culture: the integrated pattern of human behavior that includes thought, speech, action, and artifacts and depends upon the human capacity for learning and transmitting knowledge to succeeding generations Merriam-Websters.
The first Sunday in June is set aside as National Cancer Survivorship Day.
It is described on the website as “an annual, worldwide Celebration of Life,” as “a day to unite together in a show of solidarity of collective cancer survivorship.”
Yet how do people who have cancer feel about this day? A large number of bloggers have answered that
question. Yvonne Watterson of Phoenix Arizona is one of those bloggers. She is part of a large cyber community, bloggers and twitter activists who tweet with the hashtag #bcsm. “I have been educated by amazing bloggers. I knew nothing of metastatic cancer until #bcsm.”
With no family history, negatives on all her mammograms, and a love for fruits, vegetables and exercise, Yvonne was caught off guard by her diagnosis of breast cancer on November 11, 2011. As she states, “I used to complain about the pace of life as a woman trying to play equally well the parts of mother, wife, friend, and boss.” Not anymore. And since that day she has written about her experience on “Time to Consider the Lilies.”
One of her fellow bloggers is Marie Ennis-O’Conner. In Journeying Beyond Breast Cancer The stimulus for this posting was the media’s coverage of Robin Gibbs death ‘Robin Gibbs lost his long battle with cancer.’ In Why Words Matter, she asked other bloggers the question, “Do you feel the exclusivity of the term survivor focuses attention upon those who are living, essentially erasing those who are dying from the disease?” Yvonne took up the challenge to try to write about the language of cancer.
These women with breast cancer are trying to bring awareness that the terms, “battle,” “winning,” and “survivor” are all the part of the language of the cancer culture. As Yvonne states, “Language is inextricably tied to culture,
and a definite cancer culture has evolved with a language all its own…There are so many messages out there suggesting that perhaps I chose to take on a battle and then did something to defeat an opponent.” One of the most unsettling aspects of the language of this culture is the exclusion that so many feel.
Yvonne believes the media treats breast cancer differently. “…Breast cancer…has been sanitized by [the] media. Too many pink euphemisms, myths and war metaphors are attached to cancer. Is this a concerted effort to conceal the reality of it?” Yvonne asks.
“I almost cried when I read Marie’s words about [erasing those who are dying],” says Yvonne. “It reminds me of a post I discovered by someone identified as Kelly K. Here it is:
“With no family history, no positive genes, I was diagnosed with stage III lobular triple positive breast cancer at 29 and mets [metastases] at 30. That year my oncologist practice selected me to be honored at a Komen luncheon. I spent a few hours …being interviewed for a video..[Komen] do[es] about the honorees’ breast cancer story…. Komen edited out every reference to my mets in the video….If that isn’t pink washing, I don’t know what is…”
Setting aside a day for “survivors” may seem innocuous to some but not for many in the breast cancer blogging community. As Yvonne points out, it “seems so insensitive and disrespectful to those who have been killed by the disease or those who are unable to live without being shackled to it.” For clarification Yvonne explained that the word “’Survivor’ …seems to focus on a stage of the disease that is more ‘socially acceptable.’ The often harrowing stories of those who are living with metastatic breast cancer are rarely publicized by mainstream media.”
In addition to erasing the fact that breast cancer spreads in 30% of those who are diagnosed, integrated in the culture of breast cancer is “a wholly dreadful expectation that you should be more cheerful if you got the ‘good’ kind of cancer.” Likewise guilt is part of the cancer culture. “‘Prevention’ is wrapped up with ‘surviving’ and tends to make me think I could have done something to prevent the diagnosis.”
Somehow those with cancer must be like the contestants on the reality show “Survivor.” They must outwit, outplay and outlast cancer. Second guessing themselves is the fate of those living with this cancer culture. “I am still indignant about cancer showing up in my life and I am afraid of it progressing. Before the diagnosis, I hadn’t given it a second thought … it was the thing that happened to other people, perhaps women who missed their mammograms or who had a family history, but not to me. Why me? And so I go back to thinking I may have caused it, which I know makes no sense whatsoever, but I can’t help it.”
So what word does Yvonne believe encompasses why one person has cancer and another doesn’t or why one person’s cancer spreads and another’s doesn’t. “I don’t know the “right word” for those of us ensnared in the complexity of cancer. But it seems more to do with ‘luck.'”
In her post,“he not busy being born is busy dying,” Yvonne draws parrallels between avoiding the reality of cancer and escaping the “troubles” in Northern Ireland. “I relate my experience with cancer to growing up in Northern Ireland. We didn’t live in fear every minute but knew we were lucky.’Devices of Detachment’ by Damian Gorman explores how Northern Ireland’s people distanced themselves from
violence. Seems we do same with cancer.”
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.
#BCSM and the blogger community have been a lifeline for Yvonne. “Were it not for this online community, I know I would be quite lost in the culture of breast cancer.”
There she has support and a place free of cancer culture expectations, “I am so grateful for the solidarity and the safety I have found within the blogging community. I think we all cry out ‘Why?’ and our collective attempt to see that this question is answered is powerful. I believe we are unified in our search for answers to questions we are afraid to ask within a world that seems to ‘celebrate’ those who drew the long straw… But, for me personally, saying I survived cancer would be like saying I survived growing up in Northern Ireland. I would never say that. I would say that I was just luckier than others.”
“Consider the lilies, how they grow: they neither toil nor spin; but I tell you, not even Solomon in all his glory clothed himself like one of these.” (Luke 12: 27)