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Leukaemia Care’S Campaign Leukaemia Matters AUTUMN EDITION 2019 Roman Reigns: WWE, CML and me The big interview Page 12 www.leukaemiacare.org.uk In This Issue 4 Spot Leukaemia 12 Roman Reigns 17 Radio 4 Appeal 18 Leah Arora 24 Chemo brain 26 Clinical trials Hello, Welcome to the Autumn issue of our magazine! This bumper issue coincides with Blood Cancer Awareness Month and our Spot Leukaemia campaign. Throughout September, we’ll be encouraging the general public and health professionals to raise awareness of the signs and symptoms of leukaemia. On page four, you can find out more about the campaign and how you can get involved. I’m also looking forward to welcoming many of you at our Spot Leukaemia reception at the Houses of Parliament. The reception will bring together a wide range of stakeholders who are working to support patients with blood cancers, as well as patients and families who have been supporting Leukaemia Care’s campaign. Also inside this issue, you can read our exclusive interview with WWE (World Wrestling Entertainment) superstar Roman Reigns, who announced last year that he was receiving treatment for chronic myeloid leukaemia (CML). You’ll also find an article on how to spot the common symptoms of leukaemia. See you next time! Christopher Matthews-Maxwell Chairman Keep up with the latest news and patient stories online. You can find us at: www.leukaemiacare.org.uk /LeukaemiaCare /leukaemiacareuk /LeukaemiaCareUK Patient Services News Catch up on the latest news from our Patient Services team. Buddy scheme expansion learning. Health Week. Could you be a buddy? Or are you If this sounds like you, get in Listen to them on Spotify, looking for one? touch with our Engagement iTunes, Soundcloud or Officer, Nickey Bate, at nickey. CastBox here: http://bit.ly/ Our acute leukaemia buddy [email protected], or BloodstreamPodcast, or just scheme is looking for acute call 08088 010 444. search for ‘Leukaemia Chatters’ on leukaemia patients who would your podcast provider. like to be matched with one of our Book now for our patient trained buddies. information days We also have brand new buddy Missed out on our previous schemes looking for buddies: information days? • Polycythaemia vera (PV) buddy Throughout 2019 and 2020, scheme we’ll be taking our info days to even more places across the UK, • Essential thrombocythaemia including: (ET) buddy scheme • London • Myelodysplastic syndromes (MDS) buddy scheme • Cardiff • Carer buddy scheme • Birmingham If you’re interested in becoming a • Glasgow buddy, or you’d like to be matched with one, get in touch with our Book your free place here: http:// Buddy Coordinator, Kay Drew, on bit.ly/PatientInformationDays, or [email protected] call the team on 08088 010 444. or call 08088 010 444. For more information, you can Listen up! Get stuck into our contact the team on 08088 Interested in being a patient podcasts 010 444, or email support@ speaker? Our podcasts are a great way to leukaemiacare.org.uk. You can also find all our support Would you be interested in learn more about topics affecting you, as well as hear stories from groups on our website at www. becoming a patient speaker at one leukaemiacare.org.uk. of our patient information days or others affected by blood cancer. GP conferences? We’re looking for Most recently, we’ve discussed patients who want to share their CAR-T therapy, along with men’s story as a way to support other healthcare issues as part of Men’s patients, or to help GPs with their Leukaemia Care 2019. Reproduction in any matter, in whole or in part is strictly prohibited without express permission from Leukaemia Care. The views expressed in this publication do not necessarily represent the views of Leukaemia Care. Whilst all due care is taken regarding the accuracy of information, no responsibility can be accepted for errors. Any advice given does not constitute a legal opinion. The printing of any advertisement in Leukaemia Matters does not necessarily mean that Leukaemia Care endorses the company, product or service advertised. Registered Charity No. 259483, Scottish No. SC039207 3 SPOT LEUKAEMIA Go spotty for Spot Leukaemia September is Blood Cancer Awareness Month, and this year at Leukaemia Care the Spot Leukaemia campaign has returned to raise awareness of the symptoms of leukaemia. Find out how you can get involved. Help to shine a ‘spot’light on out for in case you or a family Throughout September, we leukaemia member presents any of the six will be posting over 30 patient main symptoms of leukaemia. stories like Kerri’s on our website Blood Cancer Awareness Month and various social media was kicked off with a number Other free Spot Leukaemia platforms. Share them with of buildings across the UK merchandise includes friends and family to improve lighting up red for us. Over 