Monday, September 28, 2009

From Co-Survivor to Survivor - How the Cancer Experience Changed My Advocacy

Hope changes everything. Hope is everything.

This morning there's been an extraordinary dialog on Twitter ( regarding cancer advocacy, and whether or not those who have not been diagnosed with cancer can truly understand survivors/survivorship. The answer is, OF COURSE! In fact, "co-survivors" -- or the daughters, sons, partners, sisters, brothers, friends -- have some of the strongest voices in the survivorship community. What makes an effective advocate is the ability to listen, to bear witness, and then transform that powerful listening into action.

Thousands of people get up and do this every day for one compelling reason: they want to make some aspect of the cancer experience better for someone else. I hear this time and time again. It never ceases to move me, in the same way I'm moved when families line the roads of a charity rides -- and clap. This speaks to what we are all made of more than anything I know.

We need every voice possible in the national and -- with thanks to the Lance Armstrong Foundation -- global dialog on cancer. The more we know about each other's perspective the better off we all are.

As a co-survivor both of my parents and a much-loved uncle had all died of cancer by the time I was 33. As a co-survivor I felt that bolt of lightning fear when my husband was diagnosed with melanoma the first time, then when it recurred. But as I survivor, what grew in me was hope. The hope that together we can defeat this illness called cancer. The hope that together we can speak up for change. And the best possible hope that -- if anything else -- we can discuss all of this in friendship and love.

Thanks again to Marie O'Connor, for her post on Journeying Beyond Breast Cancer.


Anonymous said...

Beautifully put, my dear twister

Jody said...

Thank you! And there's so much more to talk about in this regard, don't you think?

Anonymous said...

Yes, I think so. As I wrote in @JBBC blogpost, to me there is such a thing as the 'Obligation of the Healthy' to bring the Awareness which, combined with the Hope of the survivors, becomes the most powerful tool to fight cancer :)

Annemieke said...

Very well written. I think you are right, it is not just up to the survivors but also to us, the healthy ones that survived loved ones that lost their battlr with this disease. We need to speak with one voice and fight this batte together. The LSA is the perfect place were survivors and co-survivors come together to fight this dieases that takes too many lives. We have to make sure no-one will have to go through the agony of the disease or the agony of losing a loved one to this disease. In my family 6 members lost their battle, three survived. It made me so angry and determind to fight this disease with all I have. It is even more important to me than my "day-jpb" and within the LSA I'm joined by fellow advocates. Together we can make a difference! You said it well, my dear Twister and you lead by example. Annemieke

Jody said...

Obligation of the Health, is something I very much support. We have work to do on this within the survivorship community, and outside as well. I get that, absolutely! And ajcmjan, I know what you mean: this work definitely feels more important than our "day jobs." Because it is!

Anonymous said...

Now this is what I'm talking about Twister :-) Great post! Thanks for taking up the debate in this way. I think you make some very important observations here and as always you write with such grace and beauty. I am honored to know you and keep up this great writing!

Debbie said...

Another great post! On a great subject that may need to be discussed in person at the first Twisterhood Gathering! As I was writing to Marie earlier, I feel the obligation to help others regardless of their adversity. And by helping others I help myself in ways I could never have imagined! Thanks for keeping the dialogue going!

Megan said...

As a co-survivor, I have a lot to say on this subject! One does not need to have the disease to deeply feel its effects. I remember talking on the phone while driving on the Houston freeways, looking for an exit so I could turn around and head to MD Anderson to wait while an emergency surgery was performed. I slept on crazy uncomfortable chairs, waking during the night when dressings were changed. I held my survivor's hand while she endured breathtaking, unspeakable pain, prompting the attending doc to write in the chart "family member present and extremely supportive", only to go home in the morning to throw up and sit on my bathroom floor in a full sweat while my 3 year-old knocked on the door. I have never had cancer but it is my disease. It has taken and stricken many who are beloved by me. My day will come when I can be on the front lines. In the meantime, I will encourage all of you who are affected to raise your voices.

Jody said...

It is good of you to share, dear one. The other women who have commented are part of a group we call the #twisters, the #twisterhood, a group of caring, passionate, spiritual (various faiths represented)intelligent and caring women who have been affected by each other. We share each others pains, joys, concerns and jokes, however goofy. You are an essential part of the group. I love you.