MRF Blog

The New York Times & Cancer Survival

January 16, 2014 | Categories: Treatment
I am old enough to remember when the word “cancer” was rarely spoken, and then only in whispers. Cancer patients were victims—both of the disease and of a society that kept them isolated during a time when they most needed comfort and support.
 
Today’s headlines, in contrast, are about a New York Times editor being castigated for critiquing the decision of breast cancer patient Lisa Adams to provide live updates of her personal battle with Stage IV breast cancer via the 140-character format of Twitter. Both the editor, Bill Keller, and his wife Emma have written about Lisa’s tweets and questioned her decision to be publicly candid about her experiences and feelings. Ms. Keller, herself a breast cancer survivor, questioned the ethics of this type of disclosure and suggested the Tweets are “terminal-illness selfies.”
 
The MRF hosts the largest melanoma-focused online community in the world, MPIP, on which many, many patients tell their experiences and share treatment plans. We encourage patients to tell their stories on our website, in our patient symposia, and through our print newsletter. These bits of self-disclosure are often cathartic and therapeutic for the patient and caregivers, and also can provide comfort and support for those who read them. They underscore the critical message: You are not alone.
 
We live in a world of intrusive paparazzi, NSA spying and identity theft. Reality television has exposed us to more than we ever wanted to know about Jersey shore gym culture, the pawn industry in Las Vegas and how to get rich selling duck calls. These shows and, yes, even some blogs have a narcissistic flavor to them. As comic George Carlin noted many years ago, our magazines have moved from Life to People to Us, and are likely soon to go to Me!
 
When someone is facing life-threatening cancer, though, being self-focused is a survival trait. You must advocate for yourself. You must ask for help. You must be honest about how you feel and about your feelings. If you don’t do these things, you might lose the battle to a disease that never, ever fights fair.
 
So I say, let Lisa Adams tweet as much as she wants and about whatever she wants. If her Tweets are a “selfie” of her life’s end then so be it. To the Kellers—or anyone else—who are upset by this, here is my advice: stop reading the tweets if you don’t like them. Disconnecting from a Twitter feed is, I guarantee, a lot easier than going through Stage IV cancer alone.
 
What do you think? Share your thoughts in the comments below.
 
 
Written by Tim Turnham, the MRF's Executive Director

Comments

Tracy Welge - (1/16/2014 - 10:25am)

How ironic for a news editor to critique someone about their tweets.  She has the freedom of speecch to tweet whatever she'd like and doesn't that right give him job protection as an editor?  I think it's awesome that she is using Twitter to voice her story. It is a good outlet for her and it may provide support other warriors may need who are going through the same thing. 

I loved Tim's last line, "Disconnecting from a Twitter feed is, I guarantee, a lot easier than going through Stage IV cancer alone."

HopefulOne - (1/16/2014 - 10:29am)

I love your simple advice: stop reading 'em if they offend you. How cruely insensitive of the editor and his wife to dictate how someone going through this journey should behave. How easy to throw stones when you're not the one going through something like this.

Candi Warrington - (1/16/2014 - 10:35am)

Tim, you are right on in your comments. Why do people insist on governing other people's comments or blogs? If you don't like it don't read it, delete it, unfriend them. Whatever but you have no right to dictate what they say. As a Mom who survived the loss of our son to Melanoma, I would not have survived had it not been for the MPIP. The people there kept me going and listened to me, many are still friends 15 yrs later. People stop thinking only of You, think of others and what they need.

jwaterbury - (1/16/2014 - 11:06am)

Perfectly said!  Thank you for writing it in such a clear and concise way.

It is a person's own decision how much they want to share & with who they want to share it.  Some people choose to be more private with their journey and some people choose to share more publicly.  That is THEIR CHOICE and if a person does not want to support that choice, then don't read it!  It is as simple as that.

My late husband died at 38 years of age due to melanoma. We were told one day after our 9 year wedding anniversary about his diagnosis and he was given a year at the most to live. We dealt with the surgeries, treatments, hospital stays, and grief together for 9 months until he died June 30, 2009. During the 11 months he was undergoing all those treatments I posted on the Moffit Cancer centers' site where we could have family and friends constantly be updated in one forum about what my husband, David Blake, went through and what I was going through. It was cathartic and I even made copies of the enter posting to keep for our son Nicholas who might one day want to know what we went through. Everyone should be able to have an outlet for their grief, anger, and just basic confusion that they deal with each and every day they are going through treatment for their cancer. So what if she is doing it to possibly leave a memorial of herself to others. Don't we all want to go out of this life knowing and thinking that they left some sort of important stamp on it. We leave our imprint on our family and friends and even strangers and what you may not think works for you may actually work for someone else going through the same or similar ordeal. What I find offensive is when killers and psychopaths get more attention and entertainment value out of their life stories and yet they took a life or many lives and now we get to see documentaries and what not about them all the time. People who complain about someone like Lisa with cancer doing what she is doing should stop wasting their time on that and worry more about what is important and that is live your own life and stop trying to control others' lives.

