NEWS THE GREY MATTERS ISSUE 21 WINTER 2019

Groundbreaking research

Sherrie Hewson on her most important role

Living well when you have a brain tumour

ISSUE 21 1 WELCOME CONTENTS Hello

I’m delighted to welcome you to issue 21 of The Grey Matters. CONTENTS

As you can see, we’ve made some updates to the format and content of the magazine, having listened to your ON THE COVER thoughtful feedback. That’s why you’ll now see sections focused wholly on research and dedicated to the experience of living with a brain tumour. We really hope you enjoy reading it!

In these politically and economically uncertain times, it’s more important than ever that we unite as a community to achieve our goals: doubling survival and halving the harm of brain tumours. Only together can we accelerate a change.

In the following pages, you can read about just some of the transformative projects we’re developing and funding. We aim to From BRIAN, our innovative brain tumour databank (pages 6-7) to our latest round of research grant awards (pages spend at 12-13), we’re determined to keep driving progress until least 80p of we create the step change needed to find a cure for this every pound disease. 08 16 18

spent on our GROUNDBREAKING SHERRIE HEWSON ON HER LIVING WELL WHEN YOU There’s also a range of people’s stories and experiences RESEARCH MOST IMPORTANT ROLE HAVE A BRAIN TUMOUR £1 charitable of living with a brain tumour, and their tips on coping with objectives. common symptoms and issues, such as fatigue (page 15). Find out how our researchers are Loose Women and Benidorm star From starting something new to working to overcome the blood–brain Sherrie Hewson speaks of her coping with the changing seasons – You’ll find our 2019 Christmas brochure enclosed with this barrier and see some of the exciting heartbreak at her “wonderful” read others’ tips and experiences on issue too, packed with an inspiring selection of cards and new grants we’re funding. brother Brett’s glioblastoma diagnosis. living well with a brain tumour. gifts that will help us move faster towards a cure. Last year, we raised an outstanding £70,000 – that’s enough to fund more than nine months of pioneering research! Less than Finally, we all know how easy it can be to put things off. WHAT’S INSIDE Making or updating your Will can often be one of them. Why not make today the day you take advantage of our free guide? It has information on making a Will, our free RESEARCH LIVING WELL REGULARS Will-writing services and how you can leave a gift. Just 3% visit: thebraintumourcharity.org/gift-in-will 06 BRIAN is coming, how 20 New beginnings after 04 News We’re going further every day in the fight against brain you can get involved diagnosis of money tumours. A cure can’t wait – together, we know we can invested into get there. 26 To myself before 10 How the blood-brain 22 What to eat during the diagnosis cancer research Thank you, barrier works treatment in the UK 28 Ask the experts goes on brain Sarah Lindsell 11 Spotlight on research 24 Seasons to be cheerful tumours. CEO 30 Your letters 12 Our latest grants 31 Upcoming events 14 Fighting fatigue

02 ISSUE 21 ISSUE 21 03 NEWS NEWS

CAMPAIGNING FOR CHANGE

Our Campaigns and Policy team have been driving change across the UK for the brain tumour community.

After campaigning alongside Dame Tessa Jowell to call for the rollout of the surgical aid 5-ALA (the ‘pink drink’), we were thrilled to hear in January that it would be made available in . All adult patients with a high grade glioma in the UK should now be able to access it if appropriate.

In , we’ve been working with Cllr Ryan Smart to ensure our HeadSmart campaign is launched in Fife. This follows a unanimous council motion earlier this year.

In , we’ve joined forces with the Department of Health, alongside other cancer charities, to develop a cancer strategy. As the only UK nation without one, it’s vital we get the voices of our community heard while this strategy is written. USING AI TO

And finally, we’ve met with important political stakeholders to emphasise DIAGNOSE BRAIN the vital needs of brain tumour patients in discussions around Brexit.

NEWS TUMOURS

Stories about artificial intelligence (AI) CELEBRATING YOU 2020 have started to appear regularly in the news, so it’s exciting to report on one of our funded researchers using it to Celebrating You, our community awards event, returns in May 2020. help defeat brain tumours. And nominations are now open! THE TWILIGHT WALK TRANSFORMING OUR Dr Phedias Diamandis and his Toronto- Celebrating You is all about celebrating and recognising you: our inspirational IS BACK! BENEFITS CLINIC based team have shown that AI can and dedicated community. It’s our chance to say a heartfelt thank you for going be used to diagnose different types above and beyond to move us closer to a cure. Want to help us propel progress and One way we’re striving to halve the of brain tumours, as well as specific make a life-changing difference to harm brain tumours have on quality features and patterns within them. people affected by a brain tumour? of life is by ensuring our community We know there are so many people out there who deserve special recognition for their outstanding contribution to the cause. But we need your help! If you Join us for The Twilight Walk this has access to the financial help To achieve this, the team showed the know someone who’s been tireless or relentless in their efforts, nominate them autumn! they’re entitled to. AI program 838,644 images of brain in one of our award categories today. tumour samples, across 1,027 patients. This inspiring event sees our In 2017, we launched our benefits You can nominate someone for Volunteer of the Year, Influencer of the Year, community unite for one common clinic to do just that, partnering with Normally, a pathologist will make Fundraiser of the Year, Young Fundraiser of the Year or Partnership of the Year. goal: to help accelerate a cure and Citizens Advice Rushmoor to provide a diagnosis by looking down a ensure no one has to face this a weekly phone clinic giving specialist microscope at a small tumour sample. Visit: thebraintumourcharity.org/celebrating-you to submit your nomination. diagnosis alone. guidance to the benefits system. But this means that diagnosis is quite subjective and could easily be Sign up to one of our 10km walks in We’re thrilled to announce - thanks different, depending on who looks Warwick (29 September), Windsor to our generous donor, the AOK Trust at the sample. (6 October) or (13 October), - that we’re now offering this service or hold your own walk of any length two days a week, with appointments The advantage of AI is that diagnoses in a location that’s best or most available on Tuesdays and Thursdays will be more consistent and it can also meaningful to you. from 9.30am to 4.00pm. And our recognise patterns that aren’t visible advisors can also now offer their to the human eye. Side by side and stride by stride, expert guidance on a wide range your footsteps will help lead our of strategies to help you save money. search for a cure! Visit: thebraintumourcharity.org/ Visit: thebraintumourcharity.org/ benefits-clinicto find out more and thetwilightwalk to sign up. book an appointment.

