Turning the mother of four on her side, her 17-year-old daughter ensured Neri’s airways weren’t blocked while an ambulance was called. Neri doesn’t recall a thing from the incident, but it has set off a devastating chain of events which has left the family reeling, crying and – incredibly – laughing.

“The amount of times I’ve had a headache and joked maybe I had a brain tumour… and I did!” Neri laughed from her home where she’s been recovering from an operation removing most of the malignant tumour taking up a quarter of her brain.

The size of the tumour in her right frontal lobe – the area responsible for personality – could be said to be reflective of Neri’s character, whose diminutive size belies her larger than life attitude to the world. That she can find laughter amid it all is indicative of who she is.

“I was fairly shocked,” she said, “but if you’re going to have a brain tumour, apparently it’s the very best place to have one.”

Brain cancer kills more children in Australia than any other disease. It kills more adults aged under 40 in Australia than any other cancer.

But despite its high mortality rate (in 2013 it claimed 1290 deaths) very little is known about it. In spite of the high costs (more than any other cancer) in caring for those suffering from its debilitating effects, brain cancer receives less than five per cent of federal government cancer research funding. Five-year survival rates have hardly changed 30 years.

Within a week of Neri’s seizure, Newcastle-based neuro-surgeon Dr John Christie had cleared his schedule to remove the tumour two days after seeing the scan, sending a terrified Neri in - with no one sure of the outcome.

“You don’t know what you’re up for, if and how you’re going to come out. If Pete [her husband] wasn’t there I probably would have done a runner.”

Post-operation, she thinks her personality is the same – “I feel the same” - but has noticed a pattern of forgetfulness. 

“I’ve been told in five years I will need to have Post Its stuck all over the place,” she smiled.

She said her prognosis, initially five to 10 years but now 10 to 20, is good and while the tumour won’t spread to other parts of her body, in time it is likely to grow back. She embarks on six weeks of radiation (33 sessions), this week, but is hoping the operation was the worst of it. 

“Maybe it’s naive, but I’m not scared about the treatment, in the end it’s what’s going to be the thing that gives me more time. The thing that scares me is having to leave the girls,” she said, referring to week long visits in Newcastle leaving her and Pete’s four daughters aged 21, 18, 13 and 11, behind.

There’s been a lot of cancer in Neri’s family – her grandmother, grandfather, two cousins, an aunty and an uncle have all been affected by different types. But this ‘glioma’ (oligodendroglioma) is the family’s first and is apparently unrelated to anything at all. She eats well, exercises, is on the younger side, doesn’t smoke… 

Added to the stress is the loss of the family’s second income from a six day working week, paying someone to replace her in Taree’s Cafe Thyme, expenses, and the toll it’s taking on her husband, who is left picking up the pieces including the driving as Neri’s licence is temporarily confiscated on medical grounds.

“I’m not the type of person to sit around… but I can’t even have a shower without telling someone. It’s hard watching Pete and the girls emotionally too,” she said, referring to their own internal struggles with the situation.

“To have this happen, it’s been a huge change. Out of it I’ve realised how many families are affected by cancer and until you’ve experienced it yourself you don’t realise the full impact. And I’m one of the lucky ones.”

Neri’s volunteered her tumour to science and is participating in a joint study run by the universities of NSW and Western Australia, researching the disease and its genetic and lifestyle factors. 

She is particularly grateful to her brain cancer care coordinator Sandy Nixon, who supported by the Mark Hughes Foundation in Newcastle and has helped since the diagnosis.

“I don’t know how I can help other people with it, but maybe this story will get people talking about it,” she said, hoping to raise awareness to get more funding directed towards the disease.

Quoting Arnold Schwarzenegger, she still ended with a smile. 

“It’s not a toomah!”

But it is.

Relevant links are: www.markhughesfoundation.com.au ; www.curebraincancer.org.au

Coincidentally, this same week the Great Lakes Advocate received a request from a brain cancer patient and owner of a holiday unit on North Street, Forster, who has donated her apartment for a week to a charity fundraiser held annually in May by another brain patient in Bathurst. Hoping to make it a package, they are seeking any local donations to go with it. Please contact Marieanne on 0417 651 909.