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The “Double-Kellering Effect” & the Tip of the Iceberg

Ever since the firestorm started over the “Double-Kellering” (a term I’m borrowing from my friend ChemoBabe) of Lisa Bonchek Adams over a week ago now, I’ve been thinking about some of the additional various issues and angles there are to this story. Perhaps this is a far bigger story than two journalists bashing one woman with metastatic breast cancer and her tweeting habits. Perhaps we’ve only reached the tip of the proverbial iceberg. 

In my mind anyway, this story has become (and actually always was) about so much more. In fact, I’m even beginning to wonder if in the long run, the Kellers didn’t do us all (except for Lisa Adams of course) a favor because as I attempted to point out in my first piece about their articles, there are important issues raised here that merit further discussion. Both Kellers totally missed the mark. But perhaps some good can come of it now – further discussion about some of those issues.

I’d like to think that Emma Keller was hoping to open up discussion about one or two of those things in her original piece which again, has since been taken down, but she went about it completely wrong. You can click here to read an archived version of Emma Keller’s piece via Breast Cancer? But Doctor…I hate pink! (thank you, Ann) because things never really disappear on the internet. Something all of us should keep in mind. Yikes! Or not…

I am in no way, shape or form excusing Emma Keller. Both Kellers screwed up big time. And now after the fact, they seem to be continuing to profess that they were misunderstood. Well, an awful lot of people “misunderstood” in much the same way. The Kellers’ denial seems like classic “not taking responsibility for my actions” kind of logic.

I’d like to share my list of some of the issues this whole debacle has stirred up, in my mind anyway. And no, they are not in any order of importance. And by the way, I thought about trying to include links to some of the well-written pieces about all of this out there, but decided I better leave that task to others. A good organizer I am not. I can barely organize my own ramblings, much less anyone else’s. For starters, you can check out this list put together for the Breast Cancer Consortium’s site.

Some of the important issues stirred up for further discussion as a result of the “double-Kellering effect” might be:

  1.  The ever-rising influence of social media

  2.  The rise of the e-patient movement

  3.  Palliative care vs. hospice care (not the same thing)

  4.  TMI (too much information) – can a person share too much on the internet, or anywhere for that matter?

  5.  Health care disparity

  6.  Cancer language, more specifically, the use of war metaphors when describing anything about cancer eg. heroic measures, battling cancer, war on cancer, brave, warrior, fighter – the list goes on and on

  7.  Ethics in journalism, blogging, social media and anywhere we communicate publicly

  8.  Why society seems fixated on the smiley-face-pink-parade kind of breast cancer story representations (this one really gets me)

  9.  Reality of metastatic breast cancer and bringing it out into the open – why is there such resistance to talking about it?

10.  Social media etiquette – do manners matter on Twitter and elsewhere?

11.  Society’s invitation and acceptance to “live out-loud,” and at the same time encouragement to keep pain, suffering and certainly anything about death or dying quiet – a double standard of sorts

Undoubtedly, there are more things to add to the list. And yes, I’ll be addressing some things on this list in the near, or not so near, future.

What are your thoughts – can some good come of all this?

What might you add to this list?

Iceberg in Blue Antarctic Waters

 

31 thoughts to “The “Double-Kellering Effect” & the Tip of the Iceberg”

  1. Good list, Nancy. I’m still letting it all filter out. There are lots of implications in this entire experience. But when I get up and go to work each day to see my own patients, what matters most to me is to endeavor to help them sort out their problems, ease their symptoms, and tangibly improve their quality of life. Which is what Lisa’s healthcare team has no doubt been endeavoring to do, amidst the great challenges inherent in treating a person with mets. And I fervently hope they succeed. At the end of the day, that’s what will give her more time to live her life and keep sharing her perspective with us all.

    1. Kathi, I agree there are many implications… that’s what I’ve been trying to stress from the start. Your endeavors to help your patients are greatly appreciated I’m sure. Yes, I hope Lisa’s team can meet the challenges and succeed at giving her more time too. The thing is, everyone with mets, or any disease/condition deserves the same. Thanks so much for reading and commenting.

  2. Oh good list. The more I think about this, and I am thinking about it a lot, the more I think about just how many issues are involved in the wider debate. One issue I would add to this list is whether a man would have received the same disapprobation? Author Corey Robin has pointed out that Bill Keller referred to Christopher Hitchens as “ dying of esophageal cancer, a fact he has faced with exceptional aplomb.”

  3. Excellent list of questions!!!! I’m personally irritated about the palliative care thing. In the midst of writing about that…..

    Nice job as always, Nancy!

    Hugs,

    AnneMarie

    1. Ann Marie, Thank you! And it’s great to hear from you. Yes, the palliative care misinformation has been bothersome to me as well. I’m thinking about writing a post on it too. I look forward to reading yours. Thanks for stopping by. xx

  4. Great analysis.

    I, personally, have a lot of trouble with all the battle language. If it is a battle, when do I win? The war comparison just does not seem to fit dealing with metastatic cancer the rest of your life.

    I mentioned in a comment on a different blog that if we must use metaphors, I prefer journey. Cancer is not the journey, life is. Cancer is just a very difficult part of that journey. If cancer ends that journey, it will be just that, the end of my life journey. I will not have lost the battle!

