But you look so good

But You Look So Good I have a rare kind of slow growing Cancer called Carcinoid which has spread to my liver and other various parts of my body. I was diagnosed in 2001 and the average survival rate of this particular kind of Cancer is stated as five years. So, as a 12 year survivor I am already beating the odds of this disease, and I do appreciate the friends and family who support me. Today I have something to ask. It seems most of my interactions end with "Well, you sure look ok (or good".) I would like to start a movement to stop saying this because us Cancer patients don't know if this is good, bad, an indictment, and when people stop saying it I believe it can become depressing and leave a patient who is used to hearing this filling the void with "I guess I look like hell.". One of the observations I have made as a patient is there are hundreds if not thousands of types of Cancer. They have scary scientific names, and most people simply go to their local Cancer Clinic and are treated using standard protocols which usually have a good outcome if caught early enough. But most people lump it all together as one thing which it is not, and this leads to some cancers getting the funding (like breast cancer) and other cancers like e mine languishing in the gutter known as a "orphan disease." Carcinoid is treated at a small number of organizations, while breast cancer is treated everywhere. So the bad news is Carcinoid is incurable, the good news is the symptoms can be treated. (Well, as long as one has insurance.) The symptoms include intense flushing where your blood vessels pop open from the histamines and lord knows what else and is accompanied by pain 24 x 7 and a number of other symptoms which involve staying close to restrooms. We loki to call ourselves 'noids and we are so rare a general practitioner will see us once in their career. The insidious part of the disease is the fact one looks normal until the latter days of the disease, and so many of us get our monthly $20,000 treatments at the same place the really sick people are. We sit out in the waiting room looking well, and everyone wonders just what the heck we are doing there. As with most waiting rooms, one usually strikes up a conversation and we get to hear about an entire Cancer ordeal usually with gory details and the person always looks at me and says "Wow, you look good!". This is usually ok, but it does not end there. We are opposites, we look good until the disease progresses, and this is I think mistaken for getting better or being in remission. Remember, incurable, no remission possible, treatments are to mass symptoms and sometimes prevent spread, but everyone loses in the long run. Why get upset? It has to do with something which is perhaps not even meant, kind of an indictment as to why you are there. What they don't see is intense pain, flushing, dizziness, and up to 40 visits to the bathroom with explosive diarrhea. (you have not lived, until you experience this.). Is there a better way to express your optimism? How about just saying "how are you doing?". Or perhaps don't comment at all, because sometimes just listening is what someone really wants - and silence is fine, it show acceptance and makes the person think you are listening to them.