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Mum reveals what it is like to live in fear of her own brain tumou

By Charlotte Gosling From The Herald Plymouth

Sue was diagnosed with a brain tumour while on a family holiday to the Caribbean

A Plympton mum’s discovery of a brain tumour on a Caribbean holiday has led her to raise more than £6,000 for research into the illness to continue in the city.

Sue Frost was diagnosed with a brain tumour in July 2012 shortly after having a seizure on a family holiday to the Caribbean.
Despite the tumour being benign, the mum-of-two suffers from seizures every two to three weeks.

And the 47-year-old has lived in fear since the diagnosis that her tumour could one day become malignant.

In May of last year, Sue was given the worrying news by her doctor that her tumour had grown even further in size and had surgery to remove it.

Unfortunately surgeons were unable to remove the entire tumour during the first operation and so Sue will be returning to hospital in April to complete the procedure.

The Derriford Hospital nurse told The Herald that following a chance meeting with a fundraising officer for Brain Tumour Research she was inspired to take on the year-long challenge of raising the large amount the local lab need to stay open for just one day.

She has now raised double the amount she first expected to for the Plymouth laboratory of Brain Tumour Research, having held quizzes, cycling competitions and other sports events.

The money raised will be used to carry out research for two days in the city’s brain tumour research lab as it costs a whopping £1million a year to keep the this open and running.

One day of research costs an incredible £2,740 and so Sue has been awarded two tiles on the Wall of Hope in the laboratory for her contribution.

One tile pays thanks to family and friends who helped her raise the funds and the other to her late mum who lost her battle in 1995 to breast cancer which also left her with secondary cancer of the brain.

“It’s been a long journey,” she said, “but it was a really proud day and nice that something positive has come of my illness.”

Sue told The Herald how the next step of her journey began.

“A routine check up in April showed that my tumour had grown so my surgeon said it had to come out.”

The risks of operating were high and it had not been an option before as it was feared that operating could cause stroke or left sided weakness as Sue’s tumour was so close to her motor centre.

Brave Sue was awake for the entire craniotomy operation but because she was not able to answer the surgeons questions well throughout, he was worried about the damage trying to remove too much could cause.

Sixty per cent of Sue’s tumour was removed in November but she will have a further operation to remove as much of the tumour as can be done safely.

Sue has donated the part of her tumour which has been removed to the laboratory for them to test on.

The nurse highlighted how difficult her struggle has been following the discovery of her tumour on a family holiday, more than 12 hours from home.

“The first night there I had a massive fit and was blue lighted to hospital where they scanned me and found my tumour,” she said. “I had to be flown home with a doctor who had to come over from the UK to get me. It was an awful time.”

She emphasised why she wants to help fellow people living with the disease.

“It’s amazing when you start talking to people, how many have had brain tumours or know someone who has had one,” she said. “We just have to find a cure for this awful disease, it affects so many people’s lives.”

Sue feels there needs to be more awareness of the disease.

“They seem to be discovering possible cures for other illnesses but not this one,” she said. “But I was privileged enough to have a tour around the lab in Plymouth last week and it’s incredible what they do there,” she said.

The mum-of-two who has been married to husband Kevin for 11 years, said the struggle for her is the not knowing what could happen next.

Mrs Frost has a devoted family who she says have been there for her every step of the way alongside her dad and step mum who are always on-hand to provide lifts as Mrs Frost can no longer drive, and a “lovely network of friends who keep me busy”.

“We’ve had to all support each other, but I don’t know what I would do without them,” she said.

Her eldest Chloe is at university in Gloucester and Mrs Frost says the pair have found it difficult to be apart due to her illness because they are so close.

“It’s awful worrying for her but she’s doing so well,” she said.

Peter Jordan, who was at the time the South West regional fundraising manager for the Brain Tumour Research Charity, told The Herald why financial support for research is vital.

“We have four research labs in the UK and each costs £1million per year to run,” he said. “It’s vital we have the support because only 1 per cent of the Government’s funds for cancer research goes towards brain tumour research, despite it being the biggest killer of under-forties in the UK.”

After Sue’s operation, which hopes to remove 99 per cent of the tumour, leaving just the section closest to her motor centre, she will have to continue having a scan every six months to monitor the tumour.

IMAGES:

Sue and her dad, Trevor Davies, placing the plaque in memory of her mum on the wall

Sue and her friend fundraising at Energie Fitness in Plympton

Sue and husband Kevin

One of the plaques awarded to Sue for her fundraising

Sue with her family stood in front of the Wall of Hope

Sue and her family

For more on this story go to: https://www.plymouthherald.co.uk/news/plymouth-news/mum-reveals-what-like-live-1263890

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