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In Hope

Just 1% of the national research spend has been allocated to this devastating disease

The diagnosis of a brain tumour is devastating, however there is hope. We have been fortunate to meet some very brave people who have survived to tell the tale and who want to share their story to give hope to others.

Recently published stories

Bernice McCabe

Former headteacher, Bernice McCabe OBE, has instilled one essential piece of advice in her pupils: you have to rewrite the story when life takes an unexpected turn. Little did she know, Bernice would need to apply this lesson in her own life when, at the age of 65, she was diagnosed with a glioblastoma multiforme (GBM). One craniotomy, one surprise proposal, and several courses of treatment later, and Bernice is as resilient and optimistic as can be.

 “A CAT scan confirmed I wasn’t suffering from a stroke but something else was happening. I was transferred urgently to Addenbrooke’s Hospital with Rod driving separately behind the ambulance, worrying that I wouldn’t be alive when he met me there.”

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Carly Beasley

Carly Beasley had landed her dream job and had recently married her childhood sweetheart, Kris, when she had her first seizure. Following a series of tests and scans, she was diagnosed with a low-grade brain tumour in October 2017 and had surgery to remove the tumour three months later. Having made a remarkably quick recovery from the operation, Carly is now back at work and determined to use her experience to help others.

“With anything that people go through, not just brain tumours, you go through a mix of emotions. I have had anxiety about my illness and have gone through the inevitable ups-and-downs, but there are many positives I can take from my situation. At least my tumour is low-grade. At least I made a full recovery.”

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Franco Pietrantonio

In August 2016, Wenna and Franco Pietrantonio were getting over a turbulent year. After the premature birth of their twin girls, who were in and out of hospital for their first year with various health complications, they faced another battle. In October, Franco was diagnosed with a large, presumed low-grade glioma after suffering a seizure in August. The father-of-three endured brain surgery to remove his tumour just a few days before Christmas which, thankfully, has since shown no re-growth. Now he requires yearly MRI scans and he and Wenna live with a new sense of vulnerability, knowing full well that life can turn upside down in an instant.

“Over the phone, the consultant said that Franco had a large tumour, presumed to be a low-grade glioma. To us, this was of little significance; we didn’t understand the diagnosis but instantly thought it would kill him. The diagnosis was a complete bombshell and it was awful. We tried to be strong and put on a brave face but personally, I felt very alone. Suddenly, I was on my own, looking after my family, and it was up to me to keep it together.”

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All stories

Adam Bradford

A seizure struck Adam down out of the blue and led to his brain tumour diagnosis. He underwent surgery, radiotherapy and chemotherapy and was well enough to take part in a gruelling cycle challenge in the heat of the Arizona desert. He completed the event with his father who, 15 years earlier, had lost his mother to a brain tumour.

“To be diagnosed with a brain tumour was a massive shock but I found a way to stay positive and this has helped massively. There is no doubt that a brain tumour diagnosis turns your world upside down. It is hard not just for the patient but for everyone around you. I am lucky that I have had such great support from my family.”

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Alan Williams

My husband Alan was diagnosed in 2007 with a brain tumour, following a seizure.  It was just five years after his younger brother, James, passed away from the same devastating disease.  Alan, 46, has been told that the tumour has now become very aggressive and, following recent further surgery at The Royal Victoria Hospital, Belfast, he is currently undergoing chemotherapy, under the care of The Cancer Centre in Belfast City Hospital. 

“During our journey through this illness, Brainwaves NI has been our rock,  offering advice and information when needed, as well as absolutely invaluable support from both the committee and members, all who have been affected in some way by this illness. The people behind this charity work tirelessly to raise funds for research into brain tumours which I believe will benefit so many people in the future who are affected by this terrible disease.”
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Alexandra Dixon

Alexandra Dixon was diagnosed with a low-grade oligodendroglioma brain tumour after suffering a series of severe epileptic seizures while on holiday in the south of France. Back in the UK, she underwent surgery in June 2007. An MRI scan in 2012 revealed the tumour had returned. She had surgery again followed by radio and chemotherapy. Read more

Ali Herbert

Since Ali was diagnosed with a brain tumour and epilepsy in April 2005, she has faced life with a smile despite the ups-and-downs of her illness. Having a great support network around her – in particular her dog Harry, who was able to sense the onset of her seizures – she has taken everything in her stride. Now she has participated in an indoor skydive to help fund research into the disease.

