It's August 30, 2012, the day before Daffodil Day, and Andrei Martin is burying his best mate Dave Lang's mother. She died of cancer and now everyone is telling Martin he looks "like shit"too. It started with a cough. Martin, 38, had never had a day in hospital in his life, he had barely taken a Panadol. But he was crook. "It was like a really bad flu." Ten kilograms "dropped off" in a week and the remarks followed. His workmates at the University of Canterbury noticed. His friends noticed.
Martin stood in front of his bedroom mirror the afternoon of Lang's mother's funeral. He was winding down in a pair of shorts and a singlet. "I was pale and sunken. I was gaunt." His friends were right. "Everyone could see it." The reason for Martin's extreme fatigue and rapid weight loss was not, as the South Brighton man first thought, "life". A young daughter. Earthquake stresses. A busy project management job.
It was a neuroendocrine tumour or NET: the rare cancer that killed Apple founder Steve Jobs. "At least I was in illustrious company," says Martin, his black humour, a strategy to protect those closest to him, in full swing. NET is a slow-growing form of cancer, which often goes undiagnosed for years. Specialists in Melbourne told Martin he may have been growing tumours for more than half his life. Martin's diagnosis came in a roundabout way after his GP sent him for a scan at the hospital on Daffodil Day - the day after Lang's mother's funeral. The prognosis was bad. It was cancer. Really bad. It was terminal. There was an eight centimetre tumour on his pancreas and his liver was also riddled with dark shadows.
Martin was given blood thinning medication for a blood clot doctors found on his lung and sent home.
"It was like, ‘Don't make plans for Christmas. This is going to happen quick.' We thought I only had a few months to live. It scared the crap out of a lot of people." But the cough disappeared and Martin felt fine. Nothing happened. There was no pain. He didn't get worse. What was dying supposed to feel like? His medical professionals at Christchurch Hospital agreed it didn't stack up. His oncologist decided to do a liver biopsy, which led to the NET diagnosis. "It was almost a bit of a fluke. People go for years without getting diagnosed. It was a win," says Martin.
But the issue, he says, is that New Zealand "does not know much about this". His oncologist told him only half a dozen Kiwis were diagnosed with the disease a year. "It was, ‘Let's just wait and see what's going to happen.' The doctors didn't know if I had 12 months or 10 years to live." It was, he says, "hard to deal with". He didn't know whether to enter the Motatapu mountain-bike race he does every year or not. Would he still be around?
The first of the five stages of grief seemed to kick around for a while. Denial. Anger. What would happen to Alice, his 3-year-old daughter? What about Abby, his wife? Martin eventually decided he couldn't sit around any longer. He couldn't "just wait to die". Time to do some research. He sat down at his computer and typed in NET.
It did not take long to find Australia's only public hospital solely dedicated to cancer treatment, research and education - the Peter MacCallum Cancer Centre.
On April 30 this year the family jumped on a plane to get there. "I went purely for a second opinion - to get some more accurate time frames and confirm the diagnosis," says Martin. He found hope crammed into a small Melbourne office with his wife and three specialists. They first examined a GaTate PET/CT scan image with "massive detail", unavailable in New Zealand, in which the cancer looked "way worse than I thought". But then, "they started talking about treatment". An information sheet given to Martin about peptide receptor radionuclide therapy (PRRT) says the "novel" form of therapy "may relieve your symptoms or shrink your tumours".
The first course of treatment consists of four intravenous infusions, which Martin is now halfway through. He had his third dose in Melbourne last week. Martin's oncologist in Christchurch, who wrote him a referral for the Australian centre, wrote to the Ministry of Health asking for funding. The response was, for Martin, "the s...t of a curve ball". "You think you do everything right, pay taxes, contribute to society, have private insurances. But when you need help - nothing," he says.
The ministry said PRRT was "investigational", "not routine practice", and therefore not eligible for funding from its high cost treatment pool. "There continues to be a divergence of opinion amongst those supporting the treatment," it said. "It is not considered an established approach and therefore does not meet the criteria." Martin says: "I get that they can't pay for everything, but it's still frustrating when New Zealand can't offer any alternatives. If I stayed here and did nothing I would die. [Peter Mac] have got stats that show the treatment makes a massive difference. It's a game changer." The ministry said in order to meet the criteria the treatment needed to have "proven efficacy through appropriate clinical trials and preferably has also been established as effective when applied in general practice". It hadn't. So tough bickies.
Val Johnston, the chief technologist in nuclear medicine at Peter Mac, says the need for clinical trials is a big problem when you have "a very small group of patients in the scheme of things". NET has been around forever, she says, "but getting the information to the coal face - the GPs - is actually quite difficult".
Dr Michael Hofman, a nuclear medicine technician at Peter Mac, says the clinical trials excuse affects people across many health issues. "If you take extreme examples such as antibiotics for life-threatening infections or defibrillation for ventricular fibrillation you will find no randomised controlled data. Everyone knows it works because there is an indisputable link between the treatment and survival," he says. "We [at Peter Mac] have treated patients who have been extremely unwell after failing all conventional therapies who are alive and well seven years later." Martin estimates the cost of his first round of treatments at Peter Mac to be about $60,000, including flights. His sister set up a Givealittle crowdfunding campaign without telling him. It has already raised more than half of that. "I didn't know anything about it. I would have said, ‘No.' The idea of people giving us money is really uncomfortable, but people want to help. It gets to the point where you can't say no, any more."
Complete strangers have given him money. A group of people ran the Greta Valley Marathon in his honour. There was a fundraising quiz organised by friends. Performer Ali Harper donated a portion of ticket sales from her Christchurch show to his cause. "There have been 190 donations already and I don't know that many people. It is really humbling and really, really weird. It just sort of snowballed. It helps remind you that there are a lot of good people out there." Martin says if the family manages to raise more money than it needs, "it would be good to help other people".
"There are a lot of people out there that could potentially have this game changer. Imagine knowing there's a treatment out there, that could save your life, but you can't afford it. There's no alternative."
THE CANCER THAT KILLED STEVE JOBS
Apple's Steve Jobs was diagnosed with a rare slow-growing pancreatic neuroendocrine tumour in 2003. The 56-year-old died in 2011 after standing down as Apple's chief executive.
NET is different from the pancreatic cancer that killed Luciano Pavarotti and Patrick Swayze. It progresses slowly, while the more common form of pancreatic cancer that killed Pavarotti and Swayze tends to progress quickly.
Dr Michael Hofman, of the Peter MacCallum Cancer Centre in Melbourne, said peptide receptor radionuclide therapy (PRRT) was not available in the United States at the time Jobs was treated.