Kirklin Clinic Head & Neck Cancer Group,  Birmingham, AL

distributed by American Cancer Society

Pat Sanders, Editor

May 2005



Validating The Principle That One Cannot

Please All The People All The Time


When the precursor to the WebWhispers Nu-Voice Club began in 1996, our small email exchange program between members (then only 12-15) was conducted directly between the author of the email and the recipients, using individual email addresses which were listed on the web site.  Over the years, this list of individual email addresses continued to grow ... and by 1998 had become unwieldy and huge, with the name of each member appearing at the top of the email, over 100 names!  The messages were not as long as the address list.  In September of '98, WebWhispers was officially "founded" and the club then contracted with a professional ListServ email company to handle the club's email. 


 This permitted members to simply address their emails to ONE ADDRESS (webwhispers@mail-list.com) and the emails would be sent to all our members who were registeredA big improvement. Another advantage of the ListServ system is that it is set up so that it will NOT transmit attachments or graphics, thus insuring that all emails sent via the system are free from any Internet viruses. Since then, our WebWhispers (WebW) List has grown to over 1,000 members and our second health-specific list, WWHealthHelp (WWHH) has grown to serve over 300 members.


From the very beginning, our email exchanges were "un-moderated" ... that is, folks could send anything they wanted openly and freely to the other members. This "Email Freedom" worked well for us while the group was small and more or less homogeneous.  However, as we grew, incorporating other members, other personalities, other "agendas," we began to experience problems with some of the emails being sent.  In response, we published a few recommended email guidelines and some common sense rules which we hoped the membership would follow, but still left the email exchanges "un-moderated." 


As we continued to grow, these informal rules and guidelines became increasingly impossible to enforce by just asking for cooperation.  Our "List" was gradually being inundated with a myriad of jokes, Internet rumors, Internet hoaxes, Internet petitions, political diatribes from across the spectrum, petty and personal disputes between some members, and other generally disruptive and counterproductive behaviors.  We were suddenly faced with the undeniable fact that while we were all laryngectomees or caregivers, we were also a microcosm of society in general ... filled with good guys, bad guys, patient courteous people, bullies, good writers, not so good writers, those who understood the "big picture" and those who did not, those who read and understood our "Email Rules" and those who did not, etc.  In short, silly, extraneous, uncivil, discourteous, and even vitriolic, disruptive, emails were denigrating the purpose and mission of our list, preventing serious discourse to help new people and driving members away.  In response, we shifted to a "moderated" list in the early 2000's. 


Being moderated means that when a member sends an email to the list it does not go directly to the list but FIRST goes to an appointed “Moderator" who determines the email's fate, based upon our Email Rules and guidelines.  Our moderators have several options available:


(1) APPROVE the email "as sent"

(2) REJECT the email back to the sender for rewrite or editing, usually with comment

(3) DISCARD the email completely without comment

(4) Release it to the List with a Moderator's Introductory Comment

(5) Release it to the List with a Moderator's Comment at the bottom of the email


Our experience has shown that 96% of the emails sent to our lists are now released "as sent".  Another 1% are released with "Moderator Comments" on the top or the bottom, and the final 3% are rejected for rewrite or simply discarded.  The moderator’s job is to keep the lists free of Internet "junk", unfounded allegations, petty squabbles, personal ad hominem attacks, "flames", and other such off topic messages and to try to keep the lists focused on their mission of laryngectomee rehabilitation and support.


Most members take a rejected email in stride, while others take it has a personal affront or as a perceived violation of their “First Amendment Right to Free Speech”.  A very small group of members have actually quit WebWhispers, upon having an email rejected for cause.  Another very small number of members still send objectionable emails to list, knowing they will be rejected, but do it anyway ... probably helps them vent in some small way.  A third small group also send questionable emails to the list simply because they have never READ our Email Rules or else have read and forgot them or have read them and have chosen to ignore them. We have an occasional member who writes, “I know I’m not supposed to do this but I just have to write to say Happy Valentine’s Day because I love everybody here”. Meaning?  “The rules don’t apply to me.”  If the moderator doesn’t stop that message, it goes out to over 1,000 computers.  In turn, some will answer and we can easily end up with 10 or 20 messages in our archives and having added 20,000+ emails to the Internet as each of those messages goes to 1,000 computers.


The bottom line is that the moderated system has worked well for us ... keeping the system mostly for laryngectomee support and rehabilitation.


Of course, being a Moderator is not a right or wrong profession where everything is black or white. Gray areas have, do, and will always exist.  Sometimes an email is rejected when it could have been released to the list ... other times an email is released to the list when, by all rights, it should not have been.  These "gray area" decisions depend entirely on the judgment of the moderators ... and that is why the club pays these moderators the BIG BUCKS!!  LOL(laughing out loud)!


Moderators are not able to make any changes in what the members write to the list. We do not edit. While most emails deserving of the REJECT or DISCARD treatment are instantaneously recognizable, many are not. Some of the "tough ones" to call might be as follows:


(1) An email sent to the list that answers a “private” email received by the sender but not seen by the other list members.  This leaves the list with no clue what the sender is talking about.

(2) An email sent to the list answering and including a copy of a “private” email. Perhaps, had the originator of that “private” email wanted it sent to the list, he/she would have sent it that way initially ... (perhaps it was sent “privately” for a good reason and therefore should not be resent to the list).

