Here are a few comments I have received over the past few years. These statements were and still are made by well-meaning people, I'm sure, who probably do not know what to say or are unaware of how their words come across. I'd be greatly surprised if my experiences summarized here are mine and mine alone.
How are you feeling?
Easily the #1 comment. A better inquiry is: "how is it going?" or "how are you doing?" or "what's up?" Please assume that if I am at work, or at church or at the mall, or at the game, then I feel well enough to be at work or church or wherever I happen to be. Saying "how are you feeling?" causes me to think that this person sees me in only one dimension: as a brain tumor person. But the "how is it going?" question is a safe, natural and neutral statement - like you'd ask anyone. A brain tumor person strives to lead a normal life to the extent possible. A normal greeting facilitates this goal.
There are no gbm Survivors...
...so expect the tumor to return and take your life. Incredibly I had an oncologist make this statement to me in a dry matter-of-fact fashion in 2004. It really tore me up, but my wife provided the necessary solution when she suggested that I simply find another oncologist, which I did. Why do so many oncologists refuse to acknowledge the fact that there are survivors? Would they prefer no survivors? Seriously?
You were misdiagnosed
I receive emails from time to time from fellow brain tumor people stating that an oncologist knows that I have been misdiagnosed. There are no gbm survivors, and since I am now an 8 year survivor, I must of not have had a high grade tumor to begin with. This comment attempts to explain the presence of long-term gbm survivors and is as unhelpful as it is untrue. I have reports from several pathology labs. Their analyses are all the same: my tumor was a gbm. It would be great if in fact I had a lower grade tumor, but five recurrences suggest that the path reports were correct.
