Woman Cycles 1,600 Miles Around Ireland in Memory of Sister Who Died from Brain Tumour
By Charities Correspondent
A woman from northwest London has begun a 1,600-mile cycle around Ireland's Wild Atlantic Way in memory of her younger sister, who died from an aggressive brain tumour aged just 20.
Sarah De Groen, 39, from Edgware, set off on 20 July and hopes to complete the route in 20 days while raising money for The Brain Tumour Charity, which supports people affected by brain tumours, funds research and campaigns for better care.
Sarah's sister, Rachel, was diagnosed with an aggressive brain tumour, later identified as a diffuse midline glioma, when she was 19.
Doctors initially gave her just three months to live, but she lived for another 15 months.
Rachel was the youngest of seven children.
Sarah said: "Rachel had the gentlest nature. She loved being at home, playing the piano, art, fashion, butterflies and anything pink.
"More than anything, she loved children. My own children adored her. They couldn't wait for Aunty Rachel to come over because they knew she'd get down on the floor and play with them for hours."
Sarah said the first signs something was wrong were changes in Rachel's personality rather than headaches or problems with her balance.
"The warm, gentle Rachel we knew slowly seemed to disappear," she said. "She withdrew from the people who loved her, struggled with her mental health and eventually became physically unwell. None of us imagined those changes were being caused by a brain tumour."
Rachel was first prescribed medication by a private psychiatrist and was later given anti-sickness medication after going to hospital. However, her condition quickly deteriorated.
"A week later, she needed to be looked after like she was a baby," Sarah said. "We had to carry her to the car to take her to hospital. This time she had a battery of tests.
"We got a call from University College Hospital asking us to come back urgently. They said they'd found a tumour in her brain and needed to do a biopsy. The next day we were told it was incurable. She was paralysed down her left side and probably had three months left."
The diagnosis came shortly before a planned family holiday. Sarah had to decide whether to stay with Rachel or take her three children, aged three, five and seven, away as planned.
She went on the holiday but returned after her mother called to say doctors believed Rachel might not survive the day.
Sarah and another sibling spent the night with Rachel, saying their goodbyes without telling her how serious her condition was.
Rachel survived that night and went on to live for another 15 months.
Her family made the most of the time they had together, arranging special trips when Rachel was well enough. One of her brothers also brought forward his wedding so she could be there.
"Our attitude was that every day could be her last day," Sarah said. "As a teacher, I would arrange cover for my classes every day just in case. I'd visit her in hospital, or later in the hospice, every evening. I'd buy her pink butterfly gifts. We really valued our time together. Every birthday was special too.
"It changed my perspective. You don't have the luxury of worrying about anything that's not a matter of life or death when you're in this situation."
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Rachel's health eventually declined after she developed infections at the site of her stent. She became unresponsive, recovered, then became unresponsive again a month later and died.
Sarah said: "Grief changes shape as time goes on. Losing Rachel made me realise how precious life is and made me delve into what it really means to live.
"That's why I do these challenges - to live fully, to honour her and to help fund research into brain tumours.
"My children are my anchor, but when they're with their dad for half of the summer holidays, I have three weeks when I can do something meaningful to raise money for research into brain tumours and remind people that every day we have is a gift."
Sarah has previously cycled from Land's End to John O'Groats.
She hopes to complete the Wild Atlantic Way, which is around 1,600 miles with significantly more climbing, in 20 days. The challenge will also mark the anniversary of Rachel's diagnosis on 12 August.
To support Sarah on her challenge, visit https://www.justgiving.com/page/sarah-de-groen-2 and read her guest blog post on The Brain Tumour Charity website here: https://www.thebraintumourcharity.org/news/supporter-stories/she-completely-changed-how-i-choose-to-live-sarahs-tribute-to-her-sister/
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