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In Our Hearts Stories

Less than 20% of those diagnosed with a brain tumour survive beyond five years

Alan Neilson

Father-of-three Alan, from Portsmouth, was known for his sense of humour, always making people around him laugh. For years he suffered with debilitating migraines. In May, 2011 he developed major muscle spasms. A CT scan at Queen Alexandra in Portsmouth detected an anomaly on his brain. Alan was diagnosed with an inoperable glioblastoma (GBM) and had multiple rounds of radiotherapy and chemotherapy treatment alongside a trial drug. He outlived his two-year prognosis, surviving four years after he was initially diagnosed. Alan died on 26 November 2015, aged 47.

Here is Alan’s story, as told by his wife, Theresa …

Shortly after Alan was diagnosed with the brain tumour, we went on a cruise together to celebrate our 25th wedding anniversary on 6 August 2013. Although we both went to the same school, it wasn’t until sometime after leaving, we got together.

Alan had suffered with painful migraines for years, overcoming the trauma of a suspected thyroid cancer diagnosis in 2008. Once he'd had half of the mass removed, to be told it wasn’t cancerous was bad enough, but when Alan was told he needed to be on life-long medication because of this, it was a shock for him. But Alan being Alan, he took this in his stride and made light of it.

Despite everything he went through in life, he kept his warped sense of humour. Something that is apparent when reading back through the Facebook posts he wrote during the first couple of years after he was diagnosed

As well as the migraines, in 2011, Alan had a spasm in one of his arms and legs. I was on a course at the time and rushed home as soon as he got through to me on the phone. He described the spasms in the Facebook post by saying: “I’m not a musical man, so when I woke up one day in May 2011 doing the Riverdance I knew I had a problem.”

He was rushed for a CT scan at Queen Alexandra Hospital in Portsmouth which showed two lesions on his brain. Alan had a biopsy and on initial examination we were told it looked suspicious.

Results confirmed Alan had a grade 4 glioblastoma (GBM) brain tumour and he was given a maximum of two years to live. In that moment I felt numb.

“Alan’s personality changed as side effect of the tumour. Although he was never a quiet person, he was cheerful and upbeat – always positive. His moods seemed to become less tolerant and he became angry easily.”

Professor Geoff Pilkington at the then Brain Tumour Research Centre of Excellence at the University of Portsmouth suggested Alan for a drugs trial and he was placed on anti-depressants. Although this isn't typically used these days research back then showed it shrunk tumours as well as lifting depression so it helped Alan all round. 

We never found out if it was the trial drug alone, which was responsible for this or if it was a combination with the radiotherapy and chemotherapy he had as part of the NHS standard of care.

“Radiotherapy was traumatic and caused Alan to have a panic attack as the mask needed to fit tight around his face. However, scans showed the tumours were shrinking.”

Alan continued to share his story on Facebook, in 2013 writing: “two years they said I would survive, but as you can see I’m still here. Dizzy at times but still here.”

On the two year anniversary Alan attended a wellbeing course at the local hospice to learn relaxation techniques and meet people in a similar situation to him.

In January 2015, a routine scan showed new tumours close to the cerebrum and a biopsy was too dangerous The consultant had little choice but to assume these growths were GBM and Alan had more radiotherapy and chemo. However, this had no effect on the cancer.

When Alan lost his ability to talk, alongside one of our daughter’s we taught him how to communicate through Makaton sign language.

Alan outlived the two year prognosis he was given when he was diagnosed. From 2011 to 2015 he battled so bravely with his GBM. He hung on to see his youngest and only son turn 18 on 14 November 2015. During the last days of his life, we all slept in the same room with Alan at Rowans Hospice in Waterlooville.

Alan died on 26 November 2015, aged 47.

In his final post he wrote: “Every human being is going to die, I know that. But knowing you have a tumour/cancer does make it different. A healthy 46 year old does not think about death every day, he doesn’t wonder if he will still be alive to see his children grow up and he can plan for the future with some certainty that he will still be living.”

He continued: “Anyway, that’s my story so far, I will carry on working and living, striving to get to the next birthday, holiday or special event. Also I need to get the most out of my bus pass which has recently been extended to the year 2019.”

Alan was so proud of his children. Both girls have followed a career in science, with Alice completing work experience at the Brain Tumour Research Centre of Excellence in Portsmouth. Matt followed in his father’s footsteps, completing an engineering apprenticeship which led into a degree whilst working at Airbus, where Alan used to work.

Alan was a pillar of the community and has since inspired various fundraising activities for Brain Tumour Research. Inspiring thousands of pounds so far.

We have been fundraising alongside our dear friend, Simon Tier for more than a decade. They were both each other’s best-men and as well as Simon being godfather to our three children, Alan was godfather to Simon’s son and daughter. We spent time together as a four in our married couples with Simon and Alan enjoying more than 30 years of friendship.

They were school friends, colleagues and very much like brothers, both with a similarly dark sense of humour but Alan was the funny one.

In 2016, Simon set up the Isle of Wight Randonnée which takes place annually in July. With the event, he wanted to encourage people to come together to raise awareness and funds – saying it’s more than about remembering Alan, it’s about creating hope for those in the same circumstances now and in the future.

Simon has been an incredible support and seems to have made it his life mission to make sure that other people don’t go through the pain and heartache of losing a loved one to this disease.

This year, our son, Matt will be taking part in a 36-mile distance within 12 hours up and down the mountainous range of Snowdonia in Wales, which he is planning to do after cycling in the Randonnée.

I am so proud of our children for the support they gave me when they were grieving themselves. Matt especially has pushed himself physically and mentally, taking on a variety of adrenaline and endurance fundraising challenges. He always said if Dad could do all that (diagnosis, and treatment) then he can run marathons, triathlons and iron man events for Brain Tumour Research.

Alan’s legacy isn’t only raising three children who have go on to become wonderful adults and making people laugh, he did always and still continues to bring a community of people together. In turn, hopefully making it easier for future generations that are unfortunate to encounter the disease to deal with their diagnosis.

Theresa Neilson
March 2023

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.

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