(3) An email sent to the list saying something like "I agree 100% with Fred!", followed or preceded by a copy of Fred's Email that was ALREADY published on the list.

(4) An email question sent to the list that, although it probably made perfect sense to the sender, is confusing or incomplete and makes absolutely no sense to the moderator (and thus will probably not be clear to the list members either)

(5) A well-written email sent to the list that is UNSIGNED (the list members would not know WHO sent it --- knowledge that is often helpful when trying to answer it)

(6) An email sent to the list with the SUBJECT line BLANK (members cannot know its subject until they open it and it is then virtually "irretrievable" on our Archives

(7) An email sent to the list that is so badly "spelled" that it is almost unreadable (does one return it to the sender for a "spell-check" or forward it to the list and just "hope"?).


Moderators must deal with these issues every day and they are not infallible ... but simply do the best job possible, using the applicable email guidelines, some common sense, and personal judgment.  All of our moderators know they cannot please everyone all the time ... but they also know that having an effective "moderated" Mail List system has served WebWhispers well over the past several years and is likely destined to do so into the future.  It has permitted our email exchanges not only to survive, but to prosper as well.  Rejecting or discarding an incoming email is never a pleasurable task, but it comes with the territory and we hope it is a service that is valued and appreciated by the overwhelming majority of our 1,000+ membership.


D.L. "Dutch" Helms, WebWhispers Webmaster


Can You Spell Laryngectomee?

By Scott Bachman



Please put away your pocket spellers now and just relax.  It is more a philosophical question as it applies to our condition or better yet, our lifestyle.


Often I have reflected how little I might know about laryngectomees if I had never been one.  The old “what if” syndrome, I suspect, but it is more than that.  I have never been an astronaut yet if I was in the company of one I might never have known it unless someone pointed them out.  Of course a space suit might be the real clue in the middle of a black tie affair!  All too obvious?  Perhaps.


I admit to not being savvy about statistics relative to how many laryngectomees are alive and well in 2005 as opposed to the Sixties or Seventies.  My current personal perspective is based upon my experiences as a veteran laryngectomee (Class of ’92) and not having a clue way back when.


Having been raised in a working class city in Pennsylvania and accustomed to Bethlehem Steel, Pfizer and Baker Chemical spewing their by-products into the atmosphere, should I have been aware of more laryngectomees?   All the adults I knew, to include my parents, smoked Lucky Strike, Camel, Pall Malls and a host of other brands all day every day.  No good should come of that, right?  Then why did I not see or hear a laryngectomee in those times?


I have a few thoughts on that.  These are not empirical and since I am a male I know I am prone to being “wrong”.  Just ask any woman!  Hah!  Okay.  No more comedic relief I promise.  To our benefit, as laryngectomees, we are now being diagnosed for the most part in a timely manner with more medical resources and a significant amount of education available regarding head and neck cancers and associated surgeries.  Due to those factors and others we simply live longer and thrive.  Nothing wrong with that.  Society sees us, knows us, and hears us in a manner unlike many laryngectomees who were lucky enough to survive many years ago.  Outside of the IAL and dedicated support groups, laryngectomees fifty years ago probably went about their business in a quiet way or did they?  When I lived in Easton, PA and then ventured to Philadelphia for college and a career did I ever know a laryngectomee?  Hindsight is a gift but to this day I cannot recall hearing or looking/staring at a laryngectomee when I was younger.  I was raised to be polite and not “make a fuss” about people who were “handicapped”.  There had to have been one in a supermarket, church, or at least being someone’s grandparent.  I must not have been paying attention.


Admittedly in 1992 I still did not have a clue about who or what a laryngectomee was.  No, I could not spell it either.  During the course of my forty-two pre-op radiation sessions I never once asked my surgeon the “what if” question and the follow-up “then what?”  When I finally realized my surgery was two weeks away I accepted the situation and wondered if anyone would notice me in a supermarket, church or as someone’s father?  Life as I knew it was over.


It would be easy to offer many of my own negative consequences associated with being laryngectomized but the future always affords opportunity for change.  Change can be a great facilitator.


  Fast forward to 2005.  Reality check moment!  Laryngectomees as a group have become quite vocal (no pun intended) coming from diverse and storied personal, professional and medical/surgical backgrounds.  We are open, honest and self-assured.  We can pick out a fellow “lary” anywhere.  Even when a laryngectomee is not utilizing one of many vocalization options when we pass one another we know the “look”.  At that we smile in a way that only a laryngectomee can and continue on our way confident in the knowledge that we are not alone.


Life is good.  I know it.  Do you? 


Scott Bachman





I was in my car today, switched on the radio and hit a couple of buttons.  Next thing I heard was a Country Music song that I had never heard before.  A couple of repetitive lines from the chorus stuck in my mind.


“It’s not what you take when you leave this world behind you,

It’s what you leave behind you when you go.”


I thought about this all the way home.  Not many of us are blessed with being able to do great acts that are felt worldwide, but have you taught your children and grandchildren useful and important things that they, in turn will pass on to the next generations?  Have you written down family recipes and stored them with family pictures and stories?  Have you planted the seed to leave beautiful flowers along a path? Have you written in a journal about what you do or how you do it?  Are you as kind to your family as you are to your pets?  Have you done the job you are supposed to do and the chores you are capable of doing?  Have you left behind the words, deeds, and thoughtful acts that will create loving memories..  What you do today is what you leave behind you when you go.

Pat Sanders




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