I think everyone here has made some good points! I think the forum is truly invaluable and personally will be forever grateful for its members who have helped me. For the people who give of their time post treatment (and there are many), I think they are to be commended. It is a generous way of giving back and without them, the newcomers and those not so new, would not have the vast amount of information available to them. I can understand the thinking of not coming on the forum after a person gets through the period of treatment and no longer has problems or even has problems. However, I can also understand why people may hesitate to come on when they are in the midst of problems, especially if you are in a minority. That is how I have felt several times since treatment.
I was one who had a host of issues post GK. Many are now long gone, but some are still here. As I was well aware of my body's unusual reactions to various things pre-treatment, so I went to what I considered a place of excellence. Still, I had issues afterwards. I, too, was told my reactions were not from GK, other than hearing loss. I can only say I did not have them prior to GK. I personally felt it would not be overly helpful to people who were deciding to have radiation to post all my different issues frequently, at least on a constant basis. Also, since most people did not have a lot of issues post radiation, it did not help to go on the board on a continuous basis when I could not relate. Since I was living in the midst of issues, I did not want to saturate my thoughts with the tumor further. That is just my way of coping. I am, and have been, in touch through personal messages with forum members about various AN issues. They are a true source of comfort to me.
I guess the forum is made up of all different types of patients, both with good outcomes and bad. Also, people choose to handle those issues, in different ways. It does not make it wrong, either way. There is always a copy left of their story if you choose to review, so in a way, they are always giving back, even if not on the forum.
It is a great forum and members get help from with those that give constantly and those who have been on infrequently. I thank all those who are giving back on a constant basis and those who have left a trail behind!