    It is time for metastatic breast cancer to come out of hiding. When my grandmother was diagnosed, she was given a prognosis of three months and sent home with pain pills. Sadly, I don’t think the picture many people have today of metastatic cancer is much better. They don’t seem to realize it is often a repeating cycle of treatments followed by stability or remission. That we often have years, not months. A few lucky ones even get quite a few years.

    1. Elizabeth, You really put that thought together well. Life is the journey, not cancer. Cancer is just one hard part of that journey. I like that. I don’t care for the war metaphors either… And you’re so right about the need to bring mbc out of hiding. I think we’ve made some major headway, but there’s a long way to go. You’re playing a major part in this very thing by the way. Thank you for that.

  5. Thank you Nancy!
    I’m concerned about the health care disparity as you are. So many people are shut out. Universal health care would help fix that. Then we need a real social safety net. It’s bad enough to have cancer, but it’s just criminal to endure it impoverished. Those of us with the ways and means to speak up should always include the invisible.
    Human Rights is apparently a large category for me.
    xo Dorry

    1. Dorry, You’re very welcome. I agree that disparity is very real. Experiencing cancer or any illness/condition while also struggling to find, or even go without, healthcare is so wrong. It is a human rights issue. I know it’s a passion of yours. It’s one of mine as well. Thanks for sharing your thoughts, Dorry. xo

  6. I, too, have been thinking that this might not be a bad thing in the end – but what a stupid, insensitive way to get there. Very good list. Like Marie, I also am curious if reaction would have been different if the subject were a man. I so wish either of the Kellers had focused on any of those points. Bill was sort of going in the direction of addressing healthcare disparities, but just didn’t get there. It’s such a shame because that could have been a really good column.

    On a personal level, I’ve been thinking a lot about the TMI issue. Even though my blog is mostly about fitness issues for cancer survivors, I have always been completely open (sometimes frightfully so) about my own cancer. Even when I was diagnosed – back in the pre-social media days. It’s the only way I could go about it, but it does have consequences. For much of the past year I have had a bit of a love-hate relationship with the online world, feeling like maybe just too much of me was out in the world. So the issue of openness vs. privacy is particularly interesting to me.

    Thanks for writing about this again.

    1. Julie, I do think some good can come of all this, but yes, as you said, stupid and insensitive… I know what you mean about sharing TMI and sometimes I wonder if some day I’ll have regrets, but I don’t think so. It’s a fine line sometimes, but ultimately it’s the world we live in now – so much shared online. But it surely is an interesting issue. Thanks for reading and for sharing your thoughts.

  7. Great list, I love lists! And this one is needed because it helps organize all the overwhelming emotional reactions this whole mess provoked in me (and I think others). (You organized well, despite your paragraph to the contrary.)
    I think I made my thoughts about #8 known on my own blog.
    I’ve been making my thoughts about 6# know on and off for awhile now.
    It is #4, with a little of #11 thrown in, that are getting me. Over sharing has been tackled by a few bloggers, I tackled it in September when I wrote for the 2nd or 3rd time about my bafflement at strangers judging preventative mastectomy choices. Did Ms. Keller, or some of these folks making comments, really think those of us who share private info have not considered this?

    1. Cancer Curmudgeon, I’m glad you liked it then! And thanks for the compliment, though I know better… Yes, your blog post on #8 was excellent. In fact, I’m going to share the link to that post right here. I’ll just resort back to my favorite word description for that whole deal – bizarre! Thanks for sharing your thoughts here and on your blog too. http://anotheronewiththecancer.wordpress.com/2014/01/14/so-let-me-see-if-i-have-this-right-in-a-nutshell/

  8. This post is spot on Nancy. I keep wishing that the Kellers would personally take responsibility by apologizing and using their lack of understanding to bring the important topic of metastatic breast cancer in to the discussion. All Emma Keller has said is that she feels misunderstood. There is so much good that could come out of this if they would wake up and listen.

    1. Susan, Thank you so much. I don’t see a real apology coming, though there was a limp one offered yesterday from Emma Keller that I read somewhere. It’s time to move beyond their insensitive articles though, and talk about the big issues – that’s the good that can come of it. And of course, the most important one is raising awareness and understanding about mets. Thanks for contributing to this discussion.

  9. Nancy, I think the topics on your list are all very important and well worth discussing. I look forward to reading your thoughts on any of them.

    Besides the many excellent blog posts, there have actually been some good articles in the mainstream media about this debacle–it would really be something if all this could draw more public attention to the realities of mbc, and the need for more progress against it.

    1. Lisa, There has been a lot written since the Keller pieces came out hasn’t there? Frankly, I’ve had to pull back and stop reading most of it. All this attention will be great if we can focus more on the realities of mbc and garner more genuine support, research dollars and meaningful attention in general to mbc. Will this happen? I’m not sure, but I hope so. Thanks so much for commenting.

  10. dear Nancy,

    love the list! you organized it brilliantly! I really liked what CC said about the organization of all the overwhelming emotional reaction…some times that is an enormous challenge, but so helpful to be able to see and understand the deeper implications.

    much love and light,

    Karen xoxoxo

    1. Karen, I wouldn’t call the list brilliantly organized, but thank you none-the-less. I hope the conversations regarding the bigger issues continue. Thanks for your supportive words.

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