Oral and head and neck cancer is different from many other cancers in that treatment for advanced cancers, and in particular recurrent cancers leave significant facial deformities and loss of speaking and swallowing functions. As opposed to many other cancers, survivors cannot hide the changes to their face and neck, or loss of speaking or swallowing ability if they are to remain fully engaged in the world. As a survivor of multiple treatments, I like all cancer survivors am a bit delusional. Cancer survivors, in order to deal with the harsh treatment need to downplay the pain associated chemo and radiation, the two-week hospital stays that surgery often entails, the visible changes to our body once treatment is completed, and the limited support available for those with significant side effects from treatment. Cancer may have kicked me around but as the song from the unsinkable Molly Brown says, "I ain't down yet."
In many ways, the cancer has treated me a bit like the black Knight in Monty Python and the Holy Grail. Even after losing all of his limbs he still wants to fight.
Here are a couple of articles about and by Roger Ebert, a television and print film critic who has lost both the ability to swallow and talk to cancer has talked and written candidly about how it feels to deal with these changes. His descriptions of what he misses most from not eating and the other issues hit home to me remarkably well. I pass them on to spread the word about the challenges that oral cancer causes.
- Nil By Mouth - Roger Ebert's thoughts on what you miss when you can no longer take nutrition by mouth.
- Roger Ebert: The Essential Man - An interview in Esquire of Roger Ebert in which he candidly talks about his fight with cancer
- Roger Ebert's Last Words - Roger's thoughts on the reaction to the article and his willingness to be photographed as he is today.
I am posting today with the objectives that the readers of this blog will take the time to support organizations that help those with head and neck cancer and those that lose some or all of their ability to take nutrition by mouth. Cancers of the head and neck most likely affected over 40,000 people in 2009 which is about equal to the number of cases of ovarian and cervical cancers. You may find this surprising because there is significant public attention to ovarian and cervical cancers and head and neck cancers are rarely mentioned in the news. Part of the reason is that most survivors retreat in hiding as their illness takes away part of their face and their ability to communicate and socialize. Roger Ebert is a rare instance of someone who is in the public eye who is both open about his disease and articulate.
When I first was diagnosed with tongue cancer in 1996 there was little support for patients. I therefore urge you to make a small donation to one of the following non profit organizations. The goal is to prevent cancer, find treatments that allow patients to survive with nearly full functionality, and aid survivors who lose significant capabilities in swallowing and communications.
Here are the organizations and their websites:
Foundation for those who cannot get all of their nutrition by mouth
- Oley Foundation - The Oley Foundation provides support for consumers who lose their ability to take all of their nutrition orally and learn about research, medical advances and ways of coping with the emotional, insurance, and employment challenges as well as the paraphernalia and supplemental nutrition needed for survival.
Oral and Head and Neck Cancer
- Support for People with Head and Neck Cancer (SPOHNC) - SPOHNC publishes the only patient centered newsletter and coordinate support groups for patients.
- Oral Cancer Alliance The Oral Cancer Alliance runs oral cancer alliance events nationwide that run free oral cancer screenings. For those in the DC area, Howard University Dental School is running this activity.
- Oral Cancer Foundation This foundation, which has been around for a little over a decade has the most comprehensive web presence on oral cancer and is often the first place that patients diagnosed today go for information.