60 pin badges, wristbands, understanding of leukaemia, different buildings or landmarks window stickers, trolley how it presents and who it will be lighting up throughout keyrings and more. To order affects. September to show their our free Spot Leukaemia support and act as a beacon to merchandise, visit http://bit.ly/ Organise a spotty fundraiser improve public understanding of SpotLeukaemiaMerch leukaemia and its symptoms. To show your support this Share our patient stories on month, why not hold a spotty If you see any of the buildings social media! fundraising event with lit up, don’t forget to post your your family, friends or work photos on social media by using In August, Kerri Hannay, who was colleagues? the hashtags #SpotLeukaemia diagnosed with acute myeloid and #Spotlight. Find out more on leukaemia (AML) in 2017, kicked From spotty cake sales to spotty page 8. off our campaign with a feature dress-up days, there are loads on the MailOnline. Kerri was Order your free Spot Leukaemia of ways you could get involved. diagnosed with AML when she magnet For more information or to order was 28 weeks pregnant but a Spot Leukaemia fundraising Our Spot Leukaemia magnets decided to delay her treatment pack, go to http://bit.ly/ are free and can be ordered until she was at least 32 weeks, SpottyFundraisingPack. online to place on your fridge, so her son, James, could be born a tiny reminder of what to look via c-section. 4 www.leukaemiacare.org.uk 50TH YEAR Leukaemia Care’s Milestones To mark Leukaemia Care’s 50th anniversary in September, Leukaemia Matters takes a look at the charity’s expansion from a small support group into a national charity. 11th September 1969 1970s – – "The Leukaemia Care Caravan Society" is registered service is as a charity to support launched. children and parents affected by leukaemia. 1980s – The charity’s scope is changed to include care for all ages. 1992 – The Care Line is introduced. 1996 – The charity 1997 – Leukaemia Care moves from is relaunched as Exeter to Worcester, Shrubbery Avenue. Leukaemia Care. 1999 – First Mascot, Windy Miller, arrives. 2005 – Leukaemia Care moves to new Worcester headquarters, opened by Gary Lineker. 2005 – First patient advocacy role. 2006 – First patient conference at Kingsway Hall Hotel, London. 2008 – First Leukaemia Care nurse is launched. Helpline freephone 08088 010 444 5 2017 – Buddy 2016 – Launch of nurse bursary scheme. scheme is launched. 2016 – The Spot Leukaemia campaign is launched for the first time. 11th September 2019 – Leukaemia Care celebrates its 50th anniversary. 2018 – Nurse academy is launched. 2018 – Leukaemia Care hosts its first GP training event. Celebrating 50 years of support In 50 years, Leukaemia Care The seven families who set Leukaemia Care, as we know has transformed from a local up Leukaemia Care in Holland it today, has built on this support group for parents Park, London, during 1969 foundation over the last 50 of children with leukaemia, had two things in common – years and now offers invaluable to a national organisation children with leukaemia, and a support to anyone affected by a that reaches out to all those determination to do something blood cancer, whether they are affected by any blood cancer about the lack of information patients, families or carers. type. and support available to them. 6 www.leukaemiacare.org.uk 50TH YEAR Because treatments for important part of the work that If you would like to fundraise blood cancer are constantly we do. We have also made great for our birthday, get in touch improving, more people than progress recently in training with our fundraising team at ever before are surviving primary healthcare providers fundraising@leukaemiacare. leukaemia, (whether they are about the signs and symptoms org.uk for some friendly advice cured or managing the disease of leukaemia and how to spot and support. as a chronic condition), and as it, meaning patients can be the rates of leukaemia increase diagnosed sooner and have a Facebook birthday fundraiser due to an aging population, better chance of survival. Facebook fundraising is the support that Leukaemia Can you support us on our another great way to support Care provides during and after Leukaemia Care. treatment has never been so birthday? important. According to official Your kind donations over 50 Ask your friends on Facebook figures, currently over 33,000 years of the charity’s history for a donation instead of new cases of blood cancer have enabled us to deliver receiving a present. Whether it’s are diagnosed on an annual these important services to a milestone birthday, like 30, basis, making it the fifth most those in need. Perhaps you are 60 or 29 (for the second time), common type of cancer in the interested in raising funds for donations in lieu of presents UK.
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