In January 2023, Robert Seward's life took an unexpected turn when a seizure altered the course of his life. A 38-year-old father of three from Marlow in Buckinghamshire, Robert shares his story of resilience, positivity, and the power of exercise and mindset in the face of his diagnosis.

Robert vividly describes the moment he collapsed at home after bringing his kids back from school. The dizziness and breathlessness escalated, leading to a seizure that left him turning blue. His wife, Shelly, played a critical role in averting a tragedy by calling for an ambulance which lead him to our surgeons at John Radcliff Hospital.

After a series of scans and consultations, Robert learned that he had a brain tumour and brain cancer. The unexpected diagnosis prompted him to seek multiple opinions from experts, ultimately leading him to the care of Vasileios Apostolopoulos at John Radcliffe in Oxford.

Robert's proactive approach to his health became evident as he embraced fitness as a crucial component of his cancer journey. Recognising the positive impact of exercise on recovery, he focused on getting fit before surgery, aiming to mitigate the side effects of chemotherapy and radiotherapy.

March marked a significant milestone as Robert underwent surgery. The surprising success of the operation left him inspired and motivated as the surgeons were able to remove close to 80% of the tumour.

Robert emphasises the under-publicised role of exercise in mitigating the side effects of cancer treatments. He shares his realisation that fitness and a positive mindset contribute not only to physical well-being but also mental strength throughout the challenging journey.

In a remarkable show of determination, Robert decided to ride to Paris to raise funds for Brainstorm UK. The journey not only raised awareness but also highlighted the importance of exercise in cancer patients' lives.

Robert's story delivers a powerful message of hope and encouragement. He urges others facing similar challenges to incorporate fitness and a healthy lifestyle into their cancer journey, emphasising the positive impact on both physical and mental aspects.

Reflecting on his experience, he encourages everyone to evaluate their lives, prioritise relationships, and embrace opportunities. His newfound perspective emphasises the importance of saying "yes" more than "no" and cherishing life's moments.

Rebecca Powell has been incredibly brave to share her story with us…

8yr old Rebecca was diagnosed with a life changing brain tumour at the age of 27years old. Rebecca had been living a relatively normal life enjoying time with her friends and fiancé working in aviation and marketing before she suffered devastating and life changing news.

Rebecca talks us through her diagnosis ‘Just over a year ago on the 20th May everything was normal, I went to sleep feeling absolutely fine. My fiancé Ben found me on the floor having a fit which in turn was a full blown seizure which I have no recognition of’.

Rebecca was later on sent in to have an MRI scan which revealed that she did in fact have a brain tumour which was revealed as a result of being emitted to emergency A&E. She was diagnosed with Oligodendroglioma at Grade 2. Oligodendrogliomas are primary brain tumours that are a type of glioma. They’re the third most-common glioma, accounting for 2-5% of all primary brain tumours and 5-18% of gliomas.

The majority of oligodendrogliomas occur in the frontal lobe, and the second most common site affected is the temporal lobe.

They’re more common in adults, particularly in people aged 40-60, and are slightly more common in men than in women.

Oligodendrogliomas are divided into two types:

• grade two oligodendrogliomas that grow very slowly
  grade three oligodengliomas, also known as anaplastic oligodendroglioma. These grow faster and are more likely to spread. They are more common in older people aged 60-80.

HERE IS DAVID’S STORY, AS TOLD BY HIS GOOD FRIEND CLARE ELLA…

On Sunday September 20th 2020 I completed the Ladybower 35 mile challenge event – to raise money for Brainstorm, and in memory of a wonderful friend of 25 years who died from a brain tumour on May 17th.

David (but known to me as Dai) Popplewell and I met in 1995 when we were both posted to work at Fuzhou Teacher Training College in Jiangxi Province PRC, for Voluntary Services Overseas. The two years we spent teaching there, and also travelling together during the holidays, throughout China and into Tibet & Nepal, were truly life-changing and he became a wonderful friend. After our return to the UK, I decided to travel more, before looking for a permanent job, whilst Dave chose to train as a teacher. We continued to write to each other regularly whilst I was away, and when I got back we met up for cycle rides, walks and Chinese themed dinner parties! I was delighted when he ‘settled down’, began teaching at Wellingborough School and moved in with Ali. We remained a valuable sounding board for each other and, although it was sometimes months between contact, never lost that special friendship. He was very involved with National Trust volunteering and regularly led volunteer residential projects.

