‘OUT OF OPTIONS’: Life-saving doctor dealt cruellest blow
AT THE beginning of this year one of Australia's top doctors picked up the phone and made a rather difficult booking: Her own grave.
She was only 49 years old, she was at the height of her professional powers and she had a loving husband and three beautiful kids.
However she had given herself just three months to live.
In fact she was literally planning her own funeral, right down to the burial spot - next to her mother in the cemetery.
And that is just the first of so many unfair things about this story.
Nghi Phung should be the poster girl for everything that is great about Australia. She came here as a refugee from Vietnam when she was just 10 years old, the eldest of five kids with another two cousins to boot. They all stayed in a camp for nine months while her parents scraped together $2,000 to try to find a place to rent.
But, perhaps unsurprisingly, no landlord wanted to lease to a family with seven children. It turns out there are three constants in life: death, taxes and the Sydney property market.
Then, in a twist of fate straight out of a Dickens novel, they stumbled across a vendor who was prepared to take the $2,000 as a deposit for a three bedroom house that was on the market for $28,000. I guess maybe the Sydney property market does change after all.
So there they were: The two parents in one bedroom, the two cousins in another and the five brothers and sisters all in the third.
A year later, Nghi, pronounced "Nee", had won a place in the selective Fort St High School, paving the way for all her siblings to do the same. While her English skills were terrible, she was brilliant at maths. The selectors thought they saw something special and they were right.
Two decades later Nghi was trailblazing again, becoming a specialist in gastroenterology, an incredibly competitive field of medicine that was traditionally a bit of a boys club but for the first time in Nghi's year a majority of women entered the field. She was part of that historic class of 1997.
Now for most doctors one specialty is enough but again, this is no ordinary doctor. Nghi saw that many of the problems she was seeing as a gastroenterologist had begun long before the patient got to her. Liver disease caused by alcoholism, Hepatitis C caused by intravenous drug use.
And so, instead of being the ambulance parked at the bottom of the cliff, Nghi decided to go to the top and try to stop these diseases before they occurred.
Thus she then acquired her second specialty: Addiction medicine. She would treat people for the problems that caused the diseases instead of the diseases themselves.
Associate Professor Nghi Phung ultimately became the Director of Drug Health at Western Sydney Local Health District and an Addiction Medicine Specialist at Westmead Hospital.
It made her, she confessed, a bit of a nag. She was always warning friends and patients alike of the dangers of addiction - and not just drugs and alcohol but the deadliest addiction of all: Smoking.
And so it came as something of a surprise earlier this year when she found out she had stage four lung cancer - and a type of lung cancer explicitly associated with smoking. Not only had she devoted her life to saving others from such things, she had never touched a cigarette in her life.
I told you this story was unfair.
Cancer is always cruel. It is horrible, life-changing and all too often tragic.
But there is an added layer of cruelty when it is also humiliating. It is almost unthinkable these days for a cancer sufferer to be blamed for their disease but for people with lung cancer that is the stigma they feel. That they deserve it, that they always had it coming.
And Lord knows that is bad enough for the poor old smokers. Imagine how those who have lung cancer but never smoked feel?
In fact we don't have to imagine. Research released Thursday by the Lung Foundation reveals almost a quarter of lung disease sufferers feel shame, guilt or fear of being discriminated against and over 40 per cent feel stigmatised.
Lung cancer is the leading cause of cancer death in this country, killing one Australian every hour - more than breast and prostate cancer combined. Yet it has a fraction of the sympathy or awareness.
And 40 per cent of Australians say the first question they would ask someone diagnosed with lung cancer - "without first expressing concern" - is if they were a smoker. In fact one in three women and one in 10 men with lung cancer have never smoked. Despite this almost 90 per cent of Australians think smoking is the only risk factor.
To be honest, this is completely understandable. Smoking is incredibly dumb and of course increases your risk of lung cancer astronomically - and I say this as someone who smoked for more than 20 years.
But for people like Nghi, she actually wishes people would ask her if she was a smoker just so she could tell them no.
The greatest embarrassment comes when she presents in a hospital emergency department and even medical staff just assume she brought it on herself - or at least so she feels. It's a tough journey to go from one of the country's best doctors to just another patient.
"For people who don't know me, say at the hospital counter where I come in not as a doctor but as a patient, I'll say I've got lung cancer and I feel like I have to actually follow by saying I've never smoked," she tells me.
And yes, she's still alive.
"That's it - the embarrassment of having lung cancer. You roll up to emergency departments. They may not really know whether you smoke or not but they will probably have some form of judgment in line with what the community thinks and that's where I feel quite awkward."
Even more conflicted is when she walks through the ubiquitous scene of patients and visitors puffing away outside a hospital. Part of her knows that being in hospital is incredibly stressful and that of course makes people reach for a cigarette. The other part of her wonders if some of that secondhand smoke might have contributed to her own disease or that of countless others.
And so when we talk this week, as she faces the unthinkable prospect of not seeing her own children grow up, she is desperate to get two seemingly conflicting messages across: Don't assume that all people with lung cancer smoke but for the love of God can people please stop smoking. And they're actually not contradictory at all for anyone with half a lung or half a brain.
As for Nghi herself, she is busy trying to prepare the world for a time in which she no longer exists. Even in death she will be an overachiever.
In her treatment and research she has focused on training people to replace her so the work can continue and with her husband, an engineer, she is developing a revolutionary new technology to help patients get their test results faster. Her own future has been stolen yet she still devotes herself to the future of others.
She is all the inspirational clichés that move us to tears but medicine is no place for bullshit and Nghi has no time for it. Literally no time.
After all she has done for everybody else the treatments for her simply haven't worked. Immunotherapy was no good, radiotherapy is done and the last course of chemo runs out at the end of the year. Barring a miracle, the outlook is inevitable.
"After Christmas I've kind of run out of options," she says.
"There's nothing really on the horizon that's available for standard treatments."
Like I said, nothing about this story is fair.
But she doesn't fear death, at least not for herself. She is sorry she won't be there for those moments the kids will want her and need her but she is proud she got to see her eldest son graduate from high school - just as she blitzed through it a generation ago.
When Nghi was first diagnosed with advanced lung cancer the doctor gave her three to 12 months to live. That was nine months ago.
Still, being nothing if not a go-getter, she assumed she had only three and got busy. That's when she booked her own burial plot.
"I actually rang up the cemetery and asked to be next to my mother," she laughed as she told me yesterday.
"After a few months they rang back and said: 'How are you going? Are you ready?'"
Unfortunately they will have to wait. She's not ready yet.