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Medical Forum / Diseases and Disorders / Cancer / February 2005

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Weighing in on this matter

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MB_ - 12 Feb 2005 21:29 GMT
Sorry if this is a double post as my computer was getting finicky, so I'll
repeat it here.

(Oh, and one additional thought:  this is a CANCER SUPPORT group. So what is
all this CRAP that one has to have cancer to "vote"? How ridiculous is that.
Most of us posting here either have cancer and/or has a loved one with
cancer. It seems EITHER situation allows a vote. But nw back to my regularly
scheduled post):

I would like to weigh in on this thread. I have spent some time putting my
thoughts together on this and I hope you will all read it and respond.

First of all, I hope you are all having fun, as surely this is a regression
to third grade. The reality is that nobody has the power to ban anybody. So,
dream on, if you wish and enjoy the schoolyard squabble. BUT, that being
said ...

I have been perusing this board for quite a few years now. I first came on
when I was dx. with cancer. I am one of the TRULY LUCKY ONES in that it was
only basal cell. I asked for advice (regarding whether or not I need to see
a surgeon vs. just going to my excellent family doctor). I got responses
that were very helpful, had the minor surgery, and hence was cured. But I
found the folks on here fascinating. I admired the grit and determination of
many, including many who are no longer on this Earth. I also admired Steph
and Mike and a few other medical experts who offered their knowledge to us.

Meanwhile, I was really getting annoyed with J. I resented (and still do)
her efforts to control this board. I got annoyed at her telling me not to
top-post. That is a debatable issue and certainly isn't worth the time she
took in making such a big deal out of it. In fact, I resented (and still do)
her efforts at making a non-moderated board into a de facto moderated board.
She (he??) has no business telling anyone else what to say or what not to
say. (I might also add that I resent a lot more the charlatans peddling
their dubious wares and ridiculous claims, but that's another issue).

Early on, I let J know in no uncertain terms how I felt. We did exchange
some posting. But, then, I also realized something that greatly overshadowed
all of this: J is a tireless poster who provides a LOAD of useful
information. She digs up all sorts of stuff. While I am a good google user,
I am constantly amazed and impressed at the job she does in this area. I put
myself in the place of someone who gets dx. with cancer. I was there briefly
and I know how upset I was at the dx., even though mine was as benign a
cancer as you can get (it was the realization of just how things can change
and how mortal I was). Imagine someone in such a state (as many/most of you
are or were). Would someone be able to think clearly? Probably not for
awhile. And that is where J is just so helpful

Later on, my father got cancer, Merkel Cell Carcinoma. I searched and got
lots of information, including a lot of help on this board. Incidentally, my
Dad got surgery at 95 years old. So far it has not reappeared and he will be
97 in May. I really appreciated J's help. So, in thinking of others who
really NEED SUPPORT and INFORMATION, I acknowledged some facets of J's
behavior that annoyed me greatly, but decided against being too critical. I
think if J left that would be a GREAT LOSS for this group.

J: I really wish you would not be so pigheaded and truly LISTEN to your
critics. The criticisms in many ways are VALID.

But I think you folks are calling for the wrong vote. J, why vote on whether
or not to LEAVE this board? If you want a vote, perhaps you can ask the
folks if they approve of your non-informational behavior (ie: attempting to
enforce board rules, and all that goes with it). Let's face it, as I said
earlier, nobody can purge anyone from this board (unless it is via
contacting the ISP due to abuse).

So, J, my vote is that you stay with us. I also vote that you reconsider
some of the things you do. Lord knows you spend enough time on this and
other boards. Perhaps a bit fewer police functions will allow you to
continue to help in ways that are truly wonderful and important.

Mel
eveline - 12 Feb 2005 22:03 GMT
> Sorry if this is a double post as my computer was getting finicky, so I'll
> repeat it here.
[quoted text clipped - 67 lines]
>
> Mel

A wonderful post, which I agree with completely.  The links J has provided
are very helpful, and I have no complaints except the ones you have written.
I have a couple Yahoo groups and know full well the time consumed by finding
pertinent helpful material for the group members.
As one who has cared for family members who are ill, I know how much
knowledge a caregiver can accumulate and the value they have to a group like
this. Long after their ordeal is done.
I think as professionals, some of us might be able to share something of
value from time to time, but the where the rubber meets the road is in the
individual situations of each family.
Thank you so much,
eveline
J - 12 Feb 2005 23:38 GMT
> Sorry if this is a double post as my computer was getting finicky, so I'll
> repeat it here.
>
> (Oh, and one additional thought:  this is a CANCER SUPPORT group. So what is
> all this CRAP that one has to have cancer to "vote"?

