WHY WE WALK
Your 50 miles will make a massive difference. We know.
It will take all you’ve got. But it will help the thousands of people in the UK who are living with a brain tumour, to feel less alone, less afraid, and more in control.
brainstrust is a UK brain tumour support charity. We know that when people hear the words ‘you have a brain tumour’ they need support from people who not only understand the fear, but also how best to overcome it.
We provide personal 24/7 support from the point of diagnosis onwards, and build resources that help people with a brain tumour become stronger. We work with hospitals to secure the best care possible for people, and, because we truly understand, we’re able to campaign for the brain tumour community to help solve real issues.
We’ve helped thousands of people on their brain tumour journey. With you on board, we can help even more.
“I rang brainstrust in the middle of the night, about 3am, when I was in a state. 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.”
IN THEIR OWN WORDS
Follow the Seagulls is different from any other type of charity event, it is a challenge like no other which is why we refer to our participants as “Superheroes”.
Over two days, our Superheroes walk 50 miles. It’s certainly challenging but a great adventure and a great way to explore some stunning landscapes with friends, family and colleagues, as well as raise funds to support people living with a brain tumour.
Find out, in their own words, why our Superheroes are taking part.
THE DICKENSON FAMILY
A mother’s intuition told Sam Dickenson that something wasn’t right when her youngest son Seth was occasionally being sick.
She says: ‘Some mornings he would be sick, like he had a stomach bug, it didn’t seem to be worrying, but when it got a bit more frequent I took him to the doctor.’
Several visits to the GP, changing Seth’s diet and medication for reflux didn’t solve the problem, and when the sickness continued Sam took the advice of a GP friend and took four-year-old Seth to Accident and Emergency.
She says: ‘Another time he was sick and then had a migraine. A friend’s sister was a GP, we weren’t getting any answers and in desperation I asked her for advice. She said she would refer a young patient with these symptoms for a head scan, ‘just to rule anything out’.
This was in December 2017, Sam took Seth to the local A&E, she says now: ‘I have to say I over-played it a bit to try and get him seen, I didn’t think for a minute of the possibility that he could have a brain tumour.’
Sam’s husband James was at home with their three other boys, Isaac, Arthur and Rufus, who are all home-educated. The family were just getting back to normal after Rufus, now eight, had been treated for a degenerative hip condition, which had seen him undergoing an operation and numerous hospital appointments and having to learn to walk again over a three-year period.
Seth underwent an MRI scan on December 20 and a tumour was found in his brain. Sam says: ‘I was totally unprepared for the news. They took me into a consulting room and the doctor said, ‘I am really sorry to say he has a brain tumour and we will need to operate in the next 24 hours. He was blue-lighted to King’s College Hospital in London and was operated on that lunchtime, at that time we didn’t know if he would be coming back. The surgeon was the most amazing man, he came and found us and said, ‘I have never lost a child in an operation like this and I don’t intend to start today’.
Seth underwent a 12-hour operation to remove the tumour, a medullblastoma, the most common type of cancerous brain tumour in children. Friends and family rallied around to support Sam and James and their boys, who live in Maidstone. ‘We told Seth he had to have a little operation to remove a nasty lump from his head. Before the operation, as he was being anaesthetised and I was holding him, he reached out and held on to James, as though he knew how serious this was.’
Seth then spent some time in the high dependency unit and intensive care after problems with his airway, the family were overjoyed when he was moved back to the ward on Christmas Day. He spent two-and-a-half weeks in hospital following his operation and although the tumour had been removed there was evidence that it has metastised in his spine.
Then followed treatment at the Royal Marsden, an intensive course of chemotherapy and radiotherapy, which he underwent every day for six weeks. The whole family shaved their heads in show of solidarity for Seth when he lost his hair through the treatment.
Seth underwent a further operation in July last year when he developed hydrocephalus. He finally finished treatment and received a clear scan in October 2018. The whole family were there to witness Seth ring his ‘all clear’ bell on the ward. Sam says: ‘Christmas was definitely very different last year to the previous one, we had no expectations, just as long as everyone was alright.’
