brainstrust Logbook 9 by brainstrust

IS S U E 9 AUG U ST 2 017

Logbook THE MAGAZINE FROM

brainstrust â&#x20AC;&#x201C; the brain cancer people

Brain tumour information you can trust: page 3 Wellbeing workshops to help you become stronger: page 4 Focus on extreme fatigue in brain tumour patients: page 5 Investigating possible causes of cancer and improving treatment options: page 16

Brain tumour support 24/7.

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

www.brainstrust.org.uk

Welcome to brainstrust’s 9th Logbook

brainstrust exists to support the thousands of people in the UK who are living with a terrifying brain tumour diagnosis, their families and carers. From personal experience, we know what it feels like to hear the words ‘you have a brain tumour,’ and through our coaching work, can help you to feel less alone and afraid, and more in control.

N THIS ISSUE OF LOGBOOK, Martin Smith (page 7) talks about the loss of control he felt when he received his diagnosis. He talks of feeling ‘cast adrift’ and not having the information he needed. Through his internet research he found brainstrust, and developed ways to stay positive and take back control.

Emma’s diagnosis may never have happened if it hadn’t been for giving birth to her daughter, Skye. On page 14, she talks about how her family kept her focused and determined to recover after brain surgery.

workshops across the country (page 5). The workshops will help you to understand fatigue and how it is different for people living with a brain tumour. You’ll also learn how to develop strategies to help you manage your fatigue.

Fatigue is a huge problem when you’re living with a brain tumour, so to help we’ve launched fatigue

Also in this issue, we meet some of our inspirational fundraisers who have run, walked and skydived to

help people with a brain tumour. Without their help, and your help, we wouldn’t be able to support our brain tumour community. Thank you! If you would like our support, please get in touch. We know how alone and afraid a brain tumour makes you feel, which is why we are here 24/7 to provide support and advice to anyone affected by a brain tumour.

brainstrust charity of the year BCL Solicitors LLP of Lincoln’s Inn Fields, London, has nominated brainstrust as Charity of the Year for 2017. The company made a huge donation of £5,000 and staff are now holding fundraising events to raise money for our brain tumour community. Michael White, brainstrust’s community fundraiser, said, “We’re delighted that BCL Solicitors is supporting brainstrust. We’re really looking forward to working with them and appreciate their support. The funds raised will make a big difference to people living with a terrifying brain tumour diagnosis.” If your company would like to work with brainstrust to improve the lives of people living with a brain tumour, we would love to hear from you. Email michael@brainstrust.org.uk or call 01983 292 405. 2

Here’s how your company can get involved

Charity of the year Nominate brainstrust as your charity of the year, or encourage your team to fundraise for us. Cake bakes are always popular. Whatever you decide to do, we will support you with fundraising materials and tips.

Volunteering

Join team brainstrust

Enter an office team into a team brainstrust challenge and enjoy the camaraderie as you train together and take on a challenge to remember.

Donations Our work with the brain tumour community is funded by our supporters. Donations are always welcome, £50 will fund a brain box, a support toolkit for people with a new brain tumour diagnosis and their carers.

We rely on our dedicated team of volunteers, and have opportunities for everyone. Whether it’s supporting at an event, or helping in the brainstrust office, your support will help people living with a brain tumour to feel better supported. LO G B O O K : I S S U E 9 – AU G U ST 2 0 1 7

Wear grey on 1st October in memory of our close friend Shaun

brain tumour support on the BBC

N DECEMBER, brainstrust was on the BBC showing the reality of what life is like when you’re living with a brain tumour.

The Lifeline appeal followed fiveyear-old Phoebe as she and her family attended one of our meet ups, and Chris as he waited for results of his scan.

Thanks to Shaun, an estimated one million people now have a greater insight into what life is like when you are living with a brain tumour. He has inspired the brain tumour community to raise £100,000 for brainstrust’s brain tumour support. This year, we are turning the world grey in memory of Shaun and all the people who have lost their life to a brain tumour. Together we can help the world understand what a brain tumour really means. Request your fundraising pack today. Visit www.brainstrust.org.uk/ weargrey call 01983 292 405 or email michael@brainstrust. org.uk LO G B O OK: ISSU E 9 – AU GUST 2 017

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Phoebe, age six

ARLIER THIS YEAR we said goodbye to our close friend Shaun Skinner who sadly died of a brain tumour.

Since starting Wear Grey back in 2011, Shaun has worked tirelessly to raise awareness of the real impact of this horrible disease. Despite the personal challenges of his own brain tumour, Shaun has helped and supported hundreds of people through their brain tumour journey, online and face to face.

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I’m a happy person, even when we go through hard things. It was a big lump inside my head.

The appeal was presented by newsreader Julia Somerville, who had surgery for a brain tumour and has now recovered.

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The anxiety builds up a couple of weeks before each scan and consultation. I am convinced that it’s bad news every time and then it isn’t every time. So hopefully today’s no different.

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Chris

As well as raising awareness about the support brainstrust provides, it also raised £13,000 from viewers keen to help people with a brain tumour feel less isolated and afraid, and more in control.

Brain tumour information you can trust

FTER BEING DIAGNOSED with a brain tumour many people turn to the internet to find out more about their diagnosis and treatment options. But with so much information out there, how do you know it’s information that you can trust? NHS England developed the Information Standard quality mark to improve the quality of health and care information available to the public, patients and health and care professionals. The Information Standard means you can quickly identify reliable sources of quality information. You can be confident in your research, knowing that the organisation has gone through rigorous assessment to make sure the information is accurate, reliable and trustworthy. brainstrust was one of the first charities to adopt the Information Standard when it launched a few

years ago, and has just been certified for another year. When you read brainstrust information, whether it’s on our website, leaflets or information sheets, you know that it has been recognised as quality information, helping you to understand the choices available to you and your family. When I was diagnosed with a brain tumour ❝I struggled because I was lacking information and support. I had no one to speak to. My only option was the internet, which is where I found brainstrust.

