Metastatic Breast Cancer in Social Media
A mid-January 2014 storm of reaction to posts in The Guardian and The New York Times about a prominent breast cancer blogger took me by surprise. As a nurse and a breast cancer blogger myself I wondered why the reactions were so strong. My conclusion was that it is because blogging while living with an ultimately terminal disease challenges society's thinking about death and dying. People with metastatic disease live longer these days, and as nurses we should be creative in finding ways to support them in their social needs.
During the second week of January 2014, there was a small Internet storm regarding blog posts written by Emma and Bill Keller for The Guardian and The New York Times, respectively. The Kellers wrote about Lisa Bonchek Adams, a very well-known breast cancer blogger who last year was diagnosed with Stage IV disease after having been in remission for over five years.
Ms. Adams tweets and blogs frequently about her day-to-day experience as a forty-something mother of three young children who also has metastatic breast cancer. The Kellers' posts came across to most people as very negative, as labeling Adams' social media activity as poor taste, TMI (too much information, over-sharing) and undignified, and as comparing her readers to gawkers at a car accident. Emma Keller wrote: "Should there be boundaries in this kind of experience? Is there such a thing as TMI? Are [Lisa Adams'] tweets a grim equivalent of deathbed selfies, one step further than funeral selfies? Why am I so obsessed?"
In addition to being a health care professional, I am also a Stage IV breast cancer patient, and I publish a blog about my experience, so I followed the developments closely. I tried to understand why such strong negative feelings had been aroused and why I was reacting to them so strongly.
Then it came to me. Those of us who use social media to talk about our life with terminal illness are defying categories. Social media is supposed to be for active people who eat in restaurants and play with their pets and attend sporting events and go to professional conferences, right? People with terminal illness are supposed to rest quietly in darkened rooms or lie sighing on a chaise longue on the porch or smile bravely as they murmur a few words to their nearest and dearest, right?
Perhaps the discomfort expressed in the Kellers' posts is a reflection of society's discomfort with death and dying? People like Lisa, people like me, cause discomfort to some because we bring our experience out of the sickroom and into the full light of day. We cause discomfort to some because we are living, living with full knowledge of our impending death, living in pain and with disability, but living as fully as we can while we are dying.
People like me write because we are writers. Should we stop writing just because we are nearing the end of life? Should we forego the social interaction that is made so difficult by our physical condition but is facilitated through the new media? Should we lock ourselves away in a figurative darkened room so as not to chance disturbing the hale and hearty with thoughts of death? This is a social issue and an eschatological question (in the larger sense). Our writing is an expression of our humanness, of our being as a social animal.
Nurses support and encourage physical, mental, emotional and spiritual wellness. The phenomenon of some people living for several years with metastatic cancer is relatively new, and it brings with it new challenges. Advocating for our patients in terms of pain control, ADL support, cognitive support and spiritual needs is part of our training and our traditional role. Perhaps we need to look at new and creative ways to advocate for our patients' social needs, as well.Last edit by Joe V on Nov 4, '16
About Retired APRN
I am a PMHNP who had to take medical retirement due to Stage IV breast cancer; I am entering my tenth year since the mets diagnosis. My personal breast cancer blog is at www.tellingknots.wordpress.com.
Retired APRN has '35' year(s) of experience and specializes in 'Psychiatry, Mental Health'. From 'Jerusalem'; 61 Years Old; Joined Oct '13; Posts: 217; Likes: 677.Jan 22, '14Thank you for writing this and sharing your experience, I too find writing therapeutic so I understand completely.Jan 22, '14You should not stop writing. I do think that our society is too removed from the realities of terminal illness (and even serious illness), dying, and death. I think that it would benefit our society to be more acquainted with these realities...I think with such knowledge that folks would be better able to participate with their loved ones (or themselves) and also, perhaps, make more informed decisions. I think it would also lessen fear in the long run. I have not read the articles you mention, but wonder if fear is what is behind them.
Keep writing and sharing.Jan 22, '14
I have late stage ovarian cancer, currently in remission, but I have written blogs about my experience. I don't understand this couple's problem; if they think it's inappropriate/TMI/whatever, then they should find something else to read.
As a fellow cancer patient, you are in my thoughts, Retired APRN.Jan 22, '14I personally believe that we, in modern society, have forgotten how process and accept death and grieving. We lack social constructs and choose to introduce our children to the concept of death via media in which death is temporary, a minor inconvenience, and easily rectified by simply starting over with a click of game controller button. As a whole, we opt to turn a blind eye to the inevitable and even phrase things in a way that makes the concept of death and illness seem...well...fluffy: e.g. You only live once.
You live every minute, every day.
You only die once (resuscitation efforts notwithstanding). There is a difference.
