Brain Tumour Awareness Month: Suffolk families share their stories as charity calls for further funding and research
Brain tumours kill more children, and adults under 40 than any other cancer. But only a tiny proportion of the national spend on cancer research – around one per cent – has gone to fighting this devastating disease.
The charity Brain Tumour Research is dedicated to changing that. It works to find a cure by campaigning for more investment while fund-raising to create a network of research centres.
All through March it is making a huge effort to spread the message more widely with Brain Tumour Awareness Month.
The charity is calling for £35 million a year to be spent on brain tumour research bringing it in line with other cancers such as breast and leukaemia.
It would enable the ground-breaking research needed to accelerate the translation from laboratory discoveries into clinical trials and fast-track new therapies.
Almost 40 different types of tumour are listed on Brain Tumour Research’s website. Even those that are not malignant can be life-threatening.
Local survivors, and those grieving the loss of lost loved-ones, have spoken out in support of the campaign.
Barbara Hollands, from Thetford, who struggles to breathe due to lung disease, took on a 10,000 steps a day challenge for Brain Tumour Research after her daughter was diagnosed with aggressive brain cancer.
Daughter Kylie Weatherby was 36 weeks pregnant with twins when, in May 2021, she woke feeling unwell. She rushed to the bathroom where she was violently sick and collapsed on the floor having a seizure.
The then 32-year-old thought it might be pre-eclampsia, but a scan revealed the shocking truth that she had a brain tumour.
Doctors in the US, where Kylie had moved after marrying an American serviceman, delivered twins Luca and Malena by caesarean section.
Ten days later she was rushed into surgery because her brain had become so swollen it was squashing the tumour and causing it to bleed.
The swelling meant it was not immediately possible to rebuild her skull so Kylie was sent home wearing a helmet to protect her exposed brain until the operation could be completed.
The day before that final surgery she was told her tumour was an aggressive, fast-growing grade 4 glioblastoma multiforme.
But a few months later, after chemotherapy and radiotherapy, cancer cells were no longer detectable and she showed no evidence of disease.
Now she is being closely monitored with three-monthly scans and plans to move back to the UK to be closer to family.
Meanwhile, mum Barbara, a nursing assistant at West Suffolk Hospital, was preparing for the Brain Tumour Research charity’s 10,000 Steps a Day in February Challenge.
The 59-year-old who has chronic obstructive pulmonary disease (COPD), said: “They were honest and straight with Kylie and said they didn’t know how long she had, but they did get everything out that they could see.
“She’s had no seizures since her operation and has got such positivity. I don’t know where she gets her strength from because I’m a wreck but I’m looking forward to her coming home permanently.
“This is the first fund-raiser I’ve ever taken part in. The most important thing is to raise money for research because it’s only with continuous research that things will improve.”
Corin Snell, from Ixworth, is registered blind and lives with the constant fear of losing her sight completely because of a low-grade meningioma diagnosed in 2014.
She suffered persistent headaches and painful, weeping eyes for months, but the problem was put down to migraine.
It was only when an optician detected pressure on her optic nerve that she was advised to go to West Suffolk Hospital, where a scan revealed a tumour the size of a tennis ball.
By the time she saw a consultant at Cambridge's Addenbrooke’s Hospital Corin, who worked in a care home, had gone completely blind in her left eye. The sight never returned and she was also left with only 50 per cent vision in her right eye.
The tumour was removed in an eight hour operation. But four years later she fell out of bed and husband Dan, who was her fiancé at the time, struggled to wake her. The following day she had a seizure in the car.
“Dan pulled over and luckily a woman was outside gardening, whose husband suffered from epilepsy so she knew what to do. The next thing I knew I was waking up in hospital,” she said.
“I was told the tumour was back again and went in for my second craniotomy. All was well until February last year when a routine scan showed more growth.
“My doctors said as it was only minimal, they were confident it was safe to leave further treatment until after my wedding. In September, having rearranged our date four times because of Covid restrictions, Dan and I finally got married.”
Corin had six weeks of radiotherapy last autumn, and her next scan will show whether it has worked. “My biggest fear is losing the little eyesight I do have... that’s what I think about when I lie in bed without any distractions,” she said.
“I know there are people much worse off than me and I’ve got my husband, who I wouldn’t change for the world, but my life compared to how it was, or how I thought it would be 10 years ago is unrecognisable.
“It bugs me looking back because meningiomas are slow-growing and I had a squint in my left eye when I was younger and I wonder if that was the first signs of it.
“I would advise people to go to the opticians regularly... it’s not just about finding out if you need glasses, there’s so many other things they can pick up on.”
Ffion Roe’s mum, Jill Ramwell, died just seven months after receiving the devastating diagnosis of a Grade 4 glioblastoma, an aggressive and incurable form of brain cancer.