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Martin

Wellbeing workshops to help you become stronger

The workshops gave me the opportunity to ❝ speak to others in a positive way, share feelings, and listen. It was inspiring. ❞

EOPLE WITH A BRAIN TUMOUR, CARERS AND HEALTHCARE PROFESSIONALS say our wellbeing workshops have helped them to feel stronger and more resourced. We’ve been running three different types of workshops: l

Coaching workshops where you can pick up invaluable problemsolving and communications skills Fatigue workshops to help you understand fatigue and develop strategies to cope with the extreme fatigue that we know comes with a brain tumour and the associated treatments

Mindful drawing workshops, run by a renowned artist, will help you find focus and calm in the face of the stress of living with a brain tumour.

Coaching Workshops Coaching helps you become stronger and more resilient, helping you to get back in control after a brain tumour diagnosis. As well as giving you the opportunity to meet others who understand, the workshops will help you develop strategies to cope with the challenges you face. People who attended our first workshop in London said they felt

❝LESS ISOLATED❞ ❝MORE CONNECTED❞ and ❝MORE IN CONTROL❞

Fatigue workshops: tired of your fatigue owning you? Our fatigue workshop will help you understand fatigue, explore how it’s impacting on your quality of life, and develop strategies so that you own the fatigue, rather than feeling it owns you.

Book today For more information about upcoming workshops visit www.meetup.com/brainstrust, email hello@brainstrust.org.uk or call 01983 292 405.

More workshops coming soon We understand that not everyone could make the dates and locations. If you’d like to attend in future, please email hello@brainstrust.org.uk and tell us where you’re based. Thank you! LO G B O O K : I S S U E 9 – AU G U ST 2 0 1 7

When you’re living with a brain tumour fatigue can be a huge issue. We know.

Focus on fatigue I thought I knew what it meant to be tired. ❝ I now know I had no idea. This isn’t just being

tired. This saps at your identity, your confidence, your way of being. I don’t go out anymore. I avoid leaving the house. I don’t shop. Friends have stopped asking me out.

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as well as including sections on coping with fatigue, prioritising and goal setting, the use of a fatigue diary, sleep hygiene checklist, the brief fatigue inventory (helpful in clinical appointments), looking after someone who has fatigue, drug treatments for fatigue, and acceptance commitment theory.

ATIGUE IS A COMMON SIDE EFFECT OF CANCER and cancer treatment (including surgery, radiotherapy and chemotherapy) and is also a common side effect of brain injury and its treatment. This means that brain tumour patients are particularly vulnerable to fatigue.

Your feedback on the fatigue workshops l

“From the workshop, there was the key message of you can take control.”

One of the most frequent and distressing symptoms our community describe is extreme fatigue. This often has a profound impact on quality of life, not just on the patient but also on the carer.

“It was useful to share experiences and take forward that one per cent change.”

“The workshop helped me to identify bad habits that are within my power to change.”

“Talking through sleep hygiene helped.”

“I could have done with this two to three years ago.”

“Thanks again to brainstrust. Patients always first.’

“The commitment to change by 1% an aspect causing fatigue worked well.”

Despite the impacts, many people in this community fail to tell their doctor about fatigue, often because they feel nothing can be done. The Cochrane Group, an international medical group developing evidence around healthcare, noted that, ‘treatments to help manage fatigue may improve a person’s quality of life, their ability to tolerate cancer treatment (which themselves are associated with fatigue), and their ability to carry out social and dayLO G B O OK: ISSU E 9 – AU GUST 2 017

to-day activities,’ although it advises more research is needed. To help our community, we have launched fatigue workshops across the country. The workshops will help you to understand fatigue and how it is different for people living with a brain tumour, explore how being fatigued is impacting on your quality of life, and learn about effective strategies so that you own the fatigue, rather than it owning you. For more information visit www.meetup.com/brainstrust. We are also launching My Fatigue Book, a printed and online resource to help you manage your fatigue. The resource will help you to understand fatigue and its causes,

Brain tumour support resources

Last month, we said goodbye to James Pilkington, our patient information officer, who completed his 12-month internship, funded by the Rank Foundation, a charitable trust set up to improve the lives of people and their communities, across the UK.

submitted as abstracts to two cancer conferences this year.

What’s been your biggest challenge whilst working here? Producing multiple little white books at once has always seemed like a bit of a juggling act but with the help of the rest of the team it has been made just that much easier.

What are you most passionate about?

INCE JOINING THE brainstrust team in 2016, James has worked tirelessly to improve resources for people living with a brain tumour so that they get the information and support they need. He speaks to Logbook about his brainstrust experience.

I studied marine conservation at university and I’m absolutely fascinated by the marine environment.

What have you enjoyed about your time here?

What difference have you made?

The positive feedback and testimonials for my work and the work that brainstrust does in general is highly rewarding and motivating. Knowing that your work may help someone to take back control of their diagnosis never gets old.

I have written 15 regional little white books which cover 9 out of the 11 most populous regions in the UK and cover regions of priority based on patient feedback, our support team regions and engagement with the clinical community.

What are you most proud of at brainstrust?

