#11017 06-20-2007 02:12 PM | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Apr 2005 Posts: 2,219 | Shar,
I'm in, assuming my work schedule will allow it.
As far as VELscope is concerned, the rep that sold me the unit and came to my office is from Chicago. That shouldn't be a reason to pick Chicago, but if it ends up there, you can be sure they'll attend.
Jerry
Jerry
Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.
"Whatever doesn't kill me, makes me stronger"
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#11018 06-20-2007 02:57 PM | Joined: Feb 2005 Posts: 2,019 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Feb 2005 Posts: 2,019 | I could only come on a weekend. Also, Sharlee, you may want to bear in mind that some of us can't eat anything and everything and that it would be nice if some of the socializing was not structured around formal meals that we can't eat.
Nelie
SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
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#11019 06-20-2007 03:00 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 | If this ends up in New Orleans, I would suggest all group meals be buffets- New Orleans style- if the Hotel has good chefs- then the food will be varied and there should be choices for every palate. You can make them aware that extra spicy may not be a good thing, but other than that "variety is the spice of life." Amy in the Ozarks
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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#11020 06-20-2007 03:10 PM | 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 | Sharlee.... I think there are better ideas than the bracelets that no one will recognize what they are. I think if you search this forum for that subject you will see that we have discussed them ad nauseum. But there could be other things that would be unique to the group that could be done. Also screeenings with a VELscope done by a sales rep who just demonstrates the machine but who isn't a doctor are of no value to anyone. There are reps for the machine all over the country. I think that you should keep it social, not clinical. Just my opinions, you guys obviously can do anything that the group wants to.
Lastly Danny told me before he died that he gave the photo book to Minnie to show at the Virginia walk and never got it back. Ask her for it. Someone should try to keep the idea and photos/letters/stories alive.
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. | | |
#11021 06-20-2007 03:55 PM | Joined: Jan 2007 Posts: 735 "Above & Beyond" Member (500+ posts) | OP "Above & Beyond" Member (500+ posts) Joined: Jan 2007 Posts: 735 | Brian ,
I absolutley LOVE the idea of a book. Peoples stories and photos.. I really really do . And I am not as computer Savy as I like to pretend >>hahaha, You probably all can tell that with all my typos. BUT I would love to do a SLide show with power point or somthing and MY daughter will help me and MY Aunt does photos and music on cd's so I would love to do somthing like that as well, as a Gift for all in attendence and anyone who wants to contribute photos.stories, prayers, poems ,I would love to have them all to make somthing ..Even songs that mean somthing to them .They can email me or private message me . For all that want to submitt photos , stories or anything and cant make it , I would love to send to them a copy as well ! Even if for some reason this doesnt work ( the reunion) then I still would love to work on this CD Idea.
I am not kidding when I tell you ..that is it is all of YOU , who got me through it . Yes I have a family and many friends. Yet they aren't always as comapssionate and understanding as all of you . ANd you all arent afraid to put me in my place if I am being over the top either, yet you hold me in your hearts when I need you the most . YOU are my strength ..or atleast the people that remind me to reach down and grab it and to not lose sight of this as overwhelmimg and dark as it can get ..there is a light always a light. YOu all have such a part of my heart.
I am the type of person who wants to be there and do for others..It makes me who I am and It makes me Happy . I need to learn to do for me when need be. But right now this is keeping me going with a big smile on my face as new ideas and messages come.
I want to make a difference in this . I want people to know what this disease is ...I want the awareness of this to be as great as that of Breast cancer. I want people to know who I am but more I want people to know who WE are and what we have been through and how we have fought and continue fighting for all those who may someday face this.
Brian ..and Minnie .. I would love to see that book.
