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Nicole Scobie (aka CancerDragon)
Jul
30
Awareness or Action?

What's more important, awareness or action? 

Gearing up for September as Childhood Cancer Awareness Month, which is the month before October as Breast Cancer Awareness Month, makes me think about the debate this subject triggered last year.


Oh wait, I know, I haven’t posted in a while (a long while), and you’re all, like, hey, Nicole, can’t you give us a bit of an update first before you start launching into a debate that could be just about semantics finally?


Ok, ok!

I know I haven’t been around in a while. There are a few reasons!

I wish I could tell you it’s because I have been so busy with non-cancer related stuff that I have completely forgotten all about that part of my life.

But no.


I actually am deeply immersed. Kind of like, if you decide to go swimming in a beautiful lake but instead, as you were walking to the lake you fall in a mud puddle, and sink in to your waist and have trouble getting out, so you keep telling yourself that mud is really good for the skin and other positive uplifting messages to erase the reality that you are swimming in mud.


(Mud is really good for the skin actually).


First of all, and most importantly, Elliot is doing great! We just had the 2 year post-treatment checkup, which involved several different tests at the hospital and then the interminable two day wait for the results.
But the results were all good and guess what? We don’t have to go back for 6 months!! It’s kind of like we were in jail, and got a pass for good behaviour as long as we checked in every 3 months, and now we showed such great behaviour that they extended this privilege to 6 months! Woo hoo!


And, my mom is still doing great! Diagnosed in 2000 with gastro-intestinal-stromal-tumour, relapsed to the liver, and on gleevec (imatinib ) for the last 12 years. She just got home after a two week trip to visit me here in Switzerland, and is going to London with my dad to see her favourite singer perform on September 25th for her 73rd birthday!


My parents are living the “seize the day” philosophy.


Last Christmas, remember how cold it was in Ottawa? I was there with all the kids and my husband Martin for a visit home during the winter, something we have not done in a while.

Anyone care to guess the average daily temperature? It was -30 degrees, every day.  Martin is Danish and had never experienced such extreme cold.

And guess what? He loved it!

Seriously, we would be driving around downtown and he would look at the people walking around dressed in seventeen layers of wool and all the cars and all the shops and restaurants open as usual, and he kept saying, in a voice filled with awe: “Everything still works!!! Everything is still open!!!  If it got this cold in Denmark the country would just shut down!”


Anyway, my parents, like all Canadians, knew the exact temperature at precisely every moment, including the wind chill factor (by the way, you may all be interested in knowing that this a purely Canadian thing to do, to be able to report the temperature at any given moment. Most people from outside Canada don’t actually do this.)


So my parents were all like: "Oh yeah it’s -30 but that's nothing, last week it was -38 with the wind chill and we walked to the store to buy milk and it froze so hard on the way home it exploded.” and stuff like that, like all Canadians do, actually bragging about meteorological hardship and how much we all love it. And I was like: "This is why I moved to Switzerland , where the snow  and cold stays on the mountain top where it belongs."

And Martin was just loving it.

So we left on January 5th as I recall, and I remember that my nose almost froze and fell off just on the walk in to the airport from the car rental counter, and that Elliot kept repeating he was colder than cold.

And the day after we flew out, you know what my parents did? They high-tailed it out of there to Florida, and didn’t come back till April.


So, living in the moment, seizing the day! Next year marks their 50th wedding anniversary! My sister and I are planning a secret surprise party. Don't worry if they read this, we are probably going to have to tell them anyway just to make sure they're in town.


Anyway, back to the mud.


I’ve spent the last year or so completely immersed in childhood cancer awareness and action (ha! I got back to my title subject!). I guess I somehow feel that there must be a reason my son got cancer, my mom has cancer, my grandmother had cancer… And I want to make a difference. So I have been fundraising and organizing activities in the “cancer community” here in Switzerland.


One of my best friends here had a daughter who also had cancer, treated at the same hospital as Elliot. She had neuroblastoma, and had relapsed. We founded a non-profit organization to support Zoé and her family, but the treatments failed and Zoé passed away in her mother’s arms last October, 2 days before her fifth birthday.


Living in the moment, seizing the day, becomes way too real when you know you have about one month of days left to seize.


But instead of shutting down in grief after her daughter died, my friend decided to do something – she basically jumped in the mud with me.


So here we are flailing around in the mud, having founded zoe4life.org together, and we are BUSY! There is so much to do!


We are funding a beads of courage program for kids here. Last week we spent an evening at the hospital making necklaces for the kids already in treatment, so that they can continue their chains from there.


We are supporting families financially, because not all medical expenses are covered, and most parents have to stop working for a while, which is also not financially covered in any way.


We bought a bunch of toys for kids who stay in isolation units after stem cell transplants. Elliot and Zoé’s big sister Lana went crazy in the toy store. It was a good day. A few tears were shed when the store manager tallied up the total and charged us… nothing.


We are just about to partner on the creation of a major research project for kids with cancer, happening right here in Switzerland, which will combine sports therapy with a study of physical activity for cancer or treatment related side effects.


So, there’s my update!


Now. On to my debate.


Cancer Awareness Months! Should they be called Cancer Action Months instead? That is the question. Is Awareness a waste of time? Does it lead to a lack of Action?


Is the simple act of putting a ribbon on your shirt doing any good, or in fact, is it lulling people into a false sense of activism, by making them think they have done something when in fact no life has been saved, no research has been funded, no person has been helped, through this act?


I can’t help going back to the story about the New York Times refusing to print an advertisement about a breast cancer support group back in the 1950s because the subject was too unpleasant. Plus, it had “that” word (I am still unclear if “that” reprehensible word was “breast”, or “cancer”.)


Fortunately, women didn’t take this sitting down. (Women never take things sitting down, did you notice that? We’re always jumping into the mud about stuff.).


My favourite quote this month, by Margaret Meade:
“Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has. “


So here’s what I think. (You knew I was just going to give my opinion, right? But wait, there will be a chance for you to give yours at the end in the comments!)


I think the first step is awareness. The second step is action. And I think the path to making a difference begins with the first step.


Personally I have not known any person put a ribbon on their t shirt and say “Well my work here is done, I’ll go shopping for something fun for myself now, because I just saved all that money I would have spent on cancer research by wearing a ribbon.”


Most people who bother to put on the ribbon do so because they want to make a difference. The average Canadian will donate once, maybe twice per year, to a cause that is dear to their heart. Many, many people will take part in a walk, run or other event in order to raise funds. They will wear their ribbon and maybe a pink t shirt or another colour, or a tutu, and they will have made a difference.  They will have lemon aid stands or sell cookies or shave their heads. And they will have made a difference.

Here’s a photo of Zoé’s parents and I, with three other members of the Zoé4life team, after a race through mud to raise funds for research. Yeah, you thought I was joking about the mud, didn’t you?


We Canadians, who can tell you the exact temperature with the humidity index today, have as one of our most recognized national heroes, Terry Fox. We won’t be just putting on a ribbon and patting ourselves on the back saying our work here is done.


Where there is awareness, there will be action. I’m sure of it.


So, go GOLD for September, for kids with cancer. Go PINK in October, or whatever other colour you believe in. 


Wear your ribbon and jump in.
 

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Nicole Scobie (aka CancerDragon)
cancermom
Member since
Apr 16, 2012

My grandmother, my mother, my son. Somehow, the cancer dragon skipped over me. Life is a roller coaster adventure, one with ups and downs, twists and turns. Our family is holding on tight for the ride, and somehow, happy. Together we are stronger than cancer.I write more about my cancer experiences at nicolescobie.com et en français au http://mamancancer.wordpress.com/

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