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Joined: Aug 2008
Posts: 96
Supporting Member (50+ posts)
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Supporting Member (50+ posts)

Joined: Aug 2008
Posts: 96
Yesterday I called our local Oral Surgeons office. They had taken care of Ron at various points in his treatment and were always so nice and hopeful about his recovery. I asked the receptionist if they were giving screenings this week and she had absolutely no idea what I was talking about. She put me on hold to ask someone else, and they had no idea either. It is the saddest thing in the world to me that I had to explain that April is Oral Cancer Awareness Month, and that this week is Oral Cancer Awareness Week, when many dentists, hospitals, Oral Surgeons, etc. give screenings. After I got teary and explained it all to them, I was assured that they would "see what they could do". I feel very helpless and hopeless for future patients with this lack of knowledge.

Lori, cg to H Ron, age 56.
Stage IV Oral SCC-T1N2. Tongue resected and right ND 8/05. Teeth removed, PORT, PEG, IMRT x33, Cisplatin x3. Tx ended 10/05.
Recurrence 7/08 Stage IV. Surgery 8/30/08.
2nd recur. 11/08. 2nd surgery 2/2/09.
3rd recur. 4/9/09. Erbitux wkly. 5/09-?
Ron died 6/6/09.
Lori also passed away 8/20/11, colon cancer
Joined: Mar 2002
Posts: 4,912
Likes: 43
OCF Founder
Patient Advocate (old timer, 2000 posts)
OCF Founder
Patient Advocate (old timer, 2000 posts)

Joined: Mar 2002
Posts: 4,912
Likes: 43
This is an ongoing battle. Progress is being made but it is slow. Look at the pathetic list of sites on the events page of the main OCF site. But 5 years ago the number was 0.

I cannot emphasize that for all my lectures at universities, interviews on TV print media and more, OCF is only as strong as our family here. When you go to your oral surgeon's office you can take waiting room brochures from OCF ("What you need to know about oral cancer" designed for the general public) and leave them behind, when you go to your treatment center you can see that they have our web card in the treatment waiting rooms, at the social services office so that people can find this message board. There is more, but you get the idea. We are as strong as those that care to make a difference through such simple acts. Everything you need can be obtained by contacting Megan or Jamie at the OCF office for free to our members. We have to be the change that we wish to see in the world.

OCF is about to embark on a new effort with billboards throughout the south through a company that we found because of the organizer of our Chattanooga Awareness Walk event. We are working with two different high end recognizable modeling agencies one of us will partner with us on an ad a TV PSA program that is going to be an "oral cancer isn't pretty" theme. There is a great additional PR opportunity with someone of that caliber to get the oral cancer story out as they want to show that they are good corporate citizens. We are buying public service message time on a site called that has video screens on gas pumps at stations all over the US. Those 30 second message will spread the word about oral cancer. These are all expensive things to engage in. This is your donation money in part, in effect.

Lori - have your surgeons office call us. We will show them how to do good in the world and build their practice at the same time. Vested self interest is sometimes the necessary tool. Have them ask for me. Let me help you turn your grief and frustration into to something meaningful.

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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