Brain tumour support 24/7. Call 01983 292 405 or email www.brainstrust.org.ukhello@brainstrust.org.uk ISSUE 12 SEPTEMBER 2021 THE MAGAZINE FROM brainstrust – the brain cancer people © H_Linger_Photography Meet Greg and the incredible people continuing Seth’s legacy Inside: Read inspiring stories Join the brain communitytumour Learn about new online Discoversupportpeople-firstbraintumourresearch
After all, before we are patients, we are people. We thrive for the things that inspire us as people, not those that we must do as patients.
It has been a challenging year, but one of which we are immensely proud. In the context of Covid-19, we have surpassed all expectations in nearly all areas of our work. We have been able to help more people and have more impact in more ways than ever before. However, we are painfully aware that there are still many people who have not been able to access brainstrust’s coaching, support and information. These people will be lost, afraid and alone in the face of a devastating diagnosis. We are working now towards achieving our greatest possible success in the circumstances. Key to this will be reaching more people with a brain tumour sooner and galvanising a wider community around our vital mission. No person with a brain tumour should feel lost, afraid or alone. Everyone diagnosed with a brain tumour should have the opportunity to seek support from brainstrust and join our movement for person-centred care.
Eve Flynn, Communications Manager, brainstrust
‘Reflecting our strategy, this evolution in our look and feel centres people at the heart of everything we do. We are the same organisation, with a streamlined look that demonstrates clearly how we make life better for people with a brain tumour. Bolder statements (rooted in evidence) and updates to our colour palette reflect the optimism of our belief that with access to brainstrust support, community and resources, everyone with a brain tumour can have their best possible day.’
N 2020 we updated our key messages and visual identity, to better communicate our ‘people first’ strategy. brainstrust’s name, logo purpose, activities and team remain seamlessly aligned, but with these updates, we are now doing a better job of saying why we are here, who we are and what we do, so that even more people from all walks of life can share an affinity with brainstrust and benefit from our high-impact support.
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Welcome to the 12th brainstrust Logbook!
Will Jones, Chief Executive
We have adapted and been extremely generative during the last 18 months, which have been dominated by the challenges of Covid-19. We have launched new resources, including a new website for little brainstrust, our dedicated arm for children and families, and a new hub for the forgotten but important community of meningioma patients in the UK. We have engaged more closely with the clinical community, and the shared challenge of the pandemic has meant even closer cooperation, collaboration and communication with other charities. We have updated our brand and identity to better align with our ‘people first’ strategy.
Our new look
I
‘Being diagnosed with a brain tumour is devastating, and it’s easy to become locked into a relentless medical process that forgets we are human. We may be patients, but first and foremost, we are people. Our mission is to support those with a brain tumour with a focus on the very human needs they have at each and every step of their journey.’
Ben Young, Trustee, brainstrust
When your partner is diagnosed with a brain tumour, everything changes. Here, Dawn reflects on her experiences and what matters most since her husband, Paul, was diagnosed with a GBM.
We run a monthly virtual Meetup for people with a GBM. Sign up at brainstrust.eventbrite.co.uk
Wife, carer, partner: Dawn’s story
Dawn, Paul and family
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None of us know what the future will bring, so Paul and I are living for today and making sure we love every moment of it.
Paul’s tumour has caused me to reappraise what I consider as being ‘lucky’. Although Paul has a terminal diagnosis, he was lucky that his tumour could be operated on, giving him some extra time. The location of his tumour has been in some ways fortunate; a different location, and Paul’s character change might have been very different – he might have become very antisocial, when in fact the very opposite happened.
Paul and I had always led a very ‘together life’, but before his diagnosis we were still very much individuals, each with our own busy life. We now spend virtually every waking and sleeping hour together. Combined with the weight of a serious diagnosis, life can be claustrophobic at times.
I dislike being seen as Paul’s ‘carer’, even though I often use the term to describe myself. I am first and foremost Paul’s wife, and he is my husband, not my patient. Getting the balance right can be difficult, even more so where the tumour and treatment has impacted on speech and comprehension. I would love to have an appointment on my own with the consultant to ask awkward questions. We learned that the most important person in the hospital is the neuro-oncology clinical nurse specialist (CNS). They take time to explain what is going on, deal with the practicalities, but most importantly, at times when the world is a very dark place, they put their arms around us and offer comfort.
Acting almost as Paul’s PA, I have an encyclopedic knowledge of past and ongoing medical crises, treatments and medication. Then there are the practicalities: Paul could not queue outside on a cold, early morning, waiting to make an ‘on the day’ GP appointment. Neither could he deal with the lengthy appointment-bookingtelephonesystem.
‘He is my husband, not my patient’
Claustrophobia and codependence
The power of love is strong
A shift in perspective
the arrival of a granddaughter have been the icing on his survival cake.
The brain tumour community has been amazing. There has been much love and laughter along the way in our support groups.
Paul’s tumour has emphasised the importance of family and friends. Our daughters have been wonderful throughout it all, showing unstinting love and support. Their response to seeing their much-loved father so ill and so much changed is to surround us with care and kindness. The girls have certainly been Paul’s focus from the very beginning. A wedding and
Whether you book a formal coaching session, ring our support line or read our resources, coaching principles are embedded in the conversations we have and the resources we create.
be available to order at shop.brainstrust.org.uk.
Introducing the brainstrust 2022 calendar
Caregiver after brainstrust coaching
‘I thoroughly enjoyed “having a go” and want to thank you all for giving me the opportunity, as I really found it
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CalendarsWebbwill
Created by our community, the 2022 calendar is the perfect addition to a Christmas stocking.
in some tough choices for our judges, and this new calendar is the result.
