Stage IV BC patient's blog criticized in Guardian and NY Times

LittleMelons

This article appeared in the Toronto Star today about opinion peices in the Guardian and New York Times written by Emma Keller (Guardian) and Bill Keller (the Times).  http://www.thestar.com/life/health_wellness/2014/01/17/cancer_blogs_valuable_service_or_tmi.html

Emma G. Keller's piece apparently questioned whether the posts by a blogger with Stage IV BC, Lisa Bonchek Adams, amount to a "deathbed selfie". "Should there be no boundaries in this kind of experience?" Is there such a thing as TMI?" she wrote.

It is not possible to read Emma Keller's original piece in the Guardian as it has been retracted "pending invesitgation" due to the huge backlash it generated. I personally find her opinion unbelievably mean-spirited and wonder why the Guardian would publish the piece, other than to support its policy of free speech. Here are the online comments of people responding to the article:http://www.theguardian.com/commentisfree/2014/jan/08/lisa-adams-tweeting-cancer-ethics#start-of-comments

Her husband, Bill Keller, then followed up with a related piece in the NY Times which has also generated a backlash: http://www.nytimes.com/2014/01/13/opinion/keller-heroic-measures.html?_r=0  He suggested that "Adams was taking extreme and unnecessary measures to extend her life, contrasting her choices with his 79 year old father-in-law's 'humane and honourable' decision to forgo further treatment." (Lisa Bonchek Adams has 3 young children!).

The New York Times Public editor comments on Biller Keller’s piece: http://publiceditor.blogs.nytimes.com/2014/01/13/readers-lash-out-about-bill-kellers-column-on-a-woman-with-cancer/  She says "there are some issues here of tone and sensitivity".  No debate there!

 

 

 

 

 

 

 

starbrightlyshines

Wow. What a total lack of empathy and human kindess. How Bill Keller can even compare the death of his 78 year old father (or father in law) to a Stage IV young mom with three young children is so beyond my comprehension that I have no words. I am sick that a newspaper would publish his wifes article.....and then retract it but print his article? Unbelievable.

starbrightlyshines

I kind of think this thread belongs in a different topic group. It is enough to give me anxiety. I am so greatful most people in our society dont think that way or I wouldnt be here. And I have 5 children still counting on......which wouldnt make a bit of difference to the author of those articles.

LittleMelons

I'm sorry if this is in the wrong forum.  I really didn't know where to post it.  Mods, could you please post it where you feel it is appropiate?  Thanks!!

starbrightlyshines

I admit I may be a little too sensitive, this just hits too close to home for me. I think its good that people are aware, so in that regard Litttldmelon I thank you for brining it to my, an others attention. Perhaps this is the best forum, I will leave that to the powers that be to figure that out!

LittleMelons

Thanks, starbrightlyshines.  The last thing I want to do is upset you or anybody here. It just made me so angry that major newspapers would publish something which to me is so totally lacking in compassion.  Hopefully the Mods will move this to a better spot.

YoungTurkNYC

I am incredibly upset that Emma and Bill Keller wrote these pieces, but I am not surprised that there are such insensitive (and completely clueless) people.  This reminds me of the time when a "friend" of mine and I were having a conversation regarding my fears about death and leaving my young children motherless.  She suggested to me that I am not as important to my young children as I think I am and that their lives will go on even if I die, and that she never understood why people try to prolong their lives when they are in pain or have terminal illnesses.  She said the people who try to prolong their lives are simply a burden to others. She also said she has always admired the Native American method of going into the woods when "your time has come" and you die by yourself so that you do not burden your family.  I was so speechless, I could not respond.  The fact of the matter is that no person has any right to opine as to how a Stage IV patient should or should not live her life, when they are not in her shoes.  I say this as the daughter of a Stage IV patient, and as a breast cancer survivor.  Absolutely disgusted by the attitudes of people such as Emma and Bill Keller, but I know that there are many others who actually think this way (but do not say it to the patients' faces).

starbrightlyshines

Youngturk, considering that a "friend" could be that clueless is totally mind blowing. I am sure that would be one of those times where I would be speechless as my mind is racing. A few months ago a relatives mother sat in front of me and recounted how she sat and watched her friend waste away from cancer and die. It was gragpic, morbid, and depressing. This was at my daughters high school graduation party and she was well aware that things were shaky for me emotionally and physically. We had just talked about it!! But she was too caught up in her own story to notice the disgraught expression on my face as I tried to gracefully break away. And now I have given my family strict instructions to never, ever, leave me alone with her again. She has no filter and I cant take it.

YoungTurkNYC

I am so sorry you had to be subjected to such clueless conversation starbrightlyshines.

ziggypop

One has to wonder what either of the Kellers were thinking in writing the opinion pieces they did. For them both to do so on different sides ocean seems to make it it even more indefensible & as if they have a vendetta against this woman for whatever reason. 

