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.

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