Sunday, February 24, 2008

Return visit with a surprise lesson

A note from a friend with a helpful story, which she said I could pass along here. She previously had radiation treatment for breast cancer, but had to return many months later for treatment in her spine.

I've been mulling over my experience with spinal radiation. I realized that the staff, when they are preparing me with information, has no way of knowing what I am anticipating about the experience. They don't know I am not taking them seriously -- because I do not know it will be very different from what I have experienced before. So I am thinking "5 treatments - ha! - the first 5 days of radiation were nothing! No side effects at all!" and of course a day later I'm lying in bed whining. I was very disappointed in myself.

You know that I loathe surgeons who say "You'll be fine in a day," when they know you won't, as if their words are divine power. That wasn't the case here -- I believe the staff told me the truth but I was not listening. I should have known, when they handed me anti-nausea medication, that they actually meant that you can feel nauseated.

I was an over-confident patient. I don't know what that means, but am mentally filing it away for the future.

1 comment:

e-Patient Dave said...

I feel for her... I too have been in the shoes of thinking I already know everything I need to know, especially when staff asks me every time "Have you ever had a CAT scan?" when I'd think their records would show that this is my 11th one (as happened to me today).

When something like that happens, I tend to assume I'm about to hear a bunch of things they have to say but I don't need to heed - and usually that's how it turns out.

But this anecdote is good input for the e-patient movement, which (in my view) includes becoming an increasingly responsible partner in the patient-doctor relationship. At first glance e-patient is about giving more power and trust to "e-enabled" patients, but the more empowerment we get, the more responsible we have to be.

I keep returning to the metaphor that "becoming an e-patient" has much in common with getting a driver's license.

In this case, clearly, your friend takes full responsibility for what happened.