The Power of Patient Blogs: A Window Into the Lived Experience

“Patient blogs reveal the true extent of the impact of cancer on finances, work practices, family life…they offer a window into the lived experience of the patient.”

~Marie Ennis-O’Connor

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When you are 34 years old, lecturing and working in Public Relations and Marketing at a University, you aren’t thinking about cancer.  Yet in 2004, Marie Ennis-O’Connor suddenly had to.  Her life changed with her diagnosis of breast cancer.

In a recent post on the International Journal of Public Health website, this Irishwoman writes, “A cancer diagnosis is not just a single event with a defined beginning and end, but rather a diagnosis [which] initiates a survival trajectory characterized by on-going uncertainty, potentially delayed or late effects of the disease or treatment, and concurrent psychosocial issues that extend over the remainder of a person’s life.”

The uncertainty, delayed effect of the disease or treatment and the possibility of recurrence are all part of the limbo that cancer patients experience after treatment.  “People think your story ends the day you walk out of hospital after your last treatment, but in many ways it is just beginning.”  This aspect of survivorship is not understood by people who have not had cancer, e.g., family, friends and especially health care providers.

And this is Ms. Ennis-O’Connor’s passion–to change  the  care that cancer survivors receive. “There is sometimes a code of silence about what happens after cancer treatment ends.   I wanted to break the silence and provide a safe space for cancer survivors to share their experiences after cancer.   There are good things, but there are also times of grief, loss and confusion – I want those stories to be heard.”

Ms. Ennis-O’Connor suggests that healthcare providers need to change the way they  care for cancer survivors.  She believes that the blogosphere is a place for providers to begin to understand survivorship. “Patient blogs have huge potential to inform healthcare practice.  Patients’ own narratives shed light on cancer’s social impact on the individual, family and society, often in a manner that illustrates in profound and evocative terms… a window into the lived experience of the patient.”  By reading these blogs, health care providers can attain an appreciation of life with cancer from diagnosis through survivorship.   “Perhaps they [healthcare providers] will discover gaps between what they assume patients think or feel and what we actually do think and feel.  [Blogs] can be a valuable tool to close the communication gap that can exist between patient and doctors and healthcare practitioners. “

Ms. Ennis-O’Connor started her award winning blog in 2009.  Now  Journeying Beyond Breast Cancer has over 600,000 views and over 4000 followers.  “Writing my blog has been the single most empowering thing that I have done in my journey with cancer,” she says.  But the blog has been much more , it has brought people together.  As fellow blogger, Anne Marie Ciccarella states, “[Marie] introduced my blog [Chemobrain, In the Fog with AM from BC] to many bloggers…[The] Breast cancer community was facilitated by ‘Journeying Beyond Breast Cancer.’ Every Friday [Marie] wrote a “Round Up” and SHE brought an entire community together.”  Ms. Ennis-O’Connor has written this weekly review of blog posts in the breast cancer blogosphere since late November 2010.

Screen Shot 2013-02-04 at 3.31.36 PM“[Blogging] has enriched my experience, brought new friendships into my life and expanded my horizons like nothing else,” Ms. Ennis-O’Connor states.  Indeed, she is a board member of Europa Donna Ireland –  The Irish Breast Cancer Campaign , an advocacy group that is one of 46 EUROPA DONNA member countries across Europe. She has become the social media manager of the newly formed Dublin chapter of the Global Health 2.0 movement and she has just started the first breast cancer social media chat on Twitter in Europe #BCCEU. 

According to Ms. Ennis-O’Connor the benefits of blogging are numerous.   “Blogging increases social support, self esteem and empowerment.  Blogs offer an online place for expression of emotion, [and] information exchange…Blogs bring about a sense of community. Blogs make you feel like you’re not alone, that someone else understands what you are going through.”

During cancer treatment, there is a plan and significant support from family and friends.  But “when my cancer treatment ended [the] full impact of what had happened hit me –[I] needed more support,” Ms. Ennis-O’Connor states.   Yet there was little information on the chat forums and websites about the “limbo” in which she found herself.   Integrating the experience of having cancer and surviving it is something for which patients are not adequately prepared.   Now, at least, there are blogs that describe the experience, led by Journeying Beyond Breast Cancer.  But there needs to be more and Ms. Ennis-O’Connor is an activist working toward that end.

“Cancer can be frightening and lonely,” Ms. Ennis-O’Connor states. “Being able to write about it honestly and connect with others is a powerful release.”  Ms. Ennis-O’Connor turns to a favorite quote by Rebecca Fall to describe the importance of patient blogs.” ‘One of the most valuable things we can do to heal one another is to listen to each other’s stories, ’”she quotes.  “Patient blogs represent the complex and widely diverse range of cancer experiences. Sometimes just the very act of having our story heard and acknowledged can go a long way towards healing.”   

*Based on #hchlitss twitter chat and email communications.

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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)