There has also been an 8-fold increase in the support services that we have up on our national signposting website, the brain tumour hub. I have contributed to our marketing through promotional videos, represented our charity at two Society for British Neurosurgeon conferences and completed research on brain tumour support accessibility in Greater London, which we have

During my time at brainstrust I’ve received a huge amount of training from presentation workshops with Chapter3 to information production with the Patient Information Forum. I believe this has helped hugely with my job prospects. I’m currently applying for PhD scholarships in marine conservation biology for next September. In the meantime, I have an internship based at a marine spatial ecology lab in Puerto Morelos run by the National Autonomous University of Mexico (UNAM).

There are lots of great local charities that can help people living with brain tumours and I believe my work over the last 15 months has, and will continue to, allow people to access these resources in their area quickly and when they need them most.

What’s next for you?

Tell us a random fact about yourself. I’ve got a metal plate in my right arm which was put in after breaking my radius during a rugby match back in 2008.

Little White Books As part of his work, James has been developing our Little White Books, a directory of support services in your area. Little White Books are available in Sheffield, Merseyside, Greater London, South East Scotland, Glasgow, Greater Manchester, Tees Valley, Aberdeen and the Highlands, and the North West, which is a specialist children’s directory. If you would like one of our Little White Books, for free, please email hello@brainstrust.org.uk or visit www.brainstrust.org.uk/advice-resources.php. You can also access a copy through our online catalogue www.issuu.com/brainstrust

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Staying positive and taking back control

HEN HE WAS DIAGNOSED with a brain tumour in November 2016 Martin Smith felt cast adrift. Like with many people, the diagnosis took him completely by surprise. He left the GPs surgery feeling confused and alone, unsure where to turn for help. He was in a state of shock, not quite believing what he’d just heard.

“It was like I was walking in fog, everything seemed in slow motion,” he said. “Then I wondered if I’d heard right. Surely, that wasn’t going to happen to me. It was a suspended animation. But then came the reality.” Martin was told he had a meningioma brain tumour, and after receiving the diagnosis had been so shocked, he’d understandably not had chance to think what questions to ask. “At the time I asked some questions, but not enough. I felt cast adrift. I wanted more information. I was struggling because I was lacking information and support. I had no one to speak to.” His only option was the internet, which is where he found brainstrust. “When I spoke to Helen, the support specialist, it was like an outpouring of emotion. I was grateful for someone to speak to, someone who understood. I was wondering how to deal with my diagnosis.

“Helen was very clear about the support brainstrust could give. That gave me confidence. Until I spoke to brainstrust, I’d never thought about a second opinion. I went to see Andrew McEvoy in London. He was wonderful, very open and honest and explained with such clarity.” Martin is now on watch and wait, having regular scans to monitor his tumour, and he is feeling much more positive. “After the diagnosis, I went through some bad lows. I didn’t want my family to see what I was going through, so I hid it for a while. I’ve always been a strong, positive person and I wanted to still be that person. “I overcame the emotion by getting it out, but not in front of the family. I didn’t want to worry them and cause anxiety. When I finally talked to my family, I gave them the information

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I do not know the date I found brainstrust, I only know it was in the middle of the night, about 3am, and I was in a state. I found the number, rang, left a message and got a call straight back. I was amazed that someone could care. I think she said, “but you needed me now” and since then that is the only thing I have ever felt from this charity – love, support, friendship and care.

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that brainstrust had provided, so that they understood. As a family, we have laughed about it, which may seem strange, but when you’re faced with adversity, humour is a coping strategy.” For Martin, one of the worst things about the diagnosis was the loss of control and the uncertainty. “It can be scary, but you can take back control. It’s your body, your life. You can take control. Living with the uncertainty is difficult, so I haven’t allowed it to be an uncertainty. I’m positive. I still have options. I know I have options because I’m informed. That allows you to cope. It allows you to be you. I have a lovely life and a rosy future, and the reason comes back to brainstrust.” Martin is keen to help others who have been diagnosed with a brain tumour, and is a regular on the Facebook group page. “My advice to anyone with a brain tumour is to be informed and get the best possible information. Be persistent in your conversations with medical professionals, use brainstrust. Get knowledge, support and feedback, so that you know you’re not alone.” After a second MRI scan and review by Dr McEvoy, Martin has been told that he does not have a meningioma. “I have a benign presence but not a tumour,” he says. “No treatment is possible, so I’m not sure what the effects will be, but I do feel really lucky and I am counting my blessings in more ways than one. In some ways, I feel a bit of a fraud, as I don’t have the diagnosis originally rendered. I wonder how many others have been misdiagnosed as well?”

brainstrust 24/7 brain tumour support line

Open 24 hours a day, 7 days a week, the brainstrust support line offers brain tumour patients and carers support, information and pragmatic advice over the phone and by email. l experience based brain tumour support – talk to patients and carers l qualified coaches on hand l expert clinical advisors on hand Need help now? Email hello@brainstrust.org.uk or call 01983 292 405

Fantastic fundraising thanks to you

After 7 years of fundraising for brainstrust, I am humbled every day by the generosity and support of our amazing community. Patients, families and friends, you are all so incredibly strong and driven to raise funds to help other people who are facing the same challenges as you are.

VERY MONTH we have a new fundraising ask – drinking tea, jumping out of an aeroplane, wearing grey, hiking 50 miles, or running a marathon – and every time you step up and get involved. I am so very grateful to each and every one of you who have fundraised for brainstrust. When my sister Caroline was diagnosed with a brain tumour, it ❝ was brainstrust she turned to for guidance and support. I was keen to help in any way possible, so I signed up for RideLondon. Experiencing the Olympic cycle route on closed roads, and raising funds for such a great cause, was so compelling. Caroline and her husband were there at the finish line, with Buckingham Palace as a backdrop. It was very emotional.