N
‘Thank you so, so much for your help and advice the other day. I think the best thing is I feel more in control now, as I have a plan of action as such, whilst before I was floundering, and I don’t have any support network to help me with things. Thank you for that.’
AS TRAINED COACHES, our support specialists are here to help you make change happen. They will work with you to identify what you need to do to feel confident and in control. This can mean helping you to explore the questions you want answered, what your values are, and who is on your team to give you support when you need it most.
OT ONLY is this the first time we have produced a calendar, but it is also an opportunity to celebrate our twelve talented Great brainstrust Create-Off competition winners.
asktoEmailPatienthello@brainstrust.org.ukorganiseacoachingsessionoranyquestions.
Throughout Brain Tumour Awareness Month, in March, we joined our community as we focused on the importance of self-care. We chose to embrace the use of art and creativity to unwind, relax and recharge, and we encouraged everyone to get involved as we launched our brand-new competition: The Great brainstrust Create-Off. We had an amazing response from our hugely creative community, which resulted
‘Today I am taking your very good advice – I have written down my priorities, and I am going to sort them out one by one. That might sound very black and white, but my goodness, it’s a good feeling that it just might get me somewhere. What you have said to me is brilliant! I know what I am doing.’
So however you access coaching, you’ll access strategies and tools to help you achieve clarity and improve your quality of life.
When life feels all consumed by your brain tumour, coaching helps you to take control and focus on the things that matter the most.
Coaching with brainstrust
therapeutic, and I intend to now carry on. As I have a brain tumour and my husband has a incurable bone marrow cancer, it’s good for us both to be able to escape for a while, and I have to say that while I was painting, I did just that. You seem to forget everything else!’ Angela
Long-sleevedtee £14.50 Dark£teegrey 10 Logo hoody £19.99 1 October 2021 String bracelet £2 Grey beanie £8.99
Share Grey – share a photo of you in your grey gear with #weargrey and send a donation to help people with a brain tumour.
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Buy Grey – get yourself some Wear Grey merch. We have got T-shirts, beanies, face masks and even more to choose from in our online shop. Visit Wearshop.brainstrust.org.ukGrey
This year’s grey gear:
‘You have helped me more than you know. It’s the time you’ve taken, the kind words and advice, the listening and generosity you’ve shown me that make everything feel that bit easier. Your advice and time have been invaluable.’
VERY YEAR on 1 October, we wear grey – the internationally recognised colour for brain tumours – to give visibility to this invisible illness. When you choose grey and donate to brainstrust, you really are changing lives, by helping to ensure we can provide dedicated support to people with a brain tumour and their loved ones.
Caregiver
No matter who or where you are, you can take part in Wear Grey 2021 in three easy steps:
Choose Grey. Change Lives.
E
– on 1 October, wear your grey gear proudly to show your support for the brain tumour community.
‘It was at this point that my attitude towards charitable giving changed forever, as I suddenly found myself benefiting from someone else’s fundraising, and I experienced the impact that support has on a person’s life first-hand.’
‘If
Beauty in the Brain has helped not only Sammy but countless others living with a brain tumour. There have been many who have found comfort and support in her blog, and Sammy has helped even more people access life-changing support through her incredible fundraising for brainstrust. She has now raised over £4,700 to help people with a brain tumour.
Beauty in the Brain (BITB) was founded in 2019, when Sammy Taylor was preparing for brain surgery to remove a pilocytic astrocytoma.
Paying it forward
Visit www.beautybrainuk.com to read Sammy’s blogs and shop her collection of T-shirts, jewellery and more. You can also follow Beauty in the Brain on Instagram: @beautybrainuk.
my bangle daily throughout 2019, and realising how powerful it had been for me, sparked the idea to turn it into something that could continue to help and inspire others on their own journeys.
Knowing that most of our anxieties stem from the habitual feelings of worry and the irrational anticipation we have for threats and dangers, I knew I needed to switch my mindset and focus on the good things around me. Because of this, I inscribed my favourite mantra – ‘something good is about to happen’ – onto a beautiful bangle to offer a little boost whenever I needed it and a constant, subtle reminder that everything would be okay, because better days were on the Wearingway.
Beauty in the Brain
BITB has been the best focus. Every single aspect of it has aided my recovery in some way. From practising my stroke-affected handwriting on packaging labels and personalised notes (which I still do!) to strengthening my cognitive ability by blogging about my recovery journey, it has immersed me into the brain tumour community and provided me with opportunities to meet others, share stories of hope and continue to donate to causes that have played a huge part in this journey.
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There was a very surreal moment on my brain tumour journey, when brainstrust paid for me to have a private consultation with a brain surgeon after receiving two very conflicting views.
Since founding BITB, it’s grown to even more inspirational quote bangles and bracelets, meaningful necklaces, positive stationery and now T-shirts, each piece inspired by an element of my journey. I wanted a way of recognising that life throws curve balls at us, but with the right tools, beliefs and beautiful daily reminders, we can handle any challenge, overcome adversities and change our reactions to events that might be out of our control.
The journey continues
Quote bangles from Sammy’s store that read you can you must’
From that moment on, I promised myself that, as soon as I was better, I would find a way to support them, which is why I continue to donate 10% of profits.
skill I have been so grateful for in the past few years. I’ve always felt so fine in myself that I didn’t even realise how much I really needed an unbiased ear until I started receiving it.