“Mum had been fit and active,” says Ffion, who lives in Ashley, near Newmarket. “She was only 60 when she died.”
Jill’s tumour went undiagnosed when she first began feeling ill. “She went to the doctors quite a few times and they said it was stress,” said Ffion.
“She had headaches and pain behind her eye. She went to the opticians and they didn’t pick it up.
“She was suffering forgetfulness and wasn’t feeling herself. And she had a bit of an episode when she collapsed. An ambulance was called but they didn’t take her to hospital."
Welsh-speaker Jill worked as a receptionist at Powys county council. “She had been going through quite a difficult time at work so I can understand why the doctors thought it was stress.
“Mum was diagnosed two weeks before I was due with my second daughter so that was a very difficult time,” said Ffion, who has two children, Paige, five, and Isla, two, with husband Matt.
“After the diagnosis she got poorly quite quickly. Once it was diagnosed they realised it was quite a big tumour. They did operate quite quickly.
“They took some of it away but obviously have to be very careful where they go in the brain. She was told two years would be the maximum time she had left, but she was never right, really, after the surgery.”
Ffion, a secretary at Cheveley’s Banstead Manor Stud, and her brother, who is a stud manager in Newmarket, both moved to Suffolk at an early age to train in the racing industry.
After Jill’s death Ffion took on the Yorkshire Three Peaks Challenge in her mum’s memory and raised over £1,000 for Brain Tumour Research.
She is a staunch supporter of the charity. “Definitely brain tumour research needs a lot more money putting towards it,” she said.
Football-mad Rhean Williamson was seven years old and a pupil at Haverhill’s Burton End Primary School when he developed eye problems that were the first sign of a rare and dangerous type of brain tumour.
His grandmother Sara Hammond, from Linton, said: “He was beginning to squint a little bit and his left eye was looking different.
“Then he was saying he couldn’t see as much. He was still playing football but was struggling to see the ball. He was also having trouble walking in a straight line.”
A visit to an optician led to referrals to a doctor, then an eye clinic at Addenbrooke’s Hospital from where he was sent for an MRI scan.
It showed a tumour within a cyst on his cerebellum, part of the brain that controls many functions like balance.
Rhean, who now lives in Cambridgeshire with mum Nicola, stepdad Shaun and sisters Millie, five and Nylah, two, needed two operations to take away the tumour and cyst sac.
The family was then told it was an extremely unusual type of high grade neuro-epithelial tumour.
Nylah was born six weeks early and was only six weeks old when Rhean was diagnosed.
His surgery was followed by months of gruelling radiotherapy and chemotherapy. “Never did it occur to me it might be a tumour,” said Sara.
“When he had chemo he had three weeks in hospital, then a week at home. Nicola and Shaun shared being in hospital with him, and that was very hard.
“My partner Steve was amazing. I was supporting my daughter and he would have Millie and Nylah while we were at appointments.”
Manchester United fan Rhean is now 10. “Touch wood, his most recent scan was clear,” said Sara, who is finance secretary at Burrough Green Primary School, near Newmarket.
“We get through six months at a time because we don’t know what the future holds.
“He’s always been an active little boy and now when he comes here he goes up the skate ramp in the village on his scooter.
“It just amazes us how he has got through this. He gives you the strength to be strong yourself. He is one courageous boy.
“His sight is okay now, but it has affected his memory. He also missed a lot of school.
“Although his hair is growing back you can still see the scar. He’s going to do a presentation to his class at his new school about what happened to him."
Little Harry Crick won the hearts of so many – including his namesake England football captain Harry Kane who sent a message of support – when his battle against a deadly brain tumour became public.
Tragically, Harry died last October less than a year after his diagnosis. His dad, Matt, told how the world crashed down for him and Harry’s mum, Nelly, when they were told their one-year-old son had a brain tumour.
“We felt so helpless as we were thrown into a world we knew little about. We had to hand our precious baby into the care of strangers... all we could do was hope and pray,” he said.
Harry had a 10-hour operation to remove the tennis ball-sized tumour and recovered well. But devastating news followed when biopsy results revealed an extremely rare and very aggressive type of embryonal tumour.
He received urgent, high dose chemotherapy and his parents, who have three older boys, watched in horror as he suffered brutal side effects.
Last March the couple held a Facebook fund-raiser for Brain Tumour Research and made £2,275, almost enough to pay for a day’s research at one of the charity’s centres of excellence.
“Through our own awful experience, we quickly learned just how devastating this disease is. There just isn’t enough funding into research to help find a cure for brain tumours,” said Matt.
In May last year the tumour grew back and was removed in a further eight-hour operation. Harry had targeted proton beam therapy, but in September it returned and he died at home in Elmswell with his parents by his side.
