I was 52, a non-smoker, and told I had lung cancer. Life as I knew it was over

There is no such thing as a “good” cancer. If you’re being told you have cancer, by any criteria, you’re not having a good day.

On 26 August, 2015 – Daffodil Day – I was diagnosed with lung cancer. I was 52, a mother of three, and have never smoked. Apart from a cough I’d had for a couple of weeks, I was feeling great. I turned up to the GP ready to be lectured on the overuse of antibiotics. Instead I was sent for an X-ray.

The first I knew I was in trouble was when the technician looked at the film, turned to me, and asked if I was a “real” doctor. I thought about arguing semantics. Technically I was a “real” doctor and medical doctors are the interlopers, but feeling the tectonic plates beginning to shift, I mutely took the films, minus the reports (I wasn’t trusted with them), back to the GP.

The plates shifted again when the GP lit up the film. It turns out I didn’t need the reports. Even a “real” doctor could see that life as I knew it was over.

The final shift to a new world order happened while googling life expectancy and reading my chances of survival. If my life is nothing but a series of miracles from this point onwards, nothing will undo that moment. The change was immediate and irrevocable.

Like everyone, I’ve had my share of hardships and deep sadness, but I am a school principal and we deal in hope daily. It is my default with young people and their families. Which is just as well, because if there is any theme needed around lung cancer, it is hope. Those who have hope; those who don’t. Those who try to be hopeful but who cannot mask pity; those who know the odds yet exude hope and strength by their very presence.

You may think that to get lung cancer is just bad luck. And you’d be right. Except that lung cancer is the number one cancer killer in Australia. So that’s a fair bit of bad luck. More women die each year from lung cancer than from breast and ovarian cancer combined – the fastest growing subset is young women who have never smoked.

With so many people getting lung cancer and the death rate so high, you’d think there would be group hug sessions, fun-runs and gala balls.

Not so.

From the moment I discovered some bright spark in the marketing department decided the symbol for Lung Cancer would be an invisible ribbon, it was evident “lung cancer” needed some practical assistance in the hope department.

Throughout my smorgasbord of treatments – chemotherapy, surgery and radiotherapy – I never met a soul with lung cancer. Literally no one. It wasn’t till I’d finished treatment that I came across Lilian, a young woman with lung cancer, a mother of one, non-smoker. Over a year later, I met Lisa, a mother of three, a non-smoker, and David, a father of four, and a non-smoker.

Bluntly, there are so few advocates till now because so few people survive. By the time there are symptoms, the disease has usually progressed so that people live weeks or months, rather than years. A significant number of lung cancer patients are told by their doctor to go home and get their affairs in order. Hope appears in short supply.

We don’t invest in research because one of the risk factors, and only one, is smoking. Not my risk factor, nor Lilian’s, Lisa’s, or David’s. But a risk factor. At latest count 13.3% of the Australian population smoke daily. And because their risk of lung cancer is increased, everyone with lung cancer is penalised.

It is the most stigmatised of cancers, attracting less than 5% of research funding to finding a cure, despite taking the lives of more Australians than any other cancer.

This differs starkly from other cancers, some of which can have survival rates around 90%, and yet continue to receive significantly greater funding.

The most frustrating aspect of this is that Australia has brilliant scientists, researchers and doctors. We punch above our weight on the world stage, in every regard. The development of medicine in this area is on the brink of a seismic shift as we move into immunology and targeted therapies, led in no small part by practitioners who operate on the smell of an oily rag. Imagine what they could do if funding matched the greatest need? Given half a chance, this cancer would be a chronic condition at worst and fully curable at best. Hope would reign supreme.

When it comes to cancer, we do all we can to control our risk. We educate, raise awareness and fund research. But if we are going to make judgment calls about where our research funding goes on the basis of stigma, or by moralising on lifestyle choices, then we should be consistent. Cut funding to Type II Diabetes till everyone stops eating sugar, stop researching heart disease while some patients continue to eat fatty food, cease researching bowel cancer till everyone eats fibre, and recognise that 40% of breast cancers are exacerbated by lifestyle choices. And acknowledge that more than 85% of the population do not smoke. Then let’s talk about funding allocations.

I wish we had a team of advocates for lung cancer and that more people survived. I wish I could raise public awareness with pithy campaigns and beautifully coloured ribbons. But wishes count for nothing. There is a pragmatic reality to hope that demands action, funding and research.

But the number one cancer in Australia, like its ribbon, is invisible. As are those who have been through it, and those who have died from it.

I am back at work, rallying the troops (students and parents) through term four, and looking forward to the Christmas break. Mercifully, the timbre of my journey was set by a eclectic tribe of romantic pragmatists – they knew the odds and fought every step of the way. They assumed I would win. Hope dictated their agenda and not stigma. And for that, I will be forever grateful. It is time to make this outcome a reality for everyone.

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