Among the Metavivors: Social Media and Illness Narratives of Stage IV Breast Cancer Patients

Abstract

Dominant breast cancer narratives equate early detection and screening with “cure,” advocate for “awareness,” and identify women who undergo treatment for early stage disease as “survivors.” Left out of these narratives are the “metavivors”: women and men diagnosed with “incurable” metastatic breast cancer, also known as Stage IV. This article uses case studies to . . . → Read More: Among the Metavivors: Social Media and Illness Narratives of Stage IV Breast Cancer Patients

#BreastCancerRealityCheck

On Saturday, October 7th, there was an hour-long twitterstorm – #BreastCancerRealityCheck – dedicated to the following:

Move beyond superficial “raising awareness” to focus on more education and research that will SAVE LIVES Dispel the myths about prevention and early detection Reveal the candid realities of people (women and men) living with ALL stages of . . . → Read More: #BreastCancerRealityCheck

The Lives They Lived: Lisa Bonchek Adams

“The Lives They Lived: Lisa Bonchek Adams,” by Elizabeth Weil, The New York Times, Dec. 23, 2015.

She taught us how to die.

Death presents a problem every time. Everybody’s a rookie, everybody’s afraid.

Lisa Bonchek Adams typed her way unto the breach. A realist, an atheist and not at all sappy, she detested the . . . → Read More: The Lives They Lived: Lisa Bonchek Adams

Breast Cancer Survivor Support and Education on Twitter

“Breast Cancer Survivor Support and Education on Twitter,” By Targeted Oncology.

#BCSM – breast cancer social media – is a dynamic online network and community dedicated exclusively to women and men affected by breast cancer. The tweetchat takes place every Monday evening at 9 pm ET/8 pm Central/6 pm Pacific in real time. Dr. Deanna . . . → Read More: Breast Cancer Survivor Support and Education on Twitter

Ferguson Shooting, Not Ice-Bucket Craze, Demands Philanthropy’s Focus

“Ferguson Shooting, Not Ice-Bucket Craze, Demands Philanthropy’s Focus” By Amy Schiller, The Chronicle of Philanthropy.

While the ice-bucket challenge did provoke some debate about philanthropic priorities, most didn’t ask the really tough questions. We should ask ourselves how nonprofits, which are devoted to improving the world and extending generosity to others, are so easily able . . . → Read More: Ferguson Shooting, Not Ice-Bucket Craze, Demands Philanthropy’s Focus

Dear Ms. Robach

“Dear Ms. Robach.” By Lori Marx-Rubiner, Regrounding Blog.

Editorial Note: President of METAvivor Research and Support Lori Marx-Rubiner writes an open letter to Good Morning America’s news anchor Amy Robach on mammography, overtreatment, “fighting” cancer, and metastatic breast cancer — in other words, the other side of breast cancer.

“Dear Ms. Robach,

What a journey . . . → Read More: Dear Ms. Robach

Writing About Breast Cancer: From Books to Blogs

Published on the Wellesley Centers for Women blog, Women = Books and reprinted with permission.

It’s easy to forget that women’s writing about breast cancer is of relatively recent vintage. But until the 1970s, the disease was the exclusive province of medical men—and their textbooks.

The first women to portray the patient’s perspective, to write . . . → Read More: Writing About Breast Cancer: From Books to Blogs

Cancer in the Age of Social Media

“Cancer in the Age of Social Media.” By Anas Younes, MD, Cancer.net.

Anas Younes, MD, is the Chief of Memorial Sloan-Kettering’s Lymphoma Service in the Division of Hematologic Oncology, Department of Medicine. He is also very active on social media (@DrAnasYounes). In this post, he explores the issues raised by the recent debate over columns . . . → Read More: Cancer in the Age of Social Media

There isn’t a ‘right’ way to die. Journalists should recognise that

“There isn’t a ‘right’ way to die. Journalists should recognise that?” By Marie Ennis-O’Connor, TheJournal.ie.

IRELAND – Bill Keller chose to write about Adams using the very words that Lisa has spoken openly about rejecting, such as ‘fighting’, ‘hero’, ‘battle’. If not unethical journalism, it nonetheless speaks to a failure in tone and sensitivity to . . . → Read More: There isn’t a ‘right’ way to die. Journalists should recognise that

Social Media Is a Conversation, Not a Press Release

“Social Media Is a Conversation, Not a Press Release?” By Zeynep Tufekci, Medium.com.

Guardian writer Emma G. Keller wrote a cancer-shaming article [archived here] on metastastic breast cancer sufferer Lisa Adams’ social media presence. It was an oddly callous piece—but that was not its only fault. Emma Keller admitted that she had conversed with . . . → Read More: Social Media Is a Conversation, Not a Press Release

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