I was told about my life expectancy (18 months) I scoured the internet. “Sometimes I feel very positive and think it might work – the doctors have said they are very excited about the results. In the US, there is a lot of positivity, a lot more hope.“ Sarcoma UK wants to see more clinical trials for sarcoma. Only a small number of clinical trials are open at any one time and Sarcoma UK wants to ensure that all patients have access to clinical trials when possible. The charity has pledged to invest over £3 million into sarcoma research with the aim of finding effective treatments for the disease in the next ten years. You can find a regularly updated list of the trials that are currently taking place in the UK in the clinical trials hub at sarcoma.org.uk/clinical-trials-hub/find-trial Research into teenage and young adult cancers has made slower progress than for any other age group. Why? One reason is that many clinical trials are not open to those under 18 – with no medical justification. Sarcoma UK is backing the Fostering Age Inclusive Trials initiative by encouraging researchers, regulators and members of ethics committees to include teenagers in adult research whenever possible. Find out more at accelerate-platform.org/fair-trials
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The biggest and hardest thing was acceptance. I have an incredibly rare cancer that is usually diagnosed in people much younger than myself... the natural reaction is why me? At some point, you need to accept that it has (which isn’t easy). A huge mental burden will be lifted and you are then free to concentrate on what you can control. Reach out to people. It might be the last thing you feel like but it will be one of the most helpful things you can do. It’s highly likely you know someone who’s been through something similar – their experiences are invaluable. Once you’ve told people of the diagnosis you’ll find you’ve created a (friendly) monster... best wishes, questions, requests to visit which quickly becomes overwhelming. The best way for me to reduce the workload – especially important on ‘bad days’ – is to communicate in groups. I’ve created four WhatsApp groups with different content based on the audience – family, close friends, other friends and work colleagues. A detailed online spreadsheet that I could share was a great way of managing requests to visit. Setting up a day by day view in something like Google Sheets meant that everyone had the up-to-date version. Ask if your chemotherapy will result in hair loss – not all do. When I found mine would, I made a decision... would I prefer the chemo to take my hair away from me on some random day or would it be better for me to be proactive and choose to remove it myself? I did the latter, deciding that January 1 would be a great date to embrace my new haircut. If you aren’t as bold, I’d suggest gradually taking it shorter and shorter.
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Find out how they will be delivering the chemotherapy. I was given a Lumen line that goes from my chest through to an artery near my heart. As it’s there for nine months, it’s vital that it’s kept clean... which means frequent clean dressings. The most important thing is for it to stick securely. I’m not a hairy man, but shaving my chest meant that I went from having to change the dressing daily to every four or five days. Buy a water bottle with measurements on its side. You are going to be asked how much you have drunk frequently and this ensures accuracy. Some days you will be better than others post-chemo. Keep a diary to help you understand whether you should be feeling this well/ill (compared to last time) and to help you plan exciting stuff for the days you are most likely well. Create an emergency list for anyone and print out lots of copies. Details I included were hospital contact details (including names for nurses, oncologist and surgeon) and your patient number; GP contact details. If you are lucky enough to have private medical insurance, include contact details, your member number and claim number. I also added instructions on what to do in an emergency and what to look out for (eg a high temperature). New and updated patient guides There are now new guides to phyllodes of the breast and Dermatofirbrosarcoma (DFSP) and many other updated - all reviewed by specialists in the sarcoma field. You can download the factsheets or order hard copies from sarcoma.org.uk/supportinformation/patient-guides Connect Summer 2020 17
Team Sarcoma on course for the London Marathon this autumn
Tips to keep motivated this summer Needing to get back on track with your marathon training? With over 25 years’ experience of running and pacing over 100 marathons, Sarcoma UK’s running expert Matt Pullen has some great advice.
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The Virgin Money London Marathon is incredibly important to Sarcoma UK.
This year we were on track to hit £1 million raised by 300 runners since 2013. Team Sarcoma for 2020 to date is 83 runners, even bigger than last year’s line up of 65 stars who raised a fantastic £230,000.
He realised that something was wrong when dressing for a Christmas band performance (he plays the trumpet), he was unable to fasten his evening suit. Now he is all clear and considers himself ‘lucky to be alive.’
While the decision to postpone the race was the right one, we completely understand the disappointment for the thousands of runners who had trained so hard through the winter for this challenge, and so many others.