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Our latest campaign is to get more companies involved with the work that we do and our fundraising events. If you think your company or workplace might like to hold an event, perhaps for Wear Grey or Teafest or that your colleagues might like to walk, run or cycle to raise money for brainstrust, then I would love to hear from you. We are also trying to engage more schools in the work we do. So, if you have children or grandchildren at school, perhaps one of our team could come and speak at an assembly or get the school involved in some fundraising – a home clothes day or a school fun day perhaps? If you have any ideas for fundraising or would like to get involved, please do get in touch: email: tessa@brainstrust.org.uk or call 01983 213 575

A huge thank you to 10-year old brainstrust supporter Melissa who has raised £700 through a sponsored hair-cut “I was chatting to my friends and we all thought it would be great to support people with cancer by cutting off our hair for wigs. None of my friends actually did it, though – one even got to the hairdresser and then couldn’t go through with it! I am really proud to have raised lots of money for brainstrust – even though I am missing my long hair now. Lots of my school friends and teachers have sponsored me and some people at 8

school who I don’t know as they have someone in their family with a brain tumour. Mum has told me that the £750 I have raised will pay for

15 brain boxes. It makes me feel really good to know I have helped 15 families when it must be a really scary time for them.”

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Marathon man Stephen Miller Stephen Miller ran the Chester Marathon in memory of his mum, and to help the thousands of people living with a brain tumour in the UK.

WENTY MILES INTO A MARATHON is when the real pain begins, not just the physical pain, the aching legs, the sore feet, the fatigue, it’s also when the mental pain begins, the doubt about whether you will make it to the finish, the questioning of why you even bothered to sign up in the first place, and the voice that keeps telling you never again.

For Stephen Miller, the biggest challenge was the fear of the unknown, the point at which he needed to push his body to run further than ever before. “I had run up to 22 miles in training,” says Stephen. “But beyond that was new territory. Many people had said to me that a marathon doesn’t start until the twentieth mile, and never has a truer word been said.” There was one person who helped him through the wilderness miles, and that was his mum, Sheila. My mum was obviously at the forefront of my mind and I kept hearing her say how proud she was of me, something that she used to say regularly that meant so much to me.

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As well as thinking of his mum, he also ran with friends who were seasoned marathoners and the thought of seeing his family at the end kept him going. “Probably the final things that kept me going was knowing that my wonderful wife, children and dad were at the finish line and I wanted them to see me achieve my goals. I’d also promised myself a huge takeaway and plenty of beers that evening!” When he crossed the finish line, Stephen was overcome with emotion. “The day itself was exciting, daunting, motivating and everything in between. My biggest memory was of how emotional it was. I had trained for several months for this one day and, LO G B O OK: ISSU E 9 – AU GUST 2 017

obviously because of why I was doing it, and the support I received, I found it incredibly moving.” Stephen was running in memory of his mum, who was diagnosed with a brain tumour in 2012. “My mum fell ill while she was on holiday in Spain, and after initial diagnostic investigations was flown back to the UK where she was diagnosed with an inoperable Glioblastoma Multiforme brain tumour. After her diagnosis, we contacted brainstrust and received some fantastic support. The most reassuring thing was that we were not alone, and there was as much, or as little support as we wanted.

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“My mum sadly passed away just over 12 months later and one of her wishes was for donations to be split between her church and brainstrust. My mum was a wonderfully kind and generous person and she would have wanted her illness to be the catalyst for others to be helped. I am proud to fundraise in her memory for a charity that provides such important support to brain tumour patients and their families.”

After losing his mum, running was one of the things that helped Stephen to cope with his loss. “I find running to be a great way of relaxing, clearing my head and putting things into perspective,” he says. “If three hours on the road doesn’t help you think things through nothing will.” Now that the marathon is over, Stephen has continued his fundraising efforts, raising more than £1,000 during Teafest. As if running a marathon and organising a tea and cake fest isn’t enough, he’s now planning another challenge. “I have definitely got the running bug. I’ve already signed up for several more events, and have started planning something a bit more extreme.” With one marathon under his belt, there is no stopping Stephen. We wish him well with all his challenges for the brain tumour community. Like many of our marathon runners, Stephen was running in memory of a loved one who sadly died of a brain tumour. We’re always amazed and inspired by the support we receive from friends and family who want to do something positive to help others with a brain tumour. Thank you. If you’re interested in a Team brainstrust challenge, we’d love to hear from you. Email tessa@brainstrust.org.uk 9

On Mother’s Day brainstrust’s Kathy Springate took on the challenge of a lifetime, jumping 10,000 feet out of a plane to raise money and awareness to help people living with a brain tumour feel less alone and afraid. “A few years ago, my niece did a skydive and afterwards whenever she talked about it she was always so full of enthusiasm that I thought I’d like to have a go if the opportunity ever came up. Well, the opportunity did come up!”

’D ALREADY SPOKEN to Carol Cochrane and Tessa Watson, two of my brainstrust colleagues, who’d done a skydive last year. Carol said it was absolutely fantastic and she would do it again. Tessa told a different story. She said it was terrifying and you’d never get her to do anything like that again.

I didn’t know what to expect, but I decided it was now or never so I signed up for it. To help with the fundraising, I set up a Just Giving page and also joined Facebook, something I vowed I’d never do, but it was all in a good cause. I am lucky that my life has never been touched by brain cancer, but through my work I hear and read about the devastating impact it has on all those living with a brain tumour, their families and caregivers. I am in awe of the courage and tenacity they show in just living with this every day. I also see the impact that brainstrust has by helping people who have been diagnosed to feel less afraid and more in control. I knew the money raised would help people living with a brain tumour.

