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Re: No negative posts please! [Re: Pete D] #94544
04-28-2009 06:47 PM
04-28-2009 06:47 PM
Joined: Aug 2008
Posts: 96
Wisconsin
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lorileona Offline OP
Supporting Member (50+ posts)
lorileona  Offline OP
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Joined: Aug 2008
Posts: 96
Wisconsin
Hi Karen,
Thanks for agreeing with me that they were inappropriate. I think of you often too. Have you had any implants done yet? How is your tongue?
Hi Pete,
I agree that it can't all be hearts & flowers, but this was no troller. This was an old timer with a grudge against someone and it was very personal. I would respond the same way again if I had to. Sorry if I offended anyone.
Lori


Lori, cg to H Ron, age 56.
Stage IV Oral SCC-T1N2. Tongue resected and right ND 8/05. Teeth removed, PORT, PEG, IMRT x33, Cisplatin x3. Tx ended 10/05.
Recurrence 7/08 Stage IV. Surgery 8/30/08.
2nd recur. 11/08. 2nd surgery 2/2/09.
3rd recur. 4/9/09. Erbitux wkly. 5/09-?
Ron died 6/6/09.
Lori also passed away 8/20/11, colon cancer
Re: No negative posts please! [Re: Pete D] #94549
04-28-2009 08:13 PM
04-28-2009 08:13 PM
Joined: Mar 2002
Posts: 4,744
Boise, ID and Portland, OR
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Brian Hill Offline

OCF Founder
Brian Hill  Offline

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Joined: Mar 2002
Posts: 4,744
Boise, ID and Portland, OR
Interesting thread. Astute observations. Most importantly many posts from people who genuinely care about the forum and the purpose it was intended to serve.

I have to admit that I see myself in some of the bad examples. My father who knew me all too well, told never to seek employment in the diplomatic corps, as I would starve to death. I also, after being the original first poster, forget that while I don't monitor the forum every day, I have read and seen it all here before for the most part. Without knowing it, the information that I have gleaned from many really good posters often comes out of me as if it were an original thought..... which I well know I have very few of. I'm glad someone put up the list.


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.
Re: No negative posts please! [Re: Brian Hill] #94553
04-28-2009 08:43 PM
04-28-2009 08:43 PM
Joined: Mar 2003
Posts: 1,376
Minnesota, land of 10,000 taxe...
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Mark Offline
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Mark  Offline
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Joined: Mar 2003
Posts: 1,376
Minnesota, land of 10,000 taxe...
Sure I'm guilty of most of those.

I might add one other type of forum/blogger; the kind that neatly slot every other contributor as this type or that type. Obviously leaving just one personality type left. (his or her own).

The thing that makes these forums best is that we all exhibit some (if not all) of those character traits from time to time, and with a measured mix of sanity we actually can accomplish a mission.

The remaining personality type: The last poster wink



Mark, 17 Years 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.
Re: No negative posts please! [Re: Mark] #94558
04-28-2009 10:20 PM
04-28-2009 10:20 PM
Joined: Mar 2002
Posts: 4,744
Boise, ID and Portland, OR
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Brian Hill Offline

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Brian Hill  Offline

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Patient Advocate (old timer, 2000 posts)
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Joined: Mar 2002
Posts: 4,744
Boise, ID and Portland, OR
Well here's a post to mess up your desire to be that!!


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.
Re: No negative posts please! [Re: Pete D] #94563
04-29-2009 03:29 AM
04-29-2009 03:29 AM
Joined: Jun 2007
Posts: 10,457
PA
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ChristineB Offline
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ChristineB  Offline
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Joined: Jun 2007
Posts: 10,457
PA
I dont like the negative posts either. With going thru such awful treatments and feeling so sick this is the last place to turn to for hope. I try to be positive and encouraging to everyone even those with different ideas. I dont know about the negative posts you were talking about, hope they werent mine. I wish everyone the best in their lives and treatments.


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Re: No negative posts please! [Re: ChristineB] #94569
04-29-2009 04:21 AM
04-29-2009 04:21 AM
Joined: Jun 2007
Posts: 5,260
Mingo Jct., Ohio
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EzJim Offline
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EzJim  Offline
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Joined: Jun 2007
Posts: 5,260
Mingo Jct., Ohio
I am probably the poster they mean Christine. But once you hit send, it's like a bucket of water, once you pour it on hot concrete or on the ground it dissapates and is gone forever and too late to put it back in the bucket. I see some of the replys are being overdone too.


Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
Re: No negative posts please! [Re: EzJim] #94578
04-29-2009 06:17 AM
04-29-2009 06:17 AM
Joined: Mar 2008
Posts: 3,082
Alexandria VA
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Charm2017 Offline
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Charm2017  Offline
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Joined: Mar 2008
Posts: 3,082
Alexandria VA
Lori

I certainly was not offended by your post, I found it interesting and a good discussion point. I must have missed the posts you were talking about as I had been away from the forum except for a quick look see due to multiple rehabilitation sessions trying to swallow again and lift my left shoulder.
Sometimes, a little negative though is positive - I know in the PEG issue, I did a complete turnaround - like Saul to Paul
as a result of the heated discussions plus being forced to get one. Gee, now I am curious what posts were so bad -
Charm


65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
Re: No negative posts please! [Re: Charm2017] #94586
04-29-2009 07:06 AM
04-29-2009 07:06 AM
Joined: Jul 2006
Posts: 388
Florida
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Lostpassword Offline
Platinum Member (300+ posts)
Lostpassword  Offline
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Joined: Jul 2006
Posts: 388
Florida
ChristineB - Your posts are the most cheery and positive in here. I have been wanting to mention that to you for a long time, and this dialogue just opened the opportunity. Thanks for being YOU! smile JaneP.


Husband: 3 SCC gum and cheek cancers 2002, 2005, 2006: surgery only. Scans clear after removal of small, well differentiated, non-invasive cancers. No radiation. 4th SCC lip diagnosed 4/13/07 - in situ, removed in biopsy. More lip removed 2/8/08 - dysplasia. 2 Biopsies 3/17/09 no cancer (lichenoids)
Re: No negative posts please! [Re: Lostpassword] #94587
04-29-2009 08:23 AM
04-29-2009 08:23 AM
Joined: Mar 2008
Posts: 3,082
Alexandria VA
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Charm2017 Offline
Patient Advocate (old timer, 2000 posts)
Charm2017  Offline
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Joined: Mar 2008
Posts: 3,082
Alexandria VA
Lori

Just rereading this thread, and now realize I should have changed the title that the PC Magazine used - I think they were trying (and failed) to do a pun on Hillary Clinton's "It takes a village to raise a child" with their Village Idiot title. I certainly did not mean to imply that trying to bring civility to the board or caring about people is idiotic. I just cut and pasted the title directly from their article. This is one time I should have given in to my Smarty Pants urges and renamed it something like: "A Dozen Don't Bees" (in homage to the old Romper room: do bees and don't bees portion on playing nicely)
charm


65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
Re: No negative posts please! [Re: Charm2017] #94590
04-29-2009 10:44 AM
04-29-2009 10:44 AM
Joined: Jun 2007
Posts: 5,260
Mingo Jct., Ohio
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EzJim Offline
Patient Advocate (old timer, 2000 posts)
EzJim  Offline
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Joined: Jun 2007
Posts: 5,260
Mingo Jct., Ohio
LOL Charm, you sure can come up with the sayings, I luv it. Don't ever change because I sure can't and I have to be me not some damn clone.


Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
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