“The 13 years that have passed since my diagnosis have been full of ups-and-downs but I am determined to beat each challenge and keep living my life to the full. I’m in a battle with my tumour and choose to use positive mental attitude, good humour and determination to keep on smiling.”

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Amanda Day

For months, doctors accused Amanda Day of lying and dismissed her symptoms as “growing pains” and migraines. In fact, the teenager had a life-threatening brain tumour which was overlooked countless times, even when it was clearly visible on a brain scan. A talented artist, Amanda is now studying for her A levels, and despite being told that the tumour will regrow, she is determined to achieve her potential and live life to the full.
 
“My life as a ‘normal’ teenager was over. I felt isolated and abandoned by my friends. It was painful to see on Facebook that my friends were out partying and I couldn’t be a part of that. During my treatment I lost lots of weight and watched as my long hair and eyebrows disappeared. I felt ugly and disgusting and refused to have my photograph taken. Instead, I drew a self-portrait of what I hoped to look like once it was over. I had come to terms with dying but I didn’t want to be stuck in a dead-end job and I was determined to get back to school. We know my tumour will grow back but no-one knows when. I keep my hair short now. It’s my war wound and I wear it like a trophy, which makes me proud of everything that I have been through.”
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Amy Drummond

Sales Manager Amy Drummond was just 13 years old when she began to experience small seizures and memory loss while studying for her GCSEs. After visiting numerous doctors in a bid to find out what was wrong with her, she was finally diagnosed with a rare type of brain tumour. Fortunately, Amy was able to have the tumour removed by surgery, but the tumour took its toll on her being able to enjoy teenage life too. Now, as she heads towards the milestone of turning 30, Amy is determind to not let her past affect her future.

“I have always been open with people about what I went through as a teenager and how it changed me as a person. Looking back, I missed out on school, socialising, dating, playing sport and even making friends. I would even say my brain tumour robbed me of my teenage years.”

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Amy Quin

Determined mum Amy Quin will mark the first anniversary of her brain tumour diagnosis by skydiving 15,000ft from a plane with her sisters. The trio are raising money for the charity Brain Tumour Research. With a prognosis of five to seven years, Amy is hopeful that research will help to identify new treatments which would mean her tumour is operable giving her precious time with her family including partner Lewis and their four-year-old son Hector.

“In some ways my diagnosis has changed my life in a positive way - I now say yes to many more things, I want to embrace every opportunity I can and make the most of my time. This year, exactly 12 months since my diagnosis, I will be jumping 15,000ft out of an aeroplane with my two sisters. I did ask my consultant before I signed up and he gave me the thumbs up ‘as long as I wear a parachute.’ We’re raising money for Brain Tumour Research as, for me, this is my best chance. With quality research, maybe there will be a new treatment in a year’s time and my tumour will shrink and become operable.”

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Andrew Crowe

Andrew Crowe is in his early 40s and lives in Swindon. He has a brain tumour and has been through numerous operations and is trying hard to regain his normal life. Read more

Andrew Scarborough

Andrew was just 27 when he was diagnosed with a high- grade anaplastic astrocytoma brain tumour. He underwent surgery and began chemotherapy. After four months he stopped the treatment and made significant changes to his diet. Two years after surgery, a scan has shown no tumour growth, he has been able to come off all medication and is hoping to go back to work to investigate how nutritional therapy, including a restricted ketogenic diet, could help other patients.
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Andrew Stammers

Andrew is a practising ordained Baptist Minister at Radstock Baptist Church in Somerset. He lives with his wife Suzanne and three daughters, Gracie, Tamzin and Amwyn. Read more

Ann Swadden

Ann was 24 and had been married to Alan for less than a year when she was diagnosed with a brain tumour. In March, National Brain Tumour Awareness month, she will undergo a craniotomy procedure to remove the low-grade glioma. She opted to have surgery rather than “watch and wait” as she wants to be free of the tumour when she moves into her new home and looks forward to starting a family.

