Friday 23 March 2018

A Tribute to Laurie Kingston, Advocate

On March 3 of this year, a Celebration of Life was held for my recently-deceased friend, Laurie Kingston. Several people spoke at the ceremony about how they knew Laurie and I was one of them. It quickly became clear that who Laurie was to us was what she had always been: a kind person who welcomed new friendships and advocated for those she represented. I'd like to share my remarks here as a record of not simply what I said, but to record the role Laurie played as an advocate for people with metastatic breast cancer. The rest of us need to step up now and fill the gap her passing has left.

Here's what I said:

Tim asked me if I would say a few words about Laurie’s role as an advocate and a support for others with cancer. I am happy to share what I know and what I have learned. But this is a difficult topic to cover in “a few words.”

I start my story like many others who are here or wish they were. I met Laurie over the Internet. I had been diagnosed with MBC (that is, Metastatic Breast Cancer) in late 2011 and I started to read blogs by others with breast cancer. Laurie’s blog “Not Just About Cancer” was one of those that caught my attention.

I quickly realized that not only were we both in Ottawa, we shared the same (wonderful) medical oncologist. I was taken with Laurie’s story and, of course, her writing. So I reached out to her. To my surprise, she reached back and offered not just information or support, but friendship. For this, I will be ever grateful.

Very early on, Laurie shared with me an article by Stephen Jay Gould called “The Median Isn’t the Message” which explained that while cancer survival stats give a median life expectancy, the numbers actually form a curve with a very long tail. When I was diagnosed, Dr. Google told me that the life expectancy with metastatic breast cancer was two to three years. But the idea of the tail is that some of us will live far longer than those two to three years. Laurie did. I am. But for a number of us with MBC, we didn’t “get” that until Laurie shared the article with us.

In addition to the her blog, her book “Not Done Yet” and her one-on-one work with people with breast cancer, Laurie also worked as an advocate for those of us with MBC. I’m sure that those of you who know Laurie from her twenties are not surprised that she would take on a formal role. With her brains and her extraordinary communication skills, she was born for this. Until her death, Laurie was a member of the Board of Directors of the Canadian Breast Cancer Network.

Laurie’s bio on the Network’s website says that she chose to join the Network’s board as it is the only organization in Canada that has advocacy programs that help MBC patients and that lobbies governments on our behalf. In May of 2014, Laurie joined Liberal MP Dr. Hedy Fry and other CBCN representatives in a press conference on Parliament Hill to announce Dr. Fry’s introduction of a Private Members Bill to make October 13 National Metastatic Breast Cancer Day.

In her remarks that day, Laurie said “Like most women living with metastatic breast cancer, I hate the onslaught of pink that hits us every October. I don’t feel that all the talk of ‘feeling your boobies,’ of battles won and lost has much to do with me. Much more relevant to me are clinical trials, drug coverage, quality of life and the long term effects of treatment. The prevailing theme during Breast Cancer Awareness month, or as many of us call it, ‘Pinktober’ is ‘stay positive, get through it and then move on.’ For those of us living with mets, for whom moving on will never be an option, the unintended message is that we have somehow failed at having cancer.” I couldn’t have said it better myself.

In a thoughtful post after Laurie passed away, the CBCN wrote about Laurie’s many contributions to their work. In addition to the efforts towards a National Day for MBC in the midst of Pinktober, Laurie’s work brought the perspective of those of us with MBC to the CBCN's agenda. Laurie contributed, in particular, to the Network’s Living Legacy Campaign, which honours the lives being lived by people with MBC and demonstrates they are much more than a cancer diagnosis, and MedSearch, which provides information on the availability of drugs to treat MBC across Canada. What struck me about the Network’s post was how the organization recognized the impact of Laurie’s perspective as a person LIVING with incurable cancer, not one “defined by it.”

My few words are up, but let me close with a story about how Laurie’s ability to live with Metastatic Breast Cancer changed the life of another friend of mine with the disease.

Like me, this friend was diagnosed with stage four breast cancer from the beginning. When she was diagnosed, she was told she had 22 months to live. Not two years. Twenty-two months. Not knowing much about cancer at that point, she really thought that at the end of those 22 months, she would keel over and die. One day, she mentioned to a doctor that she was now a year into her 22 months.  That doctor was confused. When she realized how my friend understood her prognosis, this doctor pulled out her phone and called someone asking if she could give my friend her number. The person at the other end said, “of course.” That is how my friend met Laurie Kingston, heard about “The Median Isn’t the Message” and realized she had more than a year left to live. In fact, next Tuesday will mark eight years since that friend was diagnosed with MBC. And because Laurie met her on her bicycle – I know, typical Laurie – my friend is still living her life, still making art, and now helping others who are new to breast cancer. I think that is the best we can do to honour Laurie’s memory.

Thank you.

Wednesday 21 February 2018

Missing Laurie Kingston

Yes, I'm still here. But Laurie isn't. Last fall, her brain metastases spread faster than radiation could treat them. I was able to see her a time or two during treatment and while she was in hospital. But she passed away on January 8, 2018, just before I could visit her in hospice.

It is hard to know what to say about Laurie's loss. I feel it in so many ways. Laurie was a my friend. We shared some unusual commonalities. In addition to being bloggers who love needle crafts and curly-haired dogs, we have fourteen-year-olds, very bright ones. We also share metastatic breast cancer and even have the same awesome medical oncologist.

I became aware of Laurie from her blog, "not just about cancer", which introduced me to her book, "not done yet". I reached out to her online and, wonder of wonders, she reached back. Laurie was the first person with metastatic breast cancer (MBC or stage IV breast cancer) that I'd met in person. I was thrilled to meet her and intimidated by the success of her blog and book. There is a lot about Laurie that could be intimidating. She is an amazing writer. But she is, sorry was, such a down to earth person that being with her never was intimidating. She was a nice lady, a mom, a wife, a writer, a friend, and so much more.

I was so lucky to have met Laurie when I did and get a chance to develop our friendship while she was well. And she was well for a long time. She gave a great deal of hope to others with MBC, even after she was diagnosed with lepto-meningeal metastases, which are quite rare and, frankly, scary. Laurie didn't let them scare us. She simply, well it seemed simple to me, got herself into a uniquely small trial of a new therapy approach where Herceptin is introduced directly into the brain to fight these mets. It worked for a long time. Then, like most MBC treatment, it didn't work any more.

All those years that Laurie lived with metastatic breast cancer, she did more than simply live. She wrote, she knit, she raised her boys. And she advocated for change. She was a board member of the Canadian Breast Cancer Network. She was part of a lobby day for greater awareness of MBC and the need for more funding and research.

Laurie Kingston was amazing for the friend she was, but in truth, she needs to be acclaimed for her advocacy while living with this disease. It is no easy feat.

See Laurie's blog for her obituary here.