R
During her appointment, the neurosurgeon shocked Sammy when he told her to take off the prism glasses. ‘It’s not your eyes that are the problem,’ he said. ‘It’s your brain, and your brain will eventually learn to adapt. When this will happen is unknown, but you lose nothing by trying for the next few years. Whether the double vision or spinning improves won’t even matter. Your brain will have learned to ignore it, and so your symptoms should naturally subside.’
Sammy’s regaining her smile after surgery caused a cerebellar stroke and facial paralysis
For Sammy Taylor, like so many others, the consequences of brain surgery have been far-reaching. While it completely removed her tumour, she suffered a cerebellar stroke and facial paralysis, has had to undergo further surgeries and now lives with visual impairments, including double vision and oscillopsia (world-spinning).
Alongside therapy, a long-awaited appointment with a specialist neurosurgeon provided Sammy with some vital perspective. She arrived at his office wearing prism glasses. Having initially worn them following her strabismus surgery in March 2020, when her vision became double again at the start of this year, she turned to them once more.
Many challenges remain, but Sammy now has a renewed sense of optimism: What makes it different from the previous few months of sheer overwhelm and genuine fear is hearing that the brain will take time to heal. Talk therapy, good friends, lots of laughter and actually continuing to go out and do things have greatly improved my ability to cope and will continue to aid my recovery. I’ve been reminded not to lose hope just yet.
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At her doctor’s request, Sammy took some time off work, agreeing to focus on doing things she really loved, and began talk therapy: I’m usually so strong and naturally positive, instantly seeing the good in every crisis, challenge or situation, a
He told me to come back in a year for further tests, and since that day, I’ve had no aids. There will be days when I feel so dizzy and drunk that I struggle to walk down the street. But after tests in the surgeon’s office, I also know that it’s mostly an internal feeling, as his checks confirmed that I was walking fine despite feeling as though I was stumbling. It’s all invisible to others, and that makes it far more challenging, given that I do look and seem so well.
Healing takes time: two years post brain surgery
ECENTLY, SYMPTOMSWORSENING have caused her natural optimism to be tested: As soon as my eyes started worsening, so did my confidence. I struggled to leave the house or walk down the street. When others see my smile starting to return, as it amazingly now is, they beam with genuine joy for me but also remark that it will soon all be over. I’ve given up saying anything in response to that and instead just quietly observe how I wish with all my heart I only had my smile to worry about. No one understands the severity of my eyesight, because it’s invisible, and two years of constant appointments, researching and trialling things reminded me of that.
With delight, we welcome formally to the brainstrust community Puneet Plaha, MBBS, MS, MD, FRCS (SN), who joined brainstrust’s board of trustees on 4 March 2021
‘Each time I attend a webinar, I learn more, helping me to cope and accept better. No one else is able to offer this.’
Our team of support specialists has also continued to run webinars in response to the issues that our community tell us are so important to them. These have included Living Well with Fatigue, Managing Behaviour and Personality Change, Coping with Uncertainty, Positive Communication, Coping When You’re Overwhelmed, and The Psychology of Authentic Happiness.
Louise Baker Hypnotherapist, ‘Calmness and connectivity sessions’
Specialist and relevant information conveyed by expert speakers
Dr Wai Liu Senior Research Fellow, ‘Cannabinoids explained’
brainstrust ofboardexpandstrustees
He qualified in medicine from one of India’s premier institutes, JIPMER, Pondicherry University, in 1996 and completed his master’s degree in surgery from the same institute in 2000. He undertook an MD degree from Bristol in 2011 He completed his neurosurgical training programme as part of the South West rotation (Bristol and Plymouth) from 2005–10
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Dr Patrick Murphy Senior Clinical Neuropsychologist, ‘The role of neuropsychology in the treatment & management of brain tumours’
Our strong ongoing relationships within the clinical community have resulted in many leading experts and clinicians sharing their expertise generously at webinars for the benefit of brainstrust’s community. At a time when access to clinicians has been a challenge, the chance to hear directly from world-renowned experts has
Access to experts through brainstrust webinars
UNEET is an associate professor surgeryendoscopicbrainwithoncologyconsultantandneuro-surgeoninOxford,aspecialistinterestintumours,especiallyminimallyinvasiveandawakesurgery.
‘I am an occupational therapist working within cancer care, and this webinar was very informative and taught me lots about radiotherapy that I didn’t know in such detail. It will help me to understand this treatment better and to explain this to clients I meet who have questions about it.’
been welcomed and has helped people to feel more in control, more resourced and better engaged with their own care.
Maria Denise Pessoa Silva Head Occupational Therapist, ‘Helping children live well with fatigue’
The opening up of our webinar series to healthcare professionals has ensured that expert knowledge has been shared widely within clinical communities. This means that broader patient care is positively impacted through increased knowledge and understanding of the specific issues faced by our community.
Alongside his vital contribution to brainstrust’s governance, Puneet is looking forward to helping brainstrust reach more people who have received a brain tumour diagnosis and working with the team to hone our support for clinical research, which has to date helped attract £20M in funding.
‘The imaging webinar gave me the confidence to open a conversation with my oncologist yesterday about my scans, and I actually felt able to question what was being proposed. We had what I feel was a really positive conversation. The webinar gave me the confidence and knowledge that I needed – I wouldn’t have been able to do this before.’
We have been helping the brain tumour community feel more resourced and more in control by developing our programme of expert-led webinars, covering topics you have told us are important.
He is a consultant neuro-oncology surgeon lead for the Oxford brain tumour MDT, and he has been the neuro-oncology lead for Thames Valley since 2012.
