I write poetry when the my heart calls to me and as a job of sorts, I must write to practice the craft. Draft after draft. (Crumlples up paper, throws and misses basket, starts again…) I write haikus in #haikuwars with @thankscancer and their followers. I write poetry and share it publicly and it feels like I am tying myself to railroad tracks, waiting for the locomotive to come tear me from myself since it’s so vulnerable to put any kind of art out into the public eye. Will you find it cheesy? Ridiculous? Should I just smash the keyboard? Like any artist wants praise they’re also scared to death of the critical eye. Not when something comes from the heart, however. When the words flow regardless of what anyone might think because we know it’s just right.
Having written a poem recently as an ode of sorts, as a thank you note for her work on behalf of the writers in the breast cancer blogosphere. No matter how busy her week was, no matter what else she must have going on in her life, Marie Ennis-O’Connor @jbbc rolls up global breast cancer blog posts each Sunday night. Mind you this no small task, reading all those blog posts and quoting some, giving an educated summary of others, she’s a loud voice for the breast cancer community all week long, attaching social media to the voice of the patient, and patiently waiting for the medical and oncology communities to catch up with her.
Marie tweets her Weekly Round-up driving readership to our blogs. And we read one another’s posts and promote them as time that week permits. All of them different, some taking on similar topics in a different voice. Introducing new bloggers, though that means someone else has been diagnosed with breast cancer. A sad reason, to be sure, but to soften the blow just ever so slightly because of the support we receive. That’s also been another beautiful bonus as a result of her work – the support from women and men around the world who are just a click away on the other side of the screen. Day and night – when we need a shoulder, an ear, or just someone to nod and click that ❤️ button of understanding even if they’re unable to respond at greater length.
We are a community of people who have the fortune of knowing one another through a very unfortunate heath situation. Breast cancer strikes 1:8, of which 40% will be diagnosed with secondary cancer. I probably sound like a broken record (showing my age here – raise your hand if you have ever owned an LP record or a 45 record). I’m sure you can all spit that statistic out like a bad taste from your mouths but we must raise awareness as to the seriousness of our conditions not just to one another but to those newly diagnosed, their caregivers, friends, families, and those who have left us isolated and sometimes alone to suffer on silently.
Not one is better than another – we are but a relatively small group of those who understand what the other is going through. Sometimes someone is lost to us – they die of metastatic breast cancer and we all grieve. Sometimes someone gets a No Evidence of Disease (NED) bill of better health and we all cheer. Although there’s a sadness that some of us admittedly feel when we aren’t’ close to NED and having health difficulties beyond the imagination of the “well” world we once belonged to and for that, we’re even grateful.
The blogs that Marie rounds up are many. I try hard to get my post in on Saturday night before I hit the sack to make sure she’s had a chance to read it. I feel like I’m failing myself if I do not produce one blog post a week. And read all of the posts of my friends, supporters and Marie’s round-up. Ironically, Round-up is a cancer causing weed killer that was ubiquitously used in the United States through the ’00s. It may have even caused some of our own cancers to appear. Mine unfortunately is a combination of high doses of stress over a short period of time, #densebreasts (read more on this topic from my friend @beingdense) that don’t allow mammography to separate the cancer from the tissue. It’s all one cloud of smoke in there. There’s better ways to see what’s up. I was not given the opportunity to have an MRI or Ultrasound or CT Scan because I was not told of my breast density. I’d have insisted I should think prior to having being diagnosed at stage four. De Novo – it should be De No Va – like the Nova an automobile with a most unfortunate name in Spanish – “no va” translates loosely to “won’t go.”
I won’t go gentle into that good night, either. I’ll write against the dying of the light until I can write no more. And I know sure as I sit in my bath of Epsom salts, apple cider vinegar and baking soda with a splash of frankincense for my neuropathy (try it it works!) with my iPad and new keyboard thanks to my honey who doesn’t show a lot of emotions over my cancer but presented me with this keyboard making my writing so much faster and easier for me to do. As sure as all that, I know that Marie will craft a post on Sunday in the UK – the usual and unusual suspects week after week. And that’s what the butterfly effect really means. One small move of the keyboard, one single word can change history forever. And I know we all have a goal in mind as we embark weekly or not as regularly or more regularly like @nancyspoint and Jo Taylor @abcdiagnosis.
There’s a few too many of us. But like butterflies we all change one another’s world just a little bit, as our wings gloriously fly for as long as they hold out. And I hope that’s a really long time.