| | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | I guess my "chick" (aka feminine) side came out after I joined the board. I contacted several members that I had befriended through the forum and gained a great deal of information, support and friendship from them.
I think this worked very well for me and I highly suggest personal, direct phone contacts. I have to agree that a phone support line would probably not work.
Susan I am planning to try to make the walk on the 27th, but can't make a definite commitment. If I know a day or more before, I will let you know or I may just show up and I'll find you.
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"
| | | | | Joined: Jun 2008 Posts: 475 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jun 2008 Posts: 475 | Jerry, that would be great if you can make it. I will be the one running around with a frantic look on my face!! I will be easy to find!
Welcome to the feminine side! It is not bad over here!
But yes peronal phone contact is very comforting. Not that I have experienced actually having cancer, but I can comfort someone taking care of an oral cancer patient and really know what they are going through.
Susan Lauria - OCF Director of Events - Always looking for volunteers to help spread the word about early detection! Contact me if you can help!
*Brother passed away from tongue cancer in 2006 at age 47, was co-caregiver, he was non-smoker/casual drinker
LETS MAKE ORAL CANCER HISTORY!
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 8 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 8 |
Susan, I also may show up thats why I asked for the specifics.
As far as phone calls go, the big picture is much more complicated than anyone knows. Now we are talking about my line of work. Just think about publishing phone numbers. It would need to be an 800#, with many extensions. With so many different types of oral cancer there would need to have a routing system to try to ensure people get correct info. Not to even mention the legalities involved. Basically it would end up being a call center with people manning the phones who have brochures they read from. The reps would be very well versed with empathy and need to know tons of medical info. Its a nice idea but unlikely it could be practical. Its much better to make friends here and then exchange numbers if you want.
ChristineSCC 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  | | | | | Joined: Mar 2002 Posts: 4,918 Likes: 72 OCF Founder Patient Advocate (old timer, 2000 posts) | | OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,918 Likes: 72 | That does not mean that with the right strategic partners, ie. a local cancer center, OCF through it's state chapters will not work to get support groups in partnership with a cancer center. Malka is already on this in her state and as we get the other states rolled out, we will develop more institutional partners for OCF that can help us properly host these meetings. The strategic partnership in my mind is the essential key. Qualified medical people are part of the group. You get face to face time locally. But done the way some others have in someone's home without people you can confirm are knowledgeable, it isn't a great idea in my mind or in that of the doctors on OCF's board.
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.
| | | | | Joined: Jun 2008 Posts: 475 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jun 2008 Posts: 475 | That would be great Christine. As I mentioned to Jerry, I should be easy to find, the crazy one!
Susan Lauria - OCF Director of Events - Always looking for volunteers to help spread the word about early detection! Contact me if you can help!
*Brother passed away from tongue cancer in 2006 at age 47, was co-caregiver, he was non-smoker/casual drinker
LETS MAKE ORAL CANCER HISTORY!
| | | | | Joined: Jan 2008 Posts: 706 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2008 Posts: 706 | Wow, I didn't really want this to become an issue. I'll keep ideas to myself from now on. Just trying to help.
Last edited by suemarie; 09-06-2008 06:15 AM.
cg to husband, 48 Stage 1V head and neck SCC. First surgery 9/07. Radiation and several rounds of chemo followed. Mets to chest and lungs. "Life isn't about waiting for the storm to pass, it's about learning to dance in the rain." Went home to God on February 22, 2009.
| | | | | Joined: Jul 2007 Posts: 939 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2007 Posts: 939 | Sue,
Maybe I am misreading your emotions , but I think that the discussion(s) born from your idea/post has been helpful and fruitful and you don't need to worry about the impact...we have gained from the idea....possibilities, roadblocks, alternatives, etc.
Thanks for you and everyone that chimed in on this,
Deb
Deb..caregiver to husband, age 63 at diagnosis, former smoker who quit in 1997.
DIAGNOSIS: 6/26/07 SCC right tonsil/BOT T4N0M0
TREATMENT START: 8/9/07 cisplatin/taxol X 7..IMRT twice daily X 31.5.
TREATMENT END: 10/1/07
PEG OUT: 1/08
PORT OUT: 4/09
FOLLOWUP: Now only annual exams. ALL CLEAR!
Passed away 1/7/17 RIP Bill
| | | | | Joined: Mar 2002 Posts: 4,918 Likes: 72 OCF Founder Patient Advocate (old timer, 2000 posts) | | OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,918 Likes: 72 | Suemarie - I am not sure what the replies have upset you so much. There are reasons that it is the way that it is, and I think that those needed to be explained to you since you obviously were not part of the discussion years ago. No one intended for any of this to be rude, or disrespectful of your input, but only to tell you how we had come to the conclusion that this was the best format for us to do things, especially knowing that people had access to each other through this format, when you look at someone's profile and then you could arrange other meeting mechanisms if you were so inclined. ( emails, meeting in other online IM formats etc. all of which you can list in your profile so people can find you - it's part of the board's system) But if you think I was rude to you or something you have my apologies..... I took the time to explain it so that people would understand. Would people prefer that I just said we are not going to do that, and left it at that?
Please note these questions are in your sign in profile
IM (ICQ):
IM (YAHOO):
IM (MSN):
IM (AIM):
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.
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 8 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 8 |
Sue
If I hurt your feelings, Im sorry. In no way would I intend to make anyone feel bad by explaining how complicated phone lines are. It would be a wonderful idea if it could ever work.
ChristineSCC 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 | | | | | Joined: Jan 2008 Posts: 706 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2008 Posts: 706 | Allright already. I was just trying to throw an idea out there. Not criticize the way this site is run, Brian. I thought maybe because local chapters were being started this could possibly be helpful at the local level. I've not been a part of this site since the beginning as I only found it last year. I was not looking to start a discussion on how technically stupid my idea was. I WILL be getting a life soon.
Last edited by suemarie; 09-07-2008 06:03 AM. Reason: sp
cg to husband, 48 Stage 1V head and neck SCC. First surgery 9/07. Radiation and several rounds of chemo followed. Mets to chest and lungs. "Life isn't about waiting for the storm to pass, it's about learning to dance in the rain." Went home to God on February 22, 2009.
| | |
| Forums23 Topics18,307 Posts197,300 Members13,508 | | Most Online7,516
Mar 21st, 2026 | | |
|