“I was given a choice: watch and wait or have surgery to remove the tumour. I have opted to have the operation on the basis that I am fit and healthy and have been advised I can expect to recover well. Without doubt, this is a really big thing but I know that there will be people around me whose job it is to make sure I don’t die and that I maintain a good quality of life. If anything, I am more apprehensive about the recovery than the operation itself. I know that I will need some form of speech therapy although my surgeon did joke that I was really good at talking so he didn’t think that would be a big problem!”
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Anna Berankova

Five years after her brain tumour diagnosis, Anna is at a crossroads. Until now, she has declined any intervention or conventional treatment preferring instead to trust her own instinct and to “watch and wait.” But, with her latest scan revealing growth, albeit minimal, she has an important decision to make.

“Physically I’m in good shape and strive to live my life to the full but there is a cloud of uncertainty above my head. I know that somewhere down the line I will have to take action but no-one can tell me with confidence when the right time is and what that action should be. It is a frustrating time but I am hopeful. In many ways I am grateful to my brain tumour, it has made me realise what the most important things in life are. It has given me direction and a focus. After all, it is going to be with me for the rest of my life and so I had better make the most of it.”

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April Watkins

April was diagnosed with a grade IV medulloblastoma in 2010 during her first year at university after suffering with debilitating headaches. Her mother had recently been diagnosed with lung cancer and tragically passed away while April was receiving treatment following her brain surgery. She has since been given the all clear. Read more

Ben Anderson

Fourteen-year-old Young Scout Leader Ben Anderson went to the optician for a check up at the end of the summer holidays. Within hours he was referred to hospital and a scan revealed he had a brain tumour. Immediate action was required and Ben underwent surgery. He recovered well but needed further treatment, this time in the US, to halt the growth of his tumour. Despite the gruelling treatment and disruption caused to his schooling, Ben did well in his GCSEs and is now studying for a career which he hopes will see him working with children with special needs.

“My world had been turned upside town. I had walked into the opticians with a child who seemed perfectly healthy and was just days away from going into year 10 to start his GCSE courses. Less than 24 hours later my son was diagnosed with a brain tumour and needed life-saving surgery. I was 29 weeks pregnant. When Ben turned to me and said: ‘I really want to be here to meet my new baby brother or sister. Am I going to die mum?’ I told him no, he wasn’t going to die and we would do whatever was needed.”
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Ben Lindon

Ben was diagnosed with an inoperable grade 2 glioblastoma brain tumour on March 11, 2008, a week before his 29th birthday.  He underwent radiotherapy treatment and continues to receive chemotherapy, having endured 54 cycles of temozolamide to date.  Amazingly, having been told that all his treatment would render him infertile, in September 2012, Ben fathered a miracle baby girl, Martha Rose. Even more amazingly, his wife, Kate, gave birth to their baby son, Sidney George, in June 2014, despite Ben having endured more than 60 cycles of chemotherapy by then.

 “I hope to use what is a very difficult and life-threatening experience for me to raise awareness and funding for research into brain tumours. If I can raise just a small amount of money and boost people's understanding of what is a very little-known-about disease, not to mention a terrifyingly complex issue, then my experiences will not be wasted and maybe other people suffering will see that all is not lost.”
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Bernice McCabe

Former headteacher, Bernice McCabe OBE, has instilled one essential piece of advice in her pupils: you have to rewrite the story when life takes an unexpected turn. Little did she know, Bernice would need to apply this lesson in her own life when, at the age of 65, she was diagnosed with a glioblastoma multiforme (GBM). One craniotomy, one surprise proposal, and several courses of treatment later, and Bernice is as resilient and optimistic as can be.

 “A CAT scan confirmed I wasn’t suffering from a stroke but something else was happening. I was transferred urgently to Addenbrooke’s Hospital with Rod driving separately behind the ambulance, worrying that I wouldn’t be alive when he met me there.”

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Bethany Louita

Bethany was just nine when an apparent minor allergy to oranges preceded her shock brain tumour diagnosis. Her Mum, Trish, saw her little girl happily dancing around the kitchen to One Direction before screaming out that her head was on fire and collapsing. Despite the years of surgery, hospital appointments and medications that followed, Bethany is now a bright and positive fourteen-year-old, eager to live her life to the full while knowing that her condition will be life-long.

