brainstrust Logbook 10 by brainstrust

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Logbook THE MAGAZINE FROM

brainstrust – the brain cancer people

First, we are people. Our new strategy: bringing you practical ways to live better with a brain tumour. l New workshop programme l New and improved resources

A tale of ‘blisters and sore legs but also team spirit, joy and a huge sense of achievement’. 83 superheroes tackled 50 miles in 2 days, on foot, to support people affected by a brain tumour.

Brain tumour support 24/7.

Call 01983 292 405 or email hello@brainstrust.org.uk.

www.brainstrust.org.uk

Welcome to brainstrust’s 10th Logbook More than 60,000 people in the UK are living with a devastating brain tumour diagnosis. 40% of all cancers spread to the brain. It is the biggest cancer killer of children and adults under 40.

UT THESE FACTS DON’T HELP YOU when you hear the words ‘you have a brain tumour’. A brain tumour diagnosis brings with it the double impact of a cancer diagnosis and a progressively debilitating neurological disease. The treatment is complex and lifechanging. Diagnosis brings with it fear, isolation, disempowerment and a loss of control. People with a brain tumour in the UK fall into the chasm between improving clinical care and the quest for a cure – this is where brainstrust helps.

brainstrust is the UK’s brain tumour support charity. We know that when you hear the words ‘you have a brain tumour’, you need support from people who not only understand the fear, confusion and isolation but can empower and resource you to overcome it.

Between 1 April 2018 and 1 April 2019, your support has helped:

Thanks only to your support and the tireless work of our team and volunteers, we are able to provide personalised support 24/7 from the point of diagnosis and create resources that help people with a brain tumour to become stronger. We also work with hospitals and researchers in the clinical setting to secure the best care possible for people. And because we truly understand, we’re able to campaign for the brain tumour community to help solve real issues. In the last 13 years, we’ve helped thousands of people on their brain tumour journey. And it is only with your support that we can help even more of those that need us.

1,039

401

30,000

2,429

More confident

Less alone

More informed

Better connected

new people access coaching via our 24/7 helpline

people attend a Meetup or workshop

use brainstrust’s accredited online information and support

people help and support each other in our online community

brainstrust’s impact l

5.0

brainstrust’s support drives holistic and balanced improvement in people’s well-being across six clearly defined impact indicators. On average, people progress one whole point, or 23% (1.13/5), to the positive, having received support from brainstrust. This is despite being in a situation where the ‘new normal’ is often devastatingly different from the ‘old’ one. Our service is creating the most impact in addressing isolation and building communities for people with a brain tumour. Beneficiaries are reporting a 28% improvement (1.44/5) in feeling part of a community, and are feeling 22% less alone (1.08/5). There are outliers where significant progress has been made, but this impact is ‘softened’ when we are reporting on aggregated data. Where possible, case studies are sought for these cases.

4.5 4.0 3.5

Engaged with clinical care

3.0 2.5

Part of a community

2.0 1.5

Resourced

On top of things

Key Initial Latest

Supported

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The latest resources to help you live better with a brain tumour We’re proud of our resources at brainstrust. They’re co-produced by you, our community, and they are all produced in line with the rigorous NHS Information Standard process.

be assured that you are on the right pathway, or feel confident exploring further options

understand how brainstrust can help.

The brainstrust Patient Guide – updated

Brain tumour Know Hows

Our Patient Guide is based on the NHS and National Institute for Health and Clinical Excellence (NICE) guidance. It has been updated and recently received official NICE endorsement. It helps you understand: l

what happens at each point in the brain tumour pathway (i.e. diagnosis, treatment, followup care) and what the optimum standard of care is at each point what else brainstrust thinks you can expect – to help you make the most of the resources around you what questions you should ask clinicians

l what

brainstrust can do to help.

Proton beam therapy With the opening of the UK’s first proton beam centres this year, it is crucial to have independent information available on the treatment and what it offers. It is also important to have a balanced view that puts PBT in context with respect to other treatments. These resources will help you: l

be more informed and engaged in your situation

When it comes to brain tumours, accessing clear and easy-tounderstand information can be difficult. There is a great deal of conflicting information available that can leave you feeling confused and overwhelmed. We’ve produced the brain tumour Know Hows so you can access clear and impartial information about current topics. These include how to get a second opinion, returning to work, cannabinoids and immunotherapy. All of our resources can be accessed online at www.bit.ly/ brainstrustresources. Or we can send you hard copies. Just email hello@brainstrust.org.uk.

Divided into eight sections, it is useful for any patients and carers as they embark on each stage of their journey. You can select the sections relevant to you and your journey.

Leave a gift in your will for brainstrust A will is your opportunity to make a lasting and positive difference.

Being able to provide some security for those you love the most through your will is a great relief. Once you have done this, please consider leaving brainstrust a gift in your will. Your gift to brainstrust will help the thousands of people who will be diagnosed with a brain tumour in future generations. If you have any questions about leaving a gift in your will, please email hello@brainstrust.org.uk. LO G B O OK: ISSU E 1 0 – SE PTE M B E R 2 019

Kickstart your legacy journey by writing your will today. You can do so from the comfort of your own home, thanks to our partners at Legal Wills. Visit our website for more information: www.bit.ly/ brainstrustwills.

We know. Not knowing what the future holds.

It’s taken away your ❝ independence, hasn’t it? And you don’t think for one minute that it’s this sort of stuff that’s going to really impact, but it does. Angela, carer

Life with a brain tumour: YOUR STORIES Recent news following the sad passing of Dame Tessa Jowell tells us that tens of millions of pounds are being invested in brain tumour research in the coming years and that this figure will increase once the research infrastructure is in place.