Seth will now have three monthly scans and regular hospital checks. Sam says: ‘He has been totally amazing through it all, now you would be hard pushed to know that there had been anything wrong with him. We couldn’t have asked for any better outcome. I don’t think things will ever be the same, once you have looked into the abyss you can’t forget what is there, but it means you make the most of every day. The other children were amazing, my oldest was so helpful, but I would say we’ve all learned a lot and they’ve all grown up a lot.’
During this difficult time, Sam found support from brainstrust, and they decided to take on the challenge to raise awareness and funds for brainstrust.
‘I was put in touch with a member of the team and had a long talk with her. It was good to have somebody to talk to who understood what we were going through but doesn’t have an emotional attachment to our family. I’ve been in contact with her quite a few times now and it’s good to know she is there for us.’
Sam adds: ‘I feel very strongly about raising awareness with GPs and families about the symptoms of brain tumours and the diagnosis and taking part in this event will help us to do that.’
Looking back, Sammy Taylor can now see she first had brain tumour symptoms more than 10 years ago when she was in her teens and experienced a couple of intense dizzy spells, but they were so sporadic she didn’t seek medical help.
It was only when the dizzy spells returned and became more regular when she was 18 that she decided to visit her GP and was referred for an MRI.
Sammy says now that it was ‘sheer luck’ that her brain tumour was found and luck is a word which comes up over and over again in conversation with Sammy who is telling her story to support the work of brainstrust. And she is taking part in the thee trek to raise vital funds and awareness of the impact of brain tumours.
Sammy, 25, grew up in Bromsgrove and works in finance in the City of London. She is currently on six months leave after an operation to remove her brain tumour – a grade 1 pilocytic astrocytoma located in the fourth ventricle of her brain.
‘I had some symptoms when I was younger but didn’t do anything about it. It was only when I was getting dizzy spells on a monthly basis that I went to my GP. They said it was probably nothing to worry about and the MRI was just a precaution. I was very naïve and didn’t think it would be anything serious.’
Sammy was diagnosed with a tumour, which experts said was slow growing and had likely been there since birth. As it wasn’t growing, they recommended a ‘watch and wait’ approach.
Sammy says: I was very lucky to have such a quick diagnosis; I’ve since found that some people struggle for years to get one. They thought the tumour had probably been there since I was born.’
Sammy was regularly monitored following her diagnosis and the brain tumour remained unchanged. She was due for a final annual MRI and set to be discharged. However, the ‘final’ scan revealed the tumour had in fact almost doubled in volume and was in a dangerous position, close to blocking cerebrospinal fluid and she was told it would need surgery. Sammy says: ‘I now look back and realise how lucky I was that I had that scan.’
Sammy discovered brainstrust and attended one of the charity’s meet ups and began to prepare herself for brain surgery. She also moved to London and saw a new consultant, but struggled with new information from him when he recommended that she didn’t undergo the surgery and that they continued to monitor the tumour saying that the risks outweighed the benefits of surgery.
Sammy describes it as a ‘horrendous’ decision to make. She had just two weeks to decide whether to undergo potentially life-changing brain surgery or remain relatively well with the tumour growing in her brain. It was at this point she contacted brainstrust for advice.
She says: It got so much that I didn’t know who else to turn to and I reached out to Jane at brainstrust one night because I just needed someone to offload to. She comforted me and was amazing, and then a few days later I heard from her again. Jane said brainstrust would pay for me to have a consultation with Andrew McAvoy, a world-leading brain surgeon to help me make my decision.’
Sammy says it was this support and kindness that prompted her to raise funds for brainstrust. She took part in 2019's Follow the Seagulls trek raising more than £3,500, and has already committed to 2020's event. She also sells bracelets to raise money for the charity.