P
‘I would say to anyone thinking about signing up to Follow the Seagulls to definitely do it! When I did it in April, I did it on my own, and it made me speak to and get to know people and hear about their reasons for walking, who they were walking for and the incredible strength people have shown in the face of this horrible disease. Until something like this happens, you don’t realise how many people are affected by brain tumours, the devastating impact they have on people and their families and the really vital work that brainstrust does.’
What are you waiting for?
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April2022
Registration is just £20 per person (£10 early bird until 1 December 2021). All we ask is that you raise at least £500 in sponsorship to help brainstrust change the world for the brain tumour community. Our fundraising team will be here to support you every step of the way to achieve your target. For more information, www.followtheseagulls.comjulia@brainstrust.org.ukemailorvisit.
Whichever location you choose, you’ll experience stunning views, unrivalled team spirit and a chance to do something epic to support people with a brain tumour. Sign up now.
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Be part of unforgettablesomething
Andrew, Follow the Seagulls Scotland, 2019
23 & 24 April 2022 Fife and Dartmouth
9 & 10 April 2022 Whitby and Isle of Wight
Sammy, Follow the Seagulls Devon, 2019
ILL YOU TAKE ON this great adventure to help the 60,000 people in the UK who are afraid and alone because of their brain tumour diagnosis?
‘The feeling of achievement for yourself and everyone you walk with is incredible, sharing an experience that only those on that weekend can ever have. It reaffirms what you are doing this for, and knowing that you are not alone with whatever you have gone, or are going through, gives you so much strength and hope.’
The big brain tumour trek, Follow the Seagulls, will be back next spring in Scotland, North Yorkshire, Devon and on the Isle of Wight, covering 50 miles, in two days, on foot, and raising vital funds and awareness. Join us to do something EPIC to support people living with a brain tumour.
l Over the year, the well-being of people we support has improved across our six key indicators, as chosen by our community as their highest priorities.
During the year, we were able to provide coaching, support and information directly to 604 new patients or caregivers, and our team handled 1,662 one-to-one contacts by phone or email.
build communities, or educational, expert-led webinars, to help people engage with their care and take control of their care and condition.
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‘Meeting other people who had a similar operation assured me that life will go on! Although you feel different from the person you were before, it is easier to accept the new me, when you hear others did or are still working on it. It is very important to be able
l On average, people have progressed nearly a whole point (0.96/5) or 19.2% across the six indicators, meaning they feel they are moving towards a less difficult position.
Our expenditure 2020/21Our income 2020/21 activities:Charitable £459,526 Total expenditure: £511,271 Governance: £13,038 Generating income: £38,707 Legacy giving: £2,000 Government coronavirus pandemic support: £66,627 Personal donations: £77,539 bodies:andcharitiesfromGrantsotherpublic £358,669 Corporate support: £42,196 Gift recovered:Aid £33,437 Trading: £11,013 fundraising:Community £41,404 Partnergroups:fundraising £45,219 Team brainstrust: £62,477 Interest: £40 Total income: £740,621
Topics covered include shielding; vaccines, risk and efficacy; personal stories; and the impact of the pandemic on brain tumour care and treatment. To the end of March 2021, 5,000 people accessed the hub.
Our dedicated Covid-19 support contained news and information that was relevant, accessible, trustworthy and easy to understand for people with a brain tumour: brainstrust.org.uk/corona-comms.www.
l We are making the biggest impact in helping people to feel ‘part of a community’, as this sees the highest average increase (+1.09). We are also helping to guide and make others feel less alone, as the indicators ‘resourced’ and ‘supported’ follow closely, both with an average increase of 1.03
Patient, London, following meningioma Meetup, March 2021
Vital brainstrust support in 2020–2021
The brainstrust progress tracker helps us understand where people need support most and where we are having the greatest impact
We know that while we are creating resources and means to support the brain cancer community, it’s just as important to keep track of how well we are doing it. Here, you’ll find some figures and information that we have collected on our impact, according to our community.
Progress trackers
Our impact this year
visitors who engaged with evaluation, 91.4% (1,241/1,358) told us that brainstrust’s online information helped them feel more resourced, more confident or more in control.
On brainstrust.org.uk, 136,269 people sought information, visiting 315,441
Ofpages.the
to share your problems with other sufferers and to be patient to reach the better feelings.’
There were 1,034 people who attended 128 online events. These events were either social events, to help people tackle isolation and to
The brainstrust online support group grew to 2,879 members.
Head to: Janicetheuk/meningiomawww.brainstrust.org.toaccesssite.andElly,theBrainTumourTwins
supportCommunity-driven
l I am newly diagnosed with a meningioma.
We have worked with members of our meningioma community to create this site, and there are two people who deserve a special mention: Janice and Elly. You may know them as the Brain Tumour Twins!
It’s thanks to Elly and Janice and their dedicated fundraising that we can reveal this brand-new website, providing tailored information and support for people with a meningioma.
Best friends with matching brain tumours, they have supported each other throughout treatment and the many challenges that a meningioma brings.
diagnosis and treatment and, perhaps most importantly, live well with a meningioma. A huge thank-you to all our supporters who helped us raise the funds for this amazing resource!’
Meningiomas Matter. So does meningioma support.
‘We’ve lived together, worked together, grown into real-life adults together, and now … have matching brain tumours together. What are the odds? Well, microscopically low, and yet here we are.’
l I want to hear from others with a meningioma.
Our meningioma website is full of tools, support and information that will help you cope with your diagnosis and get back to the things that matter most – the things that make you you.