Martin Wilkins is living with a malignant brain tumour that was only discovered when he had a scan for an unrelated hearing problem.
The maintenance manager from Glemsford had radiotherapy, followed by a year of gruelling chemotherapy, after the grade 3 anaplastic astrocytoma was diagnosed in March 2020.
“I work in Sudbury and the company do regular hearing checks,” he said. “They kept picking up that I had a slight hearing loss on my left side, but nothing really to worry about.
“After a while, my doctor referred me to hospital to see what was happening. The audiologist said there was no real reason but asked if I’d ever had an MRI scan?
“I went back to the hospital for a consultation and, totally unexpectedly, they said they could see something else.” More appointments followed until a scan at Addenbrooke’s Hospital revealed a tumour on the brain stem.
“They said ‘we can’t tell what it is without a biopsy, but that in itself is quite dangerous because of where it is’.
“I felt I didn’t have a choice so I went in for the operation on March 15, 2020, and they said it was cancerous. I had 33 sessions of radiotherapy from April, every day for six and a half weeks.
“My chemo started a month later. I had 12 four-week cycles, which took me up to June 2021. The company I work for, JCS Hi-Torque, were really good to me. The chemo made me feel really rough. All I wanted to do was sleep. One week out of four, I’d be not too bad.
“But the worse thing I can remember was when I was having radiotherapy. It was getting there at 8am and seeing children being put out for the radiotherapy to keep them still. That broke my heart.”
Martin, 54, has been told the average life expectancy of someone with his kind of tumour is four years.
“Although I have got it, and it’s not ideal, some people have survived 20 years and are still going,” he says.
“The treatment has shrunk the tumour. It was 19mm in size and now it is 17mm, but it has also reduced the density and a lot of the tendrils have gone.
“I have scans every three months and, although it is not curable, it’s manageable. It’s the people all around you it impacts on. How do you tell people?”
Gill Edwards was diagnosed with a brain tumour in 2013 after collapsing on the way to pick up her nine-year-old daughter from the school bus stop.
But from that terrifying experience has come something good… a complete change of direction to a better, less stressful life in the country for Gill and her family.
And while they would never play down the trauma of what they went through, she is keen to let people know that, in their case, the outcome was positive.
They now live in Brome, where they run their own business that grew out of her hobby of candle-making.
“My parents and my husband, Geoff, would probably say in the weeks and months leading up to my collapse that my memory wasn’t what it was and I had more headaches,” she said. “I put it down to tiredness and working full-time.
“I was walking our dog, Ruby, to the bus stop to get our daughter, Grace, from the school bus. I felt I couldn’t walk in a straight line. I felt something pulling me to the edge of the lane.
It was Ruby, a golden retriever cross, who alerted people to her plight. “Ruby sat by me howling until someone in a nearby cottage heard her. She’s rather special,” says Gill.
“Even now, she doesn’t particularly like me out of sight and, when I came home from hospital, she kept nudging me when I was asleep on the sofa.
“My husband was frantically calling me because no-one had collected our daughter from the bus. The ambulance came and I remember saying to them ‘it’s low blood pressure, I’m wasting everyone’s time’.”
Gill was diagnosed with a benign meningioma – a tumour that starts in the membrane surrounding the brain.
She had an operation, which removed most of the tumour, but the surgeon was unable to take it all because of the risk of brain damage. She now has six-monthly checks.
“When it happened, it was terrifying,” she says. “It was really hard for everyone around me.
“Afterwards, we moved to the country, got chickens and ducks and started our own business. It forced me to examine everything in my life.
“Moving from Brentwood to north Suffolk is a real tonic for the soul, body and mind. It brought us to a place in our lives I don’t think we would be otherwise.
“So many positives have come from a very frightening time.”
The memories still stir strong emotions for Geoff, whose voice breaks as he describes how the surgeon told him Gill’s condition was touch and go and, as she is a Catholic, to call a priest.
The couple now run The Ruby Grace Candle Company – named after their daughter and their dog.
“Every year, we give a percentage of our profit to Brain Tumour Research on their fundraising Wear a Hat day,” said Gill.
Grace, who has just turned 18, abseiled down the Orbit – the UK’s tallest sculpture – at the London Olympic Park to raise money.
Brain Tumour Awareness Month peaks with the annual Wear a Hat Day fund-raiser on March 25.
This year, the pin badges celebrate the Queen’s Platinum Jubilee. Celebrity supporters fronting the campaign include TV personalities Danny Clarke and Sarah Beeny, actor Dame Sheila Hancock, and brain tumour survivor Caprice Bourret.
Danny’s sister and Sarah’s mum died from brain tumours. Sheila’s grandson was treated for the disease aged four, and model, actress and businesswoman Caprice had surgery for a tumour six years ago.
For more information go to www.braintumourresearch.org