A woman from Redruth who lost her beloved husband to a brain tumour has dedicated a day of research in his memory during March, Brain Tumour Awareness Month, after almost £4,000 was raised to help find a cure for the devastating disease.

Liz Smith, 49, from Redruth was inspired to support the charity Brain Tumour Research after losing her first husband Luke Smith, aged 47, in September 2019.

On Thursday, March 6, Liz, along with her new husband Tony O’Rourke and Luke’s mother Sue Smith, was invited to the Brain Tumour Research Centre of Excellence at The University of Plymouth to find out how the fundraising in Luke’s memory is helping support scientists working to improve the diagnosis and treatment of children and adults with brain tumours.

The team at the University of Plymouth are focusing particularly on research into low-grade brain tumours, which often go on to develop into high-grade brain tumours with much poorer prognoses for patients. The Centre, one of Europe’s leading research institutes for low-grade brain tumours, is proactively working with national and international groups to swiftly translate their research into clinical benefit for patients.

Luke was a stills photographer and camera technician in the film industry, producing “amazing and beautiful photography”. Just prior to his diagnosis he had recently returned to Cornwall to work at the School of Television and Film at Falmouth University.

Liz said: “Luke was diagnosed with a glioblastoma brain tumour in 2016 after suffering with strange symptoms including smelling things that weren’t there and having words pop into his head that he couldn’t make sense of. He would ask me if they were from a film, a book or a song. I also noticed a change in his personality – he became aloof, distant, withdrawn and even angry.”

When Luke managed to get his GP to take his symptoms seriously, he was sent for an MRI. The couple met with the GP and were given the news that Luke had a brain tumour which did not look good.

He underwent a craniotomy in September 2016 at Derriford Hospital which removed everything the surgeons could see, but Luke was told the tumour would come back. He also had radiotherapy and chemotherapy treatment and was very well during that time, possibly helped by a variety of complementary therapies, including the ketogenic diet, medicinal cannabis and mistletoe therapy.

Luke also privately took a cocktail of repurposed drugs which he initially sourced through the Royal Marsden Hospital. Apart from seizures, which were sometimes tonic-clonic, needing paramedics and even admission to hospital, Luke was quite healthy for around a year and managed to get back to work. However, in September 2018, the tumour came back.

Liz, who now, along with husband Tony who lost his first wife to cancer, supports people in the community suffering with grief, added: “Luke started to lose all his faculties and it felt like I lost my husband long before he died. It took him forever to die. Brain tumours are a horrible disease which I wouldn’t wish on anybody.

“He’d always said he never wanted to be a body in a bed, but sadly Luke was so ill he was bedbound for the last few months of his life.”

Luke’s university friend, Hannah Jordan from West Horsley in Surrey, who has become a close friend of Liz’s, decided to raise funds for Brain Tumour Research to sponsor a day of research in his memory.

She was down to run the Hampton Court Palace Half Marathon in March 2020, but as it was cancelled, Hannah ran the distance anyway around her local area. Until recently, Liz ran the Wooden Box café with Tony, where she held a Wear A Hat Day event for Brain Tumour Research.

Hannah said: “The Government doesn’t give enough money to research brain tumours and it doesn’t recognise the terrible impact they have on families. It’s some comfort to think that the donations made in Luke’s memory are helping to make a difference for people diagnosed with brain tumours in the future.”

Brain tumours kill more children and adults under the age of 40 than any other cancer, more women under 35 than breast cancer and more men under 70 than prostate cancer.

Luke’s family was given the opportunity to tour the labs at the University of Plymouth, led by director Professor Oliver Hanemann, chair of clinical neurobiology at the university, and spoke to scientists about their work to find a cure. They also placed a tile dedicated to Luke on the Wall of Hope at the Centre, representative of the £2,740 it costs to sponsor each day of research.

Liz said: “Sadly, it’s too late for Luke, but I hope the money raised in his memory is life-changing and brings the day closer when a cure is found and families don’t have to go through what we have.”

Louise Aubrey, community development manager for Brain Tumour Research, said: “We’re really grateful to Luke’s family and friends for their support and generosity. We hope that their visit to our Centre of Excellence at Plymouth offered a useful insight into all we’re doing to improve treatment options for patients and, ultimately, find a cure.

“Just under 13 per cent of those diagnosed with a brain tumour survive beyond five years compared with an average of 54% across all cancers, yet just 1 per cent of the national spend on cancer research has been allocated to this devastating disease since records began in 2002. This has to change.”

Brain Tumour Research funds sustainable research at dedicated centres in the UK. It also campaigns for the Government and larger cancer charities to invest more in research into brain tumours in order to speed up new treatments for patients and, ultimately, to find a cure.

The charity is the driving force behind the call for a national annual spend of £35 million in order to improve survival rates and patient outcomes in line with other cancers such as breast cancer and leukaemia.

To find out more about sponsoring a day of research, go to www.braintumourresearch.org/fundraise/sponsor-a-day.