So we're more than half way through Breast Cancer Action Month and I'm well overdue for my annual anti Pink Inc rant.
Blame the earthquake. We've all been so distracted - not to mention mired in EQC call centre hell - that not much else has got a look in.
As every year goes by I get less freaked out by all the pink and more able to deal with it. Having had my risk reducing surgeries (prior to them my risk of breast cancer was somewhere between 40 and 85%, my ovarian cancer risk up to 40%) helps. I can now be in the presence of pink without coming over all peculiar just at any reminder of the C word.
I have come so far, in fact, that I've moved on from ranting and am actually involved in a local group looking to raise awareness of hereditary breast and ovarian cancer issues. The Gift of Knowledge was founded by fellow Cantab Nic Coom, an amazing woman who is doing wonders to let people know what they can do to lower their risk (not always by having surgery, I need to add - some people choose super-regular surveillance, eg mammograms and MRIs every few months) and advocate for HBOC women.
I've always chosen to keep a low profile and work behind the scenes on this issue, mostly because I've seen how awkward it is for people when they find out the backstory (it got so hard for everyone to know where to look after my April surgery that I resorted to saying 'aren't they fab? Have a good look now' so people would actually look me in the eye in meetings).
But this is an issue I really care about. And so an approach from the Press on Friday to be interviewed for a story they're doing about reconstruction choices is something I'm seriously considering (actually, it's a bit more than that. I've committed to finding them somebody by 11am tomorrow and the woman I want to put up for the interview isn't returning my calls. So am thinking I'd better get myself sorted. Pronto).
What I'm mindful of right now is how hard it is to do media on an issue you really, really care about.
It's much easier when it's a dispassionate recitation of nice, crisp, clear key messages and a simple message. So much harder when you're involved personally and there's a high degree of complexity, as well as the need to think about how far you want to go, from a personal perspective.
And so in the absence of PR counsel at 8am on a Sunday morning, here are my notes-to-self about preparing for media interviews - especially the ones that are nearest and dearest to your heart and most likely to make you lose your head...
1. Think about what you want out of the interview, going in: before you commit to an interview, any interview, you need to be clear about why you're doing this. In my case, I'm really keen to get profile for the GOK site so that women who suspect (or know) they are high risk will be able to find us. So I'm going to need to find a way to weave that into a story that is primarily about reconstruction, not genetic susceptibility. If I don't achieve that goal, then I'll be happy if women considering reconstruction ask more questions and shop around more as a result of reading the story.
2. Don't screw up the long-game with a short-sighted move: some women see only one surgeon and are only offered one option - sometimes because that single procedure is all the surgeon does. We need to get the message across that women need to ask more questions and hunt down the option that is right for them, not just the 'system' or the surgeon. But without getting offside with the surgeons, who are important allies for us in our (GOK) work. Think about the risk areas and work out how you're going to mitigate them beforehand.
3. Thing about how you'll deal with tricky areas: for me, getting deep into the family risk is a no-go area because, even though my children are aware of why I had my surgeries and what my risk might mean for them, having it splashed across their Monday paper is a different story altogether. I don't want the genetic side of this to become a talking point amongst their friends and for there to be school yard speculation about their own status. For that reason I've asked the Press to refer to me as having been at high risk of developing breast and ovarian cancer and leave out any reference to family history. Semantics, I know. but there are other ways you can be at risk and I'll leave that to subjective interpretation. Being really clear about your bottom line and straight up early on is important, too. Worst case scenario is that a reporter (working to a tight deadline) thinks they're getting an open, fully identifiable interview and photo, you think that they're going to change your name, you'll only talk about one aspect of the issue and the photo will be fuzzed out so nobody knows it's you and the whole thing falls apart.
4. Be really disciplined about key messages: sometimes when I'm talking to people about this whole thing I find myself in a tangle. I'm so close to the issue, I know so much about it now and I understand it so deeply that others can easily get left behind. Especially since this is a relatively new area in medicine and the public awareness, it's best to assume that people have very little knowledge or understanding and start with the basics. Because this is also potentially a very emotional issue and media love - LOVE - human interest angles this interview could easily get off track and mired in the experiential aspects. Need to find a way to continually bring the message back to where it needs to be and use the experience to illustrate the message.
5. Leave something behind in writing: I'm so pleased I decided to have this little Saturday morning media training session with myself - I definitely would have forgotten this step. Especially with an issue as potentially wide-ranging and as complex as this one is it's good to make sure reporters have something to take away to refer to after the interview. Fortunately we (GOK) are pretty well prepared with fact sheets and key messages at the moment because we just have our conference and did a lot of prep work beforehand. These will easily be able to be adapted for this purpose.
Okay. I think that's it for the moment. No doubt there'll be more. Will keep you posted about how it all goes down and go off to write an invoice to myself at weekend call-out rates...
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