Claire Cordiner from Edinburgh has lost four members of her family to brain tumours. Her mum, Margaret O’Kane, youngest sister Angie Jones, and 18-year-old nephew Max Jones all died from a glioblastoma (GBM). In February 2024, Claire’s cousin, David McCulloch, died from an astrocytoma.
Claire tells her family’s story…
Brain tumours have had a devastating impact on my family. We’ve now lost four loved ones to the disease.
My mother was a very loving, caring person. She was always busy, and was a feeder, always making sure that everyone had plenty to eat. She just loved kids; I’m one of 12. She brought us all up and then went on to do child minding after that, so she was incredibly busy all the time. She was so patient with everybody, and she was just great to have around – warm, loving, kind, generous and funny.
I remember she phoned me one evening to say she had been at the GP, and he thought she’d had a mini stroke, but it was nothing to worry about. But then a few months later, my dad took her to A&E because she was quite incoherent, she couldn’t really speak, and she just wasn’t making any sense. She had a CT scan which showed she had two brain tumours, both glioblastoma (GBM), one at the front of her brain and one at the back.
“When I found out, I was devastated. My youngest sister, Angie, had been diagnosed with a brain tumour a few years earlier.”
She was operated on within a couple of weeks; they couldn’t touch the one at the back because it was at the base of the skull near her spine. They took what they could from the front tumour, but they couldn’t take it all out.
Mum had one week of radiotherapy, having it every other day because the doctors didn’t think she would be able to manage anything stronger. As a family, we accepted that and didn’t ask any questions. We just accepted that it was the best course, and we didn’t think there was anything we could do. We were just following the guidance of the doctors. That was the only treatment she could get, and she died just under a year after her diagnosis.
“I spent as much time with her as I could, but it was really hard to watch her slowly die. There was nothing to hope for, and she was young – she was only 66 – so I felt angry that I was going to lose her, and my children wouldn’t see her.”
When Mum died, it was a huge change to all of our lives, especially my dad who was lost without her. We would always gather at Mum and Dad’s house for different celebrations like Christmas and Easter, but my dad didn’t want that so we didn’t see family as much as we would have liked because we didn’t have anywhere to all meet up. It was a big change in our lives, and it was hard because we all liked to get together. Losing someone impacts on everything, even the way you think about life; you just want to live your life to the fullest because you just don’t know what’s around the corner.
My wee sister Angie, who was the youngest girl in the family, was so full of life. She was the life and soul of the party, very bubbly and loved life. She had lots of friends, and I have so many fond memories of her which always make me laugh. I don’t think I have a memory that I’m sad about.
“She was diagnosed with a GBM six months after giving birth to her son Max. It was just devastating to hear that.”
She was only 31 when she was diagnosed but she just took it all in her stride. She used to send us email updates, telling us stories about what was happening in her life at that moment, and they were always funny.
“When Angie was diagnosed, she delayed treatment for a short time because she wanted to try for another baby. She knew that if she had chemotherapy and radiotherapy, she would have no chance.”
Her outlook was that she would like another child, even though she knew there was no recovery from brain tumours. Unfortunately, she didn’t have another child, so she had the treatment. She had to wear a big mask which was specifically made for her; it made her look like the character from the Halloween movies, and she actually wore it as a Halloween costume one year! It was very scary looking but that was her humour.
She was in remission for a few years which was great but then her symptoms started to come back again. She repeatedly developed pneumonia so she would be well and then unwell, so the doctors had to stop and start her treatment the second time round. Unfortunately, after a few months of trying, they said they probably couldn’t do anything else. She was given that news in November 2009 and she died the following month. Angie was 36 years old when she died, and her son Max was five, it was very sad.
“Having to watch Angie go through this, after seeing what happened to Mum, was even more devastating because she was so young and had a young son.”
I spent a lot of time with Angie; in her final month, I took time off work and I drove to see her in East Kilbride, south of Glasgow, every other day to just spend the day with her. I wrote Christmas cards for her which I didn’t get to send. It was horrendous having to go through it all again.
In January 2022, Angie’s only son, Max, started having headaches and sickness and attended his GP. It was believed that he was suffering from post-Covid symptoms, but blood tests were taken to check. All the results came back clear.
