'I'm living with the worst type of brain tumour'

Georgie Maynard has suffered from regular migraines all her adult life but one Saturday lunchtime in May 2023 she knew something was not right.

"I went out to the garden to get some fresh air and I thought 'no, this light is doing my head in' so I walked inside, sat on the sofa and then it just went bang," she said.

"It was excruciating... I actually thought that was it, I was dying at that moment."

The mother of five, from Oxfordshire, had suffered a sudden seizure.

Her children called an ambulance and paramedics arrived within minutes.

The 46-year-old was taken to hospital and given a CT scan, then sent home.

The following week an MRI scan revealed she had a grade four glioblastoma (GBM) - an aggressive brain tumour.

"It's the worst type of brain tumour," she said.

"One in four live past a year, 5% last five years - it's quite shocking.

"At that point you've got no belief that that's coming at your door because it's completely out the blue."

Mrs Maynard underwent an awake craniotomy, as well as radiotherapy and chemotherapy.

Her latest scan showed the tumour was stable but she is aware the average life expectancy following diagnosis is 12 to 15 months.

According to Cancer Research UK, glioblastomas are the most common type of cancerous brain tumour in adults, and remain the biggest cancer killer of children and adults under the age of 40.

However, just 1% of the national spend on cancer research is allocated to the disease.

Mrs Maynard is keen to raise awareness of the condition and do all she can to ensure funding for research is made a priority.

Together with her brother, Charlie Maynard - the Liberal Democrat MP for Witney, Mrs Maynard visited the Centre for Medicines Discovery at Oxford University.

A team led by Prof Daniel Ebner is working on a five-year study to identify existing cancer drugs that might be able to shrink brain tumours.

Out of 10,000 drug combinations, only half a dozen have real potential.

While clinical trials would still be required, because they have already been approved by regulators, Prof Ebner said they could be given to patients within the next five years.

"I'm optimistic for glioblastoma research. Some of the best scientists I've ever worked with are making fantastic breakthroughs," Prof Ebner said.

He added: "Where we would definitely need additional help is with funding to carry a lot of the pre-clinical work we've done to date through to clinical trials. That's the major stumbling block at the moment."

In 2018, the government pledged to invest £40m in research into brain tumours and improve access to clinical trials, following the death of Dame Tessa Jowell.

Almost seven years later, only about £15m of that £40m has been spent, according to the Brain Tumour Charity.

Mr Maynard said he wanted to know why the remaining money had not been invested.

He said: "There's tonnes of really good research that's crying out for money. It's not doing any good sitting in a bank and I really want some answers.

"Does it exist... and then what are we going to do to spend it and start saving some lives?"

A spokesperson for the Brain Tumour Charity said: "A sustainable and strategic approach to government funding for research into brain tumours is long overdue in order to make progress.

"This should include a broad range of research projects from early-stage understanding - like Prof Ebner's - to late-stage trials.

"At The Brain Tumour Charity we are proud to fund a comprehensive and robust research programme and can only do so thanks to supporters like Georgie."

A Department of Health and Social Care spokesperson said: "We will build on Tessa Jowell's powerful legacy to improve both research and care for brain cancer patients across the UK.

"We spend more than £1.6bn annually on health research and have recently launched two new calls for studies unlocking the next generation of treatments for brain cancer."

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