#4736 01-10-2005 05:50 PM | Joined: Mar 2002 Posts: 4,918 Likes: 70 OCF Founder Patient Advocate (old timer, 2000 posts) | | OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,918 Likes: 70 | December had the largest number of individual donations ever. While it was not earth-shattering, about one per day, they were predominantly the donation envelopes that OCF volunteers personally passed out. I want to personally thank those of you who asked for the brochures and envelopes. You are truly the backbone and core of what makes OCF work and what keeps us alive from month to month. If a dozen people could have this kind of impact, what would it be like if the other 1000 plus people who visit the message board, let alone the over one million who visit the site every month tried to give something back. I thank you for your personal efforts and in being the heart of and soul of the real spirit of what OCF is. You have chosen to be a part of something bigger than any one of us alone, and been a force for positive change in the world.
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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#4737 01-11-2005 02:03 AM | Joined: Mar 2004 Posts: 98 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Mar 2004 Posts: 98 | After just losing my mom unexpectedly, I want to take a minute to thank Brian, and to everyone who supported me through these past couple weeks. Having this place to come to, has helped me so much. To be able to talk to people who have been where I am at. I just cant put into words what that means. I know my mom looked to everyone for support, and i just dont know what we would've done if the OCF wasn't around.
We as a group need to keep the money coming in, not just in December but every month. Somehow, Someway we need to make this happen! Any Ideas?
Was Primary caregiver to my mom who had stage IV, SCC, Supraglottic with Mets to 4 nodes. Diagnosed Feb 04, died unexpectedly from complications from treatment December 17, 2004.
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#4738 01-11-2005 11:01 AM | Joined: May 2003 Posts: 928 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2003 Posts: 928 | Brian I often wonder if the donation envelopes and information cards I pass out are helping, thanks for letting us know.I am hoping at least one or two came from this area! Thanks for all you do. Love Marica
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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#4739 01-12-2005 07:32 AM | Joined: Oct 2002 Posts: 546 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Oct 2002 Posts: 546 | Brian, Like Marica, I hope some of those donations were from my neck of the woods. I sent to friends and extended family members (aunts, cousins, etc.) along with a Christmas greeting. That probably caused some raised brows because I don't normally send Christmas cards. To finally receive a card from me was probably a shocker to begin with. I can imagine their faces when they saw the enclosed request for money. It was probably just too much for some of them! Oh well, they can think of me what they want. Just so some of them donated! I did tell them they could donate in Heather's memory, then I was going to ask you for an accounting. But I know you are too busy to pick out specific donations just to let me know if my family was generous or not. So I'll just assume they did well and double my efforts next year! I echo the thanks from Marica, Karen and many others. You do a terrific job! I'm glad you and the OCF are finally getting some of the help and recognition you so richly deserve. Lots and lots of Rainbows and Hugs,  Rosie
Was primary caregiver to my daughter Heather who had stage IV base of tongue SCC w/ primary recurrence. Original diagnosis August 21st, 2002. Primary recurrence March 18th, 2003. Died October 6th, 2003.
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#4740 01-12-2005 08:50 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 am still waiting to get my envelopes...
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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#4741 01-14-2005 03:12 PM | Joined: Apr 2004 Posts: 482 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: Apr 2004 Posts: 482 | Mark, I'm with you. I never did get the envelopes I requested. I am starting to see a new dentist and would like to get them into his practice as he asked me to forward the OCF site to him so he could join the club. He is a fervent cancer exam supporter and routinely gives all of his patients a cancer check along with whatever treatments he is performing. Also, his clientele are financially comfortable. Please send me some envelopes, Brian.
Regards, Kirk Georgia
Stage IV, T1N2aM0, right tonsil primary, Tonsilectomy 11/03, 35 rad/3cisplatin chemo, right neck dissection 1/04 - 5/04.
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#4742 01-17-2005 07:45 AM | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | It might be best to email Brian and request the necessary supplies. At this point, there are some information cards, as I call them, and some contribution door hangars, as Brian calls them. If you email him, he will have an email as a reminder. If you are the teacher's pet  like me, you will receive them about 2 days after the email request...like clockwork! Please don't give up...persistence will only help. Kirk, did you ask the dentist if he has a website and would support a link to OCF from his site? Also, tell him if he correctly diagnosis oral cancer, he can be listed on the HEROS section of this website. Ed
SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
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#4743 01-17-2005 04:36 PM | Joined: Mar 2002 Posts: 4,918 Likes: 70 OCF Founder Patient Advocate (old timer, 2000 posts) | | OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,918 Likes: 70 | Mark and Kirk they went out with all the others. Send me and email with your address and I will have Ingrid put some more together for you. They are in groups of 50's so just mention the quantity that you want. There are the three fold about OCF pieces that have a donation envelope in them and there are the post cards that have info on the back for hospitals etc. where patients who pick them up can find direction to all of you here on the message board. Just tell me what you want. They leave So Cal express mail 3 day delivery, and Ingrid has been getting them out with in two days of getting the request. These days I am busier than a one legged man in a butt kicking contest. It seems like I am living out of a suitcase most of the time. If you don't get something or you need me...email me. I can't check the boards every day like I used to, and while that bothers me to some extent, I have a comfort level that some really knowledgeable and caring people are doing such a good job with all the questions that I don't have to be here all the time any more. But people have done a great thing getting the donation cards out and I hope more of you ask for them. Those that have personally given them to family, friends, and coworkers who know what you have been through have had the best results as to getting people to send in something. It doesn't have to be much, every cent counts.
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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#4744 01-18-2005 12:50 AM | Joined: Apr 2004 Posts: 482 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: Apr 2004 Posts: 482 | Brian, I thought you might be busy just before the holidays which is why I didn't bother you earlier. Will email again with address, etc.
Ed, I didn't want to get to far into the details with my new dentist. I did send him the website address and hopefully he will join us soon. I must say, though, that I have never had an exam with a dentist that even approached his level of examining me. He starts from the outside and works his way in. From the head and neck surface until he finally examines the inside of the mouth. Very impressive. I am sure he has found cancer in some of his patients before they knew they had it. The exam is too detailed to not have found some patients with problems.
Regards, Kirk Georgia
Stage IV, T1N2aM0, right tonsil primary, Tonsilectomy 11/03, 35 rad/3cisplatin chemo, right neck dissection 1/04 - 5/04.
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This is another custom island. This one could be used for ads. This spot is one of the best places for ads on your site to be placed. This can be enabled/disabled on a per forum basis.
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