Young mum Jade’s heartbreak at losing husband to brain cancer

Jade Wilson’s husband Alex died from an aggressive brain tumour three months ago, leaving behind Jade and their seven-year-old son Ryan.

“It all began in May 2018 when Alex started to experience a pins and needles sensation in his left arm,” said Jade. The GP thought it might be a trapped nerve in his shoulder. Alex also started to get headaches, so he was advised to get his eyes tested. But when he went to the optician, they said his vision was fine.

“A couple of days later, we were at home 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. We went to 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.”

Alex was discharged at 4am the next day and asked to come back later on for a CT scan.

Jade said: “I was going on a school trip with Ryan that day, and as Alex was feeling much better, he said not to cancel my plans, as he was happy to go back to hospital on his own.”

When he arrived at the hospital, however, Alex took a turn for the worse, experiencing the feeling of blood rushing down his left arm. He was fast-tracked through for his scan and afterwards, a doctor delivered the shocking news that they’d found a big ‘mass’ on his brain.

Jade said: “Alex didn’t want to upset me while I was with Ryan and his classmates on the trip, so he held off telling me what was going on, contacting his mum, Kim, and sister, Emma instead. As the coach pulled up at 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.”

Kim was waiting to tell Jade the devastating news that Alex had been diagnosed with a brain tumour, 5.8cm in size. He was referred to the neurology department at The Royal Victoria Hospital in Belfast.

Jade said: “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.”

On June 18, 2018, Alex underwent an awake craniotomy, to try to debulk the tumour. A week later, their worst fears were confirmed when the couple received the histology report, revealing Alex had a grade 4 GBM, the same tumour-type as Jade’s great aunt.

She said: “I felt completely broken but Alex’s strength rubbed off on me and I managed to hold it together. We had to stay strong for Ryan. Alex’s consultant, 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 age and otherwise good health on his side.”

The next stage of Alex’s treatment was a six-week course of chemo-radiation at City Hospital in Belfast. Following the radiotherapy, he continued on a six-month course of Temozolomide (TMZ) chemotherapy.

Jade said: “When Alex got his brain tumour diagnosis, we already had our wedding planned and paid for. 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 in October 2018, as planned. We had our ceremony at Garvary Church, followed by a reception at Manor House Country Hotel on the shores of Lower Lough Erne. It was a fantastic day; Alex was in good spirits and looked so well. You would never have guessed he was living with a terminal illness.”

Sadly, in spring 2019, the scans revealed that the tumour was growing back. Alex was put on PCV triple therapy chemotherapy, to try to control the spread of the disease.

Jade said: “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. Somehow, he retained an amazingly positive attitude, remaining mentally strong throughout. He was a fighter and that fighting spirit helped to keep the rest of us going.

Alex’s next scan results were at the beginning of February 2020. To their huge disappointment, the results revealed more regrowth.

Jade said: “We were under the impression that if the PCV hadn’t worked, we wouldn’t have any more options available. However, Alex’s fantastic oncologist, Dr Conkey, wasn’t ready to give up on Alex and he suggested another craniotomy, to remove more of the tumour.”

Alex’s second brain surgery was on 10 February 2020. Following surgery, he had another course of radiotherapy but by the summer, Alex’s tumour was growing again and his team put him back on TMZ.

Jade said: “This time, the 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.”

Devastatingly, the scan images showed massive change from Alex’s previous scan and he was told there was nothing more they could do to treat the disease.

Jade said: “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.”

The family moved into Jade’s mother-in-law’s bungalow, as it was better suited to providing Alex with palliative care. He died on 10 February 2021, surrounded by his loved ones.

Jade said: “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.

“Our wee boy Ryan has been amazing and coped so well with the loss of his daddy. With lockdown, 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.”

Through her own dreadful experience, Jade has become all too aware that more needs to be done to help find a cure for this cruel disease.

She said: “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 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.

Joe Woollcott, community development manager at Brain Tumour Research, said: “We were so very sorry to learn about the loss of Alex to this terrible disease. Our thoughts are Jade, Ryan and all of Alex’s loved ones, as they continue to try to come to terms with their bereavement.

“It’s really inspiring that Jade is sharing her story, to help raise awareness of the disease. Her experience reminds us that brain tumours are indiscriminate; they can affect anyone at any age. It is such a uniquely cruel disease and we are determined to continue in our mission to find a cure, to help prevent other families from suffering such a tragic loss.”

Brain Tumour Research funds sustainable research at dedicated centres in the UK. It also campaigns for the Government and the larger cancer charities to invest more in research into brain tumours in order to speed up new treatments for patients and, ultimately, to find a cure. The charity is calling for a national annual spend of £35 million in order to improve survival rates and patient outcomes in line with other cancers such as breast cancer and leukaemia and is also campaigning for greater repurposing of drugs.

To donate to Brain Tumour Research, please visit: https://www.braintumourresearch.org/donation