04 ISSUE 21 ISSUE 21 05 NEWS NEWS THE JOURNEY BRIAN IS COMING SOON! TO BRIAN

You may have seen WHAT IS BRIAN? THREE THINGS THE The project With this project, previous updates begins! We hold We’ve worked hand-in-hand with DATA WILL TELL US from us on BRIAN (Brain Jun 2017 our first Patient researchers will for the first people living with a brain tumour Mandate Group. tumouR Information and and their carers to build BRIAN. 1. Patients and carers will be able time have access to large Analysis Network), our It will allow those affected to share to view their data combined with their healthcare records with pioneering brain tumour the anonymised clinical data from Patient amounts of data from lots of researchers, upload information databank. BRIAN is a free, national datasets. BRIAN will allow recruitment about their treatments and quality you to share your experiences, starts – we have patients. This is game-changing global web-app enabling of life, and view aggregated data Jan 2018 learn from others and make 640 consents patients to make better- and reports on others’ experiences, choices about your treatment to date. for research into brain tumours. all through a secure web-app informed decisions about and care that are right for you. their care and accelerate accessible on laptops, tablets Dr Paul Brennan, The University of Edinburgh and smartphones. research to find a cure. 2. BRIAN will let healthcare BRIAN gets professionals compare their Research Ethics Now, we’re absolutely The web-app is what people see, performance against other Aug 2018 Committee but that’s just the tip of the iceberg. thrilled to announce that centres, highlighting differences approval. it’s launching very soon! The real power of BRIAN comes in service provision. This will allow from the databank sitting behind clinicians to share best practice the scenes. and promote better delivery and We receive improved effectiveness within Oct 2018 8.2 million NHS the healthcare system. WHERE DOES BRIAN’S Digital records. 3. Finally, BRIAN will provide DATA COME FROM? timely access to patient data We receive for researchers, which will drive BRIAN’s data will be drawn from three sample Public forward new research into brain main sources: Dec 2018 Health England tumours and accelerate progress (PHE) data. towards a cure. 1. From patients and carers via the BRIAN web-app. The team starts 2. From NHS Digital. This dataset WHY SIGN UP May 2019 to build the currently consists of 8.2 million BRIAN web-app. records stretching back over TO BRIAN? 10 years and covering 140,000 brain tumour patients! This BRIAN is designed and led by The Patient data offers a comprehensive people living with a brain tumour Jun 2019 Mandate Group record of inpatient admissions, and their carers who want to make previews the outpatient appointments and better-informed decisions and BRIAN web-app. A&E attendance records at NHS propel much-needed research. hospitals in England. The key to its success is your willingness to share information Young 3. From Public Health England for mutual benefit – so we need Ambassadors (PHE). PHE data is collected with you to sign up and give consent Aug 2019 begin BRIAN the primary purpose of creating to share your healthcare records. web-app a registry about cancer patients. testing. We’ve been getting to grips with For more information about how a sample dataset from PHE – we’ll use your data and what loading this into BRIAN will allow you’ll need to sign up, visit: BRIAN for analysis and data visualisation. Autumn thebraintumourcharity.org/BRIAN launches. 2019 06 ISSUE 21 ISSUE 21 07 RESEARCH RESEARCH One of the biggest challenges for scientists working to cure RESEARCH brain tumours is getting life- IN FOCUS saving drugs to pass through the blood-brain barrier and reach the tumour. CROSSING The blood-brain barrier

08 ISSUEISSUE 2121 ISSUE 21 09 RESEARCH RESEARCH how the blood-brain SPOTLIGHT ON RESEARCH

BYPASSING THE BBB • The team are determining barrier works the most effective treatment USING DRUGS AND combinations to target genetically GELS different cells in GBMs. • They’re also testing the safety Blood vessel in the brain Lead researcher: Professor of the delivery method (the Red blood cell White blood cell Colin Watts, University hydrogels). of • Finally, the team are loading the drug combinations onto the gels Professor Watts’ research focuses and injecting them into models on glioblastoma (GBM). His team is of surgical cavities. This tests how researching ‘hydrogels’ as a technique well the drug delivery platform to deliver drugs across the BBB. works.

These are highly absorbent materials Overall, this is an important project, with similar properties and structures determining whether hydrogel drug to human tissue, making them delivery is a feasible treatment option effective platforms for the loading for GBM patients. If successful, it’ll and release of drugs in the body. then be tested in a clinical trial, with the potential to move quickly into Most large molecules Brain cells clinical practice. Tightly packed cells The blood-brain barrier Membrane But one of the big challenges Small and essential molecules OVERCOMING in delivering this tool to the brain is overcoming the BBB. Brain THE BBB WITH NANOTUBES The team successfully tested CRISPR/ Cas9’s activity on GBM cells growing Lead researcher: Dr Khuloud in the lab. They also managed to load Al-Jamal, King’s College Cas9 protein onto the nanotubes and showed that the tubes can deliver the protein to the cells. The blood-brain barrier (BBB) is a great With our funding, Dr Al-Jamal The blood–brain barrier is researched ‘nanotubes’ as a method The team plan to carry out further a layer of tightly-packed cells security system for the brain, but it also of overcoming the BBB to treat work on the gene-editing technique, prevents many drugs from crossing it and glioblastoma (GBM). These nanotubes and, ultimately, the ability of the that helps protect the brain from can stop life-saving medicines reaching are tiny, needle-shaped carbon nanotubes to cross a representative lab model of the BBB. harmful substances in the blood, the brain. structures that are thought to be able to carry therapies. like bacteria or viruses. These cells surround the walls of the This can be a major reason for certain Dr Al-Jamal’s project made use treatments not working for patients, of CRISPR/Cas9, a gene-editing blood vessels in the brain. tool that’s been hailed as a revolution and also presents researchers with HELP US FUND MORE WORLD-CLASS RESEARCH in genetic engineering. This tool looks a significant challenge when developing for pieces of tumour-causing DNA A donation of £20 could buy the specialist liquid nutrients used to grow and cuts them to cause cell death. drugs to target brain tumours. glioblastoma cells in the lab, so researchers can assess responses to different drugs. Make a donation:thebraintumourcharity.org/donate

