Ditto Malka's post....There is so much about oral cancer that is different from other cancers, and knowing what to expect is vital. For example, nobody told me that when they removed the surgical packing after my maxillectomy that I would not be able to speak or swallow. I was terrified.....and couldn't even express it except with my eyes! I thought I would choke to death. I had no idea what was going on. That was the least compassionate thing I have ever experienced. I was totally shell-shocked, when a compassionate preparation through even a nurse or a resident could have softened that effect. I was the center of attention for the doctor and the residents and fellows, but nobody saw ME.

I would stress the difference between oral cancer and internal cancers......that oral cancer affects not only a person's health and life-expectancy, it affects their appearance and function--how they present themselves to the world--how they perceive themselves. So there are psychological issues with oral cancer that might not be present with other less visible cancers. And there is always the concern about recurrence, so that even MORE of our faces and function might be lost down the line.

Since oral cancer involves function more than most other cancers, Malka's observation about being sure that the patient and caregivers understand how to cope with the changes in function is a great one. I was sent home from the hospital before I was able to swallow, but with no other means of intake. Nobody made certain that I was going to be able to eat and drink......and I couldn't do either. I begged my husband, a physician, to arrange for a feeding tube so that I could get some fluids and nutrition. We tried one more day and finally made a little progress (Bless that man!)

Now that I think about that very difficult time, I realize that my experience could have been made significantly easier if I, the patient, had been considered to be as important as the result of the surgery.

I was rushed to surgery without proper time to assimilate the information about what was going to happen to me, to fit the surgeon's schedule, not my needs. This rush prevented me from having the proper pre-surgical consultation with the prosthodontist, which has caused me difficulties that last to this day. I was sent home......two hours away....after just a day and a half in the hospital, without anyone checking to see that I could eat and drink. I was not informed about what would happen on my return visit to remove packing and dressings, and I was traumatized at that time. I had not had a pre-surgical consultation with the prosthodontist, so at 4:00 that afternoon, the surgeon had a resident call the one they work with, to see if he could see me then. WHAT in the world had he thought that I would do???? with a hole in my mouth, and blood and other stuff running down my chin, and terror in my eyes? What in the world had he expected me to do?? He didn't think. That's what. Somebody skipped a step, and it was ME, the patient, who paid.

And, while he has generally given me as much time as I needed, he came to tease me about my list of questions, so that I was self-conscious about asking all of them. This is a strange illness, and oral cancer affects so much of our lives, that there are many questions, and the doctor must be prepared for that.

Arghhhhh I shouldn't have gotten on such a rant. I am doing fine now, but my path from there to here could have been much smoother and easier on me, if my doctor and his staff had been more sensitive....and organized!

Organized....Every patient will have similar issues. There should be a sit-down session with someone to explain some of the issues....maybe some printed material.....something to explain more of what to expect.

David...You didn't ask for all of this.....but I can't go back and clean it up. You get my drift, I hope. sorry for the rant. I wish that I could come and give that seminar!

XO--Colleen