My Mother’s Day

I was really looking forward to the skydive, although whenever I told people what I was doing the most frequent comment was why? I told them about the great support brainstrust gives and everyone was so generous with their sponsorship.

skydive 10

for brainstrust

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suddenly we were out of the plane. After a couple of seconds, he tapped me three times on the shoulder as a signal to go into the skydiving position and we were hurtling through the air with a carpet of green far away beneath us.

On the day, I travelled up to the airfield near Brackley with my husband, daughter and two small grandsons as support, still not quite knowing what to expect. The team there were great, very welcoming, reassuring and professional, and it was good to know that the instructor I was going to be in tandem with, Geoff, was a fulltime skydiver with an average of three jumps a day. That put any doubts I might have had out of my head and I was set to enjoy this unique experience.

Apparently, it takes roughly 45 seconds to travel from 13,000 feet to 5,000 feet which is when the parachute opens! That 45 seconds goes in a complete blur, but when the parachute opens and you slow down there is a serene calmness. You feel as if you are suspended in the air, not even moving. I mentioned this to Geoff who then proceeded to spin us around a few times to prove we were indeed travelling, albeit with no reference to anything around us.

The weather on Mothering Sunday was superb, beautifully sunny and clear, and although cold on the ground, I certainly didn’t feel cold at all during the skydive. Perhaps it was the adrenaline. Once all the jumpers had arrived we were given a short but informative training talk and then waited for our names to be called to start preparing for the jump. I met a lovely lady called Harriet Hellman who is a carer, and who was also doing the skydive on behalf of brainstrust, as a thank you for the support she and her husband received. I was lucky I was one of the first three called, so things started to move quickly. I met the instructor, got into a very fetching jumpsuit, padded hat, gloves, and harness, and before I knew it we were on our way to the plane.

We sat astride two padded benches with our back to the pilot. Geoff attached me snugly and securely to his harness at the hips and shoulders. He was great at putting me at ease, chatting about the wonderful scenery we could see, as the plane climbed steadily to 13,000 feet. As we reached the required height, the door was opened and four single skydivers who had been with us seemed to throw themselves out the plane.

He said as we got closer to the ground we would feel as if we were speeding up but even then, we landed in a very controlled manner and just walked away as we touched down. What also amazed me, was that we landed exactly on the circle of grass marked out for it! I also had the opportunity to buy a disc of some great photographs taken as we arrived.

We were the second tandem pair to jump and Geoff shuffled us along the bench and over to the open door in one smooth move. He told me to get into the launch position and

This was an exciting, absolutely brilliant experience and I feel privileged and very proud to have done it for such a great cause.

This was an exciting, absolutely brilliant experience and I feel privileged and very proud to have done it for such a great cause. Travelling home afterwards it all seemed quite surreal and took a while to sink in. I’d actually done it! If you are inspired by Kathy’s story, and would like to skydive for brain tumour support, call today on 01983 292 405.

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You did it! You walked 50 miles in 2 days on the Isle of Wight and in Whitby, raising more than £30,000 to help people living with a brain tumour to feel less alone and afraid, and more in control.

Follow the

Seagulls F

2017

OLLOW THE SEAGULLS is a special event. It’s a chance for people affected by brain tumours to do something big for the brain tumour community. It’s a huge challenge, but is made possible by great camaraderie and just knowing that every step will make a big difference to people whose lives have been devastated by a brain tumour diagnosis.

As a community fundraiser, I’ve worked on many events, but nothing comes close to Follow the Seagulls. The challenge, the people, and the cause make it a great event.

website called MapMyWalk to help calculate the distances. It seemed to take forever, and over the months that followed the route was changed many times. It had to be just right.

I joined brainstrust in June 2016 tasked with setting up a Follow the Seagulls walk in the north after the success of the first Follow the Seagulls event on the Isle of Wight earlier that same year. I began in earnest, looking for locations incorporating a bit of everything. It didn’t take long to decide on Whitby and the North Yorkshire Moors National Park. Something to do with the miles of unspoilt countryside, vast moorland, ancient monuments and, of course, the stunning coast. Then came the tricky part – plotting the route. This involved an Ordinance Survey map, a large floor space, and a lot of patience. I used a GPS 12

brainstrust’s North of England community fundraiser, Michael White, reports on a fantastic event and a wonderful weekend of walking.

produced. My colleagues and I walked the route to check that everything was safe. We did it in wintry, cold and windy weather. It was at the top of a moor with the hail in my face when I suddenly realised just how much of a challenge the event was. And the climbs! Don’t get me started on the climbs. On the day, I was amazed at how our walkers tackled the event. They were laughing and joking, but keen to keep going, putting one foot in front of the other for people with a brain tumour. It was a privilege to support them.

Here’s my diary of the weekend

With the route planned, the promotion could begin. We were excited to Follow the Seagulls in two locations – on the Isle of Wight and in Whitby. Walkers, the brain tumour community, and the team here at brainstrust got behind the event. Fundraising packs were sent out to support our walkers, fleeces were ordered and itineraries were

DAY 1: We were greeted with a nice, bright and sunny spring day. The start area was conveniently located in a café, next door to Whitby railway station. As walkers began to arrive, mugs of tea and coffee were had, breakfast was cooking. It was time for me to hand out walker’s packs and brief walkers before the big set off.

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to Whitby to drop them off, before making my way to the finish line of Day 1, next to Whitby Abbey.

Our intrepid walkers about to embark on the challenge like no other

And they were off. I watched them disappear into the distance, then for me, it was on to the first checkpoint, a tea garden set deep in an enchanted woodland.

Whitby Abbey, Dracula was nowhere to be seen

All walkers did the final 6 miles in remarkable time, finishing earlier than I predicted.