10 ISSUEISSUE 2121 ISSUE 21 11 RESEARCH RESEARCH BREAKING NEW GROUND OUR NEW £6.7M GRANTS

As we head into the final year of our

five-year strategy, We’ve committed Defeating Brain Tumours, we’re TARGETING AND NO BRAIN TUMOUR as committed as ever TREATING GBM IGNORED to our twin goals of £32.6m doubling survival and Lead researcher: Professor Lead researcher: Professor halving the harm brain Neil Carragher, The Richard Gilbertson, to transformative tumours have on quality University of Edinburgh University of Cambridge research since of life. the start of our strategy in 2015. IMPROVING QUALITY Psychologically, With £3 million of our funding, Professor Gilbertson’s grant is for As part of this, we fund pioneering there was little time to Professor Carragher and his team a large programme of research into OF LIFE FOR YOUNG We only invest research across the globe to will adopt a systematic approach two rare childhood brain tumours: comprehend the life- in world-class drive new discoveries, find better SURVIVORS to finding new drug targets and new choroid plexus carcinoma (CPC) and defining diagnosis I’d projects that we treatments and propel progress drug combinations to treat a subtype of ependymoma called believe will have towards a cure. We’re thrilled to Lead researcher: Dr Sophie received just hours before glioblastomas (GBMs). ST-EP-RELA. being rushed to hospital. the greatest report that we recently committed Thomas, Queen’s Medical impact on the £6.7 million to seven brand new Centre, Glioblastoma is the most common, No new treatments for these tumours brain tumour projects, spanning childhood and If something like ACT had and least survivable, high grade have been developed in the last 30 community. adult brain tumours, development (cancerous) brain tumour in adults, years, and regardless of how they’re We’ve awarded Dr Thomas more than been available, it would of new treatments and quality for which more effective treatments treated, most children affected will Thank you for your £220,000 to look at whether a therapy of life improvements. have provided a healthy are urgently needed. In addition relapse within five years of diagnosis. ongoing support. called Acceptance and Commitment to investigating new combinations Research that accounts for the rarity, Therapy (ACT) can be adapted to and more personal Here’s an overview of three of drugs, the researchers will also resistance and unique biology improve quality of life for young approach to process of the recently-funded projects. continue previous work by testing of these tumours is critical to give brain tumour survivors. what was an extreme and drug combinations already discovered these children and their families very surreal life event to by their team. hope of a cure. Childhood brain tumour survivors have the poorest quality of life of all cancer experience at a young age. This grant will allow the researchers We’ve awarded Professor Gilbertson survivors. Long-term effects can to suggest the treatment and his team £1.5 million to focus on: include learning difficulties, problems Sabrina, 24, who’s living with a combinations that have both the with motor control and symptoms of meningioma greatest chance of working and • making better models to use post-traumatic stress, among others. of being well-tolerated by patients. in the lab ACT incorporates aspects of other • discovering and testing new drugs We hope these new combinations will therapies such as cognitive behaviour help create a step change for people • trialling the best way to deliver therapy and mindfulness, and aims living with a glioblastoma, improving new drugs to these tumours. to help participants build a rich and quality of life and length of survival. meaningful life despite their ongoing difficulties. It also encourages them to engage with their painful experiences A LASTING LEGACY and move towards acceptance. Leaving a gift in your Will, no matter how small, can help us change the The results could have a big impact, course of how brain tumours are diagnosed and treated. Help us move extending the options for supporting further, faster towards a cure. childhood brain tumour survivors.