We shared a love of New Zealand – both having travelled there in the past - and I was very jealous when he told me that he and Ali were going to take some time off and travel together, and include NZ in their itinerary. I followed their travel blog with great interest and enjoyed catching up after their return. Then on Monday 28th May 2018 I got an unusually early text from him, just after 6 am, asking if I was around for a chat. He explained some concerning recent symptoms and I agreed he should go to his GP – things then changed very quickly.

Ali takes up the story:-

In hindsight, we were so fortunate to enjoy a three month sabbatical in early 2018, visiting Asia, Australia and New Zealand, whilst Dave was 100% fit and healthy.

Sadly, just after we returned in May, he developed a strange drop-foot, which after investigation, showed a small but serious grade 4 glioblastoma brain tumour, affecting his peripheral nerve.

Mr Plaha, (a trustee of the Brainstorm charity), was Dave’s neurosurgeon at the JR. He talked us so calmly through the surgical procedure, involving an awake craniotomy, which meant that Dave’s level of consciousness was managed minutely, enabling him to respond and, when asked, move his foot during the operation, to ensure the most successful outcome.

Mr Plaha removed 100% of that tumour and, after targeted radiotherapy and chemotherapy, Dave enjoyed 20 months of a fairly active lifestyle, we married (after 19 years together), enjoyed a honeymoon cruising down the Danube, and had as many trips in the UK that we could squeeze in.

Sadly, although the original tumour site remained clear, Dave developed a second tumour in early 2020, which affected his cognitive skills. He suffered a major bleed on his brain (the tumour imploding) and had further urgent brain surgery to remove as much of the bleed and tumour as possible. He recovered slowly from the surgery and managed to come home for five weeks, but never fully regained control of his speech. The remaining tumour progressed and finally, after falling into a coma, he passed away two years after being diagnosed.

I managed to see Dave quite a few times after his diagnosis, and saw the effects of his treatment, but he was always enthusiastic about his physiotherapy, new dietary and nutritional advice, helpful pieces of equipment, his recumbent trike, complementary therapies and of course, marrying Ali. After seeming so much better, it was devastating when the second tumour caused the major bleed in early 2020. I managed to see him in JR just days before the March lockdown, and although he had a tracheostomy tube in which prevented him from talking to me, he was taking in everything I said, enjoyed the foot rub that I gave him and rolled his eyes in exasperation at Ali & I attempting to get Sky Sports paid for & installed on his hospital TV. It was to be the last time I saw him.

Ali continues:-

Mr Plaha, with his team, provided us with constant support throughout this time. His professional expertise and compassion is such a good balance and we had so much confidence in his knowledge and research capabilities. Brainstorm was the obvious charity of choice for donations from all our friends and families after his death - we wanted to be able to help any future research into glioblastomas, which affect so many people, with no known cause.

As COVID restrictions meant it was not possible to have a funeral that I could attend, I wanted to do something to honour Dai’s life and our 25 years of friendship, and raise money for the charity that Ali, his father Mike and sisters Jane and Sue had chosen to support. I wanted to do something that would challenge me, but was attainable, and when I saw the Ladybower event was still on, with 8 weeks’ notice I entered and started training. When I set up the fundraising page, it became obvious that he was a much loved and respected man in both his personal and professional life.

He is greatly missed at Wellingborough School, as was evidenced by the number of donations and memories shared by his colleagues. Current and previous heads of Lower Prep there – Bec and Jocelyn - add :-

For all of the 17 years that David worked in the Pre-Prep at Wellingborough School he was known as Mr P. Throughout his time here he worked in Year 3 and I was fortunate enough to be his co-worker in Year 3 class. David was a most conscientious teacher and worked tirelessly to give the children a stimulating and active learning environment. He was also a very wise and thoughtful colleague, Jocelyn and I fondly remember him as coping very well as one of two men amongst about thirty women in the staffroom! We miss him every day.