Then it was onto the small, pretty fishing village of Staithes where a fantastic, well-earned lunch of sandwiches, soup, pork pie, fruit, cake, tea and coffee was kindly put on by the Whitby Endeavour Rotary Club. After a lengthy stop for lunch, it was on to the Cleveland Way for the final 11 miles, passing through Runswick Bay, Sandsend (where ice creams were had) and then the final stretch along the beach, finishing in Whitby, overlooking the harbour. Medals were worn with pride and the celebrations began.

It was then time to freshen up, before meeting at a restaurant in town for a three-course meal.

Time for a brew!

All walkers made it through the checkpoint only 20 minutes behind the time I anticipated! Food and drink was consumed to keep up energy stores, before the next stage of the walk – a 7 mile slog up hills, down dales and through vast moorland. Time for me to set off, grab some lunch and make my way to checkpoint two. Here I waited for a couple of hours, thinking about the walkers and why they were taking part. Everyone had their own reasons for keeping going. At 2pm, everybody came through, with Claire, our little brainstrust support specialist, having a close shave with an Adder scurrying through the shrubbery up on the moor! Next, onto Robin Hood’s Bay (Mile 18), where the glorious spring sunshine was replaced with a typical April shower. A kind lady donated her parking ticket to me. Some ground was made up here by the walkers, because the tide was out, meaning a welcome stroll along the beach beckoned. Here two walkers dropped out, so there was a quick detour back LO G B O OK: ISSU E 9 – AU GUST 2 017

DAY 2: There was once again an early start. We met in the car park at Whitby railway station for our minibus to take us to Danby Beacon, where the start took place. Cloud and drizzle greeted us here as the faithful few walkers set off on another 19 miles of solid walking.

The finish is in sight

And they’re off!

Good time was made to the first checkpoint at Scaling Dam and to the second checkpoint, where the coast starts to come into view. Spirits were also high, as yesterday’s aches and pains started to subside.

“There’s the sea!”

We did it!

This is a very brief snapshot of the weekend in North Yorkshire. If it has inspired you to take on Follow the Seagulls in 2018, we will be in three locations: the ISLE OF WIGHT, WHITBY and the NORTH YORK MOORS, and a brand new coastal walk in SCOTLAND. Save the date – 14th and 15th April 2018. Visit braintumour50.com for more information and to sign up today! 13

Becoming a mum saved Emma Johnson’s life She speaks to Logbook about how pregnancy and labour helped medical staff discover she had a brain tumour

IX WEEKS after giving birth to a beautiful baby girl, Emma was doing the nightly feed when she began to have problems with her sight. “I was feeding Skye, but couldn’t see properly,” she said. “My vision was cloudy and I was seeing flashing lights. It was like I was looking through a muslin cloth.” As a new mum, she put it down to tiredness, but soon after, she woke up one morning and couldn’t see at all. It only lasted a few seconds, but it began to happen a lot. She’d struggle to see for about 30 seconds at a time, and would then be okay. She was afraid that something was really wrong, and found the courage to make an appointment with her GP. “It was a big deal going to the doctor. He said it could be a virus and told me to come back in a week. I was so deflated that when I came out of the appointment, I burst into tears. My husband saw how upset I was, so suggested I make an appointment with the optician.” A few days later, Emma went for her first eye test in years. The optician 14

checked the back of her eyes, and Emma watched his reaction. “His face dropped, then he turned and said to me, this is really very serious. I want you to go to the Royal Eye Infirmary straight away. “I was numb, shocked and scared,” Emma said. “I had a feeling I was poorly, but I didn’t expect what I got.” At the hospital, Emma was told she had a large brain tumour, which the neurosurgeon said may have been growing for 10 to 15 years. “He told me that Skye’s birth had put pressure on the tumour, and the swelling had pressed on the back of my optic nerve, which is what was

causing the problems with my vision. Without the labour, the tumour would probably have carried on growing and I wouldn’t have known anything was wrong until it was too late.” After diagnosis, Emma was faced with the prospect of brain surgery. She was put on steroids to reduce the swelling and had to wait for the day of her operation. “It was so hard,” she said. “I had a newborn baby and my other children to look after so I didn’t want to fall apart. I did have my moments, normally at three in the morning, but you have to stay positive. I had a family, and had to be hopeful and positive and enjoy each and every day, because I didn’t know how the surgery would go.” The operation took more than 12 hours as surgeons tried to remove all the tumour without causing damage to Emma’s brain. The surgery was successful and all but 5% of the tumour was removed. Recovery after the surgery was a long, painful, and slow process. Emma had to learn to stand and then walk again.

“I quickly realised that the people going home from hospital, were the ones getting up and walking. I was determined to do the same. I decided I would walk to the shower. It was difficult and felt like a marathon, but LO G B O O K : I S S U E 9 – AU G U ST 2 0 1 7

I made it. Later that day, I walked to my husband when he visited. He was amazed.” Despite the difficulties of rehabilitation, it was the thought of her family that kept Emma going. Mia, her eldest daughter’s 13th birthday, was approaching and she desperately wanted to be home for that.

“The staff told me not to pin my hopes on making it home for her birthday, but when they saw that I was getting up and moving about, they said I could go home. It was on Mia’s birthday and I wanted to surprise her. The car journey was awful. It felt like we were travelling really quickly, but we were only driving at 20 miles an hour.” She made it home and the family had an emotional reunion. Life after surgery has been challenging. Emma has balance and mobility problems now, which means that she can’t walk very far and she’s had to give up her job as a school dinner lady. “I’ve never got back to how I was before surgery. I take each day as it comes, because not working does get me down. But I also see the positives. Every day I think I’m so lucky. If I hadn’t had Syke, I probably wouldn’t even be here.”

