Interview with Patient 1
DR LOVE: Do you think that you received adequate medical and psychosocial support during this whole time or do you think there are things that could have been done better or more effectively?
PATIENT 1: I think that’s the weak area is the support. Medical care was superb.
DR LOVE: So it was more the support, the counseling information that you thought could have been better?
PATIENT 1: Yes. I think that it would help to almost have someone assigned to me, who I could email, who I could talk with. A patient has so many questions, so many fears. You feel so isolated. And I tried – anytime there – I went to a couple – I went to a makeup thing. Wherever I could talk with other people and it helped me a little bit and it helped my humor. It’s hard to keep your humor when you’re going through a life-threatening situation.
DR LOVE: You mentioned that patients in this situation often have a lot of questions. What were the kinds of questions that you had in the beginning and what kind of answers did you get?
PATIENT 1: Well, what caused it? That was a big thing. Was it because I smoked 35 years earlier, minimally, but smoked? Was it because I was raised in Pittsburgh, maybe a mile-and-a-half from the mills that were going 24 hours a day making stuff for World War II. I’m ancient, so we go back quite a while here. Was it my ceramics studio. I work in different media now. I shut down my ceramics studio when I was diagnosed with this, and I worked in an unsafe environment because in the days that I was a ceramist, we weren’t as cautious. I wore a mask, but didn’t have the specific equipment as people work with now.
So, was it all those years of mixing glazes, of spraying glazes, who knows? And nobody had an answer for that. Nobody. And they don’t have an answer for the smoking. I mean I know the statistics.