Tags
Advocacy, cognitive fog, identity, infusion, JBBC, Nancy's Point, national cancer survivors day, sentinel node, staging, survivor's guilt
“I read the news today, oh boy . . .” and prompted by Marie’s questions: who are cancer survivors and is it really necessary to celebrate survivorship on the first Sunday of June, I began yet another interminable trek through the unfiltered Internet. I found no answers for Marie. Just more questions. Admittedly, before today, I was completely unaware that such a “treasured worldwide celebration of life” was on the calendar and has been for twenty-five years. I wonder would I have been any the wiser had I not been diagnosed myself. So who is a survivor, and who do I think I am? At best, I am ambivalent. According to the National Cancer Survivors Day website:
a “survivor” as anyone living with a history of cancer – from the moment of diagnosis through the remainder of life. National Cancer Survivors Day affords your community an opportunity to demonstrate that it has an active, productive cancer survivor population.
Was I surviving before I discovered the lump myself? Is that how we would describe my living – my life – before it was officially declared “surviving?” Is that the label we would ascribe to it, after pronouncing as cancer, the disease that flourished, undetected for as many as 7 – 10 years, defying three mammograms, hiding in tissue no one had bothered to advise me was dense? Or is there another word for what I was doing before the diagnosis? A better word? Did I used to be a more active and productive member of the population? Trying to find the right word today, I stumbled across a jarring Times of India headline National Cancer Survivors’ Day: Gutsy fighters took on cancer, and won. Took on? Took on Cancer? Won? Those who have been killed by cancer, are they “less gutsy” than the rest of us? Losers?
Of all the words that no longer connote for me what they once did, “survivor” is the one that leaves me entirely flummoxed. As I have mused previously, the diagnosis has forever changed certain words for me – “staging” I no longer immediately associate with the theater; “fog” I am more apt to attach to a state of cognitive loss rather than the misty morning cloud that often obscures Pacific Coast Highway as we head north in the summertime; and, “cure” of course is no longer the idiomatic “hair of the dog that bit you” but a terribly elusive thing all wrapped up in a pink ribbon. Even “sentinel,” which was reserved, until cancer came calling, for a lonely cormorant perched on a post in the shallow waters of sleepy Morro Bay. I now know sentinel as the first node to which cancer cells are most likely to spread from a primary tumor. Until this week, “infusion” was something done to transform olive oil into a gourmet gift. But because I had turned left instead of right upon leaving my oncologist’s office, I missed the exit and instead found myself on the threshold of the infusion suite, a room I didn’t even know was there. Feeling as though I had intruded, I fled. But not before I had registered a row of faces of people sicker than I. In one microscopic moment, I made eye contact with a woman and wondered if perhaps she was cold because, as I turned away, I noted a quilt on her lap. I turned away and thought of Shakespeare’s “enter fleeing” stage direction. Ashamed. Guilty.
Ironically, just yesterday, in response to a poignant and provocative piece of writing at Nancy’s Point I commented that somehow I was beginning to make some kind of order out of my life since cancer. Or my life with cancer. Or my surviving cancer. I wrote that I was learning to make room for it, to make sense of it no less. Well, that was a bit premature, wasn’t it? Cancer makes no sense at all.
So the headline from The Times of India has troubled me. I do not feel gutsy. Nor do I feel like a winner. Nor am I comfortable with being described as a survivor. What then? I am a cancer patient. I am in treatment. I am aware that my treatment, currently, does not impinge on my life to the extent that it would were the disease more advanced. If it progresses, that is.
A profound sense of guilt accompanies this awareness. How does one make sense of the guilt? It confounds me and reminds me of growing up in Antrim. At a safe distance. Except the times our kitchen window shook because a bomb had exploded somewhere. Or the time when the bomb exploded outside Halls Hotel. Or the time my brother, as a journalist, had to interview the grandmother of three little boys murdered, burned to death on July 12, 1998. Richard, Mark and Jason, just eleven, nine, and seven years old, had been asleep when a petrol bomb was thrown through the window of their home. Or one Saturday night, when my college friend Ruth and I returned to her brother’s house where we were staying, only to find out that her car had been stolen and set ablaze as a barricade across town somewhere. Strange that cancer has taken me back to these places so many times, and things I haven’t thought about in years . . .
