#38910 08-03-2005 04:14 PM | Joined: Nov 2002 Posts: 274 Platinum Member (200+ posts) |  Platinum Member (200+ posts)
Joined: Nov 2002 Posts: 274 | This is exactly what I was talking about! Brian or Mark, please close this thread that has clearly gone off topic.
Thanks,
Glenn | | |
#38911 08-03-2005 05:34 PM | Joined: Mar 2002 Posts: 4,912 Likes: 52 OCF Founder Patient Advocate (old timer, 2000 posts) | | OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,912 Likes: 52 | Glenn - I understand your position. Remember that the reason we leave all the posts up here, ESPECIALLY those with hardcore information content, is so that future readers of the board will have it to read. (We are beginning to prune out the "wish you well" posts of the first year since they are taking up valuable server space and make the searches of the message board more cumbersome and slow. The current ones will definitely stay.) When people PM, which is their prerogative this valuable experience/information resource is lost. While respecting your desires, I wanted to say that your candid style is a valuable asset, and as you continue to go through your treatment process I would hate to lose your insights and posts here on the board. Let's take our ideas to a new thread. This one is closed.....
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.
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#38912 08-04-2005 05:58 AM | Joined: Nov 2002 Posts: 274 Platinum Member (200+ posts) | | Platinum Member (200+ posts)
Joined: Nov 2002 Posts: 274 | I'm lucky this is not fully closed yet. What newer posters do not understand is that the Tube threads have been my frequent downfall here and it was not my part of my reply. It may be be pertinant to Michaels post but I just can't be part of it. If this remains open, no big deal. Maybe I over reacted. | | |
#38913 08-04-2005 09:15 AM | Joined: Mar 2003 Posts: 1,384 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Mar 2003 Posts: 1,384 Likes: 1 | I apologize if my post seemed to be an attempt to cause trouble. If anything it was an attempt to jab (humor) at those healed PEG scars.
While we do sometimes wander off-thread I don't see it as a problem as much as it is similar to a face-to-face conversation between friends. Frequently conversations wander around and while that may result in informality, I don't find informality that bothersome. Over the years we have had some very humorous volleys but in the context of serious subjects. I believe in the value of humor. If I have taken liberties today and in the past, those liberties were likely intended with some kind of humor mixed in.
I don't think that this (idle) conversation should cause worry or be concerned that the Forum is not completing a mission. Forums are driven by the needs of the group. I believe there is a very broad representation of personalities here and that has very significant value. It means almost any new person can find someone already here to relate to.
A rich cross-section of people: helping people.
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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#38914 08-04-2005 09:43 AM | Joined: Sep 2003 Posts: 1,244 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Sep 2003 Posts: 1,244 | Mark
TO PEG OR NOT TO PEG THAT IS THE QUESTION?
do you do Shakespere in the USA?
Sunshine... love and hugs
Helen
SCC Base of tongue, (TISN0M0) laser surgery, 10/01 and 05/03 no clear margins. Radial free flap graft to tonsil pillar, partial glossectomy, left neck dissection 08/04
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#38915 08-04-2005 02:35 PM | Joined: May 2003 Posts: 928 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2003 Posts: 928 |
Caregiver to husband Pete, Dx 4/03 SCC Base of Tongue Stage IV. Chemo /Rad no surgery. Treatment finished 8/03. Doing great!
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#38916 08-04-2005 02:35 PM | Joined: May 2005 Posts: 497 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: May 2005 Posts: 497 | Michael back to the swimming I did read on a cancer info site today that the clorine in pools is not so good to be in.
[i]"The artist, a traveler on this earth, leaves behind imperishable traces of his being." -Fran
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#38917 08-04-2005 03:53 PM | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Aug 2003 Posts: 1,627 | I agree with Mark, the board will turn into what the posters make it.
On that note, I feel I must say this....MICHEAL GET THE PEG!!
Sorry Mark!
SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
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#38918 08-04-2005 04:10 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 | As a newcomer to OCF [March 05]I'm having several reactions to the above posts. 1st, I wish someone would enlighten me as to the objections to a peg. I know for sure that if my husband had not had a peg inserted during his surgery, he would most likely be gone today as a result of dehydration and malnutrition. We still struggle with those two issues daily. 2nd. The "idle conversation" I read during my first month here is what taught me how to look for the issues we would be dealing with during treatment, how to find the meaning of the terms and words associated with SCC[which we'd never seen before] and it gave me reassurance that this battle could be fought and won with love,grace,humor,support and prayer.3rd. I don't know where to look for and learn the "rules" about what the appropriate things are to say in a post.And I need the definition of "thread" Finally, I hope I can find the time to find all of Glen's posts.Sounds like interesting reading. Amy
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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#38919 08-04-2005 05:44 PM | Joined: Jun 2005 Posts: 21 Member | | Member
Joined: Jun 2005 Posts: 21 | Right now Jerry is in the hopital because he was not using the peg enough.We had hydration problems last week which resolved with IV fluids.This week he started running a 103.8 temp.If you get the peg use it like you are suppose to.Jerry was about 20 - 30 pounds over weight (I added 10 to him before he started tx after reading this forum)His sister just found out last night that he has the peg and she freaked out. | | |
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