HIS MEANS THAT IMPROVEMENTS in brain tumour treatment will be accelerated, and a cure for some may even be on the horizon. This is amazing news, and a real source of optimism that future generations will be spared from the devastation that comes with a brain tumour diagnosis.

A cure will help people in the future. When you’ve just heard the words ‘you have a brain tumour’, you need help today. Beyond the hospitals, life-changing treatment and waiting for scans, the day-today challenges make life with a brain tumour confusing, lonely and fearful. And that’s where brainstrust comes in. We’re here to help you live life with a brain tumour. Back in November, we spent the day with six incredible people whose lives have all been affected by a

brain tumour. Some had received a diagnosis themselves; others had experienced a loved one being diagnosed. Despite differences in circumstance, diagnosis and prognosis, between them there was a unanimous sense that when living with a brain tumour, it is the little things that stop you getting on with life as you once knew it. These are some of the hardest things to overcome. From giving up your driving licence to memory loss, their frank and honest

❞

conversations are a reminder of how important it is that the impact of a brain tumour on your everyday life is given parity in clinical discussions by the clinical community.

People like brainstrust ❝ can help us see the road ahead. ❞ Pablo, patient

It’s not easy, but we’re here to help you adjust to the new normal that you find yourself navigating when you or someone you love is diagnosed with a brain tumour. With proper support, people have a greater understanding of their diagnosis, know the questions to ask their clinical team and aren’t afraid to challenge assumptions made about life after diagnosis. And you can count on us to always fight for these conversations to be heard in the wider circles regarding research into brain tumours.

You can watch their conversations on our website at: www.bit.ly/yourbtstories.

I struggle with not ❝ being the same person that I used to be. ❞ Sharon, patient 4

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First, we are people. Our new strategy.

So you can expect this from our support:

The last five years: In 2013 we set out to meet an unmet need and establish brainstrust as the supportive charity for people with a brain tumour, and their loved ones. The landscape consisted of a small number of relatively new organisations whose primary purpose was to raise funds for and to fund research projects. There was some regional or low-impact support available. The need for a highimpact, nationally accessible support service was clear. With this goal, we have worked tirelessly with our community to grow brainstrust into the organisation that is here to help people live life with a brain tumour.

The next five: We are here for a world where people with a brain tumour are involved, resourced, supported, confident and connected. They are living the life they want, because they are people first, and patients second. We are here to make life better for people living with a brain tumour as they work to establish their ‘new normal’ in society and live the best life possible for them in this new space.

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Before we are patients, ❝ we are people. And when

we are patients, we are only patients for a small time. We want to do things that people want to do, not always the things that patients have to do.

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Caroline Hope, partner and director of social care, Deloitte UK Yes, charity is expected to solve society’s big issues. A future cure for brain cancer falls into that bucket. But in the face of recent and significant shift in this space, we remain firm in our belief that charity is also here to help with the little things – the things that are overlooked, that make life better when you or someone you love has been diagnosed with a brain tumour.

What does this mean for you, our community? Over the coming five years, we are doubling down on our commitment to help you today, UK-wide, to brave

There will be more workshops to help you tackle the challenges a brain tumour brings.

Support and coaching will be increasingly tailored to your specific journey.

Events will be focused on what you care about.

You will have more community-driven resources.

And this from our fundraising: l

You’ll be incredibly well supported on your journey.

Opportunities will be more tailored to your interests.

We’ll make clearer the impact that you are having.

the day-to-day challenges that make life with a brain tumour so hard. It is these challenges that take away from everyday life, that turn us from people to patients and remove the magic of the ordinary. These challenges medicalise life with a brain tumour, a time when living life and the magic of the ordinary is more important than ever before.

Choose Grey. Change Lives. E

VERY YEAR, 11,700 people hear the words ‘you have a brain tumour’. This could happen to any of us. That’s why Wear Grey is back, and it’s more important than ever.

Every day, we hear harrowing stories about personality change, debilitating fatigue, memory loss, fear between scans, and the isolation people feel following such a devastating diagnosis. With you on board, we can continue to support those who need us most. Every single day of the year, our expert and passionate team is

My husband isn’t ❝ the man I married any more. ❞ brain tumour carer

On 1 October each year, we Wear Grey, and 2018 was no different. Thousands of people came together across the nation to raise awareness about the ‘invisible’ symptoms a brain tumour can cause. Memory loss, fatigue and loss of identity are just some of the problems a brain tumour diagnosis can cause, and Wear Grey is our opportunity to let the world know.

creating a better world for people living with a brain tumour, and their families. In our efforts to improve brain tumour care, we work with hospitals and public bodies across the UK to create change. We publish vital resources to help people understand treatments and choices, and we help people live life with a brain tumour to the fullest with our expert coachled support. Our caring and highly trained support specialists are just a phone call or email away and can be contacted 24/7, meaning no one is ever going through their journey alone. Join our mission, so we can continue to help thousands more people after they receive the devastating diagnosis of a brain tumour. Simply pick a day to Wear Grey in the first week of October! Let’s come together. Let’s share our knowledge. Let’s empower the world to understand. Just because we can’t see it, doesn’t mean it’s not there.

Find out more and get your free fundraising pack at www.brainstrust.org.uk/wear-grey. LO G B O O K : I S S U E 1 0 – S EPTEM B E R 2 0 1 9

TEAFEST or G&T Fest: how did you take yours?

OR SOME, IT WAS A MORNING OF TEA, COFFEE AND CAKE. For others, a glitzy evening based around the country’s favourite tipple, gin. Whatever the beverage, we came together to show people affected by a brain tumour that they are not alone. Here are just some of the events that our incredible community hosted in support of the 60,000 people living with a brain tumour in the UK.

