Londoner cycles Ireland's Wild Atlantic Way to honour sister lost to brain tumour

A woman from northwest London is aiming to cycle Ireland’s Wild Atlantic Way in 20 days in memory of her younger sister who died from a brain tumour when she was just 20.

Sarah De Groen, 39, from Edgware, set off yesterday (20 July) and is raising money for The Brain Tumour Charity which offers support to anyone affected by a diagnosis, funds ground-breaking global research into the condition and campaigns for better care.

Rachel De Groen was diagnosed with an aggressive brain tumour – later found to be a diffuse midline glioma – when she was 19 and given just three months to live. In fact, she survived for 15 months, sparking a determination in Sarah to make the most of every day.

Sarah, a former teacher, said: "Rachel was the youngest of seven children. She 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.

"Looking back, the first signs that something wasn't right weren't headaches or problems with her balance. It was changes in her personality.

"The warm, gentle Rachel we knew slowly seemed to disappear. 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 initially prescribed medication by a private psychiatrist and then, when she went to hospital, anti-sickness medication. But she got worse.

“A week later, she needed to be looked after like she was a baby. 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 later asking us to come back. It was urgent. 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.”

Her family was stunned. And Sarah had to decide whether to go on a week’s family summer holiday with her children, aged three, five and seven, or stay with Rachel. She decided to go. As soon as she got back – two weeks after Rachel’s diagnosis – her mum called saying doctors said to come now “today’s going to be her last day.”

Sarah dropped everything. She and another sibling had a party with Sarah in the middle of the night and, without telling her the reality of her situation, mentally said their goodbyes.

In fact, Rachel survived the night, and she defied the odds to live for another 15 months.

Sarah and her siblings treated every one of those days as if it was their last together – arranging special trips and experiences when Rachel was well enough. Her brother even organised his wedding as quickly as possible so she could be there.

Sarah said: “Our attitude was that every day could be her last day. As a teacher, I would organise a substitute teacher for my classes the next day every day, just in case. And I’d visit her in hospital, or later in a 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. On the other hand, I’d be thinking I haven’t got time for a phone call with whoever – my sister’s dying.”

Eventually, Rachel’s health did decline after she developed infections at the site of her stent. She became unresponsive, recovered and then became unresponsive again a month later. Sarah held her breath for as long as Rachel wasn’t breathing – until she could take it no more. This time Rachel didn't recover.

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.

“I’ve cycled from Land’s End to John O’Groats previously. Now I want to go further and cycle the increased elevation of the Wild Atlantic Way. I’m aiming to spend 20 days cycling 1600 miles around Ireland in Rachel’s memory and marking the day of her diagnosis too - 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/