Dave will leave a lasting impression on the lives of so many people – including his family and friends, his colleagues, the students he taught in China and England, those who played sport with him and those who benefitted from his voluntary work. His was a life that was cut short, far too early, with no known reason why his brain tumour developed. I hope that by helping fund research into brain tumours via Brainstorm, we will be able to make a difference to the survival rates for more people like Dave, who make such a positive contribution to society.

HERE IS SARAH’S STORY, AS TOLD BY HER HUSBAND ROWEN…

When Sarah’s dad, John, was diagnosed with a glioblastoma at Easter in 2016, I never imagined that Sarah would be diagnosed with the same tumour just a month later. Both a client and a friend of mine had died from glioblastomas years previously, so I’d had my fair share of experience with the disease already.

John died not long after, in August 2016, and we were all distraught. Sarah had been a dutiful daughter, visiting him in the hospital every day and caring for him. She was a compassionate and caring woman and her strength always astonished me. His death came as a blow to our sons too. Jacob and Freddie, who were 20 and 18 at the time, were close to their grandad and I think seeing their mum’s heartache made the situation all the much harder.

We pushed on and life went back to normal. Sarah was 48, a teacher at a special needs school near our home in High Wycombe, and when she wasn’t at work, she was doing everything for me and the boys. Jacob, our eldest, is autistic and she was fiercely protective over him. In her spare time, she loved going to the theatre and watching the boys play rugby and cricket.

Not long afterwards, however, Sarah started losing sensation in her right hand. She went to the GP who thought she had carpal tunnel syndrome but she was referred for a CT scan too, just to be sure. I didn’t think anything of it so when on Easter Thursday, one year on from John’s diagnosis, and just hours after her scan, they said Sarah had a brain tumour, I was in disbelief.

I just couldn’t believe this was happening. We’d witnessed what the disease had done to John and now we had to relive that nightmare all over again. I was determined to beat it for Sarah, we would try the ketogenic diet – anything to stop her going the same way her dad did.

Sarah was very stoic considering all she knew about brain tumours. She didn’t cry or get upset and together we tried our hardest to create a positive mental environment at home. Jacob’s autism meant the diagnosis hit him extremely hard whereas Freddie didn’t show it, even though I knew deep down he was hurting. When Sarah was in hospital, it was Freddie who sat by her bedside every day.

A biopsy was booked in for Sarah but it was delayed by two weeks as her thyroid levels were too high. I’m grateful for the delay now as it gave us two more precious weeks with her. When the biopsy did go ahead, I was devastated to learn that Sarah had a glioblastoma. She didn’t regain consciousness after this, so as far as I know, Sarah had no idea that the same tumour that took her dad was killing her too.

I took time off from my job as a banker, as Sarah stayed unconscious for another month. Deep down, I knew she wouldn’t recover but when you’re in that situation, you can’t let those thoughts take over, you have to stay positive.

Sarah had shown no signs of improvement since her biopsy so they attempted to drain the fluid from her brain. If it was a success, the best-case scenario was that she would wake up and be paralysed down the left-hand side, but if she didn’t respond then there was nothing more that could be done for her.

Sadly, the latter was the case. Sarah hadn’t improved, so the tubes were removed from her brain, starting off a process which we had all been dreading. A few days later, on 1st June, my wife took her last breath with Freddie and his girlfriend by her side, and Sarah’s close friend, Sheeba.

We held her funeral in Ickenham where Sarah grew up and where John had lived. Over 300 people came – a testament to how loved she was. Jacob wrote his mum’s eulogy ahead of the funeral and initially Freddie and I tried to dissuade him from reading it. However, when we actually read what he’d written, we knew it had to come from him.

He wrote: ‘My mum was an amazing mum, she was always there for me and I love her to pieces. From where I started 20 years ago to now, from day one, to as many as I can count, every time I was with her it meant so much to me. I learnt a lot, I progressed a lot and I enjoyed a lot of this thanks to her. Given there were so many great memories of mum, it’s really hard to pick a favourite. We cherish all of them, and they will forever be in our hearts. She always said if the family were happy, I’m happy and that’s the kind of person she was. I love you forever Mummy.’

