Nigel Downey
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Fear of brain tumour returning never fades
By Amy TaylorDecember 24, 2012
FOR anyone who has lived through a brain tumour, they will know that the fear of the tumour one day returning will never go away.
So says Nigel Downey, who in 2009 had a tumour the size of a satsuma removed from his brain, where it had been growing, undetected, for as long as 15 years.
Nigel, from Camberley, saw his GP several times over a period of five months after suffering from eye twitching, an upturned mouth and swelling in his face before being diagnosed at Frimley Park Hospital with a benign brain tumour.
The fifth week of the News & Mail's Christmas appeal to raise funds for The Brain Tumour Charity is focusing on Nigel's recovery and subsequent campaigning.
“If we had left it any longer, in a couple of years it would have wedged itself around my brain,” he said.
“My brain had moved over to accommodate this tumour.”
The fact it was not a cancerous tumour made no difference to the danger it posed.
Despite being spared chemotherapy, the pressure on Nigel’s brain was causing his body to fail.
“If it had continued to grow unchecked it would have joined up with my brain, which makes it more complicated to see which bits of my brain are the bad bits and which are the good,” he said.
“The doctors thought I was having mini strokes based on what my wife told them about my symptoms.
“I had problems with my vision and my balance, I felt unsafe going downstairs.”
In August 2009, aged 54, Nigel was kept in hospital for two weeks while being tested every four hours, before a bed became available at St George’s hospital in Tooting, South West London, where surgeons performed specialist brain surgery.
Since having the tumour removed, and being downgraded to a less frequent check-up schedule, Nigel decided to make a few changes to his life.
An accountant by trade, he left his job as the financial director of a company and is now the vice chairman of Camberley Citizen’s Advice Bureau.
He runs business events with GCSE students in Surrey and volunteers with The Brain Tumour Charity, even lobbying parliament to direct more resources towards the disease.
“We really have to try and increase the awareness of brain tumours among key decision makers in the country,” he said.
“We are fortunate, if that’s the right word, that there are two ministers who have been in government who have had brain tumours, so they have been very positive about our campaign. Helpfully, one is a Conservative and one is Labour, so they are on both sides of the spectrum.”
For Nigel, the most frightening part of his ordeal was that the tumour had been growing in his brain for between five and 15 years, and it had taken five months of severe stroke-like symptoms before anything other than painkillers were prescribed.
“We have no idea what causes it and that’s the problem. There are so many unanswered questions,” he added.
“Nobody can explain what the original cause is so there is lots of research needed into that. For people under 40, brain tumours are the biggest killer, so it needs to be up there on the agenda.”
Nigel said he felt generally positive now the tumour had been removed but the recovery came with an ‘inbuilt fear’ that it might come back.
“I can’t explain what went on before so there is always the fear it could happen again.”
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