I don't look like I have cancer, but I've had to learn to live with this incurable disease
I will never forget the words from the oncologist when I was first diagnosed with metastatic breast cancer.
"We can put out the flames but it will always smoulder," the doctor said.
"You will learn to live with cancer. You will have to overcome the stigma of cancer."
For a start, being diagnosed with breast cancer was a shock. It took me days to digest the proposed treatment strategy of chemo, double mastectomy and radiotherapy: aka "poison, slice and burn".
But then a week later, I was not prepared for an even bigger shock. Advanced, stage 4 metastatic breast cancer had spread to my skull, collar bone, ribs, spine, pelvis, femur and humerus — not many spare bones left.
I was dumbfounded. So was my mother, who had recently retired from oncology. If anyone was supposed to get breast cancer, she thought it was herself, not her healthy, fit, young daughter who had just been skiing for a month with her two children, aged 10 and 8.
We were absolutely gutted and shell-shocked. How long did I have? What could I do? How could I defy the odds? My mind went into a tailspin.
Stable is a great word
The prognosis flipped. Chemo or surgery were no longer viable options.
The strategy immediately changes from excavation to a more conservative approach to slow down further progression, to contain and stabilise the disease.
I have since learnt that stable is a great word. But at the time this seemed incongruous and hideous. What do you mean slow down? I want it out, so give me everything — let's just bomb it completely!
The reality and the enormity of the diagnosis hit hard.
Some individuals are fortunate to have significant regression but the "mets" always lurk. Typically they go to the bones, lungs, brain and/or liver but in no particular order.
This is where ongoing treatment becomes such a huge, complex challenge as no approach fits everyone.
Three days later I had my ovaries out. This cut off the fuel supply and was an easy decision where I had some control.
Knowing what to say
Most people struggle to pronounce metastatic, let alone understand what it means.
The bewildered look on the person's face normally says it all. "But you look so good and so healthy," they exclaim, offering words of encouragement on something that most of us just don't confront — our imminent mortality.
Even worse are the seemingly innocuous questions, such "so when will your treatment be over, love?" from people who work in oncology and should know better.
It is so incredibly frustrating that many of us believe all breast cancer is curable.
That if you are strong, determined and positive, then you can fight and overcome the cancer.
This is unfounded. True, a positive mindset helps maintain resilience but this does not prevent the cancer from killing you.
Resilience is just the start
Before my diagnosis I submitted a PhD that suggested that emotional resilience determines how we respond to everyday obstacles, be they big or small.
Cancer is a big challenge, metastatic is huge.
The vulnerability experienced in the initial months was excruciating — total loss of control and overwhelming fear.
Scans are intimidating. A robotic voice commands "breathe in now, hold, breathe out now". No please or thank you, just commands to obey.
There is a total sense of helplessness as you await the next set of results — to see if the cancer has spread further.
Conflicting advice doesn't help
The lack of congruent, coordinated support made me feel like I was drowning in the ocean. Why was there so much conflicting advice?
All the focus seemed to be on early breast cancer. Why not metastatic, too?
The sense of isolation just exacerbated the fear and sleepless nights. It was a nightmare from which I could not wake up.
Having cancer is like being pregnant — you are absolutely flooded with information. Some is better than others, but much of it unsolicited.
I was bombarded with weird and wonderful suggestions of "alternative therapies". Some made sense, some not at all.
So much conflicting advice is sometimes demoralising, sometimes funny and other times very intrusive. This is where the importance of mindfulness and meditation cannot be underestimated.
The wonders of a fatal diagnosis
I have experienced amazing moments of insight over the past year. It's amazing what a fatal diagnosis can do! Having metastatic breast cancer is a constant reminder of the precious moments which create meaning and context in our life, and our legacy.
Eighteen months on and my disease is relatively stable. That said, I had two total hip replacements in May and recent breast surgery to try to prevent further mutations of the cancer.
Acceptance and surrender are integral components to my overall wellbeing, along with exercise and the hormonal and oral, targeted chemo treatment.
The side effects are tolerable, except for the crippling fatigue that hits late afternoon.
Despite a fantastic armamentarium of drugs now available, much research is still needed to thwart this hideous and clever disease.
But it's more than that: along with more research we need better understanding from the community (and the medical community, too) about the different effects of cancer.
Not everyone looks like the stereotype of a cancer patient: the challenge of managing breast cancer goes well beyond the surface.