What They Don't Tell You
This is a hard day. I mean, they all seem hard right now but this one in particular, so I need to write out some thoughts.
It has almost been a year since my first cancer diagnosis, which means we're coming up on the year anniversary of finding and feeling Lumpy the Bastard for the first time. Although I can't quite remember the exact day, it was some time mid-May.
And so I guess, I've been reminiscing about the last year... which is probably a dumb thing to do because it was a really shit year. But here I am sitting and crying, all melancholy and blue, trying to process what has really been going on over the last 11 months.
Because I've found out, that there are a lot of things that "they" don't talk about. Things that I wouldn't have know to talk about if I weren't sitting right where I am today.
They don't tell you is that every bite you eat is tainted. Is this good for my body? Will this cause cancer to spread? Does this destroy cancer cells? Every bite of food becomes a mind game of Russian Roulette. The treats on hard days or the salad on good days... it doesn't matter, it's all tainted.
And then you throw in everyone else's opinions of what you should or shouldn't be eating.... think about that for a minute.... I don't remember asking anybody's opinion on what I should eat, and yet... They didn't tell me that so many people would care about my dietary habits.
They don't tell you that every milestone event will rip your heart out as you wonder if this will be the last birthday you attend or Christmas you'll celebrate. How the happiness gets lodged in your throat as you suck back the tears.
They don't tell you that even though you want to participate in meetings and groups and events that your body might crap out on you that day and decide it needs to sit on the couch and talk to no one. They don't tell you that the single act of making a phone call to a friend is enough to make you need to nap.
They don't tell you that exhaustion will be your life's new theme and they certainly don't tell you to take 2 weeks off before treatment so that you can plan how to schedule your next year.
They don't tell you that living your best life includes your kids being really mad at you. They don't tell you that the anti-hormone medication will make you feel undesirable to your husband. They don't tell that the first year of however many you've got left is going to go by in a blur of drugs and appointments and needles and blood and scans.
They just don't really tell you anything... except... I'm sorry, your cancer has spread.
And your world stops.
Except that it doesn't. It keeps going. But faster, now... almost out of control as you try to fit in extra good stuff among the really bad. Faster as you strive to live every moment in the present so as not to miss a thing.
They don't tell you that living with cancer is the hardest thing you'll ever do. And that being strong is so mentally exhausting that all you want to do is hide.
And I think they don't tell you, not because they don't know but because they don't you.
They don't know me.
Being diagnosed in the Covid world, means that I have never met my Oncologist face to face. She doesn't know my kids or my husband. She didn't ask about my career or my hopes and dreams. She doesn't know me...at all.
And as I read Instagram posts from women with MBC from around the world, the fear of being not known is real. We are not pink ribbon women. We don't ring the bell after our last chemo session. We are not called Survivors.
We are the few who slog through the trenches day after day... until our last day. Knowing every hot flash is medically induced and every ache or pain could be another tumour.
But they don't tell you life will be like that. They say, "Do whatever makes you happy".
HM... little do they know that Thriving makes me happy. That being a Survivor makes me happy. That being a voice for better medical choices and integrative health care makes me happy. That talking about the hard things makes me happy. That sitting in grief with others makes me happy.
What they didn't tell me... is that my life would change and it would be horrible but... and there's always a but... (or as my boys would say... butt)... but that I would never feel like giving up and that when I need to hide and be weak, those around me hold me up and give me new strength.
What they didn't tell me... is that I would find peace and joy in the midst of sorrow... and I know I've said this over and over.
And they didn't have to tell me this. Because this is what my voice is for. This is mine for the telling. This is my gift to bring to a whole community of women who live in the constant balance of joy and sorrow, life and death, strength and weakness, good health and pain.
Women of the MBC world, you are not alone. Your voice is not silent. Your life is just as important and you are loved.