We no longer have ritual. At one point in time, life expectancies were much shorter and certain diagnosis meant mere days. For gods-sake, my great-grandmother's handwritten recipe book has a "Wake and Funeral" section of various dishes which were prepared for the family of loved ones or various other members of the community whenever hardship struck.
As another point, for many, the concept of grief is foreign and frightening. I have several co-workers who have yet to lose a loved one and are petrified of the day when it happens. Even more of them have absolutely no idea what to say or do whenever news of a death reaches them. I wish I could say many do not offer idle, meaningless chatter to the bereaved, but that would be a lie.
I believe society has chosen to squirrel away the concept that life is not always roses and I applaud any who, through their words, bring reality back into focus. It is in your voice we may find strength, hope, and an understanding. Through your writing, we may share the path with you and embrace the journey of a fellow human. It is through your words we may find ourselves.
If your words make someone uncomfortable, it means you made an impact. It means what you had to say created emotions which must be confronted, dealt with, and will hopefully create personal growth.
So no, my friend, do not stop writing. Refuse to vanish. Keep on keepin' on.
"Though wise men at their end know dark is right,
Because their words had forked no lightning they
Do not go gentle into that good night.
Do not go gentle into that good night.
Rage, rage against the dying of the light."
~~CheesePotato~~Last edit by CheesePotato on Jan 22, '14 : Reason: Dropped my sandwich on my keyboard. So....much....mustard....Jan 23, '14I have not heard of Lisa Adams before. I checked out her blog and I think it's a good blog, probably very helpful for the author and her many readers.
However, I wonder if your assessment of society's attitude towards sickness and death is reading too much into Kellers' opinions? Blogging is a personal journal that's open to public, and a self-promotion in a way. Dealing with cancer (or any other life-altering situations) is extremely personal, and some may view social media as trivializing and therefore inappropriate for such grave matters. I think it's just a reflection of their opinion of how social media should be used, rather than the societal denial of sickness and death.Jan 23, '14As a nurse and a sister of a leukemia patient now in remission I actually want to thank those who share these deeply personal experiences with the world.
Most of the time they start for purely practical reasons (a common place for family and friends to hear the latest) and then friendships are formed..newly diagnosed feel less alone, new research info disseminated.
I remember when Dr Keith Ablow made similar comments about Farrah Fawcett when she made her documentary about rectal cancer. Those who want to stifle the free discussion of a topic rather than just not read it are the ones who have problems, not the bloggers.Jan 23, '14Write away!!!!
As with any and all media, we ALL have the option to turn it off.....I do that a lot, especially in election years!!!
and BTW, thanks for sharing!Jan 23, '14I do have some reservations about the way people put out their medical conditions on social media for all to see, but what makes me scratch my head is facebook selfies right after waking up from anesthesia, or anorexic girls posting photos of themselves with feeding tubes... Those kind of thing makes me wonder "why?" It's a grotesque form of narcissism.
As for blogs where you share your thoughtful reflections on illness and struggles, on the other hand, I say we need more of those on the internet than all those endless rambling blogs on outfits or makeups. It is an evolving medium of expression. The diversity, or the freedom with which one uses it, is the ideal of the cyberspace after all.
And I personally thank you bloggers who share your experience with cancer. Working on a hem/onc floor, the idea of cancer and the treatment process become an ordinary, daily routine. Reading the first-hand experience from the patients' perspective reminds me that nothing I do to them is ordinary, daily routine.Jan 23, '14Thank you for sharing and speaking out. I think hearing about long term survivorship is encouraging and hopeful. God bless you, you are in my prayers!Jan 23, '14I'm perplexed by the constant over sharing on social media, the selfies, the constant status updates ,tweeting, whatever else is the thing right now. I can't believe that other people actually READ most of this crap. I am not the kind of person who would share the kind of details the writer of the blog is comfortable sharing and as someone else said I can read it or leave it. I have a problem with what I see as the romanticism of certain types of cancer, breast cancer in particular and I know others do feel the same way. We are certainly a minority but maybe that factor may contribute to the strong feelings some people have in this situation.I don't mean to upset anyone-let me say that I lost both of my parents to cancer....Jan 23, '14thank you for you post, No one is forcing anyone to read anything and some find peace I sharing a journey.Jan 24, '14I'd just finished up tonight's post over on my own website when I came across this piece.
While I'm nowhere as well-known as Lisa Adams, as the writer of a mental-health blog I feel a kinship with her and with all who share their struggles in a public arena. It's OK if people choose to read or not read our stories; the thing is, telling those stories makes US feel better, and they're out there to help others as well. There are few things as gratifying as seeing a reply from a reader that says something along the lines of "Thank God, somebody out there gets it! I'm NOT alone!!"
My thoughts are with you, OP. At the present time, my husband is battling a stage IV neuroendocrine tumor with liver mets, and I'm grateful for every single day I have with him. I hope you have people who treasure you and are glad you're still here.
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