In Our Hearts Stories
Less than 20% of those diagnosed with a brain tumour survive beyond five years
Alex Wilson, a lorry driver and father-of-one from Enniskillen in Northern Ireland, was diagnosed with an aggressive, grade 4 brain tumour in June 2018. He went through two brain surgeries, radiotherapy and chemotherapy but succumbed to this terrible disease in February 2021, aged 31. Alex left behind a loving family, including his wife Jade and seven-year-old son, Ryan.
Alex’s widow Jade tells his story…
It all began in May 2018. Alex and I were sitting on the sofa one night, when I repositioned myself, as I’d got pins and needles in my arm. I mentioned it to Alex and this prompted him to tell me that he’d also experienced a pins and needles sensation in his left arm while he was driving the lorry earlier that day. We didn’t think anything of it at the time but a couple of weeks later, he had the same feeling in his left arm when we were at his mum’s house one evening. I encouraged him to go to the GP, which he reluctantly agreed to. When he explained the odd tingling he’d had, the GP thought it might be a trapped nerve in his shoulder. By now, however, Alex was also having a few headaches, which were treatable with pain killers but the doctor thought it was worth getting his eyes tested. He thought he might need glasses, as he spent a lot of time driving long distances. But when Alex went to the optician, they said his vision was fine.
Two days later, however, we were out for a walk and I had to pop into my workplace, the jeweller H. Samuel, when Alex started to feel unwell. He had to sit down in the shop, complaining of a bad headache. We went home and after he’d taken some headache tablets, he felt fine. Later on, though, we were eating dinner when Alex dropped his cutlery and couldn’t work out how to pick it up again with his left hand. He physically couldn’t do it. I said he needed to go to hospital. He disagreed but we compromised and I rang the out-of-hours doctor.
“The medic advised us to go straight to our local A&E at South West Acute Hospital in Enniskillen. A nurse did some routine tests, checking Alex’s blood pressure and pulse and everything seemed to be fine.”
He was then sent to the stroke unit but they quickly assessed that he hadn’t had a stroke. We were left waiting for a long time to be seen by a consultant and eventually, at 2am the next day, I decided to head home, as I was accompanying our son Ryan on a school trip later that day. Alex was finally discharged at 4am and his mum went to pick him up.
The following morning, Alex had to go back in for a CT scan. As he was feeling much better, he said he was OK to go on his own, so I went off on the school trip with Ryan, as planned. When Alex got to the front desk in the hospital, he was told there’d been a mistake and nobody had booked him in for the scan. At that moment, he got a sudden feeling that blood was rushing down his left arm and he insisted he needed to be scanned as soon as possible. Alex was told he’d have to wait a while for the scan and as he waited, he began to feel really unwell. Another patient in the waiting room saw how ill Alex looked and encouraged the nurses to fast-track him through. A nurse came with a wheelchair to get him and he was finally scanned.
Afterwards, a doctor came to see him and asked: ‘are you OK to hear the results on your own?’. Alex said it was fine. The doctor then delivered the shocking news that they’d found a big ‘mass’ on his brain. He said it was 5.8cm in size. He didn’t use the word ‘tumour’ but reading between the lines, Alex guessed that’s what it was. The doctor said he’d need to be referred quickly to The Royal Victoria Hospital in Belfast. Not wanting to contact me while I was on the school trip, Alex held off telling me what was going on and instead contacted his mum and sister. As the coach pulled up at the school to drop us off at the end of the day, a teacher came to find me and Ryan and said we were to get off the bus first.
“My mother-in-law was there waiting to tell me the devastating news that Alex had been diagnosed with a brain tumour.”
My great aunt was diagnosed with a glioblastoma multiforme (GBM) 11 years ago. She only lived for eight months after her diagnosis. When I heard the words ‘brain tumour’, I immediately thought the worse and assumed this meant Alex only had months to live. I called my mum but was so upset, I couldn’t get my words out.