Georgina Lees was diagnosed with a brain tumour at the age of just 14. With brainstrust being a charity close to her heart, she decided to take part in the first ever G&T Fest. Georgina hosted the event at Seashore Cottages in Devon and invited friends and family to join her for an evening of live music, fabulous gins and a fantastic raffle. Georgina’s event was a roaring success, with people coming together to show their support for Georgina and others affected by a brain tumour, raising the wonderful total of £1,400!

Teresa Ann Green and Sally Gale joined forces to hold a super TEAFEST event in their local community at The Woodcote Flying Club, Wallington. Attendees were treated to tea, coffee and a wide selection of delicious treats, buns and cakes, all while showing their support to the brain tumour community. Thanks to Teresa, Sally and all of their guests, a brilliant £300 was raised!

The Evanson family invited their friends and the local community to join them at The Vic in Hitchin for their G&T Fest. Taking place in the pub’s barn, a fantastic crowd

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TEAFEST is one of our annual campaigns, held each February, where people come together for a cuppa and to show their support for people affected by a brain tumour. This year, however, it had competition, as we launched G&T Fest and asked you to decide how you would take yours.

turned out to show their support for the Evansons and brainstrust. Milli Evanson, who led the organising of the event, said, ‘The support we received from friends and family was overwhelming. The whole evening was a huge success. Since my dad was diagnosed with his brain tumour six years ago, many people have lost contact with us. But the event was wonderful, hearing people talk openly about brain tumours and my inspiration of a dad.’ As well as raising awareness and encouraging people to talk about brain tumours, the Evanson family raised an amazing £1,085!

EST F A E T a brew t e s mak ainstru r for b

Practical ways to live better with a brain tumour We’re here to help you live your life with a brain tumour, and a key part of that is feeling informed about tackling the issues that matter to you.

support group and in many calls to our helpline, we wanted to bring in an expert speaker to dispel the myths and provide some much-needed clarity on this controversial topic. Dr Wai Lui, a research scientist at St George’s University Hospital whose research is on alternative treatments for cancer, agreed to deliver an information session for us in London. This was so well received we will be delivering our cannabinoids workshop across the country, and we have written a Know How on the topic: brainstrust.org.uk/knowhows.

OU’VE TOLD US that you really value the opportunity to meet other people going through a similar experience to you, and you’ve also told us how much more in control you feel when you’ve attended a brainstrust workshop.

Managing fatigue We know that one of the most frequent and distressing problems described by people living with a brain tumour is fatigue, and so 2018 saw our fatigue workshops rolled out across the country. These workshops are designed to complement our revered fatigue resource, My Fatigue Book, and help our community to understand fatigue and learn about effective strategies to own the fatigue, rather than it owning them.

Building strength and resilience We’ve also continued to offer our popular coaching workshops, which help our community to feel stronger and more resilient with positive tools for communication. You’ve told us that this is really helpful for taking control of challenging conversations with healthcare professionals and others while navigating the brain tumour journey.

in the pursuit of drawing, gaining a valuable mindfulness tool to take home with them and practise. We are grateful to artist Michelle Charles for so thoughtfully facilitating these workshops for us.

Using food to support optimum health In May we held a specialist nutrition workshop. Author of Eat to Outsmart Cancer and a cancer survivor herself, nutritional therapist Jenny Phillips delivered an informative and engaging workshop to help attendees understand how diet can support optimum health when living with a brain tumour diagnosis.

Cannabinoids – separating fact from fiction For 2019 we have enriched our workshop provision by further drawing on the expertise of external speakers. As the topic of cannabinoids began to dominate the national media landscape, it became a much-debated topic within our community too. With the subject much discussed on our Facebook

So what’s on the horizon for the rest of 2019? Responding to the needs of our community, we’re developing a mindfulness workshop. We’ve always been led by you, so please do let us know what you would like. Simply contact jane@brainstrust.org.uk with any ideas or requests that you have, and watch this space …

Taking time out

Thank you once again for today’s fatigue workshop. ❝ It was brilliant to meet you and the others. It was the first

In 2018 our mindful drawing workshops offered participants the opportunity to leave their worries at the door as they spent a few hours

Patient, Nottingham fatigue workshop

time we both felt comfortable talking about the tumour like this with people we knew understood us.

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The future for understanding brain tumours is bright Until recently, up-to-date, accurate population-level brain tumour data has been hard to get. brainstrust and Public Health England’s National Cancer Registration Service (NCRAS) have been working to solve this problem.

HE ‘GET DATA OUT’ PROJECT sees the regular release of new brain tumour data. This data will help us all to understand the impact of brain tumours at a population level.

It will see regular publication of anonymised brain tumour data on: l incidence l survival l treatment l

routes to diagnosis.

Why this is important The Get Data Out project is a step in the right direction, defined by the All-Party Parliamentary Group (APPG) on Cancer’s enquiry ‘Progress of the England Cancer Strategy: Delivering Outcomes by 2020?’. Here the APPG called for increased data transparency by making it more publicly available. They also emphasised that this must include rare and less common cancers and all aspects of the patient pathway.

Next steps There is much yet to be done. Data on its own does not tell a story. We will be working to bring narrative to this data so it is engaging and meaningful to you. Will Jones, chief executive at brainstrust, says, ‘The future is bright as we look forward to the next stages of this work. We are building on solid foundations to support PHE as they LO G B O OK: ISSU E 1 0 – SE PTE M B E R 2 019

release more brain tumour data that is interesting and useful to our community. The conversation will move on from traditional measures that focus on incidence and survival, to help us evidence at a population level the struggle to ensure that there is parity of care and that life is as good as it can be when you have a

brain tumour in the family. We are delighted to have been able to support Public Health England in this work.’

