Monday, May 7, 2007

My Disability

One of the things that cancer people want is to be back to normal. Head and Neck Cancer is one of the worst cancers. The surgeries are in hard to get to places and leave visible scaring, the funding for research is low due to it being a less common type cancer, and the permanent disabilities remind you daily that you will never be back to normal.

My disabilities stem primarily from my July 13th surgery (see Background). 1) My speech is compromised due to removal of some of my soft palette and a piece of my tongue. If I concentrate, I'd estimate my speech ability at about 70% of previous quality. 2) My eating ability is limited to soft foods such as Cream of Wheat, scrambled eggs (fixed just right), and a few other foods. I can eat harder foods, but the effort to chew and swallow overshawdows the joy of eating those foods. I have to wash each bite down with liquid due to removal of part of my epiglottis. It is basically eating via gravity. I also have to be seated or laying in a reclined position to avoid aspirating. I don't eat in front of others wthout a lot of concentrated effort and I can't talk or answer questions while eating. A meal which would have taken minutes to consume before the surgery now takes an hour of careful babying. I get at least 50% of my calories daily from drinking Boost. 3) I have pain in my jaw when I begin eating. It is probably nerve damage from the operation. My doctor says it may be first bite syndrome. It could go away in 18 - 24 months. The pain is severe and I take pain meds to address it. However, they are general pain meds and I dislike taking a general medicine for a specific pain. 4) My stamina while on chemo is very low. I spend a lot of time in bed reading or writing e-mails. 5) The plastic surgery performed by my doctors has been amazing, but the scars are still there and quite visable. 6) I have no hair. Hair today, gone tomorrow. No big deal. It will probably grow back.

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