Sammy writes a regular blog, charting her brain tumour journey. Her entry following Jane’s contact read like this:
‘Whilst on the tube home the nicest thing happened. It restored my faith in humankind completely. Jane from brainstrust contacted me to say she’d been thinking about my case more and to help me make this decision a little easier they will pay for me to have a consultation with Andrew McAvoy – a world leading neurosurgeon, also voted best brain surgeon in the UK. It’s unbelievably kind, I’m so, so grateful. I feel totally undeserving but promised to fundraise for them in the future. It’s so weird being on the receiving end of someone else’s fundraising but it’s incredible and has made such a difference to my emotional state and anxiety levels. It has changed the way I will view fundraising and charities forever, seeing first-hand what a huge difference it can make…I’m sure being able to sit down and talk to him and go over all the questions I have about risks will be incredible and will really help me make this decision. I feel so speechless.’
Sammy underwent the operation, which was successful in removing the tumour. Unfortunately, the operation resulted in part of the brain being starved of blood supply which may cause some lasting problems which will be clearer following a scan. She also suffers right side facial paralysis and has to undergo daily physiotherapy sessions, suffers with fatigue and can’t walk far unaided.
Sammy adds: ‘I would say to someone 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 and 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 and the devastating impact they have on people and their families and the really vital work that brainstrust does.’
Nicola Manuel is a young woman determined not to let a brain tumour diagnosis stand in the way of her living life to the full.
She discovered she had a brain tumour following a seizure when she was 25 years old – but has vowed not to let the tumour, which she nicknamed ‘Terry’, beat her.
In April 2018 she took on the Isle of Wight Follow the Seagulls trek to raise awareness and help other people battling brain cancer.
At 25, Nicola had her dream job, she was an artist agent working and living London. But her life turned upside down in November 2015 when she suffered a seizure while having coffee with a friend.
‘I had been for a run that morning as I was training for the Brighton Marathon. I met a friend for coffee and the next thing I knew I lost my speech and then blacked out, what I now know was a seizure. It must have been very frightening for the people around me. I know someone put me into the recovery position and when I came around I was taken to hospital.’
Nicola, now 28, spent five days in hospital and endured numerous tests and MRI scans. She was finally diagnosed with grade 3 tumour known as an oligodendrioma and following a successful operation to remove the tumour she had to endure gruelling treatment of PCV chemotherapy and radiotherapy.
‘It all came as such a shock. I didn’t know much about brain tumours, I hadn’t had any headaches or migraines and then to discover I had a brain tumour was so traumatic. I decided I had to stay positive. I named him Terry and I had to deal with him being in my head. I didn’t look back, or feel sorry for myself. I knew I had to face it and go through it.’
Nicola, who now lives in Godalming in Surrey, carried on working throughout her illness, although she did reduce her hours. She said: ‘I loved my job so much, it was really important to me to keep working.’
She now works as a portfolio consultant at the Association of Illustrators – another job she is passionate about.
‘Terry is now completely gone and I am just about a year in remission. I have to go for scans every three months, but I’m not apprehensive as I know Terry has gone and I am grabbing life with both hands.’
Nicola took on the trek with her mum Sue walking alongside her.
She said: ‘I want as many people to know about brain tumours as possible. There is not enough information known, it is not just another cancer, it is incredibly traumatic. I want to raise funds for brainstrust so they can help other people facing a diagnosis of a brain tumour.
‘I beat Terry, but I’m not going to stop there. I’m going to raise awareness of other Terrys out there and help support other people.’
LIZ & ADAM BOLTON
Adam and I met when we were 16 and have been together for 43 years, worked together in our own business for 30 years, and have 4 children (and now 2 grandchildren).
In 2012, whilst being monitored for a completely unconnected condition, Adam’s unspecified low-grade glioma was discovered on an MRI. He had no symptoms, and aside from the business and hectic family life, was a keen sportsman having run some 15 European marathons & competed in his age group representing the UK at the European Triathlon championships, plus Ironman Austria, Nice & UK. The decision taken at that time by our neuro team based at Royal Preston Hospital was to ‘watch and wait’.
We took a long walk and decided that we would keep the diagnosis to ourselves until there was something to be done. We did not even tell our family initially; I suppose we were in shock but also we wanted to do everything to protect our children from the burden of fear, so it was better to tell nobody.