‘We’re thrilled at the launch of brainstrust’s new website dedicated to providing advice, information and support to people with a meningioma. We hope it will help people like us navigate their way through
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l I am having treatment for a meningioma.
Janice and Elly have worked tirelessly to raise vital funds for people with a brain tumour. First, they organised their ‘30 miles for £30K’ running challenge, inspiring their community of friends and loved ones to join in, and then they arranged an epic prize draw featuring some premium prizes. As it stands, they have raised an incredible £15.5K!
l I want to live better with a meningioma.
It also contains stories from incredible members of our community who are living with and beyond a meningioma diagnosis.
The hub provides support and information for people with a meningioma and their loved ones, across four categories.
They know that most people with a meningioma don’t have a best friend who knows exactly what they are going through, so they have been tirelessly fundraising to ensure that people with a meningioma have somewhere to turn to.
Earlier this year, we launched a brand-new online hub to help people cope with the challenges of living with and beyond a meningioma.
Our Art Time sessions have been a really popular addition to our online event offering. Led by Maddy Dobson, a qualified tutor, these sessions provide you with the opportunity to express your creativity and take part in a mindful activity among a friendly, supportive group. The group is open to anyone, whether you are an established artist or haven’t picked up a paintbrush in years.
Creating communities
Peer support
for you to share your experiences and offer support to others. Just search for ‘Brain tumour support brainstrust’ on Facebook and answer the joining questions to become a member.
Our peer support service allows us to connect people who have a shared or similar experience on a one-to-one basis. All our peer supporters have a lived experience of a brain tumour diagnosis, whether that be through their own diagnosis or a loved one’s. How you communicate with each other is up to you, but a support specialist will support the relationship and keep in touch to make sure it is working for both of you.
since March 2020,
Sharing final pieces at the end of an Art Time session
To access peer support, call today on 01983 292 405.
first
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‘Completely forgot my worries and felt relaxed concentrating on what I was asked to paint.’
Facebook community
With nearly 3,000 members, our Facebook group is a fantastic way to connect with others through social media, at any time of day. This private group is a safe space
Meetups
Art Time
We moved our events online last year, so people could continue to connect with others throughout the pandemic. Our Virtual Brew now runs monthly, alongside our other, specific groups, including GBM Group, Meningioma Matters and Family and Friends.
After 16 months, it was a joy to connect face to face this June in Brighton. We look forward to meeting again in person across the country, but we will be continuing our online events to ensure that everyone has a chance to connect, no matter where you are.
E HAVE ALWAYS believed in the power of creating supportive communities, and we know the positive impact these connections can have. Over the past year, during a time when we all had to change and adapt how we socialise and meet others, we have been able to expand our community and keep people connected.
When you or someone close to you is diagnosed with a brain tumour, connecting with others going through a similar experience can really help you to feel included, not isolated, and part of a unique community of people who understand.
‘Hearing other people’s experiences and realising that I’m not alone in many of the thoughts that go through my head has really helped me. Although I can’t control what is happening to me, I feel I now have a better understanding of a way to approach things, and a framework of things to try.’
‘I joined the Facebook group, and its community makes me feel not so alone any more. Just knowing that there is a place where I can go to for advice and support if and when I need it is so comforting.’
‘I actually can’t tell you what a relief I feel having someone to let off steam to that is removed from the situation but is also sensible and understands. I actually can’t thank you enough.’
The brainstrust Meetup on Hove Lawns
Caregiver
When you meet or exceed your fantastic fundraising target, we’ll send you a brainstrust medal and certificate to say thank you for your incredible support.
Whether you choose to walk, run, row or ride, this flexible virtual event allows you to do it your way. Skip, step, swim, whatever works for you! Stay undercover at the gym or explore the great outdoors, solo or with your amigos. Your incredible fundraising efforts will support the 30 people who have heard the words ‘you have a brain tumour’ today.
By raising £200, you’ll help to fund four hours of coaching with one of our dedicated support specialists.
HE CHALLENGE is to take on 30 miles over 30 days, all in support of the 30 people who are diagnosed with a brain tumour every day here in the UK.
We were overjoyed by the response to Run, Row, Ride in November 2020 Inspired by personal experience, or that of a loved one, our community came together to each conquer at least 30 miles in 30 days, and together #teambrainstrust covered over 2,500 miles in one month. Incredible! Their hard work and phenomenal fundraising efforts combined to raise a team total of over £30,000!
RUN, ROW, RIDE 30 MILES, 30 DAYS, YOUR WAY
‘Your help has been monumental to me in working through my thoughts and understanding of this disease. You have helped me gain a perspective on what has happened. Thank you so much for all your time and kindness.’
T
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Registration for this event will open in September 2021. For more information, please orfundraising@brainstrust.org.ukemailvisitourwebsite.
Run, Row, Ride is back this November for the fourth time, and we want you to help us crush it!
The question is … are you with us to smash this exceptional record in 2021?
Our coaching conversations help people to focus on the things that matter most to them, so they can live their best day, every day. They help to cut through the overwhelm and increase understanding of their personal situation.
For those 30 people, the road ahead looks scary and uncertain. By taking on Run, Row, Ride, you’ll aim to raise £200 to ensure that brainstrust can be here to help families feel less afraid, less alone and more in control.
#TeamSeth–acommunityinspired
A surprise friendship
Seth Dickenson won the heart of everyone he met. That’s why, in his memory, people across the UK have joined #TeamSeth, remembering a wonderful little boy and ensuring that his legacy lives on.