In May the Lord in HIs Mercy be Kind to Belfast, based on his interviews with the people who lived there, Tony Parker makes an unsettling but astute observation that those born and brought up in Northern Ireland have a mutual need to know, from the start, about a person’s background, so they can proceed in the dialogue, the longer relationship, without saying the wrong thing, “the wrong word.” The schools we attended, our last names, the way we pronounce an “H” all became clues to help establish “who we are.” “Derry” or “Londonderry?” “The Troubles,” “the struggle, or “The Irish Question?” “Ulster” or “The Six Counties?” Between the country of my birth and cancer country, I find that myth features prominently, in particular the myth that victims have in some way, brought it upon themselves. The calendar takes on a new significance, too. We could fill a calendar with anniversaries, those of Bloody Sunday, the bombing of Omagh and Enniskillen, Internment, the Twelfth of July. Literally untouched by these, but changed nonetheless. Survived. The images are indelible. Iconic. Father Daly waving a blood-stained white handkerchief, the carnage on Market Street in the heart of Omagh, orange sashes, bowler hats, Lambeg drums, and The Guildford Four. While I haven’t personally celebrated a “cancer anniversary” yet, I have already penciled in my one-year appointment in November. In the end, I suppose every day marks an anniversary of something.
On the question of language, there is no easy answer. Within terrorism, within cancer, and the respective wars waged against both, are words and phrases that seem to sanitize and even glamorize the suffering and pain, that hide the horror and heartbreak visited upon ordinary people going about their daily lives. I am thinking again of County Down writer, Damian Gorman whose words I rediscovered not too long ago while ruminating on the complexities of cancer, the politics of its lexicon. He describes the bombs, bullets, the “suspect incendiary devices” all too familiar in 1980s Northern Ireland as far less deadly than the “devices of detachment” its people used to distance themselves from the violence. Aware of it, yet so removed. We were, all of us, very good at “detachment.”
“I’ve come to point the finger I’m rounding on my own The decent cagey people I count myself among … We are like rows of idle hands We are like lost or mislaid plans We’re working under cover We’re making in our homes Devices of detachment As dangerous as bombs.
Marie Ennis-O'Connor (@JBBC) said:
It’s nearing my bedtime here so I will have to content myself with a cursory read of your post and a quick comment to say thank you for delving into these issues further. I’ll have a proper read tomorrow when I am more alert.
Yvonne said:
Thanks Marie, for coaxing so many people into such an important conversation.
Jan Baird said:
Wow, Yvonne, this powerful post should be required reading for everyone who cares about cancer’s toll on “personkind”. Coming from Northern Ireland, you, of all people, would understand the political charge attached to certain words and phrases.
Even in the adultery/divorce field, there’s a slippery slope laden with charged words and “Do I tell?” or “Don’t I tell?” dilemmas. When do we cross the line? There’s no clear answer. We would be prudent to step carefully, remembering that many people are fragile. But step we must, rather than avoid the person. Avoidance is that “device of detachment” to which Mr. Gorman alludes. Indifference, rather than hate, is the opposite of love.
Great writing as always. You’ve given us much to ponder. xxx
Yvonne said:
Jan, I just deleted my entire comment … can neither find nor remember what I wrote!!
I think you’re right – maybe we avoid or deny or wrap things up in euphemisms, because the alternative is entirely more frightening. So painful sometimes to confront truth and face a person’s fragility …
Facing Cancer (@cancer2gether) said:
I love your contrast of concepts before and after diagnosis (particularly ‘infusion’ and the olive oil). Language is so contextual – and survivor is just one example of this. Really, I guess it’s all about the individual experience. When labels are involved, we should have the right to choose our own definitions and titles.
Great post. Thanks for sharing, Yvonne.
Catherine
FacingCancer.ca
Yvonne said:
Thanks, Catherine. You’re so right about the contextual nature of language – and I keep learning more about that.
Kathleen Hoffman, PhD said:
Reblogged this on Musings on Health Communications and Health Advocacy and commented:
This is an incredibly well written commentary on the language of cancer. Yvonne brings us round to face our society’s efforts through the “language of detachment” to make those with cancer feel like “the other” A must read….
Kathleen Hoffman, PhD said:
I have re-blogged your post…it is wonderful!
Yvonne said:
Thank you so much, Kathleen!! Such a complex issue.
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Lorna said:
A very thought provoking post Yvonne. One of my friends recently lost his wife to cancer and I know he is struggling with the terminology re her ‘battle’ with cancer for their sons.
I was just about to ask if you knew of Marie’s blog when I saw the link to her post and put 2 and 2 together. Did you find my blog via Marie’s or is it one of life’s huge coincidences? (Did you know that Marie and I are business partners on Write on Track?)
Yvonne said:
Oh thanks, Lorna! So sorry to hear about your friend – I cannot imagine how difficult that must be for him and his family. Such a cruelty.
I found Marie’s blog which I think then led me to yours. Then of course I realized that the pair of you are “serial bloggers!” I love Write on Track and all your social media tips … as Marie will tell you, I am still learning and might know enough only to be dangerous 🙂
My lovely map arrived from gdlane on Saturday and is framed and on the wall already. Love it.
Ali said:
Great post Yvonne. when I actually started reading it, I realized I cannot stop, and it actually brought me to a point that I started to think about the life of those who are diagnosed with cancer and put myself in their shoes; something I have never done before…
Yvonne said:
Thank you so much. Those first steps in someone else’s shoes is where compassion begins I think . . .
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