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to answer any questions and build sleep, very often. Fortunately, the rapport. After that, we’d do seven university pushed back the deadlines weeks of remote health coaching, and I was able to graduate from EMPOWERING consisting of a weekly 30-minute Durham with a degree in psychology. phone call. The patients would fill out as much as they could of Day in, day out PATIENTS TO a DREEMS diary, send it through, and we’d discuss what had worked, “I think the fatigue affects my what hadn’t, and what they wanted confidence more than anything. FIGHT FATIGUE to focus on next. I often doubt my ability to do things. On a day-to-day basis, just regular Q. Tell us more about the activity is quite draining. If I decide Fatigue is a common He put together an expert team ‘person-centred’ aspect to go shopping during the day, I’m always conscious of how easy it’ll problem for people to find out if person-centred lifestyle of health coaching. changes, including ‘health coaching’ be to get home. diagnosed with a brain (see below), are manageable for people This is a really important aspect living with a brain tumour and can help “I have to be aware of my limits. For tumour, but medication of health coaching. We weren’t The treatments in alleviate their fatigue. example, I recently met up with some for it isn’t very effective. setting any expectations on the old uni friends in London. It was great this trial put the person With our funding, Dr Ally patient of what they needed This was a multi-centre study which to see them, but just walking around first and looked at the to do. It was very much just Rooney at The University recruited patients in Edinburgh, was quite tiring. explaining the principles and then person behind the fatigue. and . If results of Edinburgh is analysing allowing the patient to decide what are successful, the study will lay the “I felt as if I was being anti-social, but Dr Alasdair (Ally) Rooney results from a trial to they felt able to do. EMMA’S I was so tired, I just couldn’t contribute evaluate ways of managing groundwork for a bigger trial, and could be a key step in discovering to the conversation. Even if they just started with one fatigue that don’t involve new, non-drug treatments for fatigue. small thing – like increasing their medicines. water intake from two to three Coping strategies Find out more at: STORY glasses per day – that often thebraintumourcharity.org/BT-Life created momentum and led to “Doing any form of exercise can help, them feeling able to do more. In 2015, Emma Mitchell from but it’s like lots of things in life, getting It’s about the person feeling Warrington was diagnosed with the motivation to do it is tough. a trigeminal schwannoma – a type Q. What’s your an inspirational lady who’s now a 27- in control of what they’re doing. of low grade brain tumour - and had “What I’ve learned is that, if I have background? year brain tumour survivor. Through I was supporting them to help her, I met Robin Grant, a senior themselves. two surgeries to debulk it, followed to walk to the shop to do something Q&A neurologist who’s also involved in by radiotherapy. She still lives with then taking a little detour via the park I became a personal trainer in 2004 fatigue on a daily basis. BT-LIFE, and Ally Rooney. Q. What was it like working gives me a little boost. with Garry Anderson, after leaving the Royal Marines. Very quickly, I realised health isn’t just with the patients? I became the lead health coach “When I was diagnosed, I was in “I have a small to-do list and ticking Lead Health Coach about exercise – nutrition’s involved on the study, and held my final the final year of my degree, so I had things off gives you a focus. It’s all for BT-Life as well. If you’re putting something I definitely think I’ve benefited coaching session just a few weeks to take a year out. When I came back about setting realistic goals, such in your body, that’s going to have an just as much from the patients ago. The team are now finishing up to my exams, I found the fatigue as doing some baking, or going for effect just like any medication can. I’ve worked with – their stories, collating all the data. quite frustrating. a short 5-10 minute walk. So there was a definite switch, for me, and the challenges they’ve gone to wanting to help people be healthier through – as they have from me. “I’m a perfectionist, so it was difficult Q. What does health “I’ve realised that regardless of what rather than just fitter. I worked on a list A lot of the patients were parents, to accept I couldn’t do everything – I do, I’m going to feel tired, so it’s the of the key fundamentals for human coaching involve? a lot of them were working. But I had to choose between work and little achievements that help.” health, and that was the birth of the these people had also been DREEMS model – drink, rest, eat, Some patients were randomised diagnosed with a brain tumour, exercise, movement and stress. to receive health coaching and so they had all the additional others weren’t – I was responsible challenges from that. It was inspiring. MAKE A DIFFERENCE Q. How did you get for delivering coaching to those in Glasgow and Edinburgh, as well I think our model is really a human involved in the trial? A donation of just £25 could pay for one hour with a specialist as supporting our NHS physio to health model. It’s scalable, and could nurse ensuring brain tumour patients have access to the best care deliver coaching at our third site in be used not just by the brain tumour When I moved to Edinburgh in 2009, possible. Help us pick up the pace of progress today. Make a donation: Manchester. We’d begin with an initial community but others too. Hopefully one of my first clients was thebraintumourcharity.org/donate 60-minute face-to-face consultation this is just the start – it’s exciting!

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When Brett had emergency surgery MY MOST IMPORTANT to remove the blood clot, Sherrie flew ROLE YET to from where she YOU NEVER THINK IT’S was on tour with Benidorm – Live! the Now Sherrie has become a High Profile spin-off of ITV show Benidorm. Supporter of The Charity, as Brett GOING TO HAPPEN TO dearly wants it to be his “legacy” “Chloe phoned me and said, ‘You to help raise awareness about brain need to get here now,’” says Sherrie. tumours. “I had no idea if my brother was still YOUR FAMILY going to be alive when I got there. “You never think it’s going to happen We all sat in the family room crying to you or your family, but this and praying he was going to make Loose Women and devastating disease can affect it through surgery.” Sherrie and Brett as children anyone at any time,” says Sherrie. Benidorm star, Sherrie Brett was in critical care for 11 days Hewson, reveals her “At first, there was a sense of sheer and in hospital for four weeks. The HOW BRETT COPES heartbreak about disbelief – I just couldn’t take it in. family are now researching clinical WITH HIS PROGNOSIS “wonderful” brother, More than all my roles in hundreds trials in hopes of extending Brett’s life of years in show business, becoming beyond his 12-18 months prognosis. 1. One step at a time Brett Hutchinson, an ambassador for The Brain Tumour “I am facing my own mortality - being diagnosed with Charity is my most important role.” you can’t take everything in at once a glioblastoma. or be strong all the time”. Tears glistening in her gentle blue eyes, Sherrie says she thinks about 2. My family’s love Now Sherrie has become Brett’s prognosis ‘every minute’ – “I’m blessed with an amazing family. a charity ambassador but they have vowed to ‘live in Chloe saved my life, Annie is my rock to raise awareness as the moment.’ and Sherrie and I are bound together Brett’s “legacy” to help by love and humour.” “Fear permeates everything – save other families their it’s always there overshadowing 3. Focus on the positive Brett and daughter, Chloe heartache. We spent a day everything we do. “I feel blessed I’ve lived a rich, full with them, Brett’s partner life until my 70s. It makes me so sad of 40 years, Annie, and “I don’t allow myself to look too far RAISING AWARENESS to see younger people and children into the future – it’s too frightening. with brain tumours.” their daughter Chloe. We all try to focus on the ‘now’ Now Sherrie and Brett feel “driven” because Brett is here now.” to help raise awareness. 4. Let your emotions out As Sherrie Hewson and her brother “If you want to cry, cry. If you want Brett sit chatting in his quirky tea Earlier this year, Brett was overcome “Sherrie will always be my Shez,” says to shout, shout. You can’t bottle shop, Characters, in Llandudno, north by the Parma Violets smell and also Brett. “People think there must be a it up all the time – you need a release.” Wales, it’s clear they adore each suffered fatigue and anxiety. He went ‘side’ to her because she’s an actress, other and enjoy that unique teasing to a GP, who said he was depressed but she’s the same lovely, down-to- 5. Live in the moment relationship and shared history Sherrie and Brett. Photo credit: Julian Hamilton Sunday People and referred him to a counsellor. earth girl she’s always been. “We all do our best to live in the siblings have. moment and cherish every second Brett’s main symptom was being Surgeons at Liverpool’s Walton Centre But then Chloe noticed the left side “I’ve always told my family I love with each other.” Squeezing gently-spoken Brett’s “engulfed” by a pungent, floral smell removed the whole tumour during of Brett’s mouth was slightly pinched them. Now I hug them that bit closer. hand, at 71 her senior by three years, – like Parma Violet sweets – coupled a nine-hour operation on April 4. and his tongue wasn’t moving properly We’re all doing our best to live in the Sherrie says, “Ever since I was a little with feeling he was in an “alternative when he talked. moment, but I haven’t got a bucket list. girl, I have idolised my wonderful big universe.” Three days later, Brett suffered I have all I want or need – my family. A CURE CAN’T WAIT brother. Everyone loves Brett and a massive bleed on the brain and had She took him to A&E at Glan Clwyd everything he touched turned to gold.” His daughter Chloe took him to A&E another operation to remove a blood Hospital in Rhyl on March 21, where “Now it’s about living the best life Help us move further, faster as instinct told her something was clot from the cavity where the tumour a CT scan revealed the 5cm tumour. I can in the time I’ve got left. What I do towards a cure. A gift of just But life was turned upside down in seriously wrong. Scans revealed he had been. During surgery, the tumour was to help others matters more than ever. £20 per month could pay for March when he was diagnosed with had a golfball-sized tumour. That removed from his right temporal lobe a day’s world-class research every a grade 4 glioblastoma – the most instinct saved her dad’s life as doctors He underwent radiotherapy and – which is the part of the brain that “It means the world to me to work with year. Make your donation today: common aggressive brain tumour said Brett was days away from death chemotherapy and had a stable controls the sense of smell, explaining The Charity and if sharing my story thebraintumourcharity.org/ in adults. due to swelling on his brain. scan at the end of July. the Parma Violets symptom. helps to save one life, it’s worth it.” donate