The couple have eased off on marathon training after getting up to 16 miles and are now tapering a bit.
Many of our runners joined our marathon training event in January, full of enthusiasm and excitement for the incredible spring day ahead – the 40th London Marathon. Keeping that motivation going in times of uncertainty and restricted exercise wasn’t part of their plans, but we’ve been heartened by the positive attitudes of our supporters who are still committed to those 26.2 miles now scheduled for Sunday 4 October.
“Sarcoma UK is lucky to have such a dedicated team of runners. We’ll be with them every step of the way.” Ian Gray, 76, and his partner Sheila Omerod, 72, who are taking on the London Marathon for the very first time, have come up with a novel way to keep training during lockdown. Ian has mowed a figure of eight running track in his field at home in Belton near Epworth, North Lincolnshire. Five laps of the track are the equivalent of a mile! Ian, who has five children and six grandchildren, started running at the tender age of 67 and Sheila became involved after years of being “a running widow.” He’s a firm believer that his running has saved his life. In the year before his sarcoma diagnosis, he completed a gruelling 100 mile Himalayan race over five days plus five marathons, including two in Switzerland. Ian was diagnosed with dedifferentiated liposarcoma in 2018 and had surgery to remove the tumours along with one of his kidneys. He also had an ileostomy which was reversed the following year. 18 Connect Summer 2020
“It is what it is, we just have to go with it,” says Ian. “You’ve got to be positive in life – you never know what is round the corner.” His tips for marathon training? “Start slowly and gently build up – Rome wasn’t built in a day – as well as being careful about hydrating. It’s all about determination.” He has nothing but praise for Sarcoma UK. “The support is marvellous. I didn’t know much about sarcoma, like most people, and I’ve met a tireless set of people through the charity who have lost loved ones.“ Gurpreet Douglas has a very personal motivation for running the London Marathon – her ‘amazing’ grandmother Gurmit Kaur who was diagnosed with terminal sarcoma and who is still her ‘loving sassy self.’ Gurpreet and her family found the charity’s information and resources on understanding the cancer to potential care and treatment ‘so helpful.’ She also attended our Marathon training earlier this year. Despite the disappointment of the race being postponed, Gurpreet has kept on fundraising and exercising. She took part in the #TwoPointSixChallenge - running 2.6 miles and skipping for 26 minutes to continue raising money for Sarcoma UK. “The goalposts may have moved but it hasn’t lessened our motivation in the slightest,” said Gurpreet. “I am so honoured to be part of an awesome team.“ Her whole family are supporting her commitment – go Gurpreet!
Calling Own Place Marathon Runners The generosity and commitment of our supporters to the annual challenge of the Virgin Money London Marathon has been truly remarkable. This year, your support is more important than ever. If you have your own place and would like to run for Sarcoma UK, we’d love to have you on the team! Email fundraising@sarcoma.org.uk for how to join in.
Take it easy over the next few weeks. Have a week or even two off doing long runs.
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Start tapering your runs to make them shorter. If you’re currently running 18 miles or more, bring your runs down to a 10k.
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If it’s possible, it would be great to do an event such as a 10k or half marathon in June or July. Towards the end of July is when your marathon training should restart. Training during summer months has good and bad parts; it’s lighter in the evenings but it is also warmer so make sure you stay hydrated.
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Amsterdam and New York are among the traditional autumn marathons, so you could look at their training plans to see what they suggest.
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You may have holidays booked for the summer so you can start planning around those, unless you wanted to run while you’re away. If you have sustained an injury during your training, now is a great time to reflect why that could’ve happened i.e. type of trainer. If it was a muscle injury, you could use this time to strengthen the muscle as well as the surrounding muscles, but make sure you get advice from a sports therapist if possible. Missed a few weeks of training? Don't panic. Don't cram in the runs you've missed but instead slow down your pace and reduce the distances you're aiming for.
exercising at home if you are unable to train 10 Try outside. Keep your fitness up with home cardio and leg strengthening exercises.
For more tips check out the Team Sarcoma: Community Facebook page Facebook.com/ SarcomaUKFundraisers
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Sarcoma UK is the only cancer charity in the UK focusing on all types of sarcoma. Our vision Where everyone affected by sarcoma cancer has the treatment, care and support they need. Our mission To ensure everyone affected by sarcoma receives the best treatment, care, information and support available and to create the treatments of the future.
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