September 22, 2010

Gilda's Club: for support, abandon all privacy

So, I go looking for support, finally, from people in situations like mine. But first, an interview with a social worker. This one lied about going to my college. So much for trust from the outset. I mean, if you're going to lie to make a client/patient feel like you have something in common, don't pick something that can be easily fact-checked.

The interview goes on, with a woman I've never met trying to get my entire mental health history along with the cancer story. Confidentiality? They asked me to sign a release form so that anyone of the social workers in the house can chat about me and and anything I've said about anything. I'm thinking, no fucking way. Gilda's not even bound by HIPPA.

HIPPA, the law that's supposed to be about patient privacy. The long and short of that is, if I don't explicitly give a medical professional permission to discuss anything about me with anyone else, what I do discuss is supposed to be confidential. That is, in as much as anyone has any privacy in this century. HIPPA is a piss-poor offering, but it's something.

Purpose of interview? To find where I fit into there support group scheme. Who are the people in my situation? I fit into the "post-treatment" category, meaning I'm done with chemo. The fact that I'm still or again on a medical mystery tour doesn't fit into the Gilda's Club calculus.

And, while I'm signing away rights, will I agree to let the Gilda's folks talk to my shrink? Excuse me? How exactly is this offering me support? More like offering to put my history as the Prozac poster adult on the AP wire, for those who know what it is. Or on an unsecured Web site, for those on the other side of the digital divide.

Turns out that the "wellness" group for which Gilda's clan thinks I'm suited consists of people just diagnosed, people in treatment (i.e., undergoing chemo or radiation or what have you), plus those, like me, who have gotten great grades for going through chemo and having a clear PET scan.

Even if it has been followed by July 4 in the ER, and the first week of September bouncing from ologist to ologist: onco to cardio to radio and back to onco. And more: my white cells are tanking and I need injections to boost them. When that doesn't work, I get a bone marrow biopsy.

A week later, I'm still in pain, and no clear answers are forthcoming.

"Wellness" is one of those words that makes me cringe. Websters defines it as the quality or state of being in good health especially as an actively sought goal." Need I say that no one crosses Gilda's threshold without some interest in better health. Or at least an interest in not feeling alone with cancer.

Problem is, I don't think yoga classes are going to do it. Nor arts & crafts. Nor lectures about my "disease." Or afternoon tea once a month.

I went to Gilda's in the hope that I would find people who could help me feel less frightened that I've been tagged a member of the medical mystery tour. Instead, I found my friend M. Wyrebek's poem title more than apt: Be Properly Scared. May not have been what Gilda's crew was aiming for, but they more than hit that target.


Anonymous Anonymous said...

That's great news on the recovery front!

Of course you can't trust a woman like Gilda, not with all that hair tossing going on. But I think the general spirit of Alice going in search of a support group is great. The problem seems to be that you were expected to be the one providing most of the support. Lydia

2:19 AM  
Anonymous Anonymous said...

Hi Alice,

Sounds like a dreadful experience. I wonder if Gene Wilder knows what goes on there?

Perhaps it's time to start your own forum. I have never done such a thing, but it is my understanding that one can make them private, and by invitation only, which might be a good way to begin.

I have done a small amount of research, though that's as far as it went. It was for someone else, so I didn't dig very deep.

Here's what I have, in the event that you are interested.

This book is supposed to be the best one around, and apparently there is much free info on the accompanying Website, also listed below.

Book info:

Book site:

This last link is supposed to be a decent place to build one's forum, and it's free:

Best of luck with whatever you decide to do here.

The best I can tell you now, which I doubt is much solace for you at the moment, is that it will get better.

6:04 AM  
Blogger the only daughter said...

Lied? How so very disheartening. Here's to the tour taking a turn toward a support group that is more, well, supportive.

::sigh:: white cells.

1:12 AM  

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