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Dad with inoperable brain tumour does epic charity cycle

How does a dad-of-two with a new baby on the way cope with the fact he has an inoperable brain tumour and may not see his children grow up? He does an epic charity cycle

By Stephanie Bell

Published 23/09/2015

Gideon Burrows training for the 323-mile charity race
Gideon Burrows training for the 323-mile charity race
Staying strong: Gideon Burrows with his wife Sarah Mole and kids Reid and Erin and (left) training for the 323-mile charity race
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Gideon Burrows is living on borrowed time - but it is not stopping him making the most of every minute and next month he will push himself to the very limit when he takes part in a gruelling 520km charity cycle.

The Holywood dad-of-two, whose wife Sarah Mole (40) is expecting their third baby in January, will join a hardy team from his local east Belfast cycling club - 0745 Rouleurs - to cycle the punishing 323-mile route around Ulster in just three days.

Gideon (38), a freelance writer, has been living with a ticking time bomb inside his head for the past three years since being diagnosed with an inoperable and incurable brain tumour.

He has always been a cycling enthusiast and didn't hesitate to sign up when his club members created the Lough to Lough 500 challenge - an energy sapping bike ride of over 100 miles each day for three days over the first weekend in October.

The group will depart from the shores of Belfast Lough, through the hills of Armagh and Monaghan, past Lough Erne to the wild Atlantic coast in Donegal. They'll then travel back via Londonderry and onwards along the world famous Causeway Coast back to Belfast.

The guys - most of whom are approaching 40 - are taking on the challenge to raise funds for a number of charities close to their hearts, including The Brain Tumour Charity, Alzheimer's Society, Scripture Union and MS Society.

It is a big undertaking for each participant, but especially for Gideon who suffers from constant seizures due to his brain tumour.

But the lifelong cyclist can't wait, even though he knows it will be the biggest test of his physical and mental strength yet: "We will be covering around 110 miles a day, which is no mean feat for three days in a row.

"By the time we get to day three, we will have had 220 miles on our legs already, and with some steep climbs and wind in our face, it will really put us to the test as cyclists.

"Each of us could go out there and do 100 miles but to do it day after day is a significant challenge. We wanted to do something which captured people's imagination, so that they would get behind us and back us - and so far the support has been amazing."

Gideon and his wife are from England, although Sarah is based at the BBC in Belfast, where she works as a producer.

The couple had lived in Belfast for a time, some years ago but had settled in the countryside in Essex to raise their children Erin (7) and Reid (5).

It was because of Gideon's diagnosis, and the fact he does not have long to live, that they decided to return to the province where they felt they would have a better quality of life.

Gideon has had to come to terms with the knowledge that his brain tumour is slowly killing him and he has no idea how long he has left to live. He describes life now as being lived in "six month chunks" as he receives a scan once a year to monitor the tumour's progress.

Since his diagnosis in 2012, it has deteriorated from a low grade tumour to border line grade three.

When it reaches the highest grade four and turns malignant, Gideon can receive radiotherapy and chemotherapy to try and reduce it. But, such is the nature of the cancer and where it is positioned on the brain, he can only have one go at the treatment.

He can't drive because of seizures which come often and unexpectedly, and, while he is living life as normally as possible, he says it was a struggle to come to terms with the fact that his life is now limited.

He recalls how the out-of-the- blue diagnosis rocked the idyllic life he and his wife Sarah had carved out for themselves and how cycling - his biggest passion - has helped him to cope: "Cycling has always been a large part of my life and I was always out with my cycling club in Essex.

"When the tempo went up and I was sprinting for the line or in a race, I occasionally would have this moment of weakness which seemed to be on one half of my brain.

"My right hand side would feel numb and weak and my speech would become confused.

"I would think I was able to speak, but what came out didn't correspond with what I wanted to say.

"It only ever happened when I was pushing myself on the bike and, at first, I just thought that I was overdoing it but after six months I realised it wasn't quite right and went to the doctor."

Gideon was immediately referred for a series of tests including an MRI scan.

The scan picked up what he was told was a low grade tumour.

It was inoperable because of the way it had wrapped itself around vital nerves in the brain which control his movement in his right hand side, his speech and other fine motor functions.

He says: "Rather than a lump which can be removed, it was more like a bit of coral embedded in my brain - so removing it is not an option.

