Secondary Breast Cancer Awareness Day
Thursday, October 13, 2011
My local supermarket looks like Barbie's wardrobe has exploded all over it. Everything is inexplicably pink. For a moment I'm confused, until it clicks. Ah yes. It must be October.
October, for those who are colour blind or live in a cave, is Breast Cancer Awareness Month. I feel oddly ambivalent towards it. On the one hand, it's a cause close to my heart. On the other, I'm very well aware of it already thank you very much. I do not need a vomit-inducing ocean of pink to remind me. And I feel like breast cancer has an unfortunate tendency to hog the limelight - and the funding, and the research - to the detriment of other, less glamorous cancers. As if there's anything glamorous about any of them.
But today, for one day, I will put my misgivings to one side and shout from the rooftops, because today is the second ever Secondary Breast Cancer Awareness Day.
I've written a little bit before about how it feels to have loved one with secondary breast cancer (the short version: it feels crap). What makes it even harder is the extreme learning curve that hurls you upwards into a confusing world of metastases and taxotere and stages and prognosis and a million acronyms that you have no hope of ever understanding. At first, I thought my mum just had really bad luck. Imagine getting bone cancer when you've already beaten breast cancer! Then, later, I learned she actually had breast cancer in her bones, and began to understand just how unlucky she really was.
(By the way, if you're still wondering what exactly all this secondary breast cancer stuff is all about, allow me to direct you to this wonderful comic. Its creator's wife was diagnosed last year with Stage III breast cancer and he sums up in a few lines and letters what a hundred detailed booklets and websites can still fail to make clear. Also, this one. Weep.)
I'm not saying it would have been better if I'd known secondary breast cancer was a possibility. I would probably have spent the decade between my mum's primary and secondary diagnoses worrying about every ache and twinge, and I wouldn't wish that on anyone. But it's scary how many women who have had breast cancer don't even know what it is or, more importantly, what to look out for. And on a purely selfish level, it would be nice, once in a while, not to have to explain to a well-meaning person that words like "cure" and "battle" and "better" don't actually help. Secondary breast cancer requires a different kind of positive thinking.
The bigger issue is that primary breast cancer - its prevention, its treatment, its care - dominates the fun runs and the research budgets and the public understanding of what breast cancer is. It can sometimes feel like the medical community has turned its back on secondary sufferers, preferring to concentrate its precious resources on the victorious finality of a Cure, instead of on the slippery and amorphous concept of Control. Yet many women who have been treated for primary breast cancer will one day have to face the sadness and terror of a secondary diagnosis (we don't know how many, because nobody is even collecting this data), so isn't it time we started paying attention to them too?
So, today, I would be ever so grateful if you would share this link - like it, tweet it, +1 it, print it out and stick it on your notice board, I don't care. Breast Cancer Care is a wonderful charity for all people affected by breast cancer. They have made a big difference to me and my family and they really deserve our support.
But today, for one day, I will put my misgivings to one side and shout from the rooftops, because today is the second ever Secondary Breast Cancer Awareness Day.
I've written a little bit before about how it feels to have loved one with secondary breast cancer (the short version: it feels crap). What makes it even harder is the extreme learning curve that hurls you upwards into a confusing world of metastases and taxotere and stages and prognosis and a million acronyms that you have no hope of ever understanding. At first, I thought my mum just had really bad luck. Imagine getting bone cancer when you've already beaten breast cancer! Then, later, I learned she actually had breast cancer in her bones, and began to understand just how unlucky she really was.
(By the way, if you're still wondering what exactly all this secondary breast cancer stuff is all about, allow me to direct you to this wonderful comic. Its creator's wife was diagnosed last year with Stage III breast cancer and he sums up in a few lines and letters what a hundred detailed booklets and websites can still fail to make clear. Also, this one. Weep.)
I'm not saying it would have been better if I'd known secondary breast cancer was a possibility. I would probably have spent the decade between my mum's primary and secondary diagnoses worrying about every ache and twinge, and I wouldn't wish that on anyone. But it's scary how many women who have had breast cancer don't even know what it is or, more importantly, what to look out for. And on a purely selfish level, it would be nice, once in a while, not to have to explain to a well-meaning person that words like "cure" and "battle" and "better" don't actually help. Secondary breast cancer requires a different kind of positive thinking.
The bigger issue is that primary breast cancer - its prevention, its treatment, its care - dominates the fun runs and the research budgets and the public understanding of what breast cancer is. It can sometimes feel like the medical community has turned its back on secondary sufferers, preferring to concentrate its precious resources on the victorious finality of a Cure, instead of on the slippery and amorphous concept of Control. Yet many women who have been treated for primary breast cancer will one day have to face the sadness and terror of a secondary diagnosis (we don't know how many, because nobody is even collecting this data), so isn't it time we started paying attention to them too?
So, today, I would be ever so grateful if you would share this link - like it, tweet it, +1 it, print it out and stick it on your notice board, I don't care. Breast Cancer Care is a wonderful charity for all people affected by breast cancer. They have made a big difference to me and my family and they really deserve our support.
