Thursday, May 01, 2014

national metastatic breast cancer awareness day: my statement

Here is the statement I made at today's press conference (see below for details). Thanks so much to Dr. Hedy Fry for introducing the Private Members' Bill and especially to the Canadian Breast Cancer Network for being a tireless advocate for women living with metastasis.

"Cate Edwards, daughter of the late Elizabeth Edwards has said, 'Before my mom was diagnosed with breast cancer, I assumed breast cancer patients fell into two categories: survivors and those who lost the battle.'

Before my own diagnosis, I would have said the same thing.
I learned I had breast cancer in 2006, when I was 38 years old, with two little kids. Three months aftIer I completed treatment, the cancer had spread to my liver. However, I responded well to treatment and 7 months later was in full remission.
In November 2012, I was diagnosed with a metastasis to my brain. After conventional and cyber knife surgeries, I was once again able to embrace the words “no evidence of disease.” I will be in treatment for the rest of my life and, as there are no drugs that effectively cross the brain-blood barrier, I live from scan to scan trying not to dwell on the inevitability of the next brain tumour. 
This is my story. I have known far too many incredible young women, who have done everything they were supposed to do to be healthy and who have not lived to share theirs. 
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. 
Despite – or perhaps because metastatic breast cancer is stage 4 (there is no stage 5), very little emphasis is placed on metastasis in fundraising or awareness campaigns. The specter of death doesn't feel very hopeful. Yet that is where the emphasis should be. 
While it's true that there has been very little decline in the number of deaths from breast cancer in the last couple of decades, many more of us are living longer. And that is very hopeful. 
It is in understanding and committing research to end metastatic breast cancer that we will really find a cure. Given that, it doesn't seem very greedy to be asking for one day every year."


Anonymous said...

What you have said rings true and logical for me, Laurie. Metastatic Breast Cancer could not have a more silver penned spokesperson. You are doing so much to make the important statements and get the focused research that will help many others. And we know, this will help our loved one as well.


The B in T

tccomments2013 said...

dear laurie,

thank you for sharing the statement you made. it is powerful and highlights the truths about metastatic BC in a very focused manner. I applaud you, I am proud of you, and I am so very grateful for your generous and passionate advocacy.


Karen xoxo

laurie said...

Wow. Thanks so much to you both.

Lene Andersen said...

You are so brilliant. I love you.

KOB said...

Thanks for doing this! You are a tremendous advocate.

laurie said...

Lene, me too you.

And thanks so much Katherine. That means a great deal coming from you.

laurie said...

Thanks, Barb! That's truly impressive. Unfortunately, whether a Private Members' Bill gets to the floor of the House of Commons is depends on a lottery. If we make it through, then it will be time to put pressure on our Members of Parliament.

Ellen Long said...

Even if this particular bill doesn't "make it"--few private member bills do--increased awareness will help leverage future efforts to shift perceptions, emphasis and funding. Laurie, you're a living testament and powerful advocate, just by being who you are.

Facing Cancer said...

This reminds me of what you said the other day, about folks with stage 4 living longer and where does that put us? I think this kind of day would be very worthwhile. Whether or not the bill is passed, I'll mark it in my calendar nevertheless as a day to spread awareness online and through stories.

Thanks for what you do, Laurie. ~Catherine

laurie said...

Ellen, that's an excellent point. Thank you.
And Catherine, I often feel like I'm drifting out in limbo-land, very happy to be here but like some creature very few can totally understand. And then there is the issue of side effects of long term treatment. Do we pursue every treatment offered to us and at what cost to quality of life? My brain tumour has made me very aware that there has not been enough consideration of the cost of keeping patients alive. I have watched people go through long drawn out, painful deaths where they are cognitively and physically no longer the person they were. Is keeping people alive the goal in and of itself? I get butterflies just writing about it but this was the year that I realized that there are worse things than staying alive. And I don't feel that there are many who would understand how distressing this is - except maybe my therapist.
Finally, we need a cure.

Nancy's Point said...

I am proud of you!

laurie said...

Thank you, Nancy! xo

Unknown said...

I agree that it’s relevant to be aware of the statistics and other tangible data on how you can survive cancer. However, knowing that there are people out there who want to share your struggles can also help in lightening the burden.

Norman Watkins @ Giving Works