Allow me to introduce myself

My name is Laurie Kingston and this is my story.

I will never forget the moment when I discovered the lump in my breast, on December 2, 2005. It had been a long day, after a series of long days. I was feeling grumpy and a bit out of sorts as I went upstairs to get ready for bed. Then my hand brushed my breast and I felt what was, unmistakeably, a large, hard lump.

I ran downstairs to show my spouse, hoping hard that he would tell me he was sure it was nothing. He didn’t do that. Neither did the doctor I saw the next day. He referred me for a mammogram, which took place a few days later and was quickly followed by an ultrasound and a meeting with a radiologist who told me to “hope and pray for the best but prepare for the worst.”

The next few weeks remain a blur in my memory (except for the moment when I found a second lump under my arm) as I waited through the long weeks of the holidays. I was diagnosed with very aggressive breast cancer early in the new year. From that point on, things moved very quickly.

I had a mastectomy, followed by six rounds of gruelling chemotherapy and then twenty-five radiation treatments. A month after I completed treatment, I returned to work, only to discover a few weeks later that the cancer had spread to my liver.

My oncologist said that I had “more tumours than they could count” and, when pressed, told me that I had “years, not decades to live.” I re-entered the rollercoaster world of treatment and coped with infections and reactions to medication. Within a few months, I noticed that my symptoms had disappeared.

On June 30, 2007, I had my first clean scan – there was no longer any evidence of cancer. I have now been in remission for two years but I will likely remain in treatment for the rest of my life.

My relationship with the health care system is permanent, regular and intimate. And, for almost four years, I have been telling my very personal story quite publicly. I started a blog called Not Just About Cancer and quickly decided that it suited me best to write openly about my experiences and feelings as a breast cancer patient.

I’ve talked about sadness and joy, anger and frustration. About feeling invisible when a student radiation oncologist wrote on my chest without introducing himself. I wrote about the surgeon who said, “I can cure you” and my wonderful oncologist who said my results were “spectacular.” I related my experiences with hospital who couldn’t see beyond their own stress and of the many more who went out of their way to be kind. I composed my own list of “do’s and don’ts for medical professionals” and I shared my fear that I will die and my children will forget me. I wrote about the need for real universal access, patient dignity and the value and contributions of front line staff.

I started to blog as a way to keep friends and family informed (and as a communications professional, in part to put my own “spin” on the messages being relayed about my health) and as a way to process the flood of information and emotions in those early weeks of treatment. I would not have predicted how central the writing would come to my survival or how my blog could connect me to an active and vital online community.
I feel very honoured to have been asked by the Ottawa Regional Cancer Foundation to be a guest blogger this week. I look forward to sharing some of my stories as an ongoing cancer patient with you.

The above was excerpted from “Patient Personified” an essay I wrote for Women Who Care, published by Pottersfield Press in 2010 and edited by Dr. Nili Kaplan-Myrth.