[hutchibk]

(*** GD edited and removed his full name from the end of the above post, which he was so proud to share at the time. If anyone would like more info and to read blogs on the web regarding his activism, feel free to contact me...***)


GD - You didn't answer why you are interested in our subset and this forum, which is primarily used by Her2 patients/caregivers for support. If your purpose is to push a movement or agenda, then maybe this is not an appropriate place.

Many of us are fighting for our lives, for moments, hours, days, months and hopefully years of continued survival... speaking for myself, that takes all of the energy I have. To try and recruit us to join in a movement to change the culture of oncology is perhaps out of our emotional range, as we are living in real-time treatment and may not have the luxury to wait while our doctors learn to use or embrace what you are passionately researching and fighting for. I would assume that you might understand the real-time aspect of this, losing your wife to ovarian cancer. Perhaps your beliefs and agenda would be better supported in the blogoshere of the web, in the meeting rooms of advocates, and in the offices of doctors who like you have the energy to embark on the long, arduous task of changing a system, a culture, a profession. Perhaps honorable and deeply caring in your passion, perhaps important and logical is much of your sharing, it does disturb me that your posts consistently share a subtle degree of fear-mongering about many of the drugs and treatments that many of us are finding great success with and tolerating well. It is not fair if you come here with that agenda. If you are here for a reason other than just sharing helpful research, please reconsider where you take your activism and who the audience is. I don't pretend to speak for everyone here, but I am not a fan of outsider activism on the forums here.

Speaking for myself, I prefer to choose who I get my "informed opinion" from (in reference to your opinion that "Cancer patients need informed opinion, whether with good, bad or indifferent consequences.") I am not cutting anyone short of learning from your posts. If they want to read what you post, absolutely more power to them. I read it and find some of it informative and interesting. My opinion is, however, that we should be apprised of who you are and what your reason is for posting on our forums. Full disclosure is important when a mysterious participant is sharing "opinion" and "conclusions" - I want to know who you are and why I should heed your opinion or conclusions. I have read your contributions in multiple blogs, etc. on the web, so I have a more general picture of your opinions, positions and agendas. Others here probably haven't had the luxury of that info. I feel it is necessary to find out why you are here and why you feel you need to share your opinions with us, as you are not one of us...

Thanks for listening.