Linlithgow widow is raising awareness and funds in her husband's memory
Joanne Macfarlane is urging Holyrood to fund more research into brain tumours after losing her husband to the disease – one day before their silver wedding anniversary.
Andy (72), from Linlithgow, began showing signs of confusion and difficulty with everyday tasks during a Christmas holiday in Fuerteventura in late 2022.
Joanne initially thought he might be overtired or unwell but when he became increasingly disoriented and forgetful, she contacted their GP in Scotland.
They were urged to return home immediately for further tests. A CT scan at St John’s Hospital revealed a brain tumour, later diagnosed as a glioblastoma – an aggressive, cancerous form of the disease.
Joanne (63) said: “Andy was the love of my life – quiet, kind and full of cheeky humour.
“He had a deep love of the natural world and spent his career as an ecologist and countryside manager.
“We met on a woodland management course in 1992 and had been together ever since. I was in a state of total shock when doctors found the tumour.
“Andy didn’t fully understand what was happening but the doctors started him on steroids and, within days, he seemed like himself again.
“After surgery at the Royal Infirmary of Edinburgh in February 2023, we were told it was glioblastoma, a word we’d never even heard before.
“The oncologist said it was incurable and that he likely had 12 to 18 months. Andy just said, ‘Alright then, I’ll go for 18,’ and we focused on the treatment ahead.
“It was a deeply stressful time as I wasn’t sure what the future would look like.”
Andy received six weeks of radiotherapy at the Western General Hospital in Edinburgh. Friends rallied around to help with transport to daily appointments, giving Joanne vital support.
For a while, scans showed stability but, in early 2024, Andy’s condition began to decline. He became increasingly confused, unsteady, and dependent on Joanne for full-time care.
Despite the challenges, the couple returned to Fuerteventura in April 2024 to celebrate Joanne’s birthday – a final trip to a place they both loved.
“That final year was the hardest,” Joanne said. “Andy had become disoriented and distant, so it was like losing him before he was gone.
“He was so frustrated by what was happening to him and caring for him became incredibly difficult.
“He was in and out of hospital and eventually moved to a palliative care unit in Armadale, where they were so kind. Even near the end, there were moments where I knew he was still there.
“One day, I was crying beside him and he gently stroked my arm, just like he used to. It was the last loving gesture he made and I’ll never forget it.”
Andy remained at the palliative care centre in Armadale for four days. On July 1, 2024, he died peacefully with Joanne by his side – just one day before their 25th wedding anniversary.
One in three people in the UK knows someone affected by a brain tumour. The disease is indiscriminate; it can affect anyone at any age.
Brain tumours continue to kill more children and adults under the age of 40 than any other cancer; yet, to date, just one per cent of the national spend on cancer research has been allocated to the disease since records began in 2002.
Joanne is now fundraising and calling on Holyrood to increase investment in tackling brain tumours, in Andy’s memory.
Through efforts such as the 200k in May Your Way challenge, she’s raised over £5,750 to support the Scottish Brain Tumour Research Centre of Excellence, a collaboration between Brain Tumour Research and Beatson Cancer Charity.
The centre is dedicated to developing new treatments for glioblastoma, which took Andy’s life.
Joanne added: “Since Andy’s death, I’ve raised more than two days of funding for the new research centre in hope that they’ll find a cure. I switched all my birthday and Christmas fundraisers to support them.
“This year, for the 200k challenge, I walked, swam and sketched – one drawing equalling 2.3 kilometres. Friends took to requesting sketches more than tracking my mileage! I didn’t mind. It kept me occupied, creative and connected to Andy.
“What I find unforgivable is how little is still known about brain tumours. How can something that kills more children and adults under 40 than any other cancer receive such little funding? It’s why I’m campaigning now – writing to politicians, raising awareness and doing all I can to support this cause.
“Glioblastoma is a horrible diagnosis and right now, it’s a death sentence. That has to change for everyone who receives the same devastating news as Andy.”
Ashley McWilliams, community development manager at Brain Tumour Research, said: “Andy’s story highlights the heartbreak so many families face.
“Joanne’s courage in sharing their story and her fundraising efforts are helping to drive vital awareness and support research.
“We are so grateful for everything she is doing in Andy’s memory.”