Well, that opens up the vote to just any casual lurker. (who never posts,
benefits from information that I provide or has an agenda against me from this
or any newsgroup - there's been one already).  And I wanted to protect Steph and
Mike and Peter and others from having to weigh in (one way or the other).

> Most of us posting here either have cancer and/or has a loved one with
> cancer. It seems EITHER situation allows a vote. But nw back to my regularly
> scheduled post):

The vote is cancelled anyway,  because it would take months before everyone who
has been here, could have enough time to come back and vote and (some of ) the
ones who've appreciated my efforts here have passed away, so it's an
ever-changing "view" on this newsgroup (as compared to some other support
newsgroups, where many are there for years, but mostly because it's unfair to
ask of cancer patients  Longtermers here and/or newbies.
Besides, I've decided that I'll make the decision about what I do or don't do
myself.  So I apologize to everyone for that idea.
Perhaps I was looking for an excuse to exit the group (unconsciously), but I
think I really wanted to hear from the cancer patients.
Darn it ! I care about them and want to know they're okay (or not, as the case
may be), but these OT subjects just keep going, on and on.

> Meanwhile, I was really getting annoyed with J. I resented (and still do)
> her efforts to control this board. I got annoyed at her telling me not to
> top-post.

I cannot read backwards. Mel, take a page out of any book, read it and time
yourself.
Then the next day (or a few hours later), hold it to a mirror and read it and
time yourself.

And I'm on dialup and have a chronic arm problem, so if people do not snip text
(but leave relevant text), they they're leaving it up to others to do so. In
order to do what I do best here, that's what I require.
Besides, it's good netiquette.

> That is a debatable issue and certainly isn't worth the time she
> took in making such a big deal out of it. In fact, I resented (and still do)
> her efforts at making a non-moderated board into a de facto moderated board.
> She (he??) has no business telling anyone else what to say or what not to
> say.

Nor do others me.

> (I might also add that I resent a lot more the charlatans peddling
> their dubious wares and ridiculous claims, but that's another issue).

I am part of why many are no longer here.
I cannot say why or how, because that arms them with information.

> <thank you from the workhorse of the newsgroupJ

<snip vote issue>

> So, J, my vote is that you stay with us. I also vote that you reconsider
> some of the things you do. Lord knows you spend enough time on this and
> other boards. Perhaps a bit fewer police functions will allow you to
> continue to help in ways that are truly wonderful and important.

I was doing (to the best of my ability) what the Charter stated and as
instructed by Jerry.
And we've since decided to back off somewhat on that.
And what I thought best to try and keep this newsgroup clear of alties, trolls,
spammers and trouble-makers.
Don't forget, those who take my time up with criticisms, take away the time that
I can concentrate on searching information or replying to cancer patients.
.
I can cite an example of a clash. marc wife GBM came barging in talking altie.
He left.
That's unfortunate - I thought he was a troublemaker.
Mike and I and perhaps others still disagree on that point (of whether "altie"
should be discussed here)..
Because same altie/trolls, see the name of the "quack cure" and view that as
permission to start posting here.
And "the work" of getting them off here again, has to be restarted.

As to policing and intimidation, GW has certainly done that to me on her (breast
cancer) newsgroup.
(and for years now)
But you don't read there...
And apparently she has spread, what she thinks she knows about me, to other
troublemakers.

I sure wish Lisa would do more support. She's been an excellent supporter for
years.

Thanks for your post, Mel. I appreciate your opinion, even if I don't agree on
everything.
I sure wish this newsgroup (and posts) could get back to what it's for..cancer
patients.
If it takes me leaving, then I guess I'll have to.  But as Alayne said, I've
done that before, only to see posts go unanswered.
Catch 22?
J
Sorry, if some of this in not coherent, I've replied to 3 other posts while
trying to reply to this one.
I was a multi-tasker ...;-)
Sinead - 13 Feb 2005 00:29 GMT
>> Sorry if this is a double post as my computer was getting finicky, so
>> I'll
[quoted text clipped - 128 lines]
> trying to reply to this one.
> I was a multi-tasker ...;-)

J

Do not take offence. This post is very coherent and apt. Sometimes you do
scare people, but I think most of us realise that you have the good of the
group at heart.

Don't leave, just try not to rise to the bait that some idiots feed you. The
old rule stands - if you ignore someone long enough they will get bored and
go away.

Take care
Sinead
Guess Who - 13 Feb 2005 00:42 GMT
> Do not take offence. This post is very coherent and apt. Sometimes you do
> scare people,  <SNIP>
Great point...alex
Sinead - 13 Feb 2005 10:13 GMT
>> Do not take offence. This post is very coherent and apt. Sometimes you do
>> scare people,  <SNIP>
> Great point...alex

Alex,

If you want to comment on something I have written - please use the entire
sentence.

Thank you
Sinead
 
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