In Our Hearts Stories
Less than 20% of those diagnosed with a brain tumour survive beyond five years
Alex Pendleton was diagnosed with a brain tumour, later identified as a glioblastoma (GBM), in March 2021 after experiencing slurred speech and severe confusion. He had also been feeling sick and experiencing a strange sense of smell and taste, but he initially attributed these to possible symptoms of COVID-19. Alex, from Stotfold, Bedfordshire, had a biopsy followed by radiotherapy and chemotherapy, before spending 17 months on various chemo drugs. His treatment came to end following the growth of a second tumour and after a critically low platelet count prevented him, despite a transfusion, from continuing with chemo. He died in a hospice in June 2023, aged 42.
Here is Alex’s story, as told by his wife Sarah …
Alex loved golf and had been working at a golf club when lockdown hit and they were forced to close. After that he took on projects at home and was building a deck in our garden when he became unwell. He woke up one morning towards the beginning of March 2021 saying he felt sick, which wasn’t like him. Then when he came downstairs, he said he had a funny sense of smell, and his taste was also off. He’d driven me to a hospital appointment the day before and we thought he could have caught COVID-19, but then he also started slurring his speech. As it got worse, I called for an ambulance.
“By the time the paramedics arrived, Al was so confused he didn’t know his date of birth, our home address or even what year we were in.”
He was admitted to Lister Hospital, in Hertfordshire, where, despite initial concerns he may have banged his head, ultimately we were told he had a 1.4cm brain tumour on his left temporal lobe. Alex was kept in for four days and given steroids to reduce the swelling in his brain. In mid-March, he went for a biopsy at the National Hospital for Neurology and Neurosurgery (NHNN) in Queen’s Square, London, and at the end of the month is when he got a phone call informing him he had a glioblastoma (GBM). There had been no mention of cancer before that and Al cried his eyes out.
“I thought he’d have his tumour taken out and we’d be able to go about our lives again, so learning he had brain cancer knocked us for six.”
His next course of treatment involved six weeks of radiotherapy at the Mount Vernon Hospital in Northwood and temozolomide (TMZ) chemotherapy, which he was able to take at home. He coped with it all really well, and the six months of TMZ that followed. Looking at him you wouldn’t have known he was on treatment. He didn’t like the radiotherapy mask because his face had started to swell from the steroids he was taking, making it really tight, but he didn’t complain about anything else. He handled it all amazingly well. We still went out for walks and he continued doing everything he had before.
In December, a scan showed his tumour was stable and, although his next one in around February 2022 showed the same, it also revealed another tumour at the back of his brain. Al was put on a combination of chemo drugs, procarbazine, lomustine and vincristine (PCV), which were administered through tablets and infusions. He had occasional sickness but a stranger looking at him wouldn’t have known he was unwell. In January 2023, after about eight rounds of PCV, a scan showed growth in both his tumours.
“By then we were used to getting good news about his original tumour, so it came as quite a shock.”
Al started deteriorating after that and was frequently in and out of A&E. He’d become confused and start slurring his words again and the doctors would have to increase his steroids. The plan had been to continue him on the PCV but, after another couple of rounds, a scan in April showed continued disease progression. That’s when he started yet another chemo drug, carboplatin, which he did not respond well to. After just one cycle, he started having problems with his platelet count. He needed to have more than 100,000 platelets per microliter of blood to have chemo so, when his dropped to just 10,000, he needed a platelet transfusion. Even with this, it didn’t go above 66,000.
He lost the use of his right side and wouldn’t be able to feel me holding his hand. His walking became severely impaired and getting up and down stairs became a big issue. He’d also complain of feeling dizzy. When we met with the oncology team at the beginning of June, they said they didn’t think he was clinically well enough for further treatment.
“Having witnessed his decline, I feared that’s what they would say but it was heartbreaking to hear.”
A palliative care team was in place when we went home but, after a few days, a nurse asked if I wanted Al to be moved to a hospice. I said yes, because he was getting increasingly difficult to look after and I wanted the best for him. He spent six days in the Sue Ryder St John's Hospice in Moggerhanger before passing away on 22 June. He was only 42. It was four days after my 33rd birthday and just seven days before our fifth wedding anniversary.
“Knowing the average prognosis for GBM is 12-18 months makes me even more appreciative of the time I got with Al, more than two years from diagnosis.”
It’s only when someone you love is affected by this disease that you realise how common it is, which is why I feel it’s important to help raise awareness of it now. If sharing Al’s story can help even one other family, I know that would make him proud, and us proud of him.
Alex didn’t drink or smoke, and he loved golf so was always fairly active. His death shocked people who couldn’t believe someone as healthy as him could have a disease like this, which snowballed from waking up one day feeling a bit sick. I’m still in disbelief to be honest, and so sad.
“It’s been a really difficult journey and knowing how common it is and how the treatment for it hasn’t changed in decades makes it all the more awful.”
It sounds cliché but Alex was the nicest person you could ever meet, and so thoughtful. He had a heart of gold and would do anything for anyone. He was a really positive person to be around, even throughout his illness, and I feel very lucky to have known him. We started dating in 2014 and had nine years together.
“They were the best nine years of my life – I couldn’t have asked for a better man.”
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.
Together we will find a cure.