#10987 06-17-2007 03:18 PM | Joined: Jan 2007 Posts: 735 "Above & Beyond" Member (500+ posts) | OP  "Above & Beyond" Member (500+ posts)
Joined: Jan 2007 Posts: 735 | While I have nothing but time to be paranoid about myself...I did have another thought and I would love some input.. I love to "arrange things" and I think it would be neat to arrange a ((HMM not sure what to call it ) Get together ..kinda like the little people convention ( For lack of better words ) where we can go for a weekend or so and have guest speakers and meet each other ...Or even just have activities all weekend or Bbqs..we could find a somewhat central location ..I am more then willing to try and set things up and figure it out and get sponsors ..probably for next year so we have time !! I just need some input...BUt you guys have a special place in my heart and it would mean the world to me to meet you !! Thanks for being there and makin me look at things rationally and let me cry and probably cry with me !
Shar
Sharlee
35 year old Female Non smoker, very occasional alcohol ..Scc T1N0M0,partial glossectomy and left neck disection ,2/9/07 No rad deemed ness. 4/16 tonsillectomy ..Trimengenial Neuralga due to surgery
| | |
#10988 06-17-2007 04:49 PM | Joined: Mar 2007 Posts: 525 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: Mar 2007 Posts: 525 | Hey Shar I just sent you a thread (via e-mail) I read yesterday. The last response is by Gary. He spoke of a "reunion" they had a while ago in Las Vegas. He said he did not think he could attend another as it was too hard putting so many "faces" on this disease. It was in the "General Board" by "PeteyB" on 4-4-2007 titled "Desperately seeking misskate #3966". It is ironic that you mention this thought. I read that whole thread yesterday and I thought it "odd" how opinions change from day to day. So sad... 
DX 3-21-07 L tongue,SCC Stage IV (T3N2MO) TX Slash/Burn/Poison Method.
***Rapid Aggressive Recurrence 8-4-07 with same DX/TX. Life does not cease to be funny when people die any more than it ceases to be serious when people laugh. Never Give Up! ****UPDATE**** Our dear friend Petey passed away, RIP 9-2-07
| | |
#10989 06-17-2007 05:43 PM | Joined: Jan 2007 Posts: 735 "Above & Beyond" Member (500+ posts) | | OP "Above & Beyond" Member (500+ posts)
Joined: Jan 2007 Posts: 735 | I havent checked my email but I will....
Sharlee
35 year old Female Non smoker, very occasional alcohol ..Scc T1N0M0,partial glossectomy and left neck disection ,2/9/07 No rad deemed ness. 4/16 tonsillectomy ..Trimengenial Neuralga due to surgery
| | |
#10990 06-17-2007 06:11 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 | Those of you who have not been here for long do not have the perspective of some of the few really old timers left. I think the idea of getting together is great, and I really enjoyed the Las Vegas meeting. We spent time sharing stories and laughs and good food. We all have a bond with each other that those who have not danced with this devil do not have, will never fully understand, and can never be really part of.
What Gary is referring to I have experienced before
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.
| | |
#10991 06-17-2007 06:22 PM | Joined: Jan 2007 Posts: 735 "Above & Beyond" Member (500+ posts) | | OP "Above & Beyond" Member (500+ posts)
Joined: Jan 2007 Posts: 735 | Thank you Brian and when you put it that way ..it does make alot of sense. As I said if there are many interested I will do the work, But if Not I truley understand.
Sharlee
35 year old Female Non smoker, very occasional alcohol ..Scc T1N0M0,partial glossectomy and left neck disection ,2/9/07 No rad deemed ness. 4/16 tonsillectomy ..Trimengenial Neuralga due to surgery
| | |
#10992 06-17-2007 06:26 PM | Joined: Jan 2007 Posts: 735 "Above & Beyond" Member (500+ posts) | | OP "Above & Beyond" Member (500+ posts)
Joined: Jan 2007 Posts: 735 | By the way can I ask how long ago the Vegas reunion was ?
Sharlee
35 year old Female Non smoker, very occasional alcohol ..Scc T1N0M0,partial glossectomy and left neck disection ,2/9/07 No rad deemed ness. 4/16 tonsillectomy ..Trimengenial Neuralga due to surgery
| | |
#10993 06-17-2007 06:55 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 | You should do this if you want to. There is much to be gained. When the last one was is not relevant, you'll likely get lots of people to come including me if my schedule permits. Go for it if you have enough participants to make it worthwhile. You'll make friends like none you've ever had before.
Organize it amoung yourselves, using the board to work things out. I met people in Las Vegas that changed my life. I had a great time and regret no part of it. While my previous post described why some wouldn't come, I will also openly say that every wall you put up not only keeps others out, but keeps you in. Life is a series of experiences both good and bad. Bonding with other people is one of the great experiences in life. If you want this go for it. The original OCF Las Vegas get together was years ago and yesterday. It isn't relevant to doing another one.
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.
| | |
#10994 06-18-2007 03:28 AM | Joined: Dec 2006 Posts: 77 Senior Member (75+ posts) | | Senior Member (75+ posts)
Joined: Dec 2006 Posts: 77 | I think it's a nice idea. I would come if I could arrange it.
I have had much loss in my life, and for a while, I closed up. I didn't want to get close to someone, for fear they would die.
I am different now. I really take this to heart "Tis better to have loved and lost, than to never have loved at all."
Hokey? Maybe.
God Bless,
Amy
Dx 11/30/2006 Stage I SCC of gum/surgery 01/12/07 resection of the right posterior mandible with a right buccal transpositional flap 3 teeth removed/reconstruction to come in 9-12 months
| | |
#10995 06-18-2007 09:38 AM | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2002 Posts: 3,552 | The Las Vegas meeting was in 2004. 2 of the 3 organizers have passed away. One didn't even make it to the event.
We picked Vegas because it typically has cheaper airfare, hotel and food costs. There are many things to do in Vegas as well, world class shows, entertainers, gambling, etc. We had a meet & greet on Friday night with a banquet on Saturday night.
Danny Boy took it upon himself to put together a binder of mainly people who had passed on from this disease (and a few who simply couldn't make it) and it was very moving. I don't know where the binder is today.
Brian is alsolutely correct about the emotional toll taken on both of us as a result of so much of a "human face" put on this disease. I would probably attend as well, if my schedule permits, but with some trepidation...
Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
| | |
#10996 06-18-2007 12:51 PM | Joined: May 2007 Posts: 61 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: May 2007 Posts: 61 | This was disappointing to read. I don't like hearing about all the people this disease has taken. I would love to get togeher and celebrate all of the accomplishments we've made. However, I don't want to go and listen to people talk about all of the people that are no longer here. I'm afraid (from some of these replys)that's what a big focus would be. I'm not trying to be negative but lets think of the THOUSANDS of people that kick this disease in the ass.
SCC-tongueT3N0M0- IMRT 35times-1/07-3/07; along with one cycle of Cisplat & one cycle of Carboplat; weekly erbitux.finished all tx.3/07-supposedly gone. Recurrence 6/07. Age 31-non-smoker/social drinker. Devastated it's back.
| | |
| Forums23 Topics18,170 Posts196,933 Members13,105 | | Most Online458
Jan 16th, 2020 | | |
|