The story behind the data: non-malignant brain tumours (NMBTs) The recent report shows that 10% of people with a non-malignant brain tumour will die within the first year of being diagnosed. Despite this, these tumours are referred to as benign. There is little public understanding of the impact that these tumours have, very little information for these people, and supportive services are not stratified appropriately for those with a non-malignant brain tumour. Our report explores and explains this data, shines a spotlight on the experiences of people living with a non-malignant tumour and makes recommendations for what needs to be done for people with a nonmalignant brain tumour to have a better life with the disease. These recommendations include: l

The word ‘benign’ should not be used to describe these brain tumours.

There is a need for better public understanding, resources and information to support this group of people.

There needs to be more support that is better structured.

Support needs to be relevant and available at the right time.

There must be parity of voice between non-malignant and malignant brain tumour patients and their caregivers.

Visit our website to read the report on low-grade brain tumours and what needs to be done. 9

This year, over 80 incredible people took part in Follow the Seagulls, our epic 50-mile trek to raise funds and awareness to support people living with a brain tumour diagnosis. They walked in four stunning coastal locations: the Isle of Wight, Whitby, Fife, and new for 2019, Dartmouth. Battling their emotions and the elements, these superheroes knew that they were taking on a challenge. Whatever their reasons for walking, they were determined to see it through, and they raised a staggering £60,000 in the process.

A tale of ‘blisters and sore legs but also team spirit, joy and a huge sense of achievement’.

AM AND JAMES DICKENSON took on the challenge in Dartmouth. They’ve written up their experience of the weekend here. In late December 2017, our fouryear-old son was diagnosed with a brain tumour. Instead of spending a family Christmas in Devon, we spent it sitting in the paediatric intensive care unit at King’s College Hospital while he battled to recover from the gruelling 12 hours of surgery to remove the tumour. He subsequently received radiotherapy and chemotherapy to treat the early signs of metastasis of the disease to his spine. Happily, in October 2018, he received the all-clear and rang the end-of-treatment bell. 10

So when the opportunity arose for us to take part in a two-day, 50-mile trek around the South Devon coast to raise money for brainstrust, it seemed (pardon the pun!) a no-brainer! So this is how we came to find ourselves in Dartmouth, on a chilly April morning, at an extremely early hour, waiting for a bus to take us to the start line alongside 47 other intrepid explorers. Day one eased us in gently ... ish! The first six to seven miles wound from

the pretty village of Stokenham out to the coast, taking in some tantalising views of the sea in the distance plus some early hills! By mid-morning, we reached the coast and, turning east, kept the sea on our right for the rest of the day. Our destination was Dartmouth again, following the coast along past Start Point, Slapton Sands and the villages of Strete and Stoke Fleming before trundling down into Dartmouth. Sounds easy? Well, the total distance was around 25 miles, but the hills certainly made it feel like more at times. We were encouraged on our way by the fabulous brainstrust support crew, who popped up at regular points to keep us fed, watered and enthusiastic! The weather stayed fine, although an icy easterly wind blew at times, and there were certainly some exposed stretches of coast. Towards the end of the day, the sun finally managed to break through, making the last few hills that little bit more interesting! LO G B O O K : I S S U E 1 0 – S EPTEM B E R 2 0 1 9

Dartmouth

We celebrated surviving day one with a group meal in a local pub. I’m pretty sure everyone ate as much as they could, carb loading for the next day. A swift pint and an early night were pretty much the order of the evening, as everyone was aware that the morning of the second day contained some seriously strenuous hills and would tax tired legs to their limit. Sunday morning dawned, and that easterly breeze certainly hadn’t dropped. The short ferry journey across to Kingswear was chilly, but as the first mile of the day was the steep climb up out of the village, we soon warmed up! The morning’s walk was every bit as challenging as we had expected. The beautiful, rugged coastline provided spectacular views, but just as we reached the top of one climb, the path would plunge us back down to the next cove at sea level again! Although the going was tough and there was a lot of muttering and head shaking, the general air of camaraderie and team spirit was still strong, with everyone encouraging each other as we battled through. The checkpoint at Man Sands provided a very welcome rest point before the last (for now) really big hill, and then it was on towards Brixham for lunch. By now, tiredness was beginning to set in, but it felt like we had done most of the hard graft and that soon we would be on the Greenway Ferry with Dartmouth in our sights. Sure enough, the ferry carried us safely across to Lower Dittisham, where we found (unsurprisingly!) another huge hill to climb up out of the village. We then descended steeply to a pretty creek within a mile or so of Dartmouth, the LO G B O OK: ISSU E 1 0 – SE PTE M B E R 2 019

Whitby

sting in the tail being yet one more final hill to defeat before the home straight. I think everyone participating had their own thoughts about that particular hill, and none of them are repeatable here! And so downhill to the finish! Back into Dartmouth, the finish line and medals, and drinks at the pub to celebrate with our new friends. The weekend was a fantastic mix of laughter, support, humbling stories and a true celebration of what we can achieve with determination and will power. Yes, there were blisters and sore legs, but there was also team spirit, joy and a huge sense of achievement. Would I do it again? Yes, in a heartbeat! When cancer enters your life, it becomes even more vital to make memories, and our weekend in Dartmouth has left us with some truly fantastic ones.

Fife

Isle of Wight

Thank you brainstrust for organising such an awesome fundraising event, as well as for being there for everyone affected by a brain tumour.

Fife

Have you got what it takes to tackle 50 miles to support people living with a brain tumour? Visit www.followtheseagulls.com for more information about next year’s events.