Making memories
In 2020, the Dickenson family received some devastating news. Seth’s brain cancer had returned. In true Dickenson fashion, his mum, dad and three amazing older brothers committed to making however long they had left together fun-filled and unforgettable, and their loved ones across the country pledged to do the same.
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Greg at Follow the Seagulls Adopted by the Dickensons – Greg and the family
The Dickenson brothers before their head shave
Sam and James Dickenson signed up for the Follow the Seagulls challenge because sadly they knew all too well the impact of a brain tumour diagnosis – their little boy Seth had just completed his first round of treatment when they took part in the Samevent.said:
‘We first met Greg on our Dartmouth Follow the Seagulls walk in 2019. I remember spotting him with his long hair, beard and Gandalf-style
walking pole and thinking, “Ah, he looks like someone we’d get on with!” Fifty miles and a few beers later, we’d established that yes, we all shared a sense of humour, and what really struck me was that, unlike us, Greg had no other reason to be supporting brainstrust other than sheer generosity of spirit. He wanted to do something local for a good cause, and walking 50 brutal miles of the Devon coast path was it. Now poor, unsuspecting Greg was about to find out that he was going to become adopted by the Dickensons! I took the boys to visit him over the summer, and a firm friendship sprang up.’
As he sat on the bus heading to the start of the 2019 Follow the Seagulls Dartmouth trek, Greg had no idea that he’d meet a couple who would soon become his great friends.
The Harriers raised over £5,500 with this virtual run, an incredible amount that can provide vital support for families facing this devastating news. The smile on Seth’s face when he saw the pirates was priceless.
And that was our boy all over. Despite everything, always laughing, always winning people’s hearts. Which is why when Greg mentioned to us about doing the 365 swim in Seth’s name, we felt not only honoured that someone would take on this challenge in the name of our brave little warrior but also immensely grateful that through this act, our little boy will be talked about and remembered.
Greg is planning to extend the swim a few extra days, so that the final swim can land on the anniversary of Seth’s funeral. He’ll be joined by Seth’s family and friends for this final swim, where they will all pay tribute to this amazing little boy.
In May 2021, Seth sadly passed away at the age of seven. Moved to do something to show his support for his friends, and honour Seth’s memory, Greg pledged to complete a year-long challenge: He was a fighter and an amazing little human. Inspired by Seth, I’m now taking on another challenge of wild swimming for 365 consecutive days. No wetsuit, all weathers and conditions.
Remembering Seth
the sea for the last year of his life, he was never happier than when he was beside the sea, so Greg’s challenge seems incredibly appropriate. After Seth’s funeral, we gathered on the beach, and at least 20 people joined Greg in his swim for the day, to mark Seth’s passing and celebrate his life. It was an incredibly moving moment as the swimmers joined together in a circle of friendship to remember Seth and his incredible zest for life.
‘Well, I’m blind in one eye aren’t I?’ Seth replied matter-of-factly, properly putting Greg back in his place with a twinkle in his (good) eye!
If you’d like to show him some support, head to his Instagram page @greg365challenge
Greg is wild swimming every day for a year in Seth’s memory
Here you’ll find a link to his fundraising page, as well as daily videos of his swims.
Greg’s challenge
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I think one of a parent’s greatest fears over losing a child, aside from the grief, is that their child, their world, will be forgotten or that people will be afraid to mention their name for fear of causing further hurt. But in fact, talking about Seth, sharing his story, his bravery and his absolute determination to live his life to the full helps us to feel that his short life wasn’t for nothing. We hope that his journey will inspire other people to keep going when times are tough and that it will push people to achieve more than they think themselves capable of. Greg’s swim challenge is a part of this, his desire to support brainstrust in Seth’s memory, to keep that spark of determination alive, means that other people will benefit indirectly from our son’s short life. The beach was one of Seth’s favourite places, and although health problems meant he wasn’t allowed to go in
Greg aims to raise an incredible £3,650 to match his daily commitment to the challenge.
A couple of pirates on their 10K!
‘Why not, Seth?’ Greg asked.
As a family, we all love a swim, but the thought of taking on a 365 wetsuitfree swim challenge is a really bold one, and we hope to support Greg as much as we can through the coming months, as a support to brainstrust but also as a huge thank-you to a stranger who became a great friend to us all in our time of need. Thanks, Greg! Together we are all #TeamSeth!’
I think my favourite story that Greg has told us is that playing catch with Seth down on the beach one afternoon, Seth said, ‘Greg, I’m not very good at this game!’
A challenge that Seth particularly loved was taken on by the Maidstone Harriers back in March. This virtual 10K was pirate-themed (Seth’s favourite). Seth loved it when the pirates knocked on his front door and he could sing them pirate songs, inspiring them to keep going and not give up.
Unsurprisingly, Sam has been incredibly moved by friends and family who have taken on challenges for #TeamSeth:
You’ll find Greg near the resting tide or the rugged shores – come rain or shine, he’s well on the way to achieving his goal of braving the wild waters for 365 days, and we are in awe of his extraordinary fundraising efforts. With colder months approaching, he’ll need your support more than ever.
#TeamSeth
#TeamSeth has raised thousands of pounds to support other families affected by a brain tumour. From head shaves to wild swimming to long-distance running, their creativity knows no bounds!
3. understanding the best treatment when decisions are
At brainstrust, we believe that people with a brain tumour should be at the heart of clinical research, from setting priorities to helping develop trials that improve outcomes for people living with the disease. We work with researchers in the clinical field, helping to make life better for people with a brain tumour today.
