Poetry Friday @JBBC Journeying Beyond Breast Cancer

Poetry Friday

Poetry Friday
— Read on journeyingbeyondbreastcancer.com/2020/02/07/poetry-friday-169/

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.

4 thoughts on “Poetry Friday @JBBC Journeying Beyond Breast Cancer

  1. I am brand new to this blog, but not new to BRCA. Ilene and Marie are far more than articulate, whatever that means. Each seems to reach a soularealm of thoughts and feelings which are better left described by them. After nearly 15 years of survival, conclusions and ideas expressed I thought I only had a sense of until each expressed them the same differently have now come to full light full thanks to them. I more fully understand what I’ve experienced through their “soularealm” (for lack of a regular term) of expression. Each transcends the written word fluidly to encompass my feelings and sometimes errant and ugly thoughts that are not always fleeting as I would want. And each can express the joy which is certainly too brief in my world. Thank you for allowing me to share what I think. However, what I think is far less important to me than what you think, because you teach me if I am humble enough to be willing to learn. Thank you for letting me share and THANK YOU for sharing your experienced, wide and ascendant thought. Jan

    1. We learn, like it or not, because we must. Imperative too, are the experiences of others in our situations because without one another our minds would break under the weight of the situation. It’s so heavy that at times, I am quite uncertain I’ll be able to walk another step. But I put on my shoes and go. There’s no one who can walk in your shoes, either Jan. You’re articulate and funny with that wry humor that long term survival gives us like hives. We need it to remain hopeful while expressing the ugly shit that we take – on, take in, take around, carry with – all the prepositions apply here. It’s in fully trading your responses and having the right thing to ay not just an empty hollow “thanks I’ll pray for you” BS answer. It’s always preferable and more honest to express my truth, something I’ve just recently learned to truly appreciate. It sounds kind of cheesy, but it’s not. I live my truth every stinking day I get out of bed and wander softly on sore feet with cracking knees and neuropathy shooting fire down my arms to the tips of my fingers. Until the opioids kick in. Until my one little sneaky treat of a caffeinated beverage for the morning or on so,e days, afternoon wake up call. I’m no good at friendship because I’m no good at time – I’m illegitimately alive for five long years a full 2.5 more than I’m supposed to be allowed— so take my words as such. As the truth of someone who may as well be invisible most of the time. We are so much like the post apocalyptic zombies that can’t be killed. Not by the usual means of murder anyway. I guess it’s that we refuse to leave our love behind us and jump across the river to the mystery.

  2. “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 “

    This is me on a weekly basis. The common factor of silent support is uplifting. To know I’m not alone…even in my rituals. Thank you.

  3. Ilene, your words, as I’ve said many times are a gift to me. Your writing is a gift to our community – and this poem is one of the most precious gifts I’ve ever received. I wish I had words to express my heartfelt gratitude to you – but I’m a collector of words and stories more than I am an articulate writer. I would like to share some words with you from an old Irish saying. In Gaelic “ar scáth a chéile a mhaireas na daoine” – It is in the shelter of each other that the people live. We are blessed indeed to have found some shelter in each other’s words and care in the storm of cancer xxx

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