Isle of Wight

The sheer determination, strength and unity shown at ❝this year’s Follow the Seagulls treks has been incredibly

humbling and completely awe-inspiring. We hope that all 82 of our walkers look back on this experience with great memories and huge amounts of pride. With over £60,000 raised, Follow the Seagulls continues to show us what can be achieved when people join together for a cause they truly believe in.

❞

Anna, challenge and events coordinator

Catch up with ...

Khadijha is our support specialist for children and families, and has been busy growing the support that we provide for families affected by a brain tumour.

Bailey’s story

One of the families Khadijha has been supporting is that of eight-year-old, football-mad Bailey.

AILEY’S SYMPTOMS BEGAN in spring 2016. He had headaches, followed by vomiting and feeling overwhelmingly tired. Initially, it was thought that these symptoms were the result of migraines. However, an MRI was scheduled to rule out anything suspicious. In early December, Bailey welcomed his baby sister into the world, and on 18 December he had his MRI scan. ‘A few hours later, our worst nightmare was realised when they confirmed Bailey had a brain tumour. It was too early to know the type, but Bailey was admitted to hospital and kept in for a number of days to have multiple scans done’ – Bailey’s dad, Stephen.

‘As soon as Bailey came home from school and discovered his brain box that brainstrust had very kindly sent to him, he was so happy, with a smile on his face that lit up the room. He loved the items that were inside. He said he’s going to use the stress ball when he has his injections when he goes for his next scan. We were overwhelmed by all the thought and care that went into producing this box.’

Our little brain boxes are tailored to each family, and there’s something in there for everyone. Sometimes it is the smallest resources that make the biggest difference. If a little brain box would help you and your family, or you’d like some support, email khadijha@brainstrust.org.uk.

Further scans showed that it was a cerebellopontine angle (CPA) meningioma. Due to its close proximity to his optic nerve, surgery would be very tricky, and so Bailey is currently on active surveillance (commonly referred to as ‘watch and wait’). ‘Bailey is like any other eight-year-old: football mad, full of energy and loving life. To look at him, you would think he is fine, but he remains on the watch-and-wait list and is closely monitored.’ Stephen reached out to brainstrust because as Bailey is getting older, he is asking more about brain tumours and wants to learn more about living with a brain tumour. 12

Watch and wait: When low-grade tumours are slow-growing, unlikely to spread and aren’t causing many symptoms, people may be referred to the ‘watch and wait’ approach. This means their tumour will be monitored via regular MRI scans and symptoms will be discussed with a specialist doctor. This is instead of starting immediate treatment that may cause significant side effects that are likely to be worse than the symptoms. This activemonitoring approach will show if the tumour starts to grow or if symptoms worsen, which may result in the start of treatment. LO G B O O K : I S S U E 1 0 – S EPTEM B E R 2 0 1 9

KS2 children brighten up brain boxes for little brainstrust

OU MAY HAVE NOTICED that the little brain box Bailey received is colourfully decorated. That’s thanks to the lovely pupils of Russell Hall Primary School in Queensbury, West Yorkshire. The school knows only too well how a brain tumour diagnosis can affect the life of a child and their family. Amelia, a student at the school, was diagnosed with a brain tumour in early 2018. Vicky, Amelia’s mum, knew the school would want to get involved with the little brain box project. ‘The school have been a constant source of support for us while dealing with Amelia’s diagnosis and subsequent treatment. Everyone has been rooting for Amelia, and they have all welcomed her back to school with such care and compassion.

that the brain boxes bring a little bit of joy and a lot of hope to families at such a difficult time.’ The little brain boxes designed by the pupils of Russell Hall have now all been sent out. They were so appreciated by the children and families that received them.

If you know a school or a children’s club that would be interested in decorating more little brain boxes, please email khadijha@brainstrust.org.uk.

‘The brain box was gratefully received when we found out Amelia had a brain tumour, and it made us feel like we weren’t alone. Thank you to the children who took great care in decorating the boxes. They have put such care into thinking about making other children in Amelia’s position happy.’

A new ambassador for little brainstrust

So the pupils kindly gave up 30 minutes of their lunchtime every day for a week to decorate the boxes with drawings of characters such as Harry Potter, SpongeBob SquarePants and The Simpsons.

Russell Hall’s headteacher, Andrea Grist, said, ‘We wanted to show our support for Amelia and her family by doing something practical. It gave us a chance to talk to the children in school about Amelia’s condition, and within a day I had 30 volunteers to join the brain box club. I know from personal experience how important it is to get the right support and information when a family member is diagnosed with a serious condition, as my husband was diagnosed with a brain tumour 18 months ago. I hope LO G B O OK: ISSU E 1 0 – SE PTE M B E R 2 019

We’re delighted to announce Gabby Allen as our new ambassador for the work of brainstrust and little brainstrust with families affected by a brain tumour. ABBY’S FATHER passed away after being diagnosed with a brain tumour in 2012. She has spoken movingly about her family’s experience and is passionate about raising awareness of the impact of a brain tumour diagnosis on a family. ‘brainstrust were there for my dad and us throughout his fight and afterwards. We know only too well that a brain tumour diagnosis turns your world upside down, and I want to be part of work that helps people living with a brain tumour and their families feel less afraid, less alone and more in control. It’s an absolute honour to be able to give something back.’ Thanks to an appeal on Giving Tuesday, followers of Gabby’s social media accounts were inspired by her story and set up regular donations to fund our work. We’re looking forward to working with Gabby on more projects in the future. Gabby and her dad, Mike, from Instagram @gabbyallen

In 2018, you were nothing short of incredible. From golf days to whitewater rafting, ultramarathons to music festivals, you united your local communities, bringing people together to raise funds and show their support for people living with a brain tumour.