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You had a tea-riffic time for Teafest For one week during February, you had a brew for brainstrust to celebrate Teafest.

P AND DOWN THE COUNTRY, at homes, offices, schools, shops and cafes, hundreds of people took time out to enjoy a cuppa and raise a few pounds to help people living with a brain tumour.

A record 74 fundraising packs were sent out and an incredible £4,700 was raised. You can still help us to get this total to £5,000 by visiting our online shop where you can buy Teafest tea towels and mugs. Visit shop.brainstrust.org.uk/ collections/teafest

I TEA TEAFEST

Save the date

If you want to get brewing in 2018, we have set the date for 19th to 26th February. Register for your free fundraising pack today www.brainstrust.org.uk/teafest. Have a brew for the brain tumour community.

20th–27th February 2017

make a brew for brainstrust

The importance of brain tumour data at the National Cancer Registration Service When she was diagnosed with a brain tumour in 2016, Linda Patrick wondered if her condition had any connection with her family’s history of cancer. Both her father and daughter tragically died of the disease, her daughter with leukaemia when she was only 13 months old and her father with a glioblastoma brain tumour five years ago.

OLLOWING HER OWN DIAGNOSIS of a meningioma brain tumour, Linda had lots of unanswered questions about genetics and cancer and about how cancer might have an impact on other health conditions.

She was keen to find out more, which is why she attended a Public Health England workshop aimed at helping the National Cancer Registration Service re-design its public information materials. The service aims to collect data on all cases of cancer that occur in people living in England and Wales. The data is then used to support public health, healthcare and research. Cancer registration helps clinicians and researchers investigate possible causes of cancer and improve treatment options. It is the only way to keep track of how many people are getting cancer and what types of cancer they have. Healthcare teams use this information to continually evaluate and improve services and treatment options for patients. Linda said: “With my family history of cancer, I was interested to see if there was a connection – some kind of link within the family. I really enjoyed the workshop. Sophie, the facilitator, was very knowledgeable and good at getting people to talk. 16

“She discussed how the data is collected, then checked and held securely, and how the information is being used. More than anything the workshop allowed me to see the potential to use data to help research the bigger cancer picture.”

National Cancer Registration and Analysis Service What is cancer registration? If you have been diagnosed with cancer, or a condition that can lead to cancer, the medical staff looking after your health will pass information about you to the National Cancer Registration and Analysis Service. Is your information confidential? Making sure your personal information is private and confidential is very important. Without your consent, or a strict approval process, information that can be used to identify you will only be released to those providing your care. What’s the benefit? Registry information is continually leading to improvements and new information on the prevention, diagnosis and treatment of cancer and so can help future generations. To give each person the best possible care, the registry holds information about how different cancers respond to different treatments.

Now recovering from brain surgery to remove her tumour, Linda is determined to raise awareness about the cancer registration service. “The more data we have, the more we can use it to help people with cancer and find out more about it. I want to promote the service and encourage people to sign up. We need to know more about cancer.”

information about the people who are developing cancer.”

Sophie Newbound from Public Health England said: “We’ve made significant advances in recent years in our understanding of what causes cancer and how best to diagnose and treat it. But we can only continue this progress if we have

The feedback gained from the PHE workshop has helped shape a new patient and public information leaflet and other materials, which will be available very soon. brainstrust will publish details when they’re available.

The registry could also make it easier for your doctor to see whether you could enrol in any clinical trials.

For more information about the National Cancer Registration and Analysis Service visit www.ncras.nhs.uk LO G B O O K : I S S U E 9 – AU G U ST 2 0 1 7

Running to beat brain tumours

brainstrust supporter Amy Edgar took part in this year’s London Marathon to help people living with a brain tumour. She’s already raced the Santa Dash for brainstrust and was keen to take on a bigger challenge. This is her story of the 26.2-mile race.

FTER MONTHS OF TRAINING, injuries, fundraising events, bucket collections, and giving up some of life’s luxuries (wine!), I completed the London Marathon… one of the toughest and best days of my life so far…

The week leading up to the marathon and the nerves were kicking in, apparently, they call it maranoia. I definitely had maranoia! After visiting the expo all those nerves went away and it just turned into excitement. Everyone has been amazingly supportive from family and friends to work colleagues, to complete strangers who have been so kind to donate. I really couldn’t have got through it without all of them.

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The evening before the big day I tucked into a big bowl of delicious pasta and had a very chilled evening. To my absolute delight, I saw my fundraising page reach its £2,000 target. I was touched by everyone’s amazing generosity and it put me in high spirits for the day ahead. My total has now reached over £2,500. The morning of the marathon I travelled up to Greenwich with crowds of other runners and only then did it start to feel real. I dropped my bag off and what did I see, glorious sunshine creeping through the clouds. Getting to the start took some time and I was raring to go. As I finally approached the start line, the atmosphere was incredible; there

were already crowds of people cheering, kids high fiving and people giving out sweets. I managed to see everyone who had come out to cheer me on, which gave me the greatest boost of them all! Even random people calling out my name was incredible. The 20th mile was probably the toughest and the one time I thought about giving up. But there was no way I was going to. I reminded myself why I was doing this. I thought about how my Dad survived his brain tumour and inspired me to raise funds for brainstrust. I thought about all the training I had put in, and I thought about achieving this goal I had set myself. I managed to power through and got to the 23rd mile. As I passed the corner, I could hear my whole family screaming my name, cheering me on and this was the best moment of the whole day and spurred me on until the finish line. There I was running up The Mall towards Buckingham Palace with the finish line in sight, it was all so surreal I could not believe I did it. 26.2 miles in 4 hours 56 minutes.

