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Business leader demands action after wife’s brain tumour death

Sam and Julian in summer 2019

The former managing director of a train operating company whose wife died after a shock brain cancer diagnosis said there were no warning signs of the disease.

Sam Edwards, 52, of Cowbridge was rushed to hospital after suffering a seizure out of the blue in October 2021. A scan at Princess of Wales Hospital in Bridgend showed a large inoperable lesion on her brain.

Her widower, Julian Edwards, said: ”As a spectator, you can’t move quickly enough watching someone appear as if they are possessed, falling into bedroom furniture. It was one of the most frightening experiences I have witnessed.”

A biopsy confirmed the tumour was a grade 4 glioblastoma (GBM) and the family of four were given the devastating news that any treatment would be palliative.

The 53-year-old was forced to leave his role as managing director at West Midlands Trains to look after his sick wife. He added: “I’ve asked myself if there were any signs before we were given the horrific news of her brain cancer and the answer is always the same. No. Nothing.”

Desperate to save Sam, the family sought a second opinion at the Royal Marsden in London only to be given the same stark prognosis of 12 to 18 months.

The father-of-two said: “There was a care plan put in place, which we were told was similar to how other cancer types are treated. It felt like we were told ‘here’s the problem but we can’t fix it’.

He added: “All Sam wanted to do was freeze where she was in time at that moment. She had lost some mobility but maintained a level of independence.

“We were encouraged not to take Sam out of the country for clinical trials and instead enjoy the time we had left together. The trial system is too slow and there is a very specific and limiting set of criteria the patient needs to match to even get on to any trial.

“I would have given my right arm for Sam to have been diagnosed with a more manageable cancer with a better survival rate.”

Robyn, Samantha, Nancie and Julian in 2022

Sam endured gruelling radiotherapy and chemotherapy treatment however as she deteriorated, the cancer returned more aggressively. She had another seizure and died six weeks later on 15 December 2022.

Sam’s death has inspired West Midlands Trains – where Julian worked as managing director until his wife’s diagnosis – to launch a two-year charity partnership with Brain Tumour Research, aiming to raise £50,000 to help fund the fight against this devastating disease.

West Midlands Trains launches its Charity of the Year partnership with Brain Tumour Research

One in three people knows someone affected by a brain tumour.

Julian now works as business change director at Abellio Group. He added: “My grief often turns to anger and frustration. Treatment appears to be the same as it was in the 90s – when is the next big breakthrough going to happen? I hope that in our children’s lifetime, something positive comes for treating brain tumour patients.”

He’s campaigning alongside the charity Brain Tumour Research to help reach 100,000 signatures on its petition to increase research funding, and prompt a parliamentary debate.

The charity is calling on the Government to ring-fence £110 million of current and new funding to kick-start an increase in the national investment in brain tumour research to £35 million a year by 2028.

The Government must recognise brain tumour research as a critical priority. This increase in research investment would put it in line with the spend on cancers of breast, bowel and lung, as well as leukaemia.

Mel Tiley, community development manager at Brain Tumour Research, said: “We are grateful to Julian for supporting our petition and helping to raise awareness.

“For too long governments have put brain tumours on the ‘too difficult to think about’ pile. Five years after the Government announced £40 million for brain cancer research, just £15 million has been spent. Patients and families continue to be let down by a funding system that is built in silos and not fit for purpose.

“If everyone can spare just a few minutes to sign and share, we will soon hit the 100,000 signatures we need and help find a cure, bringing hope to families whose loved ones have been affected by brain tumours.”

To sign and share the petition before it closes at the end of October 2023, go to www.braintumourresearch.org/petition