Life hasn’t been the same since but I’ve adjusted and I concentrate on keeping things together for the boys. Sarah was cruelly taken away from us but I was lucky to have had 31 happy years with her – she was my childhood sweetheart and not many people are fortunate enough to experience that.

The hardest part has been seeing the boys upset. Unlike me, they had such a relatively short time with her, and seeing their grief is awful. Both Jacob and Freddie are adjusting to life without their mother; Freddie is at the University of Liverpool and Jacob is doing voluntary work at college. Jacob is still struggling but he’s learnt breathing techniques and coping mechanisms to help himself. I don’t know if he’ll ever process what happened.

Sarah was the youngest of two and as her mum had died from a heart attack in 2006, she was spared the pain of seeing her husband and daughter fight this cruel disease. As for me, I’m back at work full time and playing both mum and dad. The cards have been dealt and I have no choice but to shuffle them and keep going.

I hope by sharing Sarah’s and John’s story that more people will realise how desperately a cure is needed for this disease. Brain tumours claim too many lives and devastate too many families, and the only way to defeat it is if we all work together.

Rowen Pestana
October 2018

HERE IS JAN’S STORY, AS TOLD BY HER HUSBAND PETER…

It started at teatime on a Friday evening towards the end of September 2017, I had played golf and was chatting to my wife Jan.

We had five minutes of quiet and when she went to speak again her words would not come out properly. Her eyes said what my mind was thinking. This is a stroke!

I rushed her to the local hospital, as I knew this would be quicker than calling an ambulance. Half shouting ‘She’s had a stroke’, we got through the A&E admin in moments and after two hours of tests the medics agreed it was a stroke.

Two weeks and many tests later we would have been happy to settle for a stroke, as instead of this, Jan was diagnosed with a grade 4 brain tumour. Jan was calm.

Towards the end of October we went to the local centre of excellence for brain tumour surgery at the John Radcliffe Hospital in Oxford. My daughter had flown back from Australia to join us when meeting with the surgeon to ensure we understood what was said.

The surgeon, who soon became our rock, due to him always being at the end of the phone when needed, recommended ‘awake surgery’. We agreed and the operation booked.

Jan was admitted on the 9th of November. The surgeons explained they keep you awake during the 6 hour operation so that they can be as thorough as possible while removing the tumour as they know to stop when your conversation alters or slurs.

Vas our wonderful surgeon managed to remove most of the villain. The last little bit, however, proved elusive as Jan stopped speaking as they tried to get the last bit and so had to stop.

Jan was out in a few days and despite a month of daily radiotherapy treatment followed by two months of chemo she held up well over the following 8 months, albeit taking life a little slower.

My four kids, two of whom live in Australia, one in the States and one in London made frequent visits back home for big family get togethers, as even after the operation the overall prognosis was that we had 12 to14 months left with Jan.

Sadly the prediction was right. The tumour grew back and by the time a second operation was planned she was too weak to cope with the ordeal.

In August, 10 months or so after the original diagnosis, she got really weak. The third round of chemo hit hard and she became progressively more bed bound, we managed to keep her at home thanks to awesome support from the Sue Ryder ‘hospice at home’ team and a live in carer. The NHS was awesome and frankly Vas the surgeon was a Saint. Always contactable, supportive and upbeat.

On a few occasions Jan would have a meltdown and I was unable to wake her but Vas was at the end of the phone giving his expert advice and we lived to fight another day.

His famous line to me when I emailed him was do ‘use the Mobile to reach me whenever you want, although I do turn it off when in surgery.’ Thank heavens he does.

Certainly the first surgery extended Jan’s time with us. Without this, it was believed that Jan would have died in three months from the original diagnosis.

Jan passed away Late November 2018 and in hindsight, when a second operation was originally suggested maybe we should have grabbed it, maybe he could have removed it all this second time, we’ll never know, but the consensus from the medical team was wait a while and let the chemo have its effect.

Undoubtedly surprisingly little is known about brain tumours and what causes them. There were no obvious reasons why my wife of over 40 years, a mum to 4 and grandma to 5, suddenly got hit on that September evening.

Only by helping the great surgeons refine their techniques, get the latest equipment and run new trials and research, funded by the Brain tumour charity, can we hope to reduce the great sadness caused when this horrible disease strikes.

Peter Erskine
February 2020