For 20 years my husband, a stage 4 survivor, and I  have been facing cancer and it's residual effects on our psyche as well as the physical and emotional scars it has left.  Two decades ago there we no outlets for us to share our story or to find support. It was a cold, callous, lonely world that was a virtual chasm of medical journals and foreign studies to navigate alone.  Thank God for the internet, for the MRF web site, to twitter and all of the cancer support and resources available today.  

No longer must people suffer in silence and shame alone. For anyone to begrudge another human being support during a time of crisis is not only distasteful, but also alarming.  We as humans must find it our duty to support those in need, and being a cancer patient or caretaker certainly qualifies as being in need. 

At the end of the day I say Lisa is a crusader, as are all of us who refuse to fade into the background in quiet desperation. Yes, we are your family, we are your coworkers and neighbors. We are the outspoken survivors reminding you of your own mortality.  We are fighting the good fight for funding, support, education and treatment- and we are making strides for ALL those touched by cancer!  Rally my fellow survivors and champions, for when cancer is only a chronic condition, and when the death rate has dropped to near zero, then and only then should we accept such an attitude as that from the Keller's!

Prayers for Lisa Adams and continued support. When my husband was diagnosed with melanoma , I found comfort reading blogs and gaining insight.  

Kristin Arnone - (1/16/2014 - 3:18pm)

I survived Stage IV Melanoma in large part due to being able to share my story via social media and ask people to pray for me!!!  Also, knowing that i was not alone in my battle and being able to read others' stories of hope was a HUGE blessing to me.  The complainers obviously have too much time on their hands and need to find something to do OTHER than bashing a woman who is fighting for her life.  I say tweet away all that you want, Lisa, and may God bless you!!!!

People need to share their story if they want to.  I am a Stage IV survivor and have started sharing my story on my blog on Wordpress at mcreyscope.com.  I think that, with the people around me supporting me, it helps to sit and write and reflect upon the journey.  I have been through a lot over the last six years and I am certain that I face a tough road ahead.  If sharing my journey helps just one person be able to better survive their experience, then the work is worth it.  So, I say to this person, tweet all you want.  You have earned it and who knows how many it may help!

Tim--MRF - (1/17/2014 - 9:51am)

I love this dialog, and thank each of you who have posted comments. Candi, your comment on MPIP could be echoed by many, many people I am sure.  I know for a fact that your telling your story and your engagement in the stories of other patients and families has helped countless people make it through the melanoma experience.

Tara, your perspective is striking to me--reflecting on the isolation you experienced two decades ago.  One of the saddest patient stories I can recall is a Stage IV patient who was diagnosed just after moving to a new city.  He was in his early 30's, had no family, and knew no-one in town.  He would take a cab to chemo appointments, and come home from surgery with no-one to help him. He finally connected with an online community who followed his story, offered support and advice,and ultimately identified some local volunteers who would visit him and help out.

Dawn, your story reminds me of a woman I knew who was diagnosed with Stage IV cancer one month after the birth of her only child.  She was given six months to live, but made it through two years.  She spent that time capturing the things she wanted to say to her daughter. She created a video with advice for the first day of school, for when she became a teenager, for when she went off to college, for when she was married. Leaving that legacy behind is a wonderful gift.

I don't know Lisa, but appreciate her telling her story. It will help people in ways she cannot even imagine. This is a good chance, too, for me to thank each of you for sharing your insight and your story. I routinely hear from patients who say, "I have never posted anything, but I read MPIP all of the time and it has given me hope, advice, and comfort." We never know when our words will reach out to a stranger and say just what they need to fight longer, harder, and smarter.

Tim--MRF

coleen shurmer - (3/6/2014 - 8:20am)

my husband saw his gp in sept 2012 with a mole on his back it was partly black, partly a raw pink and intermittently bleeding, his gp told him he was quite happy with it, i was not but my husband said, " he is the gp he should know what he is talking about, i eventually persuaded him to go back and see a different gp but this was 6 months later, he reffered him to a dermatologist, it turned out to be a malanoma, by august 2013 it had spread to his lymph nodes these were removed in the sept, sadly by oct it had spread to his abdomen, bowel and spine, to his familys great distress he passed away early february 2014, he had suffered greatly during this time, his family are absolutely distraught, we feel if he had been reffered when he first saw his gp in sept 2012 we would still have this wonderfull husband and lovely father and grandfather here now, he was looking forward to enjoying his retirement with his family after working so hard and putting money aside for it never to enjoy,we feel we were greatly let down, i wish we had been aware of what an aggressive cancer this is, was his gp not?

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