London Marathon… done! Thank you to Amy and all our London Marathon runners. You were all amazing and the money you raised will make a big difference to the lives of families affected by brain tumours.

Little brainstrust

Around 500 children a year are diagnosed with a brain tumour, and there are many more living with the condition. Little brainstrust exists to support these children and their families, helping them to feel less afraid in the face of a terrifying diagnosis.

Here’s an update on our work so far this year. We can help by: l

Providing coaching-led support by phone or email, helping families overcome challenges and find the best possible outcome for their child and their family

Creating communities of peer support, meeting up regularly to connect and share experiences with others who really understand

Providing useful resources that are endorsed by the clinical community, to help bring clarity, relief and hope when families are feeling overwhelmed

Connecting people with our great network of support services and clinicians so that families can build up a system of tailored support to help them feel in control again.

Sheffield Meetup Meet Ups help families living with a brain tumour to feel less alone, by connecting with other people locally who are in a similar situation. We were delighted to host a great day out for young people with brain tumours and their families in April. Five families joined us for a fun afternoon of bowling, followed by far too much pizza and ice cream!

If you’d like to see our upcoming meetups and find out about meetups in your area – sign up at www.meetup.com/brainstrust

If you or your family would like our support, email claire@brainstrust.org.uk or call 01983 292 405

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Hundreds of toys are distributed throughout UK

Improving care and quality of life for families living with a childhood brain tumour

Thanks to the Sun newspaper’s fantastic Christmas toy appeal, we were lucky enough to be bombarded by boxes of brand new toys early in January. After lots of sorting, packing and posting, over 250 toys have now been sent to paediatric neurosurgical, neuro-oncology and play specialist units around the country. The toys will be given to children as prizes for their bravery, at the end of treatment and to the siblings of children with brain tumours.

Thank you so much ❝ for your kindness, our

patients are thrilled. We have given some out and saved some for bravery prizes and birthdays. We will have enough to give a gift to forty patients which is amazing. Thanks so much once again for thinking of our unit.

❞

Play specialist, Alder Hey Hospital

We still have some toys left and we would love to give them new homes, so if you know a deserving ward then please let us know and we can arrange it. Just email claire@brainstrust.org.uk or call 01983 213 577 LO G B O OK: ISSU E 9 – AU GUST 2 017

S PART OF OUR ONGOING COMMITMENT to be at the heart of improving the lives of families living with a brain tumour, we are involved in some major changes in the way brain tumours are treated, ensuring that the brain tumour community’s voice is heard and that patients are at the centre of changes to policy. Here are some of our recent highlights: brainstrust has been invited to join the UK Proton Beam Therapy (PBT) clinical trials steering group by the National Cancer Research Institute. This will mean that the brain tumour community will remain central to the way clinical trials involving PBT are designed and run, ensuring that families will be fully supported as this technology comes to 2 UK centres (Manchester and London) in 2018.

brainstrust is a contributor to the new clinical guideline for primary brain tumours and brain metastases. This means we have a voice in the clinical care of this disease and can ensure that quality of life plays a part in the guideline.

We have also been listed as a stakeholder in the new National Institute for Health and Care Excellence (NICE) guidance for end of life care for infants, children and young people, meaning that we can represent families who may face end of life decisions while contributing to this new and much needed guidance.

I am feeling so lonely and helpless.

I am so happy to ❝ find brainstrust when

❞

little brainstrust carer

little brainstrust is here 24/7 for children their families and carers.

Help little brainstrust grow

Could you review our website? We need eagle eyed and information obsessed parents to tell us what’s good about our little brainstrust website, and what’s missing. What practical challenges do you have? We want to develop partnerships to find solutions to help our community. Knowing the challenges your family faces will help us find the fixes. Would you like to help other families feel less alone? We’re recruiting peer support volunteers to help support the many families who come to us looking for someone who understands. Get in touch if you can support another family in a similar situation. For more information please email claire@brainstrust.org.uk or call 01983 213 577

little brainstrust is supported by Children with Cancer UK, the Garrity family, The Vera Wolstencroft Children and Animal Charitable Trust and your generous support. 19

Could peer support help you? Talking to someone who has been through a similar experience can help you feel less alone, less afraid, and better able to cope with the challenges you face.

If you’re feeling cast adrift by news of a brain tumour diagnosis, being able to talk to someone who has already been through the same experience can serve as an anchor, and can, in some ways, normalise the frightening, bewildering and isolating experience that is a brain tumour diagnosis. Here at brainstrust we don’t underestimate the value of talking to someone who has had a similar experience. We don’t want people to be alone on their brain tumour journey, whatever their role.

Who are peer supporters?

Peer supporters are trained volunteers who have been through a similar experience to you – whether you are the patient or caregiver. They will provide reassuring support by answering your questions about their own experience and can also: l help you to prepare for your appointments – supporting you to work out what questions you need answered l point you in the direction of useful resources l help you weigh up different treatment options by asking questions to help identify what’s at stake; and l be there to listen at a time when it’s most needed.

How does it work?

Your brainstrust support specialist will ask you some questions to help match you with the right volunteer. You will then receive an email, or a letter if you prefer, letting you know the name of your peer supporter. They will then contact you, either by phone or email. How you proceed with the relationship will be decided between you and your peer supporter and will depend on your circumstances. The relationship could be long-lasting and involve calls, emails and meeting face-to-face (although we ask you not to meet in each other’s homes), or it could be a one-off conversation or email exchange. It’s up to you how much or as little support you’d like. The peer support service will be available from September. For more information call 01983 292 405 or email hello@brainstrust.org.uk 2 0

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