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In Our Hearts

Less than 20% of those diagnosed with a brain tumour survive beyond five years

These very brave people will remain in our hearts for ever and it is because of them that we are fighting to find a cure so that no other family should have to suffer in the same way.

We thought of you with love today, but that is nothing new.


We thought about you yesterday, and days before that too.


Anon

You are forever in our hearts.

Recently published stories

Rayhan Majid

Rayhan Majid from Airdrie near Glasgow was a fun-loving four-year-old who loved sports and Transformers. When he got headaches and started being sick, his parents Nadia and Sarfraz took him to four different GPs in six weeks, but they all dismissed their concerns. Convinced that something was wrong, Rayhan’s parents took him to hospital where an MRI scan revealed he had a high-grade medulloblastoma brain tumour. Despite undergoing four different surgeries and six weeks of radiotherapy, Rayhan sadly died during his first course of chemotherapy on 7 April 2018 with his adoring parents by his side.

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Andrew Mackie

Andrew Mackie from Dinnet in Aberdeenshire, was a fun-loving 44-year-old who loved motorbikes. When he started having seizures in August 1999, his GP thought he may have epilepsy but six months later, when his eyesight started to deteriorate, he had a scan which revealed he had a high-grade astrocytoma brain tumour. The lorry driver and father of two girls underwent radiotherapy, surgery and palliative chemotherapy. He died at home on 21 February 2003, with his adoring family by his side.

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Briar Butler

Briar Butler from Kendal in Cumbria, was just 30 when, in June 2018, she received the devastating news that she had an incurable brain tumour. Her diagnosis came after years of suffering from debilitating mental health problems. Briar, a trainee accountant and keen pole dancer, underwent surgery to debulk the tumour and several more operations after she developed infections in her skull. The mum-of-one spent the final few months of her life in a care home, which meant she was unable to see her loved ones when restrictions were imposed during the COVID-19 pandemic. Briar died on 17 August 2021, leaving her four sisters, her mum Beverley and her six-year-old Noah devastated.   

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All stories

Andrew Mackie

Andrew Mackie from Dinnet in Aberdeenshire, was a fun-loving 44-year-old who loved motorbikes. When he started having seizures in August 1999, his GP thought he may have epilepsy but six months later, when his eyesight started to deteriorate, he had a scan which revealed he had a high-grade astrocytoma brain tumour. The lorry driver and father of two girls underwent radiotherapy, surgery and palliative chemotherapy. He died at home on 21 February 2003, with his adoring family by his side.

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Andrew Williams

Andy married his childhood sweetheart and together they had two children and a lovely life. But then Andy started shaking uncontrollably, leading eventually to his diagnosis with an inoperable and incurable DIPG brain tumour, much more common among children. Radiotherapy changed his personality and his marriage broke down. Andy passed away three and a half years after his diagnosis, aged 33.

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Andy Graham

In just 18 months, Andy Graham’s life had changed beyond recognition. The 52-year-old was diagnosed with a low-grade haemangioblastoma and, despite surgery and treatment, he suffered unimaginable trauma and distress as the tumour continued to grow. Leaving behind his wife and two sons, Andy sadly passed away on New Year’s Eve 2017.

“When the operation finally went ahead in August, Andy’s ordeal didn’t stop there. He was in theatre for 11 hours and I received a call from the surgeon saying ‘if I carry on I’m going to kill him.’ They had only touched the tumour and so much blood flowed that they spent hours mopping it up. Andy had psyched himself up for this surgery for so long and it had been a disaster.”

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Andy Watts

Andy Watts was 54 and living in Ipswich, Suffolk, when he was diagnosed with a glioblastoma multiforme (GBM) following surgery which included signing up to take part in a trial of 5-ALA, the “pink drink”. A positive and upbeat person, Andy tried to jolly his family along with jokes. Although his loved ones knew his tumour was incurable and terminal, nothing could prepare them for the fact they lost him just over five months later.

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Angus Anthony

In 2008, Angus was working as a police officer at Scotland Yard.  He walked into a post at the railway station and afterwards had a severe headache which progressively got worse.  We suspected a haematoma and were referred for a scan at our local hospital.  In fact, the news was much worse – it revealed that Angus had a brain tumour.  Angus was only 41, a husband and father of two young children.

Since the initial diagnosis, we also had to come to terms with the fact that Angus had a very rare and very aggressive cerebral lymphoma brain tumour.  There are only about seven cases across the UK and 30-35 in the whole of Europe.  Almost nothing is known about cerebral lymphomas because they are so rare - so there has been no research into how to treat them.  Angus was offered drugs which had not been previously tested.

 
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Anna Olivia Hughes

Anna was diagnosed with a brain tumour in February 2005 and following a 7-hour operation to remove it she underwent an intensive chemotherapy programme at Addenbrooke's Hospital in Cambridge. For 15 months she spent every other week in hospital but sadly, like the majority of children diagnosed with brain tumours, Anna lost her battle and passed away aged 3 years 8 months.


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Anna Swabey


Diagnosed with a brain tumour at the age of 23, Anna Swabey was intitally given just months to live. Under the care of neurosurgeon Kevin O’Neill, who leads the Brain Tumour Research Centre of Excellence at Imperial College, London, Anna had surgery and treatment. She also got engaged and shared her experiences through her blog Inside My Head. Anna passed away on 16th September 2016, the day before she was due to marry.


“I am fortunate in that I don’t feel my illness dictates my life and while I am most definitely the same person, I even feel as if I am a better person for it. I know this may sound odd but my diagnosis has made me view my life differently and the way I am choosing to live now leaves me feeling fulfilled. I love knowing that I can make a difference, and, potentially help others.”
 
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Annie Hughes

Annie had severe speech and language difficulties which meant that she had to attend special schools from the age of six.  Despite her problems, Annie was a ray of sunshine and made friends wherever she went.  On leaving school she found herself a job, met her future husband and started a family.  After all the early adversities, it seemed that Annie’s life was to have a fairy tale ending…

“As a family, we are all united in a desire for Annie’s legacy to be that fair amounts of funding are dedicated to research into brain tumours.  We want there to be hope, not despair, for other people who learn that a member of their family has been diagnosed with this devastating disease.”
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Anthony Bowes

Fitness fanatic Anthony Bowes, from Bolton, was just 28 when he lost his brave battle with an incurable brain tumour.

His diagnosis came in 2016, after suffering a number of seizures. In the months that followed, he underwent two brain surgeries, radiotherapy and chemotherapy, fighting the terrible disease with strength and determination until the end.

For Anthony’s family, the distress of losing their loved one was worsened by what they felt was a lack of appropriate care immediately prior to his death. They have since received an apology from the NHS and an assurance that changes will be made to prevent the same mistakes being repeated.

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Aria Nikjooy

We are grateful to Aria who worked with us in October 2020 to share his story here. Sadly, he passed away on 8th February 2021. We remember Aria as we continue our work to raise awareness of this devastating disease and to fund research to help find a cure. He will be forever in our hearts.

In November 2018, paediatric trainee doctor Aria Nikjooy was diagnosed with a rare brain tumour, sitting in his cerebellum. Aged just 27, he was operated on, treated with radiotherapy and chemotherapy and thankfully the tumour was kept at bay. Then, in March 2020, the same brain tumour came back and he had a second brain surgery. Devastatingly, a second recurrence came in July 2020 resulting in another brain operation and more cancer treatment. As part of his recovery and rehabilitation, Aria turned to writing. This culminated in him writing a children’s fiction book to help to explain the complex issues surrounding illness and cancer to his little boy.

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