Why would anybody write an opinion piece about the tweets or blog of a cancer patient & her personal experiences? Are the Kellers attempting to criticize her decisions regarding her cancer treatment or her decision to write about the cancer experience in public? It seems that Bill Keller doesn't like to hear about drains and catheters, and would like the cancer experience to remain behind closed doors clean and tidy - something that you 'get' and then are gently treated for (i.e. with brand new lovely boobs) and then are done with and thereafter live cancer and trouble free (as his wife presumably did with her 'brush with cancer), or that is incurable in which case you 'accept' that diagnosis in a 'graceful' way without attempting a 'fight' (as his father in law did)? There is nothing wrong with either of those experiences and the Keller's should feel free to write about them - but they are not in fact the only cancer experiences. These experiences include trying what are often painful, embarrassing, mutilating, heart-wrenching, terrifying, procedures and medications without knowing whether or for how long they will work.

I do not particularly like the 'battle' metaphors - but I do believe that people who have cancer (as well as many other illnesses, etc. ) must summon reserves of strength, patience, and endurance that they never knew that they had. And the decision of one person to 'fight' cancer through the active searching for any treatment available is neither an explicit or implicit criticism of another's decision to reject treatment in favor of hospice care. 

Srh242

I have been following the whole story  . Very bad journali. , in my opinion .

Srh242

I meant bad journalism

Tarot

thank you so much for posting this....  

Tarot

thank you so much for posting this....    I am not terribly surprised by the response, somehow it is like my own friends and relatives who seem to believe that complaining too loudly and talking about my treatment options and possibilities is not "ladylike". Or, my personal favorite, "it's ONLY breast cancer"....

neverready

Hi ladies,

I didn't see the article, but I get the gist from the posts here, and to be honest I'm  not surprised -- not surprised at all.

I've been a lifelong member of the disability community, and I have seen so many times, articles trashing all manner of disabled and their/our disabilities ... 

I understand this, it sickens me no end, but I have done my best to step inside of this mind and get at what's going on inside people who do this sort of thing

Whether or not each woman here would or wouldn't express breast cancer as a 'disability' ... That's where we are, at least to people like anyone who would write an article like this: 

Breast cancer survivors, welcome to the world of disability

As far as the world-at-large is concerned,

This is what I find to be a bitter brutal truth (regarding the view/treatment of disability, which includes us), 

 my conclusion after watching this very sort of thing being done to so many, is that it all stems from an underlying message/theme/motivator, I've seen it so so many times

the same people who would quickly without having to think one second about it, easily and obviously agree that Nazism is bad, the same people that think themselves so evolved and advanced and educated and open-minded and would never discriminate against anyone for any reason... 

yet somehow have the ability at the same time to carry this crazy dual mind where they also actively sustain an anger, a near rage and a belief that if you can't work, you are useless, you have no right to be here, sucking up resources that could be given to people who have the potential to work

Its usually the people who 'have it all' and haven't had to experience much hardship in their own lives

(or maybe they had one encounter with one disabled person, said disabled person didn't match their misconceptions, so now they wage a personal war on us all...)

These are the type who think the reason they have it all not because of genetics or opportunities or simple luck, 

These are the ones that think they've had all these but because somehow they think its because they are somehow innately better, especially naturally 'worthy', that its because they naturally 'deserve' it

These are the very same people who also think the homeless are there because the homeless are not smart enough or motivated enough to want to stop being homeless, else they would, and think to themselves "Well, that'd never happen to me, *I'd* be smart enough to get out of that situation"

No matter the situation, and it all goes back to this belief that "everyone gets what they deserve in life"

and they hate. They hate the homeless, they hate the disabled, they see us as using resources, their precious tax-dollars  and medical resources should be reserved only for themselves, the working class

These are the people who come as close as they dare to using phrases like 'useless eater' as they dare...

face to face they will not look you in the eye.. they might even cross the street just so they don't have to pass you on the sidewalk.. 

They also think everything is based on 'deserved-ness" these are the people who actually think people are homeless because the homeless are simply not smart enough or motivated enough to stop being homeless..

Same for poor people.. poor out of deservedness.. 

because they must simply be too ugly to stupid, too lazy, etc, surely far too innately inferior to themselves

The elderly, the homeless, anyone who either never had or who has lost the promise of being able to work -- they're hating on us, hard.  This is why they think nothing of bashing a stage IV cancer patient.

All I can say is this (unless they get hit by a bus or something first), 

one way or another all these flying-high types are going to be disabled and/or elderly at some point in their own lifetime.

One way or another --  its coming for them too (and we'll see then what happens when they have to point those nazi-notions of 'deservedness' inward at themselves). 

Karma's a bitch.

dancermom

totally agree.  What a jerk Keller is.  I don't know the details of the blog, but perhaps they helped someone in a similar circumstance know they are not alone or take some of the fear and uncertainty out of what may be in their future.  

Moderators

Hi all, just popping in here to let you know that Breastcancer.org is working on a blog post about this topic. We'll share it here with you as soon as it's live!

--The Mods

Moderators

Hi all! The NEW Breastcancer.org blog post on this subject is now LIVE. We hope you enjoy it!

Why Is Talking About Metastatic Breast Cancer on Social Media So Outrageous?, January 22, 2014