[Sandy in Silicon Valley]

I personally think that it's quite important, on this board and in life in general, to distinguish between one's personal belief system (faith, religion, custom, practice, etc.) and a scientifically-observable, data-supported statement of the current state of knowledge.

No one has a monopoly on the "truth". Today's scientific "truth" could be tomorrow's discounted "fallacy". What one person believes, does, thinks, is not a substantiation that her belief, action, thought is the "right" one - it just happens to be right for her, IMO.

In line with my preference that statements include "I believe..." or "my experience is...", it similarly disappoints me to read statements that don't include these admissions of PERSONAL rather than SCIENTIFIC "truth" in statements. For instance: "where the mind goes the body will follow..." That's really opinion, not scientifically validated fact.

I believe that there are many people who believe they'll get well, and they don't - not their fault for not believing hard enough. I believe that there are people (like ME!) who truly believe they are going to die very soon, and somehow, due to what I believe is the "crap shoot" nature of this disease's varied trajectories, they're afforded time beyond what was reasonably expected.

Armed with a curious mind and a skeptical view of what's out here on the "information highway", I look for reasonably-designed studies by "neutral" researchers, and balanced, cautious discussions of both significant and non-significant or contrary results.

I dismiss claims made by websites run by money- making individuals and companies selling non-FDA/ non-prescription, unmonitored supplementary/ complimentary/ alternative remedies. I wish that the FDA were the carefully-monitoring, unsusceptible-to- corporate -and- patient pressures watchdog body that it once was.

For me, it's great that Joe posts links to many studies on her2support forums, so that we're free to read and make decisions for ourselves. I wish that more of the member posts also referred to web links for researched info, or to personal unique experiences, without trying to "sell" a particular belief system.

If someone who believed that visiting a shrine would alleviate her suffering, and experienced relief after making a pilgrimage - I would love to read of her experience. On the other hand, I'd feel opposed to having such a remedy suggested as a useful treatment for me - since I don't believe, and it isn't scientifically validated information.

I feel the same way about "mind over matter". This idea of ridding oneself of stress to conquer cancer was made popular in the 1980's by the Simontons and Bernie Siegel.

It was never proven a statistically reliable or observable linear relationship, and many critics expressed their concern that the popularization of this belief actually resulted in "blaming the victim". In many cases, when cancer patients were not able to relieve themselves of stress (gee, with surgery, chemo, radiation side effects & fears of the disease being fatal - what a surprise!) it made some people feel even WORSE - because they thought they were causing their own disease progression, or horrid side effects, because they couldn't rid themselves of stress.

Personally, I like to go with whatever my intuitive feelings and responsive thoughts are in the moment. Sometimes that's quite dark and bleak, sometimes it's angry and frustrated, and sometimes, it's even quite happy and content... a mixed bag. I don't want to feel like I need to remodel my mood every time it turns black - I want to explore what it feels like, where it's coming from, and how to express it most authentically.

I love books like "Cancer Made Me a Shallower Person" and "The Year of Magical Thinking", and essays like "No More Self-Improvement" - I resonate with the authors' experiences and perspectives. The same goes for my ebullient moods - I wonder what it is that has left me so happy (in the midst of Stage IV bc & its dicey trajectory), and genuinely express my joy in ways that seem meaningful to me.

I'm in no way suggesting that my way of being would work for anyone else - just that it works for me. And, at this place in my life, it'd be so lovely to NOT be inundated with messages that seem to tell me I'm not living my life the "right" way!

(((hugs)))
Sandy in Silicon Valley