Life carried on with regular (secret) MRIs; work carried on at a ferocious pace. Although no obvious change was noted, which was of course an incredible relief each time we had to face the prospect that it could spring into life at any moment, the stress of this period was almost unbearable, made yet worse by the fact that we felt we could not share it.
After 2 years I suggested that we get a second opinion, as it seemed crazy that we had the knowledge (still no symptoms) but weren’t doing anything with it. Whilst Adam was relieved that the watch and wait approach meant that he could carry on 'as normal’ (he had in fact in this period completed Ironman Austria in under 10 hours), he understood the need for clarification & that the course of action we were following was the right one. His neurosurgeon had suggested that it would be the last resort to operate; he was concerned that not only was Adam (by continuing as long as possible to work on watch and wait) able to provide for his family but that our workforce were dependent on him/us for their livelihood. He stated that Adam should not expect to be able to work after surgery and could very possibly be severely damaged by the process; so it was no surprise that we were scared of that prospect.
In December 2014 we met with Andrew Brodbelt at the Walton Centre - Liverpool. He immediately changed everything with the news that there was in fact marginal growth on the MRI, but reassured us that he was confident he could operate to remove 85-90% without harming Adam. So six months later in July 2015, having sold our business, he had an operation to remove 98% of what was confirmed as a grade 2 oligoastrocytoma. Six weeks of radio followed; we went back to work in October working four days a week as consultants to the buyer of our business. In December 2015 Adam started six cycles of PCV, which he worked throughout. We decided to retire in May 2016 to give us more time with our family.
Since the operation Adam has been well. He slowly took up running/ biking / swimming again and completed the Barcelona marathon in 2017, the Howgills fell running marathon in Yorkshire and last year completed Ironman Sweden in 11 1/2 hours. It was a phenomenal challenge, one that he had set himself in the days following surgery in 2015 and the daily training was gruelling, but he was so determined. Yes he gets tired, but thankfully he does not suffer the intense fatigue that others have to bear. He also stays very busy - currently building a cabin in the woods in our garden.
So why are we taking on this years Follow the Seagulls Trek? Well I feel we have a duty to help where we can and give others who find themselves here HOPE. Sometimes we feel like imposters that we have been lucky enough to carry on living a full life together for the last seven years. We don’t know how long that will carry on, but we cannot let it define everything we do here and now. The biggest gift we have been given is we have been able to let our children live their lives to date without being hijacked by fear, despair and worry for their dad. They didn't get derailed, and they did exactly what they wanted in terms of study, travelling and working abroad. For that we are grateful. If the practical approach that brainstrust offers gives others this sense of calm control then we want to be part of helping fund that support.
How do we feel now we’ve signed up? Well i’m gong to have to get my rough terrain walking boots on (i’m more of a yoga gal these days) and find some hills to tackle!
Hello My name is Andrew Fowle. I am 57 years old and in April 2019, in memory of my son Ashley I Completed the Isle of Wight 50 mile "Follow the Seagulls" Challenge on behalf of brainstrust. During my walk I met so many inspirational people and people who are living with Brain Tumours. Their guts and determination to make the most of life spurs me on to do whatever I can to help support people like them.
On the 14th May 2004 I was at Great Ormond Street Childrens hospital London cuddling my nearly 14 year old son Ashley when he passed away in my arms. I remember that night so vividly and the sound of his last laboured breath will remain with me for the rest of my life. The fact that I was helpless and could do nothing to save my son from this hidden and silent killer will haunt me forever. My brave little boy who had fought so hard for the majority of his short life against a Brain Stem/ spinal cord tumour, finally succumbed and it was time to say goodbye. My heart broke, I had lost my little boy. How I wished I could take his place, after all your children should out live you.
During his short life Ashley achieved so much. Even though he was physically disabled by the tumour, his ever present cheeky smile touched so many people. He was a happy child who never let the tumour and his disability caused by the tumour get him down or get in his way from enjoying life. Ashley had a go get attitude which helped him to pass two 11 plus exams and gain a place at Grammar School.
When Ashley died I took his attitude to life and always try to apply it to my own. My little boy taught me so much about acceptance and humility and I try to live my life with his attitude and try to make the most of my life and always with a smile on my face.
