Hi, again
I was happy to find this site, and I posted a message earlier today. Now I have a moment to give some backgroud as to why I am here trying to collect information. Hopefully some of you will choose to share from your personal background whether regarding yourself or a family member or friend.
During my many sessions with medical people across nearly three years of two battles with a squamous tumor on a salivary gland, I have been asked, "How are you?" again and again. Courtesy, sure -- but I came to know that the medical folks cannot know since they have not been patients with all the effects. And they were often surprised by some of my feedback, even stunned and disbelieving. It seems so easy for them to deal in just the top-level generalities of symptoms and not really hear the rest. Have you found that to be true, too? If so, you may wish a chance to really tell it like it is.
I am pulling together my own history in a printed form to be shared with professionals who have welcomed it. I would like to add in experiences that differ from, as well as reinforce, mine. It is bad enough to go through some of these lifestyle changes but, without having them validated as credible in medical eyes, some of our pains seem for naught. They can still learn much from us if we are ready to share and, if we compile information for them to access, then they have yet another opportunity to learn the true answer to "How are you?"
In a sense we are consumers who are trying to give our feedback to the deliverers of their treatments. Who better to do that? Might you be interested in sharing information in a quiet moment before your feelings dull on the topic? I am sure a compilation of feelings can only assist the wellness process by informing medical folks as well as new patients. Thanks in advance for your interest.
Bob