Knowing you are dying


Connie Johnson

Connie and her brother actor Samuel Johnson.

Connie and her brother actor Samuel Johnson.

At the age of 33, as the mother of two toddlers I was diagnosed with breast cancer. This was not my first encounter with the disease, at age 11 I had an aggressive bone tumour, which I overcame with the help of early detection and effective treatments.

I went on to live a normal adolescence; I loved music, boys and adventure, and gave my dad a few grey hairs. I later settled down, returned to study and met Mike, the man who would later become my husband. At the age of 22 we found that I was pregnant. This was great news; after the intense treatment I had had for my childhood cancer I had been told that I was infertile.

But the pregnancy had a genetic mutation and it turned into a tumour, a cancerous tumour. With surgery and further chemotherapy (much milder than before), I recovered again. Then, at the age of 29, we got pregnant again, and this time it wasn’t cancer, it was a healthy little boy we named Willoughby.

Connie on the set of SBS's Insight.

Connie on the set of SBS's Insight.

Hamilton followed a year later and by the time they were walking and talking life couldn’t be better for our family. Mike and I were running a bookshop that after 8 years of hard work and investment, was actually earning us a wage, so we were finally able to work just one job each. He was running the bookstore and I was working in the best job I had in my life, in the disability sector, which I loved passionately. Both boys were healthy despite having very eventful entrances into the world. Life couldn’t be better.


Then I was diagnosed with breast cancer and our world came crashing down around us. I was being treated to cure, but after 6 months of intensive chemo and radiation - and a double mastectomy - I was told that the cancer had spread and that it was now incurable. That’s right, this time I would not survive. My kids will grow up without their mother, my husband will lose his wife, and I will miss out on the rest of my life.  

I am in the unenviable position of being a cancer survivor and also being a terminal cancer patient. I can categorically say that as a survivor I had no idea of what being terminal meant, despite watching several friends lose the battle.

Being terminal does not mean that I can pursue my dreams with reckless abandon; it is not a chance to fulfil my bucket list and then come home to die. My life has been reduced to feeling sick, weak and fatigued, and spending so much of the precious time I have left in hospitals and waiting rooms.

I am often confronted by people who tell me to think positively, and that if do, or pray, or eat the right foods that I will be ok. That is simply not true; this is not a case of mind over matter. Surviving cancer is not merely a matter of fighting it and staying positive, it is also dependant on effective medical treatments. Once cancer has metastasised it is no longer curable, no matter how positively one thinks. The attitude that thinking positively can result in a cure makes me feel that it will be my fault when I lose my battle, it will be because I didn’t fight hard enough. This is not my fault, and I will die young from this disease.

I have also often been told that nobody knows when they are going to die, so I shouldn’t feel like I have a death sentence. Life is very different now that I know there is no cure. The ability to plan is taken away and I can no longer take things for granted. I will not have the pleasure of seeing my children go to high school, learn how to drive, or even have the stress of them keeping me up at night worrying about them when they are adventurous teens.

All that being said I am happy and I have found peace in my last days. When I am feeling well, and I am not in hospital I spend precious moments with my husband and children. I also get pleasure from running my charity with my brother. Through Love Your Sister we aim to increase breast awareness in younger women and raise money for breast cancer research to prevent other young mums from having to say goodbye to their kids. And if there is any time left after that I spend it scrapbooking so my children will have memories of their young lives with me long after I am gone.

So my message is simple - women: be breast aware, don’t fall into the booby trap, and men; save a life, grope your wife.

Connie is a guest on next Tuesday’s episode of Insight, 8.30pm 19 November on SBS ONE. She's part of an episode which brings together people who have been told how long they have left to live. Joining them are oncologists and palliative care specialists who explain the tricky art of determining a prognosis and telling patients.  Twitter: #InsightSBS


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