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SUSAN: I'd just like to say one of the first things for advice would be to get connected
with other people and get support, because I'd get a lot of strength from that once
I got involved with the LUNGevity community. A lot of times I think I'm having an issue
or a problem or a concern, and I'll post it and then realize that other people are
having the same issues and that I'm not some unique person. I'm human, and this
is natural what I'm going through. That really helps me to get over it and not dwell
on it so long. (0:00:30) DONNALEE: You really have to be your own advocate,
and it's up to you to really put forward your needs and express yourself and ask your
questions. Unless you are fully understanding what the doctor is telling you, don't stop
asking questions. Sometimes they use language that is really technical jargon that's hard
for the mere human to follow. So if you don't understand say, "Could you put that in simpler
terms?" (0:01:00) Just take a stand for yourself. You are your number one guardian,
and you must take care of yourself. DUSTY: Talking about lung cancer advocacy,
I mean this is at the heart of it. We've got to be our advocates for our own healthcare,
and that's where it starts. I press. I don't just accept whatever the doctor says. Ultimately
I may come to that conclusion, but I press. I question, and I get an understanding of
why we're doing what we're doing before I have peace about doing it. (0:01:32)
SUSAN: I guess I would agree with DonnaLee to ask the questions. I mean looking back
for myself, I didn't ask questions soon enough. [INAUDIBLE 0:01:39.9 sounds like:
Now I ask enough.] But later on I did start to ask, and I'm fortunate enough to have
the email of my oncologist. So I would email him on a Saturday night and say I'm having
such and such happening. He always told me no question no question is too small. Once
he found out how bad the problems I was having, he wanted to know. (0:01:57) So I think it's
not that the doctors don't want to tell people or give the information out, but they
don't give you information you don't ask for.
MATT: Seek out the best medical team that's available to you. You don't get a second
chance with this, so find the best people possible. Even if you have to travel, travel.
You get one shot at it, and you want to do the right things. You want to give yourself
the best chance. SUSAN: I happen to have a doctor that he doesn't
believe in saying you have 6 months or a year. (0:02:30) He told me I did have stage IV and
they couldn't cure me, but they gave me as much time as they possibly could. I think
I had a two-year window or a one-year window. I'm going for as much time as I could possibly
get. He laughs at me sometimes when I say, "I'll be here for my 10-year checkup"
or whatever, but he doesn't say that that won't happen.
DONNALEE: Don't pay attention to statistics. You are an individual. You are not a statistic.
Your life and your experience and your background and your circumstances are going to be different
than anybody else's who has ever had cancer before, so you can't relate directly from
what you're hearing. (0:03:06) You have to be positive. You have to focus on what
you can do and how you can help yourself. DUSTY: I suggest that whenever they go to
see their doctor they have a spouse or a daughter or son or somebody -- an advocate -- with
them, because when you start to hear the doctor talking it's just so easy to forget all
the things they're saying. (0:03:29) DONNALEE: Doctors are seeing hundreds of patients,
and it's hard for them to have the complete empathy and connection with every single patient
and take the time. So you really have to make them focus on you when you're with them.
Prepare any questions you have or things you notice. Keep notes and keep track of those
things as they occur so that you don't forget to talk about them when you see your doctor.
(0:03:55)