Pic © Joel Chant, UNP
Picking up the phone, Sue Farrington Smith had no qualms about dialling a complete stranger and asking: “Hi, can I come and see you?” At the other end of the line, Wendy Fulcher readily agreed.
Although the two women lived miles apart and had never met, they shared a heartbreaking emotional bond. Almost three years earlier, in June 2001, they’d both lost loved ones to brain tumours.
Sue (now 57) had been left devastated when her niece Alison Phelan died just before her eighth birthday. Wendy (now 62) was distraught to lose her husband of 16 years, John, at 52.
“I can’t remember what I was doing when my sister Julie phoned to tell me Ali’s diagnosis,” recalls Sue, from Padbury, Bucks. “But I do remember thinking that although it sounded nasty, it would all be OK because they’ve got a cure for everything these days. How naive!”
Within a few weeks, it became apparent there was little real medical hope of saving the fun-loving little girl whose condition had first come to light when Julie noticed a very slight movement in her eye, something only a mother would notice.
Even today, Sue, who has a strong Catholic faith, finds it hard to talk about it without tears falling. “We were shell shocked but we never, ever accepted it. Even the day before she went we were still looking for a miracle cure.
“Ali was just a delight. We’re a close family and I have such wonderful memories of her coming to our farm, helping me paint, playing with our Golden Retriever Amber and her eight pups. Wonderful happy times. I still have the little suede boots she left here in my wardrobe and the eighth birthday card I’d bought her...”
Sadly, Alison didn’t make it and despite their distress, the following day Sue and her family vowed to find a cure and ensure other families didn’t endure the same heartbreak.
“It was devastating and it should not have happened. I was appalled that in this day and age it had,” she says.
Initially Sue and her family set up their charity Ali’s Dream - but with her marketing background, Sue knew that for maximum influence they needed to work with other family-led charities with the same goal.
Her work led her to meet Wendy Fulcher in May 2004. She had formed a charity to fund research at Charing Cross Hospital, London, where her husband had died. “This was a meeting of minds; she’s been my mentor, confidante and ally ever since!” adds Sue.
Wendy instantly understood Sue’s passion to improve the plight of brain tumour patients, because of her own experience with her husband John, with whom she’d run an event organisation business.
“John loved life and it had all been one big happy adventure,” says Wendy, from West London.
But on holiday in Canada in August 2000 John began to suffer violent headaches. “We both knew something was wrong. John never had headaches.”
‘Four dedicated brain tumour research centres are now established in England but more are needed’
After a midnight dash to hospital, they learned he had a tumour and were advised to go back to the UK for surgery. “I am a fairly calm, matter-of-fact person but I was just in shock. I don’t think it hit me properly for a few days. You don’t really understand what it means at the time.”
Back in England, John underwent an operation to remove 90 per cent of the tumour.
Told it was not curable but with aggressive radiotherapy there was a good chance he’d be OK, John stayed positive. Wendy followed his lead but she admits, “I think I knew in my heart of hearts he was going to die, but our attitude was that he wasn’t. We never mentioned death and always talked about him getting better.”
But suddenly the following May John lost the movement on his left side and his short-term memory, forgetting what he was saying mid-sentence. After falling off the bed one night, Wendy called for an ambulance. John closed his eyes and spent the next week in a coma in Charing Cross Hospital, where he died on June 25. “Sadly we never got to say goodbye,” she adds.
Afterwards, speaking to John’s neurosurgeon, Wendy’s eyes were opened to the seriously underfunded world of brain tumour research. She pledged to raise money initially by asking for donations instead of funeral wreaths and then organising high-profile events.
Wendy’s work snowballed – as did Sue’s – and they’ve been campaigning together ever since. In 2009, Sue established the Brain Tumour Research charity after scaling back her own business activities to devote all her time to it. Wendy is the chairman.
Although they’ve successfully lobbied for significant developments in treatments and there have been improvements in five-year survival rates, it is still only 18.8 per cent. Despite the recent case of Ashya King – the little boy taken out of hospital by his parents to seek alternative treatment abroad – bringing the plight of brain tumour patients to the nation’s attention, public awareness is relatively scant, as is funding and research.
“Four dedicated brain tumour research centres of excellence are now established in England but more are needed,” says Sue.
“Although the biggest cancer killer of children and adults under 40, it receives just one per cent of the national spend on cancer research. Every day lives are being devastated and people are living without hope. We won’t stop until a cure is found.”
Both women admit it has also become their way of coping with their grief. Wendy adds: “I will always miss John, but you learn to live with emotion. I still get terribly upset and know there’s no point fighting it. Sue and I lead separate lives but we are always there for each other.”
- Yours readers can help support Brain Tumour Research by registering interest early for Wear A Hat Day 2015 on March 27 next year. To find out more visit www.braintumourresearch.org/wearahatday
There are plenty more real life and health stories in Yours magazine, out every fortnight on a Tuesday