"I was told it was rare and incurable and slow growing. In your head you have only got a certain amount of space and, as it continues to grow, it will be putting pressure on parts of my brain that I need to function.

"I was given epilepsy drugs to control the seizures and told that the tumour will eventually turn malignant."

Since his diagnosis, he has received a brain scan every six months to monitor the tumour's growth. It is currently on the cusp of turning to grade three, but no one can tell how quickly or slowly that will happen.

Gideon has undergone brain surgery for a biopsy to determine if the tumour will respond to treatment when it turns malignant.

He has been told that when it reaches its worst stage, he can receive both chemotherapy and radiotherapy, which it is hoped might stop it in its tracks for a time, although it can never be cured.

In the first year after diagnosis, both Gideon and Sarah began to make preparations for his funeral and he wrote his will as the devastated couple prepared for the worst.

He says family and friends rallied round and helped them both come to terms with how very cruelly their lives had changed.

Gideon could no longer drive because of the seizures, which was one of the reasons why they decided to move from the isolation of the Essex countryside, back to Northern Ireland.

But while physically he could adopt to these changes, the emotional toll was a bit harder to accept.

"It was just hard knowing there is this huge chance that life is not going to last as long as you had hoped," he says.

"That is incredibly difficult, especially as my kids are so very young.

"We went through all the options - should we blow all our money and go round the world and do the bucket list, or close the curtains and doors and hide from the world while getting the kids up and out for school.

"My instinct was to get on my bike. Whenever I was feeling low, I would cycle for miles and miles and it helped me to get my head round what was happening.

"Cycling has been a lifeline for me and the people I cycle with have really helped me to come to terms with it."

While he and Sarah decided against blowing their money or shutting themselves away from the world, they did know that because Gideon couldn't drive, some things would have to change and that's when they decided to make a new life for themselves in Northern Ireland.

Gideon adds: "It does make you reassess your priorities and we both knew quite quickly we couldn't carry on living in the countryside with nothing around us and me not being able to drive.

"We had lived in Belfast and found it a beautiful city where the cycling doesn't get much better. You can be cycling round the coast here in an hour. Northern Ireland ticked all the boxes for me and when I got here the cycling community welcomed me with open arms.

"They came to understand my condition, they embraced it and didn't shy away from it. It was a case of them wanting to know what they could do to help keep me safe on the road if I have a seizure.

"They wanted to help raise funds for the Brain Tumour Charity with this cycle challenge, and I was absolutely flattered and extremely moved that they wanted to make that contribution."

The couple has learnt to live day by day and make the most of every moment. Gideon can only look six months into the future at any given time as he waits for his next scan. He is now bracing himself for November when he is due to have his latest MRI.

"I do get more anxious as the scans approach and you do try as hard as you can not to worry ahead of it, but you always do," he says.

"For the most part I just try to put it out of my mind. It is the hand that fate has dealt us and we have to get on with things. I certainly don't hold any hope for living into old age at all."

They have explained as much as they can to their children about their daddy's illness, so the youngsters know how to react if Gideon has a seizure.

As he reads them a bedtime story, his daughter picks up immediately from his speech if anything is wrong and continues to read on for her brother until her dad has recovered.

Gideon paid tribute to Sarah and her strength in coping with the fact their future is not going to turn out as they expected.

"She totally holds the family together and is incredibly modest about it, too," he says. "She is always there listening to me moan or worry and she has been through a tough time as well. To some extent she has put our needs before her own."

Gideon is pleased to be taking part in the challenge to raise funds for the Brain Tumour Charity among others. To date, the group has raised just under £15,000, which was their original target.

Money given to the Brain Tumour Charity will go into research and, while it might be too late for Gideon, he hopes it can help give hope to others in the future.

He adds: "The research and knowledge is really important to us and it is a wonderful charity. We've had superb support and two significant donations from First Trust and the legal firm Carson McDowell which has really boosted us."

And as he anticipates the challenge of next month's cycle on October 2, he adds: "I made a promise to myself that as long as I can still get onto a bike, I will be riding until my dying day.

"A challenge like this has been incredibly important in keeping my spirits up, and when I can't face going out of the house I get on my bike and feel that life is worth living."

You can follow and support Gideon and his friends in their mammoth charity challenge by going to www.L2L500.com, www.virginmoneygiving.com/team/L2L500 and Twitter @L2L500

Belfast Telegraph

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