Less than a week later, we were at The Royal in Belfast for an appointment with neurosurgeon Dr Tom Flannery. He was fantastic and really put us at ease. He explained that Alex would need an awake craniotomy, to try to debulk the tumour.
“He was very upfront and said the tumour looked to be high-grade and very aggressive but that they wouldn’t know for certain until they performed a biopsy.”
Alex’s surgery was on 18 June 2018. The four-and-a-half-hour procedure went well and I was overcome with relief when I got the phone call from Dr Flannery to say Alex was out of theatre and that there’d been no complications. He recovered well too and after just two days in hospital, he was walking, talking and feeling fit and strong enough to be discharged.
“A week later, we were back in Belfast to receive the histology results. That’s when my worst fears were confirmed; Alex had a grade 4 GBM, the same tumour-type as my great aunt.”
I felt completely broken but Alex’s strength rubbed off on me and I managed to hold it together. We both knew we would have to stay strong for Ryan as well. Dr Flannery pleaded with us not to turn to Google for information. He said the statistics would tell us that Alex’s prognosis was a stark 12-18 months but that lots of patients defy the odds and Alex had his young age and otherwise good health on his side. We took his advice and set out on a mission to remain calm and positive.
The next appointment we had was with oncologist Dr David Conkey. He talked us through the next steps, which would be the standard six-week course of chemo-radiation at City Hospital in Belfast. Following the radiotherapy, he would continue on a six-month course of Temozolomide (TMZ), the most frequently used chemotherapy drug for brain tumours. Even though the treatment regime meant a lot of travelling between Enniskillen and Belfast (a three-hour round-trip), Alex coped really well.
When Alex got his brain tumour diagnosis, we were already engaged to be married in October 2018. The wedding was all planned and paid for – a ceremony at Garvary Church, followed by a reception at Manor House Country Hotel on the shores of Lower Lough Erne, near Enniskillen. Alex’s treatment meant his immune system was compromised and so, for some time, we weren’t sure if the wedding would go ahead. In the end, we were thrilled that we could marry, as planned. We had a fantastic day; Alex was in good spirits and looked so well. You would never have guessed he was living with a terminal illness. Unfortunately, we couldn’t go to America for the honeymoon we’d planned, as Alex couldn’t afford to interrupt his treatment. We wouldn’t have been able to get travel insurance, in any case.
“Alex was scanned every three months, to monitor his disease. Sadly, those scans never seemed to yield good news.”
In spring 2019, the scans revealed that the tumour was growing back. Having coped really well with the TMZ chemotherapy, Alex was put on a different regime this time, PCV triple therapy, which is a combination of procarbazine, CCNU (lomustine) and vincristine. The procarbazine and lomustine were given in capsule form, whilst the vincristine was given via a drip into his arm. Unfortunately, Alex found this chemo a lot tougher. He suffered from much worse side effects, which seemed to get more severe as time went on. He was vomiting, in spite of the anti-sickness tablets and his energy levels were really low. Somehow, he managed to retain an amazingly positive attitude, remaining mentally strong throughout.
“He kept saying that he was going to beat it. He was a fighter and that fighting spirit helped to keep the rest of us going.”
Alex’s PCV treatment finished in October 2019. He had his post-treatment scan the following month and we were given the results at the beginning of February 2020. To our huge disappointment, the results revealed more regrowth. We were under the impression that if the PCV hadn’t worked, we wouldn’t have any more options available. However, the amazing Dr Conkey wasn’t ready to give up on Alex and he suggested another craniotomy, to remove more of the tumour. Of course, Alex agreed, desperate to try anything to prolong his life.
Alex’s second brain surgery was on 10 February 2020. This time, he didn’t need to be awake. It was another four-hour procedure, which went well, but his recovery immediately after the operation was slower. He was more confused and drowsier this time but amazingly, was once again discharged after just two days in hospital.
Following surgery, Alex had had another course of radiotherapy, which they managed to fit in just before the country went into lockdown, as the COVID-19 pandemic hit the UK. By the summer, Alex’s tumour was growing again and his team put him back on TMZ. This time, the cancer treatment knocked him for six. He was weak and tired and it was awful to see him suffering. He had another scan in September 2020 and we went to get the results the following month. By this point, Alex had started to lose his balance and was experiencing vision problems. I think I knew deep down that the results were going to be bad but I was desperately hoping for a miracle.