How you have inspired us this year H

ERE ARE SOME HIGHLIGHTS of your unique and inspiring stories from 2018. Please know that every single fundraiser means so much to us and the community that we support.

Sharon Springall – junior football tournament

Howard Morgan – trekking in Nepal

Sharon has put on several incredible events for brainstrust since her diagnosis seven years ago. On Saturday 16 June 2018, Sharon did what nobody has done before – she organised the first ever brainstrust football tournament. With separate competitions for under 9s, 10s and 11s, the event played out at Hockley Community Centre in glorious sunshine. As well as football, there was a BBQ, raffle, stalls and a hog roast for the players and supporters to enjoy. The event raised an amazing £6,300 before Sharon found a company able to match-fund the first £5,000 – giving her an incredible final total of £11,300.

In 2018 Howard fulfilled a life’s ambition to trek in Nepal. He hiked for 11 days and is pictured here at the summit of Thorung La mountain pass, 17,769 feet above sea level! Walking for his eldest daughter, LO G B O O K : I S S U E 1 0 – S EPTEM B E R 2 0 1 9

Natasha, who has been living with a slow-growing brain tumour, he raised £2,200. ‘This is my way to say thank you for the wonderful information and emotional support she receives.’

Fiona Watt and Bill Brand When Fiona Watt lost her mum to a glioblastoma in 2018, she wanted to do something in her memory to help ensure other families received brainstrust’s support. Fiona was already taking part in the first Scottish Follow the Seagulls event. Her mum, Madge, sadly passed away just before the weekend – but this made Fiona even more determined to complete the challenge, and she raised a staggering £1,807. What’s more, this April she took on the Follow the Seagulls for a second year. It’s not only Fiona who is an inspiration – her dad, Bill Brand, wanted to fundraise too. With the help of his friends at his bowling club, Polmuir, in Aberdeen, he hosted a coffee morning, quiz and raffles, and raised £1,100.

That was no problem for Sileby Town RFC, who took part in a 10-mile, 10-tonne truck pull. Both the men’s and ladies’ teams took part, along with other club members and supporters, as the Vikings pulled the truck from Loughborough to Sileby in memory of a former player. Braving the elements, the Vikings pulled together and completed their challenge in 10 hours, and in the process were able to raise an amazing £6,373.50.

Tanya Malpass and friends – Big Derby Fun Run On what was a gloriously sunny morning, a sea of brainstrust T-shirts arrived en masse to take part in the Big Derby Fun Run. One of the group was Tanya, a retired A&E consultant whose outlook following her own diagnosis has always been centred on remaining positive. She’s even written a book about it! ‘We need support, sympathy and empathy. But we also need laughter!’ The inspirational group raised over £1,500.

Hulya Oztel – climbing Mount Triglav ‘brainstrust sent me a brain box, a lifeline after diagnosis. In addition to key information and books, there was a T-shirt, teabags, simple things that reminded me to look after myself. The most significant impact was the feeling that at last someone was listening.’

Sileby Town Rugby Football Club – 10-tonne truck pull

In May 2018 Hulya Oztel took on the challenge of a lifetime by climbing Mount Triglav. Accompanied by her son, Aiden, the pair headed to Slovenia to climb the country’s tallest mountain. Hulya wanted to fundraise for brainstrust so that others could benefit from a brain box like she had, and by raising an incredible £1,417.14, she raised enough to fund the cost of 35 brain boxes.

When there is a big group of people fundraising, it’s often hard to find a big enough challenge to match.

If you’d like us to share your story, please get in touch. Drop an email to eve@brainstrust.org.uk.

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Can we come to work with you? We are fortunate enough to have won the support of more of our friends in the corporate world than ever before.

CSC Recruitment continue to move mountains for our work, with members of their team taking on incredible challenges throughout the year that include bike rides, runs and even spending 24 hours in the woods. We were delighted that the Siemens Healthineers team nominated brainstrust as joint charity of the year in December, alongside Macmillan. The incredible fundraising committee have organised a Latin party and are planning a golf day and a charity car wash, as well as awareness events at HQ in Frimley. Another new and exciting relationship is with RoyaleLife Properties, who are making a regular contribution to our funds as well as actively fundraising across their 18 sites UK-wide. Working with companies is a fantastic way to raise funds and awareness for our work, and businesses who work with brainstrust can benefit from improved public relations, enhanced employee relations, stronger and stabler teams, as well as networking opportunities at events. Of course, it is vital that businesses support causes that they believe in, and that usually starts with a member of the team feeling strongly about a cause. If you believe in better brain tumour support, like we do, then please think about taking us to work with you. To find out how, simply drop us a line on 01983 292 405 or email tom@brainstrust.org.uk.

Lyndsey Rowe – Lloyd’s Legacy Festival

AST JULY people flocked to Highbridge Farm in Eastleigh for the third Legacy Festival, organised as part of Lloyd’s Legacy.

The sun shone all weekend, and the festival raised an incredible £3,337. The now annual festival is held in memory of Lloyd Green, who was diagnosed with a brain tumour and sadly passed away at the age of 34. Lloyd was just one month away from completing a four-year counselling degree when he was diagnosed, and he was unable to complete his course due to his condition and the seizures it brought on. Following his passing, Lloyd’s mum, Lyndsey, set up Lloyd’s Legacy in support of brainstrust and has been growing the incredible festival year on year.

