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.
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 will be 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.’
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.’
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, the charity which supports people and their families living with brain tumours. And Sam and James have decided to take on the brainstrust Follow the Seagulls walk to raise awareness and funds for the organisation.
‘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.’
College lecturer David Barlow (pictured on the left of the image) decided to join the fundraising effort for brainstrust after his nephew Tom was diagnosed with a brain tumour two years ago at the age of just 31.
David said: ‘I’ve seen first-hand the impact a brain tumour has on a person. We feel that by taking part in an event like this we can help people in the same position as Tom and that’s what prompted me to sign up and raise the money.’
Tom, who worked in recruitment, was diagnosed following a number of seizures and has undergone 18 months of chemotherapy, a treatment which causes many harsh side-effects.
David, who lives in the Wibsey, Yorkshire, said: ‘A brain tumour is a devastating diagnosis. Tom went from being a very fit 31-year-old to being unable to work and being very tired. He also struggled with his memory which is an effect of the treatment. It completely changed his life.’
And David knows all about the challenge, as he took part last year.
David said: ‘It’s a fantastic event to be part of – I’d say it’s a good challenge, but if you are fit and have a chance to do some practice walks in advance it is definitely something which is achievable. The camaraderie between the group of walkers is great and really keeps you going.’
Isle of Wight postman Andrew Fowle will be using his round for training as he takes on Follow the Seagulls in memory of his son Ashley who died from a brain tumour just two months before his 14th birthday.
Ashley was diagnosed with a brainstem/spinal cord tumour in 1994, when he was just four years old. He had been treated for hydrocephalus, a build-up of fluid on the brain, when he was six weeks old, but when he was nearing four, he began developing scoliosis (curvature of the spine) and doctors became concerned.He underwent an MRI scan which revealed a brain stem and spinal cord tumour.
Andrew, who was a policeman based in Maidstone and married to his first wife Vivien, at the time, says: ‘We were basically told that nothing could be done, surgery wasn’t possible because of the position of the tumour and he was given just six to 12 months to live.’
Ashley was treated with radiotherapy, which Andrew now believes made his condition worse. By chance the family heard about a paediatric neurosurgeon based in New York, Dr Fred Epstein, who had successfully operated on these types of tumours in children. Going against the advice of the UK doctors, they sent Ashley’s scans to Dr Epstein.
Andrew says: ‘Dr Epstein phoned me from the States and told me he could operate. We were elated, but also angry because Ashley had gone through the radiotherapy which would make surgery more difficult. We knew that without the operation Ashley would have only six to 12 months, and we were already six months down the line, we did a lot of soul searching and made the decision to go ahead with the surgery.’
But the family had to raise £35,000 for the operation. They turned to the Police Benevolent Fund, who said they would support the family and lend them the money for the operation – they also launched a fundraising drive. So, the ‘Ashley to America’ appeal was launched, national TV appearances followed and within days, thanks to the generosity of the public, the fund had reached £100,000. The extra funds would be put into a trust for Ashley’s care. Andrew even received a personal call from Richard Branson, offering to fly the family to the States on Virgin Airways.
On arrival at the hospital, Ashley underwent surgery on his brain and Dr Epstein confirmed he had managed to remove 95 per cent of the tumour. Once the effects of the radiotherapy had worn off and he had recovered from the operation, Ashley did recover slightly and was able to feed himself and walk with a frame.
Andrew says: ‘Physically he wasn’t good, but he had hell of a sense of humour and always had a smile on his face, we had a walking frame for him and he loved playing football.’ He attended a local primary school and went on to pass the 11 plus, gaining entry to grammar school with ambitions to be a lawyer. And although he couldn’t play football he became the referee, whizzing around the AstroTurf in his wheelchair. But bad news was just around the corner when one of Ashley’s regular scans revealed that the tumour had begun to grow again.
Andrew says: ‘We got to almost 10 years after the surgery when they said there had been a change and it looked like the tumour had begun to grow again. We contacted Fred Epstein who said he would not be able to operate again.’ It was decided to treat Ashley with chemotherapy, but sadly Ashley died the morning after receiving the first treatment, just two months before his 14th birthday.
Andrew says: ‘Taking Ashley for the operation in America was one of the hardest decisions we have ever had to make, but it gave Ashley another 10 years of life. Despite suffering physical disability and numerous hospital visits, Ashley achieved so much in his short life. He had a positive influence on everyone he met. He never complained about his lot, and always had a smile on his face an example to us all.’
Andrew, who retired from the police force in 2013 and is now remarried to Karen, a teacher on the Isle of Wight, said he hoped to help other people by taking part in the Follow the Seagulls trek.
‘I have always wanted to do something to give back and to support other people who might be in the same position as we were, which is why I have chosen to take part in Follow the Seagulls. It’s also important to me to walk in the memory of my son Ashley who was an inspiration to a lot of people.’