#6303 10-14-2005 05:12 PM | Joined: Mar 2003 Posts: 1,384 Likes: 1 Patient Advocate (1000+ posts) | OP Patient Advocate (1000+ posts) Joined: Mar 2003 Posts: 1,384 Likes: 1 | Folks, I have been around here for going on three years now, and I would like to say that some things change and some things stay the same. New voices mix with the "locals" and over time become one of the "locals" Sometimes there is a "family" argument and some things we will never agree on. (except the Packers and Vikings both suck). We have on hand here a real cross section of personalities. From that we can draw upon a huge experience base. The thing that seems to work best is to respond to posts by first trying to determine the needs of the poster. Then answering using words that are carefully chosen to answer, without going overboard. We need not monkeypile on newcomers and stuff information into their ears. People are often not looking for specific technical information and frankly we for the most part aren't qualified for more than hints from the technical standpoint. Often they just want some gentle assurance that they are not alone and that cancer is not always the end. I do not like to see our zeal turn into someting negitive. Before you hit the reply button, read your post to yourself twice. If you would not use those words with a close friend then don't post them. There is NO reason to be offensive or even walk on the edge of being offensive. Their will always be "those" topics that tempt to be uncivil. Do your best to fight the urge. (PEG tubes not included) There are subjects that my oldest brother and I have decided we'll never talk about. He is forever wrong and to him so am I. We choose to remain brothers so we keep our mouths shut. I happen to think that everyone can apply that logic from time to time.
Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
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#6304 10-15-2005 02:22 AM | Joined: Oct 2005 Posts: 122 Gold Member (100+ posts) | Gold Member (100+ posts) Joined: Oct 2005 Posts: 122 | Very nicely done, Mark. Thank you.
From the personality with rose colored glasses in Florida, Lisa
SCC Tongue T1N0M0\Dx 3-10-03 Hemiglossectomy, alloderm graft, modified neck dissectomy 4-14-03 3 Year Survivor!
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#6305 10-15-2005 08:33 AM | Joined: Mar 2002 Posts: 4,918 Likes: 65 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,918 Likes: 65 | The population of the forum changes routinely. We have seen over the years heated discussions on religion, clinical studies, personalities that have taken antagonistic attitudes for no more reason than they liked the adversarial process, and much more. Human nature, the pressure cooker of the world of cancer and its implications, bring out the worst in some - and the best in others. Even the medium of the written word vs. a face to face conversation which can be easily misinterpreted, causes problems. In the end, we must not forget why the forum exists. To answer questions based on our own experiences going through the journey, and offer support to those just beginning theirs.
My father knew me well, when at an early age he told me never to seek employment in the diplomatic corps. If anyone on these boards is guilty of being blunt to a fault it is often me. I get frustrated with some posters, and I speak my frustration plainly. Perhaps I have been riding herd to0 long. But unlike a topic people agree to avoid, that tact doesn't work well on a public form. How many times have someone suggested that a topic be dropped only to have posters continue to want to have the last word on the subject, forcing me or another to close the thread? Some posters don't know when to let something go.
Unlike Mark's solution with his brother, those of us that monitor the boards to see that they stay on track - (and offending people, well intentioned or not, post appropriately or are corrected if they post incorrect information or frame their answers in a manner which muddies the issue), are doing a thankless task. But one that is necessary. We can explain the situation, which sometimes only prolongs the dispute/discussion. I try this and often end up with plenty of arrows in my back for the effort. We can end the thread, or we can delete the posts. One takes time and wins us no friends, the other offends people but is quick and to the point. Either way, as a monitor there is no winning. Someone gets pissed or their feelings hurt at minimum, especially if there intention was to help.
I think that things would be easier, if in addition to what Mark has posted, people post with the thought of; not speaking in absolutes, of not suggesting that there is a singular answer to a problem, of not touting the latest preliminary data from some trial as gospel, speaking as if the institution that is treating them has the best solutions, and more.... when these positions are taken, there has to be intervention.
Take a look at some of the other boards that you could be reading and posting to on the web related to our subject of interest. There is enough misinformation on them to choke a horse because no one is monitoring them. OCF cannot go there, though from the amount of time I spend reviewing posts that people email me about, I sometimes would like to not be the sheriff in town. We have a responsibility to those that come here to first do no harm with our postings and information, and second to see that the information considers the emotional state of the reader. Subjects lately have not considered the latter, and more than a technical error, those get to me. My first reaction is to say so bluntly. In providing information to someone who is scared, (admittedly or not), tone in the delivery of the answer, is just as important as the answer itself.
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant. | | |
#6306 10-15-2005 03:47 PM | Joined: Apr 2005 Posts: 2,676 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Apr 2005 Posts: 2,676 | Brian, I think your Dad misjudged you.
CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease
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