#4387 12-03-2004 05:41 PM | Joined: Mar 2002 Posts: 4,912 Likes: 52 OCF Founder Patient Advocate (old timer, 2000 posts) | OP  OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,912 Likes: 52 | OCF could use the help of three or four people to assist us in contacting other cancer, dental, and medical websites, to get us listed on their resources pages so people can find us. It isn't glamorous work, but essential. We would like more people to be able to find our forum, get support from the great people that populate it, and obtain the other information that is on the site. Anyone who is interested in putting in an hour or two a week on the effort, please contact me and I will explain the rather simple process of asking for a link to OCF to be put on their site. There are literally thousands of sites out there that maintain links to cancer sites for people. It could easily keep a half dozen people busy for months accomplishing the contacts. Can't afford to financially help OCF? This is a valuable way of giving something as valuable...your time. Email me at [email protected]
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.
| | |
#4388 12-07-2004 04:56 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 | OK folks, gut-check time! This is something that can be done even a few extra minutes after checking your email every night. If this could keep a half dozen people busy for months, think how fast this task can be accomplished several hundred people spending 2 hours a week or even 1 hour a week. Every week I hear more stories of dentist referrals for biopsies. I have also heard a portion of those turning out to be SCC. The crusade has begun and it is up to "us" to help spread the word through the incredible contacts Brian has already established.
Did you know more people die from oral cancer than from prostrate and cervical cancer? Why is this? It is because everyone knows about prostrate and cervical cancer but few know about oral cancer; it is because of the huge effort to promote early detection. How many of "us" had the luxury of early detection? I, for one, had a dry cough for the entire winter of 1999 and 2000. It seemed to come from my throat...exactly where the tumore was found at the base of my tongue. If I just knew then what I know now...
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
| | |
#4389 12-07-2004 04:59 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 | Have any teens that are on the internet? Need purpose? What a great way of giving your family and friends a sense of accomplishment! Have them help find the sites. My 16 year old has to work 12 hours community service a month to cover the cost of his auto insurance. THIS QUALIFIES! He can find the sites, I can send a standard email to request a link to OCF.
OK...I'm done (for now).
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
| | |
#4390 12-07-2004 06:32 PM | Joined: Mar 2002 Posts: 4,912 Likes: 52 OCF Founder Patient Advocate (old timer, 2000 posts) | | OP OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,912 Likes: 52 | OK for those of you that have offered, I am sending out an email tomorrow night with the outline, the tactics and strategy to make this happen. Once you all get it, we'll wait a couple of days for your comments, a refinement will be written, and then we all start contacting people. I really appreciate the number of people that have offered to chip in here. The web is the fastest way to have the most people hear about us and find us, that need the info on the site and the help that you all provide on the boards. I'll get on it tomorrow night and you should have it in your mail Thursday AM.
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.
| | |
#4391 12-08-2004 03:33 AM | Joined: Apr 2003 Posts: 148 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Apr 2003 Posts: 148 | Once again, Brian, I had volunteered so long ago I hope you remember I have started a list of sites and was waiting on further direction. You got me!
Lisa
Lisa
SCC of Tongue Stage 1 (T1,N0,M0)
partial glossectomy,modified neck dissection 4/14/03
| | |
| Forums23 Topics18,168 Posts196,927 Members13,104 | | Most Online458
Jan 16th, 2020 | | |
|
