e-Patient Dave

Power to the Patient!

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What a vacation THAT was. Thank you.

The plan

Starting a business is hard. Advancing a movement is hard. It’s been tiring. So last month, when I announced my first vacation in seven years I said:

For me “time off” means freedom from agenda. Don’t tell me to stay offline; that would be an agenda … I’ll read, I’ll sit on a beach (under an umbrella, for cancer prevention), we’ll tour the area …. Most of all, we’ll do whatever we feel like.

I said

We’re going to stay with friends, so it’s not like we’re splurging on a resort, or even a paid campground. On the other hand, the friends are overseas, which is sweet. :-)

I said

My assistant Linda will be monitoring my emails and will be able to reach me.

The outcome:

It worked.

I haven’t worn socks since June 22. Most days I wore sandals.

I haven’t worn long pants since June 20. Most days I wore swim trunks.

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Chinese saying: “Prolonged illness makes the patient a good doctor”

Being on vacation (yay), I’m finding lazy time to dawdle in all kinds of things I’ve postponed. One of  them is the conversation a year ago about my TEDx Maastricht talk, “Let Patients Help,” http://on.TED.com/Dave:

Last night I ran across this, from a Chinese college student named Gao Yixian:

Jul 16 2011: Thank you very much, Dave! It is a very good and brilliant idea. In fact, there is an old saying in China- “久病成良医”, which means prolonged illness makes the patient a good doctor. So let patients help patients!

Love it.

And now, back to the beach.:-)

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Lung cancer resources and patient communities?

Busy times: the other day I asked about endometrial cancer, and now I’ve had two requests for lung cancer help in the past three days.

I gather all these answers on my Patient Communities page, as best I can. (Just fixed the link – 9:18 ET)

I know there are many communities for lung cancer patients, but I don’t know where they are. So let’s get going, people: let us know what you know!  Even the obvious ones.

I know there are some on Inspire.com and ACOR, but I don’t have the URLs.  Paste ’em in here and it’ll be easier for the next soul in need. Thanks!

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A dermatologist responds: “Who the heck is charging $3000 for Mohs first stage?”

Well, that’s not exactly what he said. And I’m not even sure he’s a dermatologist, though it sure sounds like it.

For newcomers, this is the latest in a four month saga, including these posts:

Today (Saturday 6/16) on the “decision” post, commenter “Joe” (apparently a dermatologist) said the most interesting, thought-provoking stuff I’ve ever seen anywhere about basal cell carcinoma treatment options:
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e-Patient resources for endometrial cancer?

A friend of a friend writes:

I was recently diagnosed with stage III endometrial cancer. Although my doctors are all extremely competent (a top-shelf cancer center), it is disappointing to discover that they do not always have crisp answers and the tests are far from accurate. I had no symptoms until recently and pre-surgery tests indicated I had pre-cancerous cells at worst. It wasn’t until surgery that they discovered “extensive” cancer in my uterus which has spread to the lymph nodes.

We now have a plan which seems to be pretty standard (Radiation and Chemotherapy), and my doctors discuss treatment as though they aim to eliminate the cancer entirely. But stage III doesn’t always have a happy ending and I want to make sure that I do everything in my control to effect the best possible outcome.

Any suggestions for e-patient resources? Best places to learn  about the condition and treatment options? A good patient community?