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ceeceek:
For those of us,,when new to the site,,,I think it would be a good idea to perhaps have a seperate forum on the subject of Extreme Cases.....as long as it is used for extreme..one of the dis-heartening (sp) things I found when first on the site, was the amount of people having problems, when in actuality, many people suffer no ill effects from either surgeries or radiation treatments at all..The support has been great, but initially all the info was overwhelmingly scary....I would suggest a forum for good outcomes as well as extreme cases..or at the very least a seperate one for patients families....it is hard enought to deal with a sick family member, much less try and learn a new web site.....
Just my opinion
Ceeceek

Raydean:
My husband fell into the 1% so I can identify with the isolation of the situation.  When outcomes are so many, beyond the norm answers are few and far between, sometimes there are no answers.  It's hard for others to understand, because the  ANer's that fall into the 1% usually have outcomes that are the ones we all fear the most. The "that could of been me".  Sometimes that (outcomes) is all other's see.  The 1%'s are often referred to as "horror stories" because that is all that others are seeing.  But you know, there is a lot that can be learned from those with poor outcomes.  The courage, adaptability, grace under tremendous pressure and losses, the strong will to live a valued life.  Having walked along side of my husband thru his AN journey his biggest desire was that others would look deeper then the outcomes and see the person that he was.   He (and myself) pushed the doctors for answers, not because it would change anything for him, but with the hope that medical lessons learned from his case would help others that followed to have better, more normal outcomes.

A safe place to be able to share, to be able to discuss your deepest fears with someone that has been there is invaluable.  To know that you aren't the only one with these problems lessens the isolation that comes with severe outcomes.  First hand i know how uplifting encouragement and a kind word can be.

There's a fine line in sharing our outcomes and  by sharing the outcomes causing undue fear. One of Chet's biggest fears was that if a person didn't understand his starting place, and all they saw was the outcomes and delayed their treatment, or changed treatment or put themselves at risk because of his poor outcomes .  He strongly felt that there was (is) a responsibility to others and for that reason never fullly shared everything. 

I don't know what the right answer or middle ground would be. I know that what we all have in common is much more then the differences and while we all have the AN in common, we are all so much more then the AN.  Perhaps a seperate Willing to Talk list  for those with severe problems.
My inbox is always open!!

Best to all
Raydean

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