Thanks team.
Top image: collage by Nathalie Boutté via Journal du Design via Anna's Pinterest. Thanks to Trisha and Kayce for the xkcd links.
7 boats moored
Oh Kirsty, my lovely daughter, once again you have hit the nail on the head with your lovely writing. How I wish this was a subject which didn't dominate our lives (I know shoes and handbags come a pretty close second). One day, some day, some bright spark will come up with a "cure" of some sort but probably not in my time. Am going to a SBC Day reception tonight with journalists, MSPs, health professionals etc, so will do my bit. Now, where is that tissue... xx
ReplyDeleteHi, this post really moved me. My aunt dies this year from a secondary form of one of the less glamourous cancers (bowel cancer) and so I think raising awareness that cancer is biger than just primary breasdt cancer is an amazing thing. And this really moved me. Thank you.
ReplyDeleteAnd I have retweeted the link and will try to donate.
Thank you speaking out about this. I get so bothered when I hear words like "cure" tossed around but as someone who has been blessed thus far to not be face to face with cancer, I feel like I'm not allowed to say that out loud. But from a scientific point of view, talking about a "cure for cancer" really doesn't make a ton of sense. Like you mention, cancer comes in a wide array - it's not one disease. And I can't speak from direct experience, but I do believe the research money could be much better spent.
ReplyDeleteMy heart goes out to you and your mom. Cancer is a bitch, and even more so when you think you've got it beat and it comes back somewhere else.
ReplyDeleteI hear you on the mixed feelings about pink-ifying everything. On the one hand, it has gone a long way toward de-stigmatizing breast cancer so that women don't have to feel quite so isolated after diagnosis (people just didn't used to talk about it), and it's helped lots of people get earlier diagnoses, and thus (frequently) better prognoses.
But on the other hand, it's sort of pink-washed everything else that goes along with the disease - the recurrences, the secondary cancers, and even to an extent the very real and legitimate emotions of people who are living with this disease. You don't look quite like the "hero" and "survivor" that people expect to see when you're just angry and cursing the fact that this happened to you in the first place. They expect a cheerful martyr, because that's the face that's presented in the pink campaigns. Personally, I think people who have cancer have every right to be angry, afraid, hopeful, whatever - it's a big scary thing and we should all give them space to deal with it as best they can. A close friend's mom was diagnosed a few year ago and got just sick to death of hearing people offer well-meaning advice/finger-wagging about what she should eat (or should have eaten to avoid getting cancer), how she should exercise (or should have exercised), and all she wanted to say was, "No. I did and do all those things. I did everything right. And I still got cancer. Sometimes, you're just unlucky, and it just fucking sucks. I'm scared, and I'm angry, and I have every right to be without a bunch of busybodies telling me that if I had/hadn't done X or if would only do Y now, I'd be cancer-free now. That's bullshit." Smart lady.
I think it gets particularly bad here in the US, where health insurance is tied to employment and there is a large faction of people that seem to conflate being poor/unemployed/sick with some kind of moral failing, instead of recognizing a very real cause and effect relationship between access to healthcare, and you know, being healthy, or at least being able to get a diagnosis when you are sick.
I used to work in a cancer research center (though the stuff I was doing was pretty far removed from cancer itself), and you're absolutely right that the vast majority of resources are directed at primary breast cancer, because that's what happens first, and because of the pink-ifying that's what people know about and what they rally to support in terms of research, and so now we are finally feeling like we know just enough about primary breast cancer to start making a dent, but there is so little out there about secondary cancers. I think that within the research community there are people working on it and talking about it but the allocation of resources is such that it doesn't get the same kind of attention.
Sorry for the epic comment - it's been something close to my heart for a while now. I am thinking good thoughts for you and your mom.
Wonderful post. I'll share the link everywhere I can :-)
ReplyDeleteI think part of the research problem is that which runs through the entire pharmaceutical industry. Money. Drug development is freaking-arseing expensive and so companies focus on cancers and tumours that they know most about and are "easiest" to treat, so they're most likely to get a return on their investment in the research. One of the things about primary breast cancer is that the mutations involved are very well-established at this point, it's streets ahead of many other cancers, thus research in this area is a safer bet, financially.
Don't get me wrong. This is not a defence. It is actually shitting AWFUL, the worst thing about our pharmaceutical industry. It's the reason I will never work for them, it's appalling. I won't be the first person to say that our drug development should be driven by NEED not finance, but sadly I also won't be the last. Writing like this, and sharing links like the one you sent, raising awareness and funds for lesser-known, lesser-understood, lesser-lesser cancers is beyond invaluable.
Thank you for this. It's brilliant. Much love to you and your Mum.
K x
Thank you all so much for your lovely (and well-informed!) comments, and for sharing the link - I have the best readers ever.
ReplyDelete♥
Kirsty, I wanted to do this since the day you posted this, but I finally got around to it. Here is to spread the "lilac" awareness.
ReplyDeletehttp://poppiesandicecream.blogspot.com/2011/10/lilac-awareness.html