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LIVING WELL IN FOCUS new

Living with:be ginnings Introduction

Our supporters refuse to be defined by their brain tumours and have rebooted their lives.

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boredom while I was off work for six NEW HOBBY months having treatment. At first, I NEW BEGINNINGS Adam Carroll was nervous, but doctors said it was fine as long as I didn’t overdo it. Running helps me to process my thoughts and dilutes the stress Before my diagnosis, I couldn’t run AFTER DIAGNOSIS of living with a brain tumour. When for a bus – on my first attempt I barely I get in the zone, nothing matters but made it to the end of my road, but I‘ve putting one foot in front of the other, gradually built it up and now I’m like was a challenge, especially as I suffer Starting something striving to run further and faster. Forrest Gump! from anxiety, but I told myself every new student feels jittery - I wasn’t new after a brain Everything changed during a work I’ve had great support from The tumour diagnosis so different after all. trip to New York in June 2017 - one Charity, have raised about £4,500 in minute I was joking with someone, the half-marathons and I’m running for can be especially It took me about a term to adjust next I collapsed and came round with them in next year’s London Marathon. daunting, but these to living away from my family - I had Before my paramedics surrounding me. to phone my mum a lot during the first Running helps to safeguard my inspiring people few weeks, but I soon made friends. diagnosis, I I was blue-lighted to hospital where mental health – sometimes it feels show that the an MRI scan showed I had a brain like a stigma having a brain tumour Living with a brain tumour affects couldn’t run for tumour. as people can be afraid of how it will rewards can be my studies due to short-term memory affect your relationships and work. loss and fatigue - but I can sit exams the bus – now After biopsy tests revealed it was life-changing. a grade 3 (high grade) glioma, I had in smaller rooms and have extra time. Doing something new – it doesn’t have I could I’m like Forrest another operation five days later to be running – makes you feel less of to remove 95% of the tumour. I try to focus on the positive – I’m in a ‘patient’, so my advice is to go for it. I started running out of sheer reinvent myself. remission, I love my course and have Gump! become more comfortable telling people I have a brain tumour. But the company has been supportive STARTING UNI NEW JOB and I gained confidence quickly, it was Hannah Kinsell My advice to other young people Akua Appiah-Ampofo living with a brain tumour, nervous more about learning to pace myself. Starting university felt like I was about starting university, is to be After diagnosis with a meningioma I don’t believe employers want to reinventing myself. Previously, proud of how far you’ve come and in 2016 and surgery, I wanted to discriminate against people with brain I was always ‘the girl with the brain just be yourself. go back to work in HR, but suffered tumours - they’re just worried it will tumour’ - now I could choose who a crisis of confidence. have a negative impact on business. to tell and when. Now I’m about to start my third year and being a student has increased I found myself either not telling It’s all about raising awareness, When I was 15, I was diagnosed my confidence and independence. potential employers I’d had a brain educating them and working together. with a grade 4 (high grade) glioma tumour or being defensive about it. and had two brain surgeries and Luckily, a company I’d done work for My advice to job seekers is to be chemotherapy. Cancer stole before got in touch and offered me honest about your brain tumour part-time work as an HR consultant. Work has and needs – give employers a That was four years ago: I couldn’t my childhood, Right from the start, I decided to chance to be supportive. take it in - I had brain cancer and given me my be open and honest about my brain feared I wouldn’t realise my dream but I won’t let it tumour and the challenges I still face - Now I’ve been in my job for a year of going to university. if I overdo it, I suffer from fatigue and sense of and it has boosted my self-esteem. steal my future. a buzzing at the back of my head. But I got good grades in my GCSEs identity back. I know I can never be exactly the and A-levels and - encouraged I told myself that if they didn’t value same person I was before diagnosis, by my family - I was thrilled when me and realise that having a brain but it was important to me to resume I got a place at Goldsmiths University, tumour was only part of who I am, my career – I feel like ‘me’ again. London to study history and then I didn’t want to work for them. archaeology. In September 2017, I started my university course. If you’re going through a difficult time following a diagnosis, did you know you can get in touch with our free My first day was nerve-wracking but Information & Support Line? We’re here to answer your questions, provide support, or just listen. You can call exciting - overcoming those nerves our team Monday to Friday, on 0808 800 0004, or email: [email protected]