SpecialNeuro-oncologytheCollaboration:CochraneCollection
Thesedifficult.systematic reviews have already supported many recently funded, NCRI (National Cancer Research Institute) adopted studies. These include Future GB – a neurosurgical trial looking at different technologies – and the Spring trial, which explores the use of prophylactic anti-epilepsy medication in patients who are having brain tumour surgery.
Find out more about the Cochrane Reviews cochrane-reviewswww.brainstrust.org.uk/here:.
We collaborated with the Cochrane organisation on their Neuro-oncology Special Collection. These systematic reviews on brain tumours bring together years of collaborative effort to transform the clinical research landscape, making it relevant for people with a brain tumour.
Find out more tumour-researchwww.brainstrust.org.uk/brain-at
2. shared decision-making and risk sharing in glioma
People-first brain tumour research
1
. getting a prompt, safe and accurate diagnosis
Why is this important?
To date, brainstrust has developed public and patient involvement (PPI) strategies for over 80 neurooncology trials and represents PPI at co-applicant level in several multicentred trials. This work has attracted around £20 million to neuro-oncology clinical research and ranges from research looking at why people get brain tumours, quality of life
We know that our community wants to be involved in research, and we know that patient involvement improves research quality. That’s why we launched PRIME – our Patient Research Involvement Movement –earlier this year. Joining PRIME puts patients and caregivers, our research advocates, at the heart of clinical research. For researchers, PRIME will strengthen applications so that more funding is attracted, and clinical research will be better placed to transform the experience of people living with a brain tumour.
Bringing the brain tumour community closer to research and research closer to the community
The reviews’ findings can be categorised into three broad research areas, representing the interests and concerns of people with a brain tumour:
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A genotype does not explain how a person perceives their health state, what motivates or stands in the way of behaviour changes, or what life events and stressors are competing with the ability to maintain both health and well-being.
(e.g. why people get fatigue) and treatments such as neurosurgical options and protons vs. photons.
Systematic reviews identify and analyse all research published on a particular topic. They provide reliable insight into the effectiveness of interventions, highlight where knowledge is lacking and, crucially, provide a guide for future research.
HE PEOPLE WE LOVE never really leave us. We remember them every day in ordinary moments – when we turn the TV to their favourite show or pick out their favourite mug to make our morning coffee.
l organise a coaching session.
New little brainstrust site makes accessing support for children and families easier than ever before
You can find tons of information, resources and support that will help you and your family to cope with the challenges of a childhood brain tumour on our new website. It is bright and engaging, and children can also access this vital resource to learn more about brain tumours and treatment, so they can feel less afraid when it comes to living with a brain tumour.
Explore the new website usIfwww.littlebrainstrust.org.ukat.youhaveanyquestionsgiveacallon 01983 292 405 or email hello@brainstrust.org.uk.
l learn how to manage side effects, like fatigue
Whether you want to remember the magic of the ordinary or a once-in-alifetime experience on the brainstrust memory wall, you can honour wonderful memories of wonderful people no longer with us, and you’ll be providing vital support for people with a brain tumour today.
Wonderful memories
l join the little brainstrust online community
l request resources
l read stories from the little brainstrust community
l find events
On the new little brainstrust site, you can:
HEN YOUR CHILD has been diagnosed with a brain tumour, your whole world turns upside down. little brainstrust is here to ensure that you and your loved ones have somewhere to turn to.
l find out about treatment options
T
To add to the memory wall, visit wonderful-memorieswww.brainstrust.org.uk/.
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l learn about tumour types
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Every year, the brainstrust community finds more and more exciting and inspiring ways to show its support for people living with a brain tumour and their loved ones. Your passion fuels our mission. Without you, we couldn’t be here to help people with a brain tumour when they need it most. Here are some examples of the incredible fundraising you have done this year.
‘The Ian “Figis” Phillips memorial continues to go from strength to strength, being played now annually at Ian’s former club, Caerphilly. Friends and members continue to play in Ian’s memory and raise money for the charity that Ian himself supported. This year’s winners were presented with the trophy by Ian’s wife and parents.’
Follow Geoff’s journey on Instagram: @gworsley24.
Still to come for 2021, Geoff will be taking part in three further marathons in Brighton, Chester and Frankfurt, with an eight-hour Dawn to Dusk run to finish the year! Geoff has raised over £2,200 with incredible support from his community, TBSC,
A marathon effort: Geoff Worsley
Andy Phillips
Fundraising community
GeminiSix and SAM Charter, and we are in awe of his dedication to the challenge and the total number of miles Geoff has run to support the brain tumour community. Geoff said: ‘It’s fantastic to raise the money doing something I love (most of the time) doing. Of course, I’d like to do more.’
This year, club members gathered on 26 June 2021 to pay tribute to Ian, with the tournament raising an incredible £1,000
The Ian ‘Figis’ Phillips Memorial Cup golf tournament has become an annual fixture for Caerphilly Golf Club as a day to remember friend and club member Ian Phillips, and this year was no exception.
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The tournament was established in 2017 and to date has raised over £6,000 for brainstrust, a charity for which Ian himself fundraised. Ian was diagnosed with a brain tumour in 2009, but ever the keen sportsman, Ian chose to support others in the same situation, going on to lead a team of runners in the Cardiff 10K in 2012. His generosity has continued, to this day, to inspire others to do what they can to support people with a brain tumour and their loved ones.