There’s a lot that I don’t completely understand, some things that I don’t even remember, but I still have to cope with it all anyway. The tumour doesn’t care if I understand or not.”

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Bob Picken

A successful double bass player, Bob Picken has been a member of Liverpool band Ella Guru, as well as a backing for artists such as Neville Skelly, She Drew The Gun, Bill Ryder-Jones and Marvin Powell.

Diagnosed in 2012 with an anaplastic astrocytoma, whom he affectionately calls “Bieber” in reference to the Canadian singer Justin, Bob has managed to overcome a number of setbacks to carry on with his career, and in his own words “stick two fingers up to cancer”.

“You go through five stages of cancer: denial, anger, bargaining, sadness and eventually acceptance.”
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Brian Carrick

After suffering a seizure at his home in Milton Keynes, 54-year-old Brian Carrick underwent surgery to remove a grade two oligodendroglioma, which had been growing unnoticed for at least 10 years. Brian feels tremendously lucky it was discovered at a point where he could benefit from new research and before it became cancerous. Brian is currently undergoing a six-week course of radiotherapy followed by chemotherapy to try and remove a small amount of tumour that was left after surgery.                                              

“I dread to think what could have happened if Emma hadn’t been home that day, or if I was driving at the time of the seizure. I’m very lucky that I’m here and able to tell my story, unlike so many others that have been struck by such a devastating disease like cancer.”

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Brian Rockell

Brian Rockell has worked within the healthcare industry for decades, yet when he was diagnosed with a glioblastoma, aged 68, he was shocked by the distressing experience of brain tumour patients. Although facing his own anxieties and challenges, Brian is now determined to campaign for and support others affected by this devastating disease.

“I was transferred to the Royal Sussex County Hospital for surgery…. and it went relatively well. Looking back, the surgery was the easy part. I had no idea then how much support I would need as a patient and how different my life was about to become...”

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Carl Piddington

Manchester pub landlord, Carl Piddington, was fit and healthy with three children, when he discovered one day that he could no longer control his hand. After a massive seizure and subsequent tests, Carl was told that his aggressive brain tumour could end his life within a year. Determined to be a long-term survivor, Carl is now eight years on after diagnosis and facing yet more treatments.

 “I know this is terminal. Maybe it will get me, maybe it will be something else, but I’m not going to sit and wait for it. As my dad always used to say, while laying his hands on my shoulders and looking into my eyes: “you are a lion, my son!”

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Carly Beasley

Carly Beasley had landed her dream job and had recently married her childhood sweetheart, Kris, when she had her first seizure. Following a series of tests and scans, she was diagnosed with a low-grade brain tumour in October 2017 and had surgery to remove the tumour three months later. Having made a remarkably quick recovery from the operation, Carly is now back at work and determined to use her experience to help others.

“With anything that people go through, not just brain tumours, you go through a mix of emotions. I have had anxiety about my illness and have gone through the inevitable ups-and-downs, but there are many positives I can take from my situation. At least my tumour is low-grade. At least I made a full recovery.”

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Carol Hayes

When Carol Hayes was sent to A&E in February 2018, she expected the worst and sadly her fear became reality. It was a brain tumour that had been causing her constant headaches and affecting her vision. The 56-year-old is still trying to come to the terms with her diagnosis but she remains positive as she undergoes six months of chemotherapy.

“Shortly after, my worst fears were confirmed: I had a brain tumour. It was like a truck had hit me in the chest but somehow the news just didn’t sink in… Nothing can prepare you to hear that, and even though I’d been worried I had a brain tumour, I couldn’t believe this was happening to me.”
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Catrin Ireland

Number 13 definitely turned out to be unlucky for me – I was diagnosed with a meningioma brain tumour on our 13th wedding anniversary.  Surgery left me with vision and balance issues – I feel very dizzy walking any distance and suffer with extreme fatigue which means I regularly find myself needing to sleep during the day.  Obviously, I had to give up my driving licence.  I now get around on a mobility scooter which isn’t what I ever imagined I would be doing aged 41 as I am now.

