“That’s standard for me: not being with it,” Andrew, 50, who is husband to Lyndall, 47, and father to Grace, 20, and Sam, 17, jokes.
A CT scan later that night and then an MRI the following day revealed the ugly mass on his brain. GBM is the acronym nobody wants to hear from a neurosurgeon. It’s the most aggressive tumour out of the lot, burying itself deep into the brain.
Neurosurgeons removed what they could of Andrew’s tumour the next day and when he eventually opened his eyes was given the grim prognosis: he had about 16 months to live.
Well, that wasn’t going to happen. Not to the Bates family.
“We’re now at 29 months,” says Andrew, a data centre manager for the University of Newcastle before his illness forced him to quit. “We’ve got the good china out and we’re doing some living. What we used to worry about, we don’t care about so much now.”
We’re telling the Bates family’s story to highlight the start on Thursday of the NRL’s Beanie for Brain Cancer Round, which raises funds for the Mark Hughes Foundation (MHF), which is named after Knights’ grand final hero Mark Hughes, who like Andrew Bates lives from scan to scan every three months.
It’s a rollercoaster you don’t want to be on. You live from scan to scan, every three months. You try to not think about it.
Hughes is fighting fit, training each morning and running the stairs with his former teammates at Merewether Beach, but knows there’s a timebomb in that rather humorous, generous and compassionate noggin of his.
He knows the best way to forget about it is to educate, support and help raise funds for a form of cancer that only receives five per cent of the federal government’s cancer funding.
“Andrew’s done really well given the diagnosis that he received,” Hughes says. “That family is amazing: they always have a smile on their face. A typically strong Newcastle family.”
When Hughes was diagnosed in July 2013, a brain cancer sufferer told him to “get out the good china. Life’s too short to keep it in the cupboard”.
He’s passed the line onto many others. He told Matt Callander, the beloved Channel Nine sports producer who helped conceive the Beanie Round before passing away in October 2017, aged 46. And Hughes told the same thing to Andrew Bates — even if Bates is a North Sydney fan who doesn’t support the Knights.
“It’s a rollercoaster you don’t want to be on,” Lyndall says. “You live from scan to scan, every three months. You try to not think about it, but you start getting anxious, wondering if it’s grown, the week before. You’re on a high when you get a good one. We’re trying to live life best we can.”
Within hours of Andrew’s diagnosis, Lyndall was sitting in a room at John Hunter Hospital when Sandy Nixon walked in. She’s a brain cancer care co-ordinator, who is funded by Hughes’ foundation.
“She came in with a bag [of information] and a beanie,” Lyndall recalls. “Everything was so overwhelming but she said, ‘We’re going to be ok, we’re going to get through it, we’re here together’.”
Sandy and another care co-ordinator, Alisha Gooley, have been in regular contact since that fateful day, either providing advice or coming along to the never-ending appointments Andrew needs so he can keep using the good china.
“It would be great if the government would pay for their roles, and more across the country so that others can benefit, and then the funds raised by the MHF can be fully committed to research,” Lyndall offers.
“No tumour is the same and can’t be treated the same. Standard care doesn’t work for everyone and, when it does work, it doesn’t work forever. Research is the only way forward to finding new treatment … People shouldn’t have to mortgage the house or tap into their superannuation to seek expensive surgery or overseas treatment.”
Only five per cent of people diagnosed with a GBM live beyond five years. The Bates family doesn’t count its time together in years but Beanie Rounds.
“We’re lucky to still be here for three of them,” Lyndall says. “We sold 2000 last year. We just have people calling us up, wanting to buy 20 or so for their entire office.”
They will be selling them again this year alongside the rest of the rugby league family.
“We know that people are taken very soon,” Grace says. “We’ve had a lot of time. We appreciate that. We’ve had time together — and time to fight.”
As his family talks, Andrew Bates quietly sits and listens. The dignity his family has shown, despite the shitty hand they’ve all been dealt, lifts him up.
“Day to day, I feel pretty good,” he smiles. “Having these guys around me helps. This shouldn’t be a death sentence.”
More info: markhughesfoundation.com.au
Andrew Webster is Chief Sports Writer of The Sydney Morning Herald.