I am doing the 2020 Follow the Seagulls 50 mile challenge and this time my daughter Michelle is joining me. Together we are walking in memory of Ashley, Michelle's brother and my son who gave us and everyone who knew him so much pleasure and zest for life. We want to give something back to help people who find themselves in similar situations to our family and by doing the walk we hope to raise the necessary funds to help achieve that goal.
I want to say good luck to all those people taking part in the Follow the Seagulls Challenge. Your legs will get tired and your feet will hurt and get blistered, but for me that was a small price to pay in comparison to the pain and suffering my son endured throughout his short life. So proud of you son love and miss you always.
Fiona Watt chose to take part in the Follow the Seagulls walk to raise money for brainstrust after her beloved mum was diagnosed with a brain tumour in 2016.
Life was turned upside down for Fiona’s family when her mum Madge was diagnosed with a brain tumour. The family were already reeling as her dad had suffered a heart attack just two weeks before. It was while he was recovering that Madge suffered a seizure at home.
Fiona, 40, who lives in Aberdeen, said: ‘My mum has always been my best friend, always there for me when I needed her, she was so brave throughout this whole ordeal. The hardest part is seeing the person you love disappearing away from you.’
‘This is why it feels important to me to raise funds for brainstrust and help other families just like us.’
The first time the family became aware that something was wrong was when Madge suffered a seizure at home.
Fiona says: ‘It came out of nowhere, she was very fit and healthy and hadn’t had any headaches or other symptoms. Looking back now we can see there had been some changes in her personality, but nothing that would have made us realise she had a brain tumour.
‘Everything happened so quickly. My mum had retired, my dad had a heart attack and he ended up with five stents being fitted. My mum suffered a really bad seizure and a scan showed she had a shadow on her brain, which we later found out was a 6cm tumour.
‘A month later they took the tumour out. That day has to be the most stressful of my life, there are so many risks. She was in the operating theatre for five hours, the wait was unbearable. We then found out then it was a grade 2 tumour which had changed to a grade 4.’
A gruelling regime of three months chemotherapy and radiotherapy followed the operation.
Fiona says: ‘It’s very hard for everybody. It’s like being on a rollercoaster, you have incredible highs one minute and then you come crashing down just as quickly.
‘She dealt with it so well, she was so brave and was managing to go out walking. She just wanted to complete the treatment so she could be there for my daughter Ruby.’
When Madge collapsed in the shower in December 2016 the family feared the worst. And their fears were confirmed when a scan showed the tumour had returned. ‘We were all devastated. They told us it had returned as a very aggressive tumour,’ said Fiona.
Madge began a new regime of chemotherapy which severely affected her, making her very lethargic. She ended up in hospital with a chest infection, but she continued to fight and the family were delighted when a scan revealed that the chemotherapy had slowed the growth of the tumour.
‘She said she wanted to carry on with the chemotherapy so she could be here for my daughter, they were so close to each other and always had such a lovely relationship.’
‘When we found it hadn’t grown any bigger, we sat in the car together and celebrated with an ice cream. Whilst we were happy, experience had taught us to be cautious and we were still terrified.’
At this stage Madge had to take steroids to reduce the swelling around the tumour which was affecting her left side, meaning she was unable to lift her arm. Sadly, Madge began to deteriorate and was admitted to hospital, where it was discovered she had cellulitis which affected her whole body and caused her kidneys to fail.
Fiona adds: ‘The doctors then told us that she wouldn’t be able to walk again, and she hasn’t, she is now confined to her bed.’
Fiona left her job to spend more time with her mum and now drives buses part time in Aberdeen. She said: “I didn’t want to look back and regret that I didn’t spend this valuable time with her.’
“My mum has always been my best friend. She has always been there for me and always had the answers. What is so heartbreaking is that this has robbed my parents, who will have been married for 44 years on February 16, of their retirement together.’
Fiona says: ‘I think that until you go through this, you can never understand what it’s like. It’s so important that we raise funds to help people just like us who are going through this every day across the country. That’s why I’ve chosen to take part in the Follow the Seagulls walk, so I can give something back.’