The more you know about, the better patient
you’re going be in a lot of terms. There’s even been a study done, I think,
by one of the bigger hospitals where they show people who are better educated with the
disease have better outcomes. I try to share as much information as I can,
and I’m empathetic with the people who are newly diagnosed, and these are the people
we really want to get to our group, and really want to help. If you understand the disease, and its vocabulary,
I mean, the language
in myeloma is difficult. So I tell people so you can’t bite it off
at one time, just little bits and pieces. And try to learn the symptoms, the progression
of the disease, also what the medications are, the different groups, based on mechanisms
of action, the side effects and all. I think once you have that knowledge, and
as you gain, you can better communicate with your physician and your care team, in asking
the right kinds of questions – the questions that are going to help you to make a deci
sion
on therapy. Because you get back in the car, and you say,
“What did he say about that or this?” And you will have someone else who can help
answer those questions, someone else who will remember that, because you are trying to think
of so many things. I try to be prepared. I have things written down. I know he only has 15 minutes with me, so
I try to maximize that. Those are tips that I pass along to people
in our support group as well. But being knowledgeable – knowledge is power
– there i
s no doubt about it. The more knowledge you have, the better you
are going to be. As a patient, you will definitely have better
outcomes because you will be able to decide what’s best going forward.
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