“It seemed completely surreal when I heard the words ‘brain tumour’ as that thought hadn’t even entered my head.  I found myself pacing the corridors of the hospital, crying and swearing (which isn’t like me), while my husband kept trying to hug me.  The date was the 23rd May – a day I will always remember because we should have been celebrating  our 13th Wedding Anniversary!”
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Charlie Boutwood

Charlie was the much wanted son of his parents. They already had two daughters and he completed their happy family. At 20 months he faced the terrifying prospect of surgery to remove an enormous and malignant brain tumour. Miraculously he made a remarkable recovery. Read more

Charlie Cox

Charlie was just three and a half months old, in 2011, when he first started to have any symptoms.  At eight months, he was diagnosed with a brain tumour (which turned out to be a grade 2 oligoastrocytoma – rare among young children) and at 11 months he underwent surgery.  Just over three years later, in January 2015, Charlie welcomed his little brother Freddie into the world and in September the same year, he started in Reception at Abbey Primary School in Morden, Surrey.  He had 43 cycles of chemotherapy during an 82 week period which finally came to an end in January 2016.

“Most of the time I have managed to stay positive – I have had to be strong for Charlie.  The only time I really broke down throughout this roller-coaster was the day before my baby boy had his huge operation.  I couldn’t help worrying that I might end up leaving the hospital without Charlie.”
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Charlie Pudney

Charlie was just seven-years-old when he was diagnosed with an ependymoma. The tumour was successfully removed in surgery but, as there was a high chance of regrowth, Charlie and his family travelled to the States for nine weeks of Proton Beam Therapy. Now back at school and enjoying football once more, Charlie is well and undergoes regular scans. The experience has changed the life of his family forever.

“Charlie is the same little boy as he was before although, emotionally, the experience has changed us. We live for now and don’t take anything for granted. I am angry and frustrated to think that brain tumours kill more children and adults under the age of 40 than any other cancer … yet just 1% of the national spend on cancer research has been allocated to this devastating disease. This is such a complex disease and although I understand this makes diagnosis and treatment so difficult, it affects so many young people that this is precisely why more needs to be done.”
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Charlotte Giddings

Since her diagnosis with a grade two oligodendroglioma, mum-of-two Charlotte Giddings has undergone three brain tumour operations and had part of her skull removed. She has had long periods when she was unable to drive and the business she ran with her husband has closed down. Despite this, she considers herself fortunate. 

“In many ways I am lucky, my tumour is low-grade. I don’t want to sit around worrying about how long I’ve got left. We know that if the tumour does come back my only treatment options would be chemotherapy and radiotherapy. It seems ridiculous that brain tumours affect so many people yet just 1% of the national spend on cancer research has been allocated to this devastating disease.”

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Charlotte Reid

Charlotte was just three years old when she started having bad headaches. As she grew up, the pain would last for weeks and what was initially dismissed as stress was eventually diagnosed as a brain tumour. Although “low- grade”, the treatment to combat the growth of Charlotte’s tumour has had severe impact on her life. Aged 17, she is dependent on her parents and suffers from short term memory loss and impaired vision.

“Prior to her diagnosis, Charlotte was like any other teenage girl. She was interested in fashion and make up and enjoyed pop music, particularly Adele, Little Mix and Ellie Goulding. Now, while she can cook a simple meal, she has to be reminded about getting dressed and brushing her teeth. Our world seemed to alter the most six months after Charlotte’s treatment which was a necessary evil. Her life has been turned upside down by the side effects which are huge and life-changing and I am so glad we didn’t know before about the damage it would cause.”
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Chris Blastland

After experiencing months of crippling migraines, sickness and balance issues sports-mad Chris was diagnosed with a brain tumour at just 15 years old as he was due to sit his mock GCSEs. Now 25 years on, Chris looks back and counts himself lucky that his tumour was low-grade and able to be removed by surgery, as many others are not so fortunate.

“When I was told I had a brain tumour and that it was the cause of all my symptoms that year, I was actually quite surprised, though my parents were obviously very upset. My initial thought was could I still play football and when could I leave to go see my friends. We were told that it was low-grade tumour, about the size of a golf ball and I would need surgery to remove it. There was and still is very little known about brain tumours and what causes them, so when the consultant said they were confident that they could get it all out, this news didn’t stop my parents from worrying about me.”

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