‘I’m carrying out Anthony’s mission’
As the Bone Cancer Research Trust launches a landmark campaign, we tell the moving tale of one of the charity’s founders who was inspired to act by her late son’s bravery
Alife-changing diagnosis is devastating at any age but when Anthony Pilcher received the news that he had osteosarcoma – a type of bone cancer – when he was just 14, his reaction was to think of others. “When the hospital confirmed the treatment Anthony would have to go through, all he said was ‘we’ve got to do something about this Mum, we can’t have other children going through this,’” says mum Gill (61). Now, 16 years on, the charity in part inspired by his story is doing just that, as they begin a major fundraising drive into research about this dramatically under-funded and under-profiled disease. About a year before Anthony’s diagnosis, he’d had a bad fall on concrete and had been back and forth to his doctor with aches and pains in his knee. Eventually he and his mum went to a chiropractor who took one look at his knee and suggested it could be bone cancer – which was later confirmed by a hospital. Almost
immediately, Anthony was given chemotherapy and limb salvage surgery. But even as he began treatment, he was adamant that what he really wanted to do was to raise money to stop this happening to other families.
He began fundraising with a sponsored head shave – knowing he was to lose his hair from chemotherapy anyway – and initially gave £3,000 to a cancer charity. As his condition deteriorated he continued fundraising, building up a pot of money that he wasn’t initially sure what to do with.
Then one day in October 2002, he became very poorly with a chest infection and fell into a deep sleep. “About 3am the following morning he woke up and said to me, ‘I can’t do this anymore Mum’. I said, ‘that’s OK, you just go to sleep’. He said ‘goodbye’ and that was it, he was gone.” After his death, Gill continued Anthony’s mission to raise funds to fight primary bone cancer, which mainly affects children, teenagers and young adults.
“I knew I could either sit in the corner grieving, never going out again, or dig my heels in and carry on,” says Gill.
But as Gill carried on gathering funds, there was still the issue of where to send the money as no other cancer charities at the time were funding research specifically into primary bone cancer. That’s when Gill was introduced to Ian Lewis, an oncologist in Leeds, who said he knew of lots of other parents who’d lost children to osteosarcoma and, like Gill, had been raising funds but didn’t know what to do with the money. So he organised for Gill and the other parents to meet. “That first meeting was extremely emotional as it was the first time any of us had ever met someone else who’d been through the same thing. We decided there and then that we would form a national charity dedicated to research into bone cancer, using the funds we’d all raised individually so far. “Our mission was really to find a cure for primary bone cancer and in the meantime, try to support children and their families living with it.”
And so with half a dozen of those original bereaved parents, Gill became one of the founding trustees of the Bone Cancer Research Trust (BCRT). Since that day in 2006, the charity has invested £3.5 million in ground-breaking research. They’ve also worked tirelessly to improve not only treatment but also awareness and diagnosis among the public and the medical world, as the symptoms of bone cancer in young people are commonly misdiagnosed as growing pains. Beyond research, Gill says it’s also been a great privilege for the Bone Cancer Research Trust to help support other families going through what she did.
“I definitely felt support was lacking
when Anthony was poorly. And unless you’ve actually lost a child specifically to cancer, I think it’s hard to really understand what that person is going through. Even today, all this time later, if I hear another parent living with cancer in their family say something that jogs my memory, I think, yeah, I remember feeling like that, so I can tell them it’s OK to feel that way. For me, it’s also been a way of channelling my grief into something positive.”
Today Gill mainly helps voluntarily with the HR and finance side of the charity, which has grown hugely since its inception, but she’s hoping as she approaches retirement that she can dedicate more and more of her time to her charity work.
“I sincerely hope Anthony would be pleased and proud of what I’ve done. I can’t do anything for him now but what I can do is carry on his mission of helping others.”
‘I knew I could either sit in the corner grieving, never going out again or dig my heels in and carry on’ Every ten minutes, someone somewhere in the world is diagnosed with primary bone cancer ‘For me, it’s also been a way of channelling my grief into something positive’