Over the next few months his headaches persisted, and the sickness was more frequent. He attended his GP again and was treated for migraine type headaches. On Father’s Day in June 2022, Max was taken into A&E because his headache had got so severe, and he was now losing feeling in his leg. A CT scan showed an anomaly in his brain, and he was referred to the neurosurgeons at the Queen Elizabeth hospital.
Just 10 days later he had surgery to debulk the tumour. This was a week before his 18th birthday.
“He managed to be at home for his birthday, but the celebrations were incredibly quiet as he was still recovering from brain surgery.”
He didn’t feel up to having his 18th birthday pint until three weeks later. The following week, it was confirmed that his tumour was indeed a GBM which just knocked everyone for six because this was the third person in our family to have a brain tumour, yet we’re told brain tumours are not hereditary.
That week of just waiting for the diagnosis was awful; we all just knew in our minds what it was going to be, and Max said he knew as soon as he started having symptoms.
“It was so painful to know what lay ahead for him, and for him to know that his life was going to be cut short. He was so incredibly brave.”
Max loved cooking and was doing a college course in Professional Cookery which unfortunately got cut short because of his diagnosis. He was so outgoing, he loved life and just wanted to have fun all the time, as you do when you’re that age.
Max was passionate about playing football and played for a local team right up until his diagnosis. The day that he was going for surgery, he received a call from a local amateur senior team inviting him along to try out for the team. I spoke to the coach and had to explain the circumstances. It was the hardest call that I’ve ever had to take as I knew how much Max loved to play and how keen he was to continue into an adult team.
He was in hospital for a few weeks and then attended daily for six weeks of radiotherapy. Chemotherapy then followed and by October, it seemed that his treatment was working. The whole family rallied around him, and we all took it in turns to take him to appointments because it was too much for one person to have to do. When it was my turn, I think I took him on a different route to the hospital each time because I don’t know Glasgow that well, much to Max’s delight! He always made sure he got his roll and sausage after his treatment, which was his wee treat.
“Max was just incredible, and he coped with it so well for someone so young. His friends were also an incredible support to him.”
He had the most amazing family holiday in December 2022. However, early in January 2023 we received the devastating news that his tumour was growing again, he had a second tumour at the base of his brain, and it had also spread to his spine. The treatment this time round did not agree with him and just three weeks later, we were told that there was nothing else that could be done. Max was transferred to Kilbryde Hospice at the end of January. Max had the hospice nurses wrapped around his little finger, and they would do anything for him! That was fantastic, they looked after him so well.
We lost Max one week after his 19th birthday which was a huge loss to the family.
A fourth member of my family, my cousin David McCulloch, was diagnosed with an astrocytoma about five years ago.
“That was another devastating blow because, again, we’re told brain tumours aren’t hereditary but that’s four members, and David was a maternal cousin, so he was from the same side of the family. To me, there must be some connection.”
David was due to receive treatment, however COVID struck so that was cancelled. Once he was able to get some treatment, he opted for radiotherapy alone because he thought it would be more aggressive. They were also able to operate, but they could only take some of the tumour out. That left him with some weakness down his more dominant right-hand side, so he had to step back a bit from his work as a stonemason which was a job he loved.
His health deteriorated last year, and he had to move into St Andrew’s Hospice until he was able to get what he needed at home in order to be cared for there which is what he wanted. Sadly, he died in February 2024. He was only 56 years old; losing someone so young with so much of a future ahead of him, leaving his wife and two kids behind, was another devastating blow.
“When I hear about brain tumours, or I know of someone who has been diagnosed, I know what the impact is, that they’re incurable, and that there is no hope for them. It’s very sad.”
There is so little funding or brain tumours which is disgraceful. So much more needs to be done to research this cruel disease. Nobody knows why this is happening to our family and others over and over again. There are no answers because nobody knows why, so it’s vital we have the funding for this research to happen and for breakthroughs to be made.
Claire Cordiner
June 2024
Brain tumours are indiscriminate; they can affect anyone at any age. What’s more, they kill more children and adults under the age of 40 than any other cancer... yet historically just 1% of the national spend on cancer research has been allocated to this devastating disease.
Brain Tumour Research is determined to change this.
If you have been touched by Claire’s story, you may like to make a donation via www.braintumourresearch.org/donation/donate-now or leave a gift in your will via www.braintumourresearch.org/legacy
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