Learning and collaboration – the Brain Tumour Symposium

AST YEAR the Brain Tumour Symposium returned following the success of the 2017 symposium in Milton Keynes. In May we collaborated with Brain Tumour Research and the Beatson Cancer Charity to bring you the first Scottish symposium. This was followed by a Paediatric and Teenage Brain Tumour Symposium in Nottingham, with support from Children with Cancer UK, run in collaboration with the Children’s Brain Tumour Drug Delivery Consortium (CBTDDC).

The events brought together healthcare professionals, consultants, researchers, representatives from different support services, and patients, carers and their families. Attendees were able to listen to experts and engage in discussions covering: l most effective treatments l barriers to treatment l roles in care l neurorehabilitation l and loads more! We received 100% positive feedback and are looking forward to bringing you more events like this in the future.

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The cost of life with a brain tumour Financial burdens

We know that households affected by a brain tumour will be financially worse off by £14,783 per year versus £6,840 for all cancers. We also know the costs of brain tumours to the wider economy include costs for treatment and rehabilitation, loss of tax revenue, and the costs of supporting brain tumour patients and their families via the benefits system. And we know that capturing the financial burden that comes with living with a brain tumour is tricky to measure – different brain tumours carry different burdens, and metastatic brain tumours, by far the most common brain tumours, tend not to be counted, as their origin is elsewhere in the body.

There is some help available. Financial help Luckily, there is a lot of information online that can help you cope with the financial strain a brain tumour brings. Visit our website: www.brainstrust.org.uk/moneymatters. Macmillan have produced some great resources on Help with the Cost of Cancer, and they have a dedicated benefits helpline, 0808 801 0304. Some organisations

are able to provide small grants – Charis Grants and Cost of Cancer are great places to start.

Travel insurance Having a brain tumour can make it tricky to get travel insurance. You should always be honest about your condition; if you aren’t and then you claim, the policy will be invalid. There are options, and you will need to set aside some time to find the best policy. Make sure to have your medical information handy, as well as information about your travel plans. We have a comprehensive list of travel insurance providers that have been used by our community at www.braintumourhub.org.uk.

But we know that the costs of living with a brain tumour go beyond the financial: l

varying survivorship

variable trajectory, including for non-malignant brain tumours

high frequency of disabling complications

high severity of disabling complications

increasing cognitive dysfunction

varying resilience and ability to cope.

These everyday costs erode our vitality, our identity and our roles, and take their toll on mental health and emotional well-being – for patients and carers. We know from our daily interactions with our community how deep these costs cut.

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I had been tired before, but this was like nothing I had ever felt. This was turbocharged tiredness. It was like trying to walk through treacle; my arms and legs felt heavy, and even just getting up from a chair felt like a major effort.

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Patient

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When the treatment is over, it’s never really over. The damage done by chemo and radiotherapy never really goes away. The fear never goes away. Caregiver

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And there are the misassumptions of others, which are another indirect cost of living with a brain tumour. Explaining that non-malignant does not mean harmless, people aren’t ‘cured’ after treatment, and that fatigue is incomparable to tiredness are just some examples. We’re here to help you – whether it’s understanding ways that you can seek financial assistance, dealing with the challenges a brain tumour brings, or challenging the misconceptions of others that don’t understand. Give us a call on 01983 292 405 if you need support.

Sources: For a systematic review, see Azzani, M., Roslani, A. and Su, T. (2014). The perceived cancer-related financial hardship among patients and their families: a systematic review. Supportive Care in Cancer, [online] 23(3), pp.889-898. Available at: https://umexpert.um.edu.my/file/publication/00009893_109829. pdf [Accessed 17 Jul. 2019]. The All-Party Parliamentary Group on Brain Tumours (2018). Brain Tumours: A cost too much to bear? [online] Milton Keynes: Brain Tumour Research. Available at: https://www.braintumourresearch.org/docs/ default-source/default-document-library/public-affairs-and-campaigning-documents/18-11-20-braintumours---a-cost-too-much-to-bear_final-report_low-res-singles.pdf [Accessed 17 Jul. 2019]. The Brain Tumour Charity (2018). The Price You Pay: The financial impact of a brain tumour. [online] Farnborough: The Brain Tumour Charity. Available at: https://assets.thebraintumourcharity.org/live/ media/filer_public/92/ce/92ce4712-e96e-4010-9752-fa96b47a3527/the_price_you_pay.pdf [Accessed 17 Jul. 2019]. Ekman, M. and Westphal, M. (2005). Cost of brain tumour in Europe. European Journal of Neurology, 12(s1), pp.45-49.

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My name is Sarah. In March 2018 I was diagnosed with a meningioma. I live in a small village just outside Buxton in Derbyshire with my husband, Paul. Paul is a keen FootGolfer, and this involves travelling around the country to different events and visiting new places. I enjoy going out for walks and spending time with my family and friends. I am also getting into photography, and I love crafts and trying new things.

Sarah Boulton’s story: life with a brain tumour When I first found brainstrust I felt so lost and confused after my diagnosis, and I was scared, as were my family. I was searching on the internet to try and find some answers and some help, as I did not understand what it was that I had, when I came across brainstrust. After finding brainstrust and reading about other people’s contact with the charity, I knew it was going to help me if I got in touch with them, and I am so glad I did. I received help and advice straight away after completing the initial contact form. I received the brain box, which I read about on the brainstrust Facebook page. It contained so many useful resources, as well as some lovely little touches of hand cream and teabags. I have also had a copy of My Fatigue Book, which has been so helpful, as fatigue is one of the main things I suffer with. Reading through the book and making notes along the way is really helping me. I have had email and phone support from Jodie, who is one of the support specialists. Whatever questions I have, or if I am struggling with things, I contact Jodie, who always helps me. We have recently started regular 18

coaching sessions over the phone, as after my operation, I was struggling with my confidence. Jodie has talked to me, listened to my worries and helped me to come up with ideas of how to rebuild my confidence. I was originally due to have my surgery at the end of October 2018. After hours of waiting, it was suddenly cancelled. I got in touch with Jodie, as I just felt so down that I was having to go through the buildup again, after months of waiting, and she got back in touch with me straight away and offered her help and support. I feel like I can ask anything and Jodie will help me or find a way to help me.