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FIVE WAYS TO CONTROL YOUR WHAT TO EAT SYMPTOMS DURING TREATMENT If your symptoms are making it painful to eat, Monika recommends talking to your doctor about the following options: steroid-related weight gain, snacking It can be hard to eat TRICKS TO TRY on fruit and veg sticks is a low-calorie way to fill up. well when you’re Monika admits that eating a balanced diet isn’t always as easy as it sounds, going through But if you’re not eating much, Monika especially if you’re not feeling well. recommends thinking about what you chemotherapy But there are a few tricks you can 01 can add, whether that’s butter on your try to make meals more appealing. If you have a sore mouth, or you’re or radiotherapy vegetables or a creamy dressing on suffering from ulcers, your doctor your salad. “This is a great way to get treatment. We asked “Try to eat protein-rich foods 2-3 can prescribe a soothing mouthwash. the goodness of the vegetables, while times per day as this helps to maintain an expert for advice adding some extra calories,” she says. muscle mass,” says Monika. “If you’re on how to get the struggling, choose scrambled eggs, When you can’t stomach solid food, fish pie, shepherd’s pie and mince nutrients that you soups and smoothies can be helpful. instead of steak, as these are need. “Try adding milk, cream, beans or easier to eat.” 02 cheese to soups,” advises Monika. “Smoothies are really popular, so If you’re having radiotherapy, ask Carbohydrates are an important One way or another, chemotherapy add nuts, peanut butter and whole your doctor about solutions that you source of energy, but you might and radiotherapy play havoc with your milk to increase the calories and can rinse around your mouth prefer white bread and pasta to appetite. Favourite foods won’t seem provide some good fats. (and swallow) to help with the pain. appealing if you’re suffering from wholegrain varieties. “Opt for fluffy white rice or mashed potato — both a painful mouth or throat, have a “If you’re really struggling to eat, are nice and soft,” says Monika. metallic taste in your mouth talk to your doctor who can prescribe or feel nauseous. nutritionally complete shakes like Can’t face a full meal? Try nourishing Fortisip or Foodlink.” Or, if you’ve been prescribed steroids, snacks like cheese on toast, yoghurt 03 you might struggle to control your or a milky drink. Take soluble paracetamol four times appetite and experience dramatic THE KETO DIET per day to ease a sore mouth and weight gain as a result. It’s best to avoid spicy or acidic foods, throat. like lemon, vinegar or pineapple, as Many people believe that the these can be painful to eat if you ketogenic diet (a very low-carb, high- According to Monika Siemicka, have a sore mouth. fat diet) can help treat brain tumours dietitian at Guy’s Hospital in London, and related seizures. But Monika says the most important thing that you However, if your main problem is taste, there’s no evidence that it works. can do to support your recovery is you might find that adding herbs and eat a balanced diet. 04 spices or choosing sharper-tasting “The keto diet is extremely restrictive Mix up a salt solution to rinse your foods helps your food to taste better. and difficult to follow. When people “There isn’t one specific ‘superfood’ mouth with after you eat. are going through treatment, that’s most important, and “Eating meat can be difficult if you a balanced diet is very important, chemotherapy won’t cause you have that metallic taste in your and maintaining weight is beneficial to be deficient in any particular mouth,” says Monika. “So think about — the keto diet works against these vitamin,” she explains. preparing a marinade, or eating cold goals. There’s nowhere near enough meats with chutney. Some people evidence to support it, so it isn’t “If you’ve lost your appetite, don’t 05 also find it helps to use plastic cutlery.” something I can recommend.” force yourself to eat as you used to, Check your mouth and tongue for it’s fine to eat little and often instead.” We all know that fruit and vegetables For more information on diet, visit: white patches. These can indicate are important. If you’re struggling with thebraintumourcharity.org/diet thrush, which can make food taste different. It’s easily treated. Words by Ceri Roberts by Words

22 ISSUE 21 ISSUE 21 23 LIVING WELL LIVING WELL SEASONS

TO BE “Vitamin D supplements can “My golden retriever makes me vastly help with mood changes smile every day.” as the body gets less sunlight. Rhonda CHEERFUL I swear by them and can tell within a few days if I haven’t been taking them.” “I just think of three positive thoughts or three things I can Alan Everyone reacts I find it do every day. Doesn’t matter how differently to the small or big they are. Just keeps me enjoyable to “Wear a hat in cold weather. positive and happy that we are here.” changing of the My scar was very sensitive Lynn go for an for the first couple of years seasons. At this and felt as though it was being time of year, the evening walk. stirred with a wooden spoon, “If people want to visit, ask them if that makes sense.” to come when it’s later so you can chill in the air and enjoy the daytime and have company It can be very Lorraine the crunch of when it turns dark.” refreshing in Amanda leaves underfoot “A little bit of exercise, even if is comforting and you’re feeling really tired, makes the cold night a huge difference in your mood. “Notice the little changes in woods cosy for some, My son came out for a short walk and gardens as autumn turns into air, and quite every day while on radiotherapy winter.” full of the promise last winter, it helped his mood Lisa of Christmas. often everyone massively.” else is inside so Karen But we also know that for others, the colder weather and lack of it can be quite “Wrap up warm and have a nap sunlight as the days grow shorter on the sofa in the afternoon.” can be challenging. Many people peaceful. speak of the ‘seasonal blues’. Some Aileen IF YOU NEED A GUIDING might even be affected by the more Tasha HAND, OR SIMPLY HAVE serious S.A.D. (seasonal affective “Have a hot chocolate, watch disorder), a type of depression that films on the sofa or in bed A QUESTION, YOU CAN often arrives with winter. or go to the cinema. Put up fairy GET SUPPORT FROM US lights and candle decorations.” IN A NUMBER OF WAYS When you’re dealing with a brain tumour diagnosis, these effects Alma can be more pronounced. For • Visit our website for example, a lack of vitamin D may “Take up a new hobby like knitting, information on almost every make you feel more unwell than you reading or playing board games aspect of living with a brain would have otherwise. Or if you’ve with family and friends for an hour.” tumour diagnosis. lost weight due to the tumour or its Amanda • Use our LiveChat function via treatment, you may feel the cold more. the website - you don’t even need to talk to anyone. Now that the holidays are over, we “Meeting up with friends and family asked people living with a brain for a coffee and a good old catch up • We run a free weekday tumour, or caring for someone is the perfect remedy for me when Information and Support line, who is, for their words of wisdom feeling down in the winter months!” between the hours of 9-5. on coping with these changes. Belinda • Email us on: support@ Here are just some of their tips. thebraintumourcharity.org

