My book.

My book.
"Fascinating" Stephen S. Hall. writer, N.Y.Times magazine. "Hard to put down." A.C.P.A., American Chronic Pain Association.

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Wednesday, February 1, 2012


I was asked to be on a panel at a conference about drug clinical trials. The focus was on ways to get more folks enrolled in, offering to, and doing them in a way that is more patient friendly.

I listened to one or two presentations.

The first was scary. The presenter was talking about a trial for those with bladder cancer, a very difficult cancer, in terms of what it is and how it easily reappears. Over the period of a year they would have 9 blood tests, 8 telephone calls from the tester, and 16 catheterizations. Not a trial in which many would want to subscribe.

The discussion was about how to turn that around and present it in a positive manner. The second presentation was more about how trials are done including the phases. That was interesting. It gave me a better understandiing of the recruitment process.

Then we had our panel. I was there with 2 other women. June had Parkinson's and, like Susan (both pseudonyms), who had diabetes, had participated in clinical trials. I have not.

We talked about joining a trial: why, or why not, did we expect to be paid or be given some form of reimbursement, how did we want privacy and data handled, and more. It was fun.

Then it ended.

I was walking away when Joan (pseudonym) asked me a question. She and I stood and talked for about an hour. About the conference and issues I, and the panel members spoke about, then about patient trials, and then about our experiences with some blogs and online things. Just plain old me and someone else, acting like regular people.

The discussion was not about things that were out of my life sphere or sphere of reference.

The other day at church a couple of people were talking about an ill spouse. The talk changed to another disorder. Both were problems everyone in the group could relate to, but me. Trying to throw my hat in the ring was possible only if I said something about "Well, when you have chronic pain..." Nope, no ability for them to relate to that. I watched for a minute or two, a puppy with her face pressed against the window, then left. I had nothing more global I could add.

With Joan, our talking was about many things we both had experience with and knew about. It has been a very long time since that has happened.
(I talk on the phone with my friend Dottie, almost daily, which is great and our conversations are long and varied. But it is different when you are face to face with someone, especially a new person.)

I did not have to read, and I talked to one person at a time. It made it a somewhat painfree day.

Could I do it again? Definitely. Not immediately because, well, there was the pain.

But it was the best day, partly because it was a day, a full day, not ever for sure. But in a very long time.

As I write about it now I am still smiling.

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