You may have holidays booked for the summer so you can start planning around those, unless you wanted to run while you’re away

Glitter Ball puts the sparkle into spring

A magical night in March saw the first ever fundraising Ball for Sarcoma UK enjoyed by around 300 guests.

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. 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. “Tonight is all about thanking our amazing supporters and spending time with friends and family. “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.

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. From day one, it was clear that it was not just patients, but family and friends of those with sarcoma who were in contact. “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. 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