24 ISSUE 21 ISSUE 21 25 REGULARS REGULARS

You’ll be convinced you’re ‘just tired’ forges a career in film making. but go to the doctors to ‘be safe.’ Your diagnosis will show all that truly matters is your family and friends. TO MYSELF Scans will reveal you have a low grade Being ill will highlight who your real astrocytoma in the part of your brain friends are and you’ll feel blessed that controls speech. to have a close circle of friends who’ll BEFORE THE DIAGNOSIS go to appointments with you. After surgery in 2011, you’ll have MRI scans every three months, relieved And you’ll be grateful for the each time when they’re clear. ‘outstanding’ care of the NHS.

Then in July 2013, a scan will reveal In October 2018, a scan will reveal another astrocytoma. Six months an inoperable part of the tumour is later, you’ll have surgery to remove feathering into your brain, and you’ll it and a rare cancerous tumour inside be on chemotherapy tablets for a year. your low grade tumour. Now you’ll learn exactly who you are and want to be. You’ll then have seven weeks of chemotherapy and radiotherapy, Before diagnosis, you were frivolous followed by six months of and confident and, after living with chemotherapy. a brain tumour for eight years, you’ll Vicki before diagnosis feel blessed to be alive. After a year of being off work, you’ll Dear Vicki, go back on screen bald because You’ll say yes to everything and you’ll want to show you’re still you; embrace new experiences like setting It feels surreal talking to the ‘old’ and you’ll talk about The Brain Tumour up a Salsa class – why wait? you. I don’t want to frighten you, but Charity live on air to raise awareness. soon you’ll be diagnosed with a brain Besides, you’ll hate wearing wigs and Despite everything you’ll go through – tumour. head scarves, and ask yourself, “Who or because of it – you’ll live life to the am I doing this for?” full and cherish every moment. From that freeze-frame moment you Most of all, you’ll be so very proud of hear a doctor break the news, “I’m Vicki in 2019 You’ll decide if it makes other people the person you’ll become. sorry..,” the ‘new’ you will choose to uncomfortable, it’s their perspective live in the moment. that needs to change.

Part of me wants to urge you not to Take a deep breath, it’s going to be take your health for granted or moan tough but you’ll have more grit than about silly little things, like we all do, you ever thought possible. but a bigger part wants to hold you close and tell you you’ll be scared. But Your strength will be fuelled by love I want to tell you that you’ll emerge and utter protectiveness for Louis, a stronger person who believes in the who’ll be 16 when you’re diagnosed. power of hope. ‘He’s lost his dad, he can’t lose me,’ will become your mantra. Rewind to 2009 and you were happily married to Tony, adored your son Louis As Louis gets older, you’ll be enveloped and loved your job as a presenter on by his love and support. When you The Jewellery Channel. lose your long, dark hair – a huge part of your heritage and personality - Then Tony died suddenly from a heart he’ll give you a hug and say, “You rock attack at 42, and you were left a Vicki with her son, Louis bald, Mum!” widow bringing up a heartbroken boy. Gratitude will be tinged with guilt – SHARE YOUR STORY Oh my, I know you’re reading this now, you’re his mother, it should be you thinking; ‘Haven’t we been through looking after him. As you get stronger, If you’d like to share your story with us, we’d love to hear from you. enough?’, but you’ll be live on TV when though, you’ll be there for him, as he Visit our website and tell us more: thebraintumourcharity.org/share Vicki Browne suddenly you won’t be able to get your words out properly. 26 ISSUE 21 ISSUE 21 27 REGULARS REGULARS Ask the Experts