The Ian ‘Figis’ Phillips Memorial Cup golf tournament
him complete Race to the King, an 88 km ultra-marathon from Arundel to Winchester in June, with more runs of assorted distances over the summer. Reflecting on how it feels to be back attending races again after having to participate virtually for so much of last year, Geoff said, ‘It’s such an amazing feeling. The support from other runners is so incredible. Still hand sanitising as much as possible and staggered starts, but it’s great. Official times and having other people to run with.’
With things opening up again, Geoff has been able to get back to attending races, and this summer saw
You may remember Geoff from last year’s Logbook. In 2020, he competed in an astonishing 12 events! If he had to choose one highlight, he says it’d be ‘doing the London Marathon as a virtual event, running loops around the local farm. It was the 40th anniversary of the London Marathon, and it became a Guinness World Record for greatest number of registered participants.’
Mark,community.Jo,James
and Martin started their challenge at 8.30 a.m in London, and 5 hours 37 minutes later, they arrived on Brighton Palace Pier, having travelled an intense 64 miles! Their bike ride has smashed their target and raised a huge £1,520.80
Legacy Festival Returns!
‘Lloyd would have been 40 the day before the festival started this year. We celebrated his birthday as a team and shared some wonderful memories, and I really wanted to make this whole event a celebration. His legacy is that other people with a brain tumour get the support that they need.’
WOMAC (Women on the Move Against Cancer) is a fantastic organisation operated entirely voluntarily by women who work within the automotive industry. Every year they fundraise for a different cancer charity, and for 2021 they chose brainstrust. Georgia Fox, chair of WOMAC, said: ‘Dealing with a cancer diagnosis can be difficult not only for the person with cancer but for their family and friends as well. Charities like brainstrust help people find the right information or the right person to contact, which can often make living with cancer that bit easier.’
June 2021 saw four determined cyclists from CSC Recruitment take on a commute with a difference. With working from home still the norm for many, when the time came for four colleagues to meet up in person in Brighton, they chose to turn their journey into a fundraising challenge bike ride and go the extra mile to raise support for the brain tumour
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Next up in the CSC Recruitment fundraising calendar will be their annual charity pub quiz. Despite having to hold last year’s as a virtual quiz they still raised a brilliant £500 for the brain tumour community.
Legacy Festival 2021 raised an incredible £6,872, meaning Lloyd’s Legacy has now raised almost £40,000 for brainstrust, and we couldn’t be more grateful. A huge thank-you goes out to the event organisers, volunteers, supporters, and everyone who attended. The proceeds raised at Legacy Festival will help to fund counselling sessions, a cause which Lloyd himself was very passionate about.
With everything from ska to rock, and funk to Britpop, there was something for everyone over the course of the weekend, and the performers absolutely gave it their all.
Their fundraising efforts have already made a life-changing difference for brain tumour patients and their families, with donations so far totalling over £10,000 towards our brain box and Wonderful Memories appeals. Thank you so much for your support, WOMAC!
Legacy Festival is an annual three-day event organised by Lyndsey Rowe, founder of Lloyd’s Legacy, as a lasting tribute to her son. After a year away due to Covid-19 restrictions, this July, Legacy Festival returned with a bang!
Covid-19 restrictions meant their usual annual fundraising gala dinner couldn’t go ahead, but the team quickly found other ways to raise vital funds. This has included entering a team into the London Landmarks Half Marathon as well as dedicated WOMAC Weeks in July.
To Brighton for brainstrust: CSC Recruitment
Wonderful women of WOMAC
UR FUNDRAISING PLANS were definitely challenged over the past year, and we are extremely grateful for the generosity and flexibility afforded to us by our grant funders. Long-standing relationships enabled us to be front of mind when emergency funding became available, and we were fortunate that two of our existing supporters also became distributors of DCMS government support.
It’s been a challenging year, and the incredible support from grant-makers such as these has enabled us to keep delivering our essential service during a time when it has been most needed. We are forever grateful for your support. Thank you.
We’re also grateful for the multi-year support of Children with Cancer UK for our little brainstrust service, which came to an end in May this year.
We have been fortunate to establish new funder relationships as well, with the Edward Gostling Foundation providing an initial emergency grant, and then inviting us to successfully apply for another later round of funding.
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.
AS DATES FOR MARATHONS, TREKS, AND FAMILY FUN DAYS start to be confirmed for 2022, we are building a whole calendar of opportunities, with something for everyone. Whether your passion is running, yoga, walking or cycling, or if you are looking for a challenge for the whole family, we are searching the country for the most amazing fundraising experiences to share with you – because every step, every stretch and every challenge makes an incredible difference to the support brainstrust can provide for the brain tumour community. We already have places in the following events for 2022:
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The National Lottery Community Fund continues to support us, both with existing funding in England for our support specialists in London and the South-East, Midlands and Central South regions, as well as awarding us emergency funding as part of the DCMS remit. They also supported us in Scotland with a grant that allowed us to return our support specialist from furlough.
Challenge events: your passion fuels our mission
The Rank Foundation also supported us from the very beginning of the pandemic, with three separate emergency, resilience and recovery grants, as well as providing us with two additional team members for a year through their Time to Shine programme.
London Landmarks Half Marathon – 3 April Brighton Marathon – 10 April London Marathon – 2 October Edinburgh Marathon – 29 May
If you’d like to discuss taking on a challenge, please email fundraising@brainstrust.org.uk.
Trusts and foundations
To change the way you receive news and information from brainstrust, please visit www.brainstrust.org. uk/contact, email brainstrust.org.ukpreferences@ or call us on 01983 292 405
20 Logbook: Issue 12 – September 2021 Registered charitable trust – brainstrust is a registered charity in England and Wales (1114634), and Scotland (SC044642).
