Cancer Language: Erasing Reality

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.

“Those who are dying or have died are described as ‘losing’…  I don’t think we can really choose not to be victimized by cancer. It’s an unexpected assault, defying explanation.”

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

junecaldwell.wordpress.com

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)

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Won’t You Be My Neighbor?

It’s a beautiful day in the neighborhood…

Where you live can affect your health in ways you might not be aware of.  So says a new study by Melody Goodman and her associates.  Her research focuses on health literacy and how it is related to residential segregation.

What is residential segregation?  In this case it refers to the ethnic or racial makeup of communities. Recently Reuters  reported a new study that reviewed the moving habits of over 100,000 families in the last 30 years.  According to Kyle Crowder author of the study from the University of Washington in Seattle, sixty percent of families leaving black neighborhoods moved to black neighborhoods and nearly seventy-five percent of  whites moved from white neighborhoods to another white neighborhood.   In fact, the majority of blacks, whites and Hispanics, regardless of income, continue to live in neighborhoods with residents of their own race.

Why is this important?

There seems to be a relationship between segregated neighborhoods and a variety of health risks ranging from infectious diseases to exposure to toxins (Osypuk and Acevedo‐Garcia, 2008).   For example, according to the CDC, exposure to benzene, a well known carcinogen (cancer causing toxin) is more likely among children in poorer urban neighborhoods.  Benzene is in gasoline, and is found in the air on highly trafficked streets. Since there are fewer playgrounds and sidewalks in poorer neighborhoods, children playing in the streets have increased exposure.

Access to health care is another problem.  How do you decide which doctor or dentist  to use in your community?  You ask your family, coworkers, neighbors, trusted others and get a smattering of stories about their experiences.  Then you choose among the recommendations and try to get an appointment with that health care professional.

Since more African Americans and Hispanics have lower incomes on average than Whites, they are more likely to either have no health insurance or to be covered by Medicaid.  Additionally they are less able to pay out of pocket for services.   A domino effect results…since providers don’t receive full reimbursement for their services they are less likely to locate their practice in minority communities.  (Bronstein et al., 2004)

When physicians and nurses live and work in your community, there is more of a chance for informal connections with them.  This increases the amount of  health information available in the community just because there’s a nurse or doctor or dentist in the neighborhood answering questions, (Cornwell and Cornwell, 2008.)  In poorer communities without health professionals there is less available health information.  With less informal contact, trust may be impacted.  Among African Americans and Hispanics studies find that there is lower rates of trust of health care providers.

Additionally with fewer health care resources, African-Americans and Hispanics are more likely to turn to community health centers or hospital outpatient departments and emergency rooms (Gaskin et al., 2007, Lillie‐Blanton et al., 2001).

So we come full circle.  Goodman and her colleagues looked at health literacy, or the degree to which a person can obtain, process and understand health information and services to make decisions.  Lower use of preventive services, poorer management of diabetes and other chronic diseases and more hospitalizations are associated with lower health literacy. When Moody and her associates looked at a diverse sample of patients at a community health center, they found that, no matter their race, ethnicity, age, education or even country of birth,  those patients who said they had attended a mostly white junior high school or were living in a mostly white neighborhood were more likely to have adequate health literacy than those who did not report either of these factors:   where they lived and where they went to junior high school impacted their health literacy.

Would reimbursement changes affect the living and working decisions of health care providers?  Could health literacy, taught to all, from elementary through high school, make a difference?

Won’t you be my neighbor?

Something to think about, don’t you agree?

From:

Melody S Goodman, Darrell J Gaskin, Xuemei Si, Jewel D Stafford, Christina Lachance and Kimberly A Kaphingst, Self-reported segregation experience throughout the life course and its association with adequate health literacy, Health & Place, http://dx.doi.org/10.1016/j.healthplace.2012.04.010

Other citations mentioned in Goodman, et.al.

BRONSTEIN, J. M., ADAMS, E. K. & FLORENCE, C. S. 2004. The Impact of S-CHIP Enrollment on Physician Participation in Medicaid in Alabama and Georgia. Health Services Research, 39, 301-318

CORNWELL, E. Y. & CORNWELL, B. 2008. Access to expertise as a form of social capital: An examination of race-and class-based disparities in network ties to experts. Sociological Perspectives, 853-876.

GASKIN, D., DINWIDDIE, GY, CHAN, K, AND MCCLEARY, RR 2012. Residential Segregation and the Use of Healthcare Services. Medical Care Research and Review, 69, 158-175

LILLIE-BLANTON, M., MARTINEZ, R. M. & SALGANICOFF, A. 2001. Site of medical care: do racial and ethnic differences persist? Yale J Health Policy Law Ethics, 1, 15-32

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….

considering the lilies

“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…

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