“It was at that appointment that they said they were sorry but there was nothing more they could do. The scan images showed massive change from the previous scan.”
I broke down crying. Alex just sat there, he put his hand on my leg and he apologised for not being upset. He said he knew it was coming. We’d both been waiting for this but, for me, that didn’t make it any easier.
We moved into my mother-in-law’s bungalow, as it was much better suited to providing Alex with the palliative care he needed. Slowly, I noticed more and more changes in him. On 25 November 2020, he seemed particularly unwell. He was agitated, sweating, and having what appeared to be nightmares even when he was awake. It was a Wednesday and when the palliative care nurse saw the state he was in, she said she didn’t think he’d make it to the weekend. We spent as much time with him as we could, preparing ourselves for his imminent death. However, he went on to live another 12 weeks.
We were dreading Christmas, in case we lost him during that period but he held on. Obviously, it was a very different Christmas to the joyful family occasions we were used to. Alex was bed-ridden and couldn’t be with Ryan when he opened his stocking presents, so Ryan took them in to show his dad. Alex couldn’t go to the toilet or feed himself by this point. I fed him his turkey dinner.
“There was also the deep sadness, knowing that this would be our last Christmas together as a family-of-three.”
Towards the end, we were told to look out for certain signs that he was dying. The nurses said he would probably stop eating and drinking and that he’d slowly slip away. In actual fact, that’s not how it happened. On 9 February 2021, he was up, eating and drinking. All of a sudden, his voice became very croaky. I asked if there was something stuck in his throat, as he shook his head to signal, ‘no’. The crackling noise in his throat persisted and the palliative nurse came out to see him. She didn’t think he was near the end. At 3am the next day, however, my mother-in-law came in to wake me. We used to take it in turns to do the ‘night shift’ looking after Alex and she’d been with him when she noticed he was deteriorating quickly. The nurses came out again and this time they agreed that things weren’t good. I looked at his hand and it was blue. One of the nurses took me outside and said it was time. She told me to ring whoever I needed to. I stayed with Alex for the rest of the night. He stayed awake, not wanting to fall asleep.
I rang the GP at 9am and said I thought he was dying. The doctor, who’d been brilliant throughout Alex’s illness, came out and confirmed he was at the very end of his life but reassured me that he would go calmly and peacefully. I sat with him for the whole morning. After a few hours, I popped out of the room to make a quick phone call to my mum. Within minutes, my sister-in-law’s husband came to get me to say I needed to be with Alex. By the time I got back to the room where he was, he was gone. I hadn’t been with him when he took his final breath but he was surrounded by loved ones: Ryan, his mum Kim, dad Mark, brother Thomas, sister Emma, brother-in-law Barry and his aunty Wendy.
Our wee boy Ryan has been amazing and coped so well with the loss of his daddy. With lockdown and school closures, he’d very much been a part of his dad’s illness and was aware of Alex’s tragic fate. I told him that Daddy was poorly and that he was going to go to heaven. Ryan is a tower of strength and has helped me enormously cope with my own grief.
I actually think that I did a lot of grieving from the start. The minute he was diagnosed, I felt as though I was gradually losing him.
“Now that he has passed, it’s not exactly relief but knowing he’s not suffering any more gives me great comfort.”
Through my own dreadful experience, I’ve become all too aware that more needs to be done to help find a cure for this cruel disease. Research into brain tumours is drastically underfunded. More funding could save so many lives and help prevent brain tumour patients like Alex from dying at such a young age. It’s the biggest cancer killer of children and adults under the age of 40. We cannot allow this terrible situation to continue.
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.
If you have been touched by Alex’s tragic story, you may like to make a donation via www.braintumourresearch.org/donate or leave a gift in your will via www.braintumourresearch.org/legacy
Together we will find a cure