I’ve heard it before.
The groan. The sigh. Another survey. Another request for my input into a system that never changes anyway. That wastes my precious time. That doesn’t get the mindf**k that is MBC.
I get it.
Because I live it too.
And yet I continue to participate. Have lost count of how many I’ve written in the past year. You want to know what it’s like living with a terminal diagnosis? Leaving notes and obsessing about being in a pic or 2 or 100 so that your kids won’t forget you? What it’s like going to the hospital every other week to have blood drawn, or treatment given, or scan completed, or check up scheduled? For the rest of your life. And know that this schedule is the best case scenario. Because this is stable. This IS the good news story.
It’s like trying to explain to that well meaning acquaintance that his symbolic ‘Any one of us could get hit by a bus tomorrow’ doesn’t really reflect our mutual realities, unless he feels like he sidesteps vehicles, thwarts tankers and narrowly avoids trains on the daily.
So yeah, I’ll do the survey. I’ll answer every question and use every space available in every comment box. Hell, I’ll even give you my number and we can chat afterwards once my truth sinks in.
Because I want you to know that I’m here. I’m part of a group of people living with MBC, not just dying from it. I’m part of a cancer subculture where barely a week passes without news of someone’s progression or setback or death. You want to know how I live with a combination of survivor’s guilt mixed with a hint of sickening gratitude for one more day of stability?
How much time have you got?
But unless I try to explain my lived experience to those who represent me and advocate for my best interests in meetings and at conferences and with ‘the changemakers’, how could I possibly expect them to understand my reality? When even those closest to me have a hard time processing my fluctuations of gratitude and despair.
It’s a platform; one that I vowed to use when the reality of what I faced settled deep within me. I need my voice to be heard. And I need my community to use every platform to roar.