Father-of-two Andy, from Blofield, Norwich, was diagnosed with a glioblastoma (GBM) in April 2020 following severe headaches and hearing repetitive noises in his head. A self-professed workaholic in the motor trade industry, the 39 year old later joined the family building business after undergoing an operation followed by radiotherapy and chemotherapy. Around Christmas 2021, his cancer returned, this time inoperable. Andy was fortunate to be able to fund private care in London, using repurposed drugs to try and extend his life alongside a personalised treatment produced by a clinic in Germany. However, his tumour continued to grow, and he died on 30 December 2022.
Here is Andy’s story, as told by his wife, Laura…
The first time Andy experienced a severe pain in his head, he went to the GP who put it down to a migraine, they advised as he would be turning 40 soon some people can start to suffer with these.
Andy only ever had two bad headaches before he was diagnosed with a brain tumour, the second of which occurred three weeks later. This time he heard repetitive sounds in his head which he described as humming.
We would be out walking when Andy heard a noise once and it seemed to echo in his head for some time after.
His symptoms weren’t going away and seemed to be getting worse. The GP sent him for an MRI scan at Norfolk & Norwich University Hospital during Easter weekend in 2020.The following Tuesday, we had a call from the doctor to say there was an anomaly on Andy’s scan, possibly a tumour which they were 90% sure was cancer.
He was referred to Addenbrookes Hospital in Cambridge and within five days of receiving the news of a brain tumour, Andy had a nine-hour operation to remove the mass.
Andy was home a day later, on 21 April – his 39th birthday, with temporarily minor vision loss in his left eye which came back as he recovered from surgery.
Doctors told us the name of the tumour, a glioblastoma (GBM) wildtype, neither of us had a clue what that was and didn’t know what that meant for further medical intervention.
Staff were sympathetic. They used words such as ‘life-limiting’ and were sensitive as to not give a prognosis of time but told us there was no cure for this disease.
Andy’s NHS standard of care was moved to the Colney Centre at Norfolk & Norwich which is when I investigated GBM online and read into the stats which weren’t great. He had six weeks of radiotherapy and temozolomide (TMZ) chemo which he was on for six months. He started experiencing strange smells and a taste in his mouth – a side effect of treatment, which we later found out was a focal seizure. He was placed on keppra to manage this.
Andy was a workaholic and was never one to sit still during his life. Having to slow down was a real struggle. His diagnosis meant he was no longer allowed to drive but he found work at the family building site close to where we lived. This became something for him to focus on during his treatment. He worked between cycles of treatment whenever he could. It helped him stay positive, especially on those dark ‘down’ days which inevitably everyone has on this journey.
“He finished NHS treatment in April 2021 and for the rest of that year remained stable and well.”
In early January 2022, having displayed no symptoms, we had a call that delivered a huge shock. Andy’s tumour had regrown.
He shut down when he heard the news. The consultant told us our options, the success rate of which held a very slim percentage, leading us to explore private alternatives.
We were very fortunate for Andy to receive paid for treatment in London which he started in May. It was a concoction of radiotherapy, repurposed drugs and chemotherapy. The consultant at the London clinic recommended Andy for a personalised drug produced by a clinic in Germany called CeGaT.
With a sample of Andy’s tumour transported to Germany, CeGaT developed a personalised treatment which would be administered in the UK which was supposed to have the best compatibility to affect the tumour.
“We hoped that the multi-pronged approach would help keep Andy’s tumour at bay for a lot longer and, even better, shrink it.”
Due to delays, Andy managed to have one round before he became too unwell to travel.
As it was personalised for Andy there was no data on the effectiveness of the drug recommended. Had this treatment been available in the UK we would have access to research and how it has worked for other brain tumour patients. This would mean that we wouldn’t have had to spend time and money on seeking treatment abroad.
Tumours such as GBM are extremely fast growing, and the patients don’t have time to wait months for answers and treatment plans.
In November 2022, all treatment ceased. What more could I do to save my husband? Our girls, who were 15 and 13 at the time, saw their dad change physically and soon became aware that he wasn’t getting any better. It’s a parent’s worst nightmare to have to sit down with your children and explain that there is nothing that can save their dad and our life as a family of four was about to be ripped apart by this awful disease.
When you find out the NHS treatment hasn’t changed for years, how can we expect the outcome to improve?
Andy died at home on 30 December 2022.
From my own research it became clear that other countries are offering options, giving hope to brain tumour patients and their families. But these come at extortionate costs. It feels like a lottery with the NHS treatment. We must invest in research here in the UK if we are to find kinder treatments and eventually a cure for this disease.
Laura Rose
July 2024
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 since records began in 2002.
Brain Tumour Research is determined to change this.
If you have been touched by Andy’s 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
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