Children diagnosed with a brain WHAT ARE THE HOW ‘LONG’ ARE IS IT TRUE THAT Got a nagging IS IT COMMON tumour at a younger age are question that’s FOR MOST BRAIN more at risk of long-term cognition SIDE-EFFECTS OF LONG-TERM RADIOTHERAPY or communication difficulties. CHEMOTHERAPY? EFFECTS? AFFECTS YOUR bothering you? TUMOUR PATIENTS This is because the developing brain is particularly vulnerable. FERTILITY? Do you need some TO HAVE COGNITIVE Toni Sidwell, Information Ingela Oberg, Macmillan reassurance PROBLEMS IN It can often take years for subtle Development Officer, The Lead Neuro-Oncology Nurse, Dr Sarah Jeffries, about something EDUCATION? deficits to become noticeable Brain Tumour Charity Addenbrooke’s Hospital, Clinical Director Cancer, in survivors of a brain tumour. you’ve been told? Cambridge Addenbrooke’s Hospital, Michelle Smalley, Clinical They can show up when children As chemotherapy works on healthy Look no further! start school, make new friends, Cambridge cells and tumour cells, it often causes Long-term side-effects depend Psychologist (Paediatric transition to high school, or go Just ask us the some unpleasant side-effects. Some on what treatment (if any) you have Neuro-oncology), University for their first job. Ideally all children The short answer is sometimes. of the more common ones are: had. Some side-effects from surgery question and should be monitored throughout Patients with primary brain tumours Hospital of Wales for example are temporary and most development, with early, ongoing can be at risk of becoming infertile we’ll find the right • Increased risk of bleeding due to will recover within 6-12 months (e.g. intervention and support. because of the potential long-term Every child and tumour type is a low platelet count (platelets are nerve regeneration, tender scalp, person to answer side-effects from surgery different and there are many factors cells that help the blood to clot) hair regrowth). Many children learn to overcome these or radiotherapy. which impact on the long-term it for you. sometimes subtle cognitive difficulties, • Anaemia outcomes in children who have If you are on a watch-and-wait others may require additional support Occasionally a tumour will also had a brain tumour. • Tiredness (fatigue is very common programme and haven’t had surgery, in school, but I have had a number affect the pituitary gland (the gland – see p14 for more information) some of your side-effects may be of patients get fantastic results in that produces hormones needed These include the direct effects from the tumour itself (depending on their GCSEs or A levels and go on • Nausea (but some people for fertility). of having a tumour on the delicate size and location) and can sometimes to university. don’t feel sick at all) structures of the brain and the be managed with medication. Other Chemotherapy (temozolomide pressure inside the skull caused • Hair loss long-term effects - such as peripheral If you or your child has been affected and PCV) that’s commonly used by the tumour, the length of time nerve damage (neuropathy) - normally by a brain tumour, you can find • Sore mouth in the treatment of primary brain the tumour has been growing in the recover once you stop chemotherapy, more education resources on our tumours can also impair sperm brain, the child’s age, how aggressive • Change in taste / appetite. but fatigue can be indefinite. website: thebraintumourcharity.org/ production in men, or lower the pool the tumour is, its symptoms, and the education-resources You may find that you experience of ovarian oocytes in women, leading treatments required to combat it. The best advice is to speak to your all or very few of these – all side- to infertility. effects vary from person to person specialist nurse or key worker who Some children may struggle with and from drug to drug. can guide you on the likely length cognitive and communication of any side-effects and how to best difficulties, including their IQ, visual- Side-effects tend to disappear manage them. Don’t be scared to ask SEND YOUR QUESTIONS perceptual skills, attention, memory, gradually over time after treatment, us, it really is what we are here for! vocabulary, grammar, social skills but if you’re concerned about any Do you have a question? Send or problem-solving skills. of your side-effects, speak to your it to us via email: comms@ healthcare team. thebraintumourcharity.org and Their treatment may also cause lasting we’ll try to find the expert for the fatigue, so full-time education may be For more in-depth information, have job. Unfortunately, we can’t ? a challenge and therefore keeping up a look at the ‘Diagnosis and treatment’ guarantee we’ll answer every with classwork and their peers may section on our website. question and we’re not able to be difficult due to their fatigue. reply to everyone individually.

28 ISSUE 21 ISSUE 21 29 REGULARS REGULARS KEY DATES EVENTS AND MEET UPS

Saturday 21 Young Adult Meet Up in Birmingham We wanted to thank you and the team Working with these incredible Young September 2019 Sunday 29 The Twilight Walk Warwick for the Trafford Family Day. Noah loved Ambassadors (and all of the other it and it was such a great event. All amazing team members) is one of the team were brilliant and so lovely, my favourite things to do. We have Check website Virgin Money London Marathon ballot results announced offering tea and juice constantly. managed to turn our darkest times Sunday 6 The Twilight Walk Windsor into something incredible… all thanks October 2019 I’ve only found The Charity recently to The Brain Tumour Charity for giving Saturday 12 Young Adult Meet Up in Edinburgh and I wished I had met you earlier. us this opportunity! Sunday 13 The Twilight Walk Edinburgh It’s wonderful what you all do and so reassuring to know you are there. We’ll keep working until we get a cure I know in the future, when Noah starts for brain tumours. I love this photo November 2019 Saturday 23 Christmas Family Day at Marwell Zoo, Hampshire to understand what he actually went from the Kidderminster meet up with through, that you’ll all be there for us. a few members of the Ambassador Saturday 7 Christmas Family Day at the Snowdome, Tamworth team! Thank you all for making this December 2019 Saturday 14 Young Adult Meet Up in Donna journey so amazing! Pictured: Donna and her son Noah Shane Saturday 25 Young Adult Meet Up in Manchester Pictured (left to right): Elliott, Sunil, January 2020 Shane, Chantal, Sabrina and Abigail at the Big Meet February 2020 Saturday 29 Young Adult Meet Up in

Sunday 15 Bath Half Marathon March 2020 Friday 20 Young Adult Meet Up in Edinburgh rs lette Sunday 29 London Landmarks Half Marathon

Sunday 5 Greater Manchester Marathon Sunday 5 Paris Marathon April 2020 Sunday 19 Marathon The leaflets from The Charity were Sunday 26 Virgin Money London Marathon so helpful, I used them to cross reference with medical letters Friday 15 Celebrating You Awards and the discharge report. It is only Thank you so much for all your help in the last few weeks I have wanted in the last seven years since my op. May 2020 Sunday 24 Edinburgh Marathon Festival to read information about Leila’s Knowing I have you to turn to has tumour, and I didn’t want to go on the kept me as sane as possible and Saturday 20 Snowdon by Night internet because I was scared what I wouldn’t have come as far as this June 2020 I would read. The information from without your help. The Charity was really helpful because Saturday 27 February to Saturday 6 March 2021 Sahara Trek of the clarity of the language used. Lots of love February 2021 r you Sarah Fiona Pictured: Sarah and her daughter Leila Pictured: Fiona To find out more about any of these events, visit our website: thebraintumourcharity.org

30 ISSUE 21 ISSUE 21 31 NEWS Help us move further, faster towards a cure!

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