In Our Hearts Stories
Less than 20% of those diagnosed with a brain tumour survive beyond five years
After struggling to walk and feed himself and thinking he might have experienced a mini-stroke, Terry was diagnosed with a glioblastoma (GBM). After putting his affairs in order, Terry got married to his long term partner before having surgery and treatment. He died 17 months after his diagnosis.
Here is Terry’s story as told by his wife Deirdre…
The first indication that Terry was ill was when he started having really bad headaches a few weeks before we were due to go on holiday to Gran Canaria in April 2019. He had never been prone to them before and very rarely took pain relief, but he was taking aspirin and paracetamol then. He wouldn’t go to the doctor, putting the headaches down to stress at work.
Alarmingly, when we were away on holiday, he started dragging his leg and having trouble cutting his food and putting it into his mouth. I thought he might have had a mini-stroke and tried to get him to go to a doctor, but he insisted on waiting until we got home so that he could see his own GP.
On our return to Scotland, Terry was sent for a CT scan which found something in his brain. It was such a shock but, at first, we were hopeful it could be treated. A week later he had an MRI and then the results were discussed by a multi-disciplinary team.
Most of those attending agreed that his brain tumour was a glioblastoma (GBM) which wasn’t worth operating on due to its position, Terry’s age, and the prognosis. Thankfully, the surgeon wanted to give him a chance.
Terry was 54 and pretty fit – he ran marathons, cycled, played golf, and had a physical job working for the local council, looking after football pitches and tending open spaces around Fife.
We met with the surgeon at the Western General Hospital in Edinburgh. He went into detail about the tumour, and told us about the various treatment options and timescales. I thought I was mishearing him and asked him to repeat himself. I’m afraid I swore and then burst out crying. Terry was silent at first, then tried to comfort me.
“I was so grateful that the neurosurgeon refused to write Terry off and fought to give him a chance. He told us that, without intervention, Terry had a survival prognosis of three months which would increase to six if he had a biopsy and chemotherapy, and 12 to 18 months if he had the standard treatment of surgery, radiotherapy and chemotherapy.”
He went into detail about the operation using a small model of a brain which he took apart to show the different areas. When he couldn’t get it back together again, Terry said: “Well, I hope you’re better with the real thing!” and we all burst out laughing. He decided to go ahead with the standard treatment and was given a date for the operation.
We broke the news to our respective families on our return from the hospital. In the time leading up to his craniotomy, Terry wanted to get his affairs in order. He was determined to leave everything ‘just so’ for me in case he didn’t survive the operation. He was so strong and brave and sorted out his funeral plan, updated his will, and gave me power of attorney in case he became incapacitated.
We had been together for 25 years, but never married. Terry was adamant that had to change. In the space of two weeks, we managed to organise our wedding which took place on Friday 31 May 2019 at the local library in Methil, after receiving special permission from the registrar general in Edinburgh to waive the required period of notice, with only two witnesses – Terry’s brother, Thomas and my best friend, Joyce. After we’d taken some photos on our mobile phones, we returned home alone, had some bubbly and went for a meal at a local hotel.
On Monday 3 June 2019, Terry’s operation went ahead at the Western General Hospital. He walked down to the operating theatre at 8am and, eight hours later, I visited him in ICU – it was so frightening seeing his head bandaged and the bruising quickly spreading down his face. The following day, he was up and out of bed and then discharged home on Wednesday. Terry was left with some weakness in his left arm and leg, but the surgeon had managed to remove 90% of the tumour, although couldn’t go any further for fear of leaving Terry paralysed. Nevertheless, Terry was able to play golf and cycle for quite a few months afterwards, once he had recovered from the actual operation.
He underwent radiotherapy and chemotherapy which took a lot out of him. Sometimes he didn’t want to go for his treatment, knowing what was going to happen, but he went every time. Occasionally he felt so ill he would have to lie down on the back seat of the car on the way home and just close his eyes.
He was also taking part in a clinical trial, saying: ‘if it helps one person in the future, I’m in’, even though he knew it probably wouldn’t be of any benefit to him. Sadly, he had to stop because the medication he was trialling was affecting his liver quite badly.
Life seemed to be getting back to more like normal and we were getting ready to return to Gran Canaria in April 2020 to celebrate our birthdays. Sadly, the UK went into lockdown because of the COVID-19 pandemic, so that holiday never materialised. However, shortly after, Terry started to deteriorate; he was struggling to walk and dragging his leg again and also losing more feeling in his arm.
Terry was having monthly MRI scans.
“When we went to see his oncologist in May 2020, she told us the tumour had started to grow so Terry was going to be given a different type of chemo. Just two months later, we were given the devastating news that the chemo wasn’t working and that Terry was being put on palliative care.”
There was no way he was going into a hospice; because of the COVID rules at the time, he would only have been allowed one nominated visitor, so we decided he would stay at home so that family could visit.
After a couple of falls at home, his Macmillan nurse arranged for him to be examined at Victoria Hospital in Kirkcaldy. He ended up being there for a week, but because of the pandemic I couldn’t visit and we had to make do with FaceTiming. He came home in a wheelchair and never walked again. Our home was taken over by all the equipment required to care for him.
Terry died in my arms at home on 7 September 2020. He had been given a prognosis of 12 to 18 months and survived for 17 months.
“A friend’s husband died of the same type of brain tumour as Terry, but 10 years previously and knowing that treatments hadn’t changed in that time, nor had survival improved, made me feel very angry.”
On top of that, I now know of two more local men who have died from a GBM recently.
Because of COVID, we were only allowed to have 20 people at the crematorium for Terry’s funeral, and his brothers weren’t allowed to carry his coffin. However, it was very humbling to find the route to the crem lined with people who knew Terry, including friends from his golf and running clubs, and his colleagues from the council – all clapping him on his last journey. He would have been so embarrassed.
I set up a Much Loved page to raise funds for Brain Tumour Research in Terry’s memory, which now has more than £7,000 in donations, including regular ones from me on birthdays, anniversaries and at Christmas.
I want people to know about Terry and don’t want his death to count for nothing. I am very grateful to his brother and friends who, each year around his anniversary, play for the Terry Cullen Memorial Trophy at Leven Thistle Golf Club. It’s a great way to remember him. And they always raise a few glasses to Terry at the 19th hole – which was always one of his best and most loved!
Last month I visited Brain Tumour Research’s Centre of Excellence at Queen Mary University of London to place tiles on the Wall of Hope in memory of Terry. It was an emotional day, made even more poignant because the date of the lab tour fell on our fourth wedding anniversary – 31 May.
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 just 1% of the national spend on cancer research has been allocated to this devastating disease.
Brain Tumour Research is determined to change this.
Together we will find a cure