Doing something positive Since my diagnosis, my husband and I have done a few different fundraising activities in order to raise money for charity. We have organised raffles, set up a donation page, and in April we held a FootGolf charity day. My husband and some of our friends also took on the Yorkshire Three Peaks last October. I said that after the support I received from brainstrust, I wanted to at least raise enough money to cover the cost of a few brain boxes, and now

our fundraising currently stands at over £6,000. Never in my wildest dreams would I have thought we would raise as much as we have. I am extremely grateful to everyone that has supported us in raising this money, as I know it will go towards helping other people that find themselves on this difficult journey. Thanks to brainstrust, I now feel like I am part of a community and feel comfortable and confident whenever I have needed to ask for help. I stopped feeling lonely and scared, as I now know there is always someone who will help. When you hear the words ‘you have a brain tumour’, your life changes in a split second. Having brainstrust there has helped me to deal with it, and I will be forever grateful. If you would like to share your story, please email eve@brainstrust.org.uk. LO G B O O K : I S S U E 1 0 – S EPTEM B E R 2 0 1 9

Trusts and foundations I

om other and public 78,756

T’S BEEN A BUSY YEAR for funding in the trusts and foundations arena, with a wide range of donations from charitable organisations of all shapes and sizes. We’re exceptionally grateful to all of our funders, and we’ve listed a few below to give you an idea of the work we do together.

The Rank Foundation generously supported an internship in digital communications and fundraising for a year, and we are delighted to say that Eve has decided to stay with brainstrust. The National Lottery Community Fund has provided three years’ valuable funding so that we can deliver our programme of high-impact coaching and events in London and the south-east

and the Midlands. We’ve received renewed funding from Children with Cancer UK to support little brainstrust nationally, as well as some fantastic additional funding to host three annual symposiums with a dedicated focus on childhood brain tumours. The Anne Duchess of Westminster’s Charity has supported a programme of events in Cheshire, alongside funding from Awards for All, which will

Our expenditure 2018/19

How we spent your funds in 2018/2019 Governance costs: £8,649

enable us to deliver more events in Lancashire and South Yorkshire. This is by no means an exhaustive list, and we’re incredibly grateful to all the trusts and foundations that have supported us over the years, many of which continue to do so. Thank you!

139 Stay connected

You can meet our community, stay up to date with the latest brain tumour news and cheer on our fantastic fundraisers on any of our social media channels.

Cost of generating income: £91,061

Total expenditure:

£668,717

Charitable activities: £569,007

Page: brainstrust Group: brain tumour support brainstrust @brainstrust @brainstrustuk

30,062

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The brain box appeal

ROM APRIL 2017 TO MARCH 2018, we sent 380 brain boxes, our unique and vital toolkit of information and resources that we provide free to anyone who is affected by a brain tumour and wants one. Between April 2018 and July 2018, we had already sent that many. This unprecedented demand led to the launch of our first ever brain box appeal. A brain box contains materials and resources such as My Brain Book, our fatigue resource and even teabags, all designed to help someone living with a brain tumour feel less afraid and more in control of their diagnosis. Each brain box costs £40 for brainstrust to make, but we provide these for free to everybody affected by a brain tumour who wants one.

to get support from the point of diagnosis. To be able to say that we have created this legacy in Gill Kennedy’s name and can support over 250 people is fantastic.’ Our incredible community came together to support the brain box appeal, spreading the message far and wide on social media, taking on challenges and donating to the cause. This included fundraising dinners and balls, mountain climbs and garden parties, among other things. With your support, over £21,000 was raised, enough to fund a fantastic 525 brain boxes!

The family of Gill Kennedy donated a staggering £11,000 in her memory to the brain box appeal, enough to fund 275 brain boxes.

Join team brainstrust Your next challenge will be life-changing for someone with a brain tumour. We have places available in the following events: Bournemouth Marathon Festival

6 October 2019

Kapow! Obstacle Course, Heaton Park, Manchester

6 October 2019

Great South Run

20 October 2019

Vitality Big Half (London)

1 March 2020

Cambridge Half Marathon

8 March 2020

London Landmarks Marathon

29 March 2020

Brighton Marathon

19 April 2020

Whether you want to do your own thing or use one of our places in an event near you, get in touch! We can even try to help you get a place in another event not listed above. Just drop an email to anna@brainstrust.org.uk or call 01983 217 154.

‘We had to go looking for information and support when Mum was diagnosed, and only received the brain box two months before she died. We want to ensure that anyone else in the same position is able Want to request a brain box for yourself or for a loved one? Email hello@brainstrust.org.uk or visit brainstrust.org.uk. If you’d like to donate the cost of a brain box, you can do so at www.brainstrust.org.uk/donate.

Your personal data is very important to us because it allows us to help people living with a brain tumour. Your details will only be used by brainstrust in adherence to our privacy policy. We will never give your information to other organisations without first seeking your specific consent. You are free to change your mailing preferences at any time. To change the way you receive news and information from brainstrust, please visit www.brainstrust.org.uk/contact, email preferences@brainstrust.org.uk, or call us on 01983 292 405. 2 0

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Registered charitable trust – brainstrust is a registered charity in England and Wales (1114634), and Scotland (SC044642).