Wednesday, October 8, 2014

October 8: Things Not to Say - Part 1

Someone on a Metastatic Breast Cancer support group on Facebook created a game for Metsters. A Bingo card, with comments that often are spoken by well-meaning, if ignorant people. Over the next few days, I'm going to be tackling some of those comments, and I'm going to be blunt about it. But I also want to say that once upon a time, I thought this way too. This is the problem of pinkwashing, it creates a false reality around cancer and shields us from the harsh facts about Metastasis. So when we are confronted with it, all we have is a false reality to draw on for something to say. This isn't to shame, but rather to educate. I apologise in advance if some of my frustration becomes evident.

"You are so brave."

Uh, thanks, but not really. I'm facing this scary thing because I have no choice but to do so if I want to keep living. I'm not brave, I'm just trying to survive and live my life. I'm not in this situation because of any choice I made. I'm just doing what you're doing, trying to live. Telling Knots compared living with MBC to being on standby for a flight. While it's true we all have to go sometime, that's comparable to everyone having to board the plane sooner or later. The difference is, people with MBC are in the airport, with tickets in hand, on standby for when a seat opens up. We don't want to be called, we don't want that seat to open up, but we're ready for it. That's not bravery.

"You look great!"

Please. I'm in a wrinkled T-shirt and faded jeans, without a stitch of make-up on and I'm bald. I don't even have eyelashes and eyebrows. I look like hell, and I know it. Telling me I look great? I can hear the unspoken words. "For a cancer patient". After all, I'm up and around and going on with life, rather than wasting away hooked up to tubes and wires. I don't look great though. I look worn out and washed out and as tired as I feel. Instead of a false compliment when we're worn down to the bone by the cancer, why not simply tell us how good it is to see us? Isn't that what you really mean?

"Stay Strong!"

As opposed to what? Giving up? I guess there's some merit to that, but do you know how exhausting it is to stay strong all the time? We have to, though. This is why it's so important that people with metastatic disease have their own unique safe space with others facing the same problem in which they can vent. We can hardly tell our family and friends how tired we are of fighting this, how sick the side effects are making us feel, how scared we are. We have to stay strong and put on a brave face to keep the people around us from falling apart, or worse yet, walking away. Almost every day I see a post from a fellow metster whose spouse has left them, whose children won't talk to them, whose friends are becoming absent. Stage IV is a slow death, and if we're lucky, we get a long time where we're not actually dying. But the fear is still there. We are hushed at breast cancer support groups because hearing our stories scare the earlier-stage survivors. No one wants to talk about metastatic breast cancer. So of course we have to stay strong. Society doesn't give us a choice.

"You'll be fine."

I fully admit to being guilty of this one. I said it about myself. In fact, when I'd be telling people I had Stage IV Breast Cancer, that's what I'd tell them, "But don't worry, I'll be just fine." I was blinded by pink, and didn't fully grasp the scope and depth of my metastatic diagnosis. I'm doing fine, but I'm not fine. I have a terminal stage of cancer. It's currently stable, meaning it's not currently killing me, but that doesn't change the fact it's never going to go away. I will never be exactly "fine", because when we say "You'll be fine", we really mean "You'll be cured". And that's not going to be the case.

Part Two
Part Three
Part Four

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