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
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#11022 06-21-2007 03:06 AM | Joined: Aug 2006 Posts: 199 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Aug 2006 Posts: 199 | Sharlee - I have been reading all of your ideas with great interest on this, and admire your enthusiasm!!! And, I think New Orleans could be a great place to do this - it's fairly central, not East or West, and the city needs as much PR and help as it can get still after the effects of Katrina. We had one of our largest conferences there in Feb. with over 24,000 attendees, and it went really well.
If schedule permit, my husband and I would definitely come. Doesn't really matter about weekend or weekday...
I wonder if we would be better to partner more with Livestrong and use their bracelets - I have one on that hasn't left my arm since a friend gave it to me...
Ginny M. SCC of Left lateral tongue Dx 04/06,Surgery MDACC 05/11/06: Partial glossectomy with selective neck dissection. T1N0M0 - no radiation. Phase III clinical trial ("EPOC" trial)04/07 thru 04/08 because tests showed a 65% chance of recurrence. 10 Year Survivor!
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#11023 06-21-2007 04:26 AM | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2006 Posts: 2,671 | I really like the idea of New Orleans. And I think I could come - but when is this planned for? Also, somebody mentioned getting a book together with pics. If anyone is interested, I could put a web page together with pics or any info you'd like included with the pic. All I need would be a .gif or some sort of pic file that I would upload to the page. Later if someone wanted to put a book together all the pics would be easily available.
Anne-Marie CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)
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#11024 06-21-2007 07:40 AM | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Aug 2003 Posts: 1,627 | Hey Sharlee,
Danny asked me to send the book to Michelle, sister of Marcy, a cancer patient that died a few years back. I haven't seen Michelle on the boards in a couple years I don't think. I'll try to get in touch with her and track it down. If not, we can certainly make a new one. The old one was pictures of older members, many of whom are not on the board any longer. It may be time to make a "new" one, in my opinion.
I will gladly help with the menu as I'm one that has eating issues also. I am with Nellie, let's not make all of our social gatherings revolved around food. I rarely go out to eat anymore for that reason, it's depressing sitting there watching others eat! And I'm able to eat a good amount of food, I can't imagine not being able to eat at all. I've found buffets to be the best, especially ones that have lots of casseroles.
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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#11025 06-21-2007 08:38 AM | Joined: Apr 2006 Posts: 794 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Apr 2006 Posts: 794 | New Orleans....close to my home....I can help with some suggestions. I agree that, in the city that is famous for food we'll have to be careful to be considerate of all persons' needs. The Court of Two Sisters in the Quarter has a huge.....I mean huge....buffet in a very New Orleans-y atmosphere where all would be comfortable. and the Cafe' du Monde coffee and beignets cafe is back up and running on the riverfront, at the French Market.
There is plenty to do that doesn't revolve around food. Aquarium.... WWII Museum is stunning...streetcars are running again down St. Charles Avenue(part of it, anyway)....Harrah's Casino downtown at the river....Jax Brewery (shops) at the river...French Quarter...Art Shops (ie. George Rodrigue's Blue Dog art)...jazz on the street and flowing out the doors in the Quarter...Acme Oyster House....Canal Street (Canal One has exclusive shopping....not for me, but maybe for others)....The Superdome......Audubon Park and Zoo...paddlewheel ride down the river to the zoo.....dinner cruise down the river.....Magazine Street for antiques and boutiques and cafe's...
You'd want to stay either in the Quarter or close enough to walk around it. You'd have to drive to the WWII Museum and to the Zoo, but everything else is walkable.
There are not many cities where so many things are so easily accessible.
When/if we get closer, I can make some sugg. about hotels.
I have such a full plate these days with family matters that I can not be in charge of such a large undertaking, but as a Louisianan, who spent many years there in college and my husband's medical school...and whose son lives across Lake Ponchartrain....I can be a big help.
Colleen--T-2N0M0 SCC dx'd 12/28/05...Hemi-maxillectomy, partial palatectomy, neck dissection 1/4/06....clear margins, neg. nodes....no radiation, no chemo....Cancer-free at 4 years!
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