| Experience during treatment |
It made me look very sick. Cause my face and arms were extremely red. And at times had blisters on them. [Pt #1] It was difficult because it was painful and unsightly….if I were to say bad, that would mean to me very, very painful. [Pt #2] [Which side effect that you described earlier was the worst sir?] Probably burning, tingling sensation on the scalp. Much similar to say, a sunburn feeling. [Pt #8] You get that fluorouracil cream, you get diagnosed with getting whatever that treats … and, um, it was terrible… So I mean, I'm happy for treatment, but it's hard, some hard treatment.[Pt #9]
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| Symptom timeline |
I'd say at least five, four to five days. That's when I noticed it starting to turn red, it stinged, it peeled. At the end of the treatment, my last day that I used it just seemed like stayed red for a long time. And I would I would say approximately a good month before it ever started diminishing and then vanished probably within that next month, just real slow. [Pt #5] Probably within 12 to 24 hours at first application. [And how long did they last?] They probably stopped about 3-4 days after my last application. [Pt #8] It starts itching and burning. So those were some side effects. High levels of pain once you get into the, you know, it started hurting probably past the itching and burning phase, you know day five to seven, and at night, you know at night I get home and you know I think it was I was reapplied on it twice a day. I can't remember but I remember it hurts when you go to bed. So you have sometimes have trouble sleeping, because of the pain and you don't want to move too much. You know put your face on a pillow like the last thing you want to do. [Pt #9]
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| Daily activities and psychosocial impact |
It made me look very sick. Cause my face and arms were extremely red. And at times had blisters on them. [Pt #1] I think it did dramatically. Yeah, when you can't sleep at night that's pretty serious. I think I was retired at the time. So it didn't affect my job responsibilities, but it’s certainly affecting my everyday life because I was just miserable. [Pt #3] I didn’t let it affect me in any way, I went on and did everything that I needed to do. You know, there was there were times it probably caused me to not get decent sleep, but other than that, you know, it was painful. Nobody knew about it. I didn't tell anybody or let anybody know or let it inhibit anything I needed to do. And I have a high tolerance for pain, which is a whole other story. [Pt #4] Well it didn't make me feel good. If my skin is blistered, and I can’t go out with friends and everything and then obviously it doesn't make me feel real good. [Pt #7] It was hard when I used it. Yeah, I mean, just like anything else, you look like a zombie... People probably stare at me, you know? But it's, it's I guess it's all how you take it. You know, I've had so many hard things that it doesn't, you know, I just kept doing... I mean, socially, I probably went out less and did things less just, I don't want to have to have that conversation. [Pt #9]
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| Challenges while on treatment |
It starting to turn red, it stinged, it peeled. At the end of the treatment, my last day that I used it just seemed like stayed red for a long time. And I would I would say approximately a good month before it ever started diminishing and then vanished probably within that next month, just real slow. [Pt #5] It's just that it's a commitment on my part whenever I started it, that I would not be venturing out in public too much because it does look like a leper or something. I mean, it's like more like leprosy. [Pt #7] Well there was a period of time where I would have very little exposure outside. Generally, it said it was recommended that I should do it in the winter. It set strict adherence to not going out in sunlight, to touch my skin. Applying it twice a day and made sure I wore gloves when I put it on so as not to get it, you know rubbing my eyes for example or any mucosal membrane. And then also using pillow cases such that I didn’t have to be concerned about the pillowcases becoming discolored or damaged that type of thing. When I applied it before bedtime. [Pt #8] Only one thing that's good about it is it's easy to put on. But after you put it on it starts... I mean you can't touch it. You know after a few days your face is so tender, and I only put on my face that’s why I keep talking about my face, but so tender you definitely ain’t going in the sunshine. It's like a Marvel movie the way it just burns when you get in the sun. It's crazy. And then once your face, my face started swelling up to the point where I was having, I couldn't chew or having trouble just talking, couldn't smile. A smile on my face was gonna crack open. Those are some of the basic challenges, I guess. And itching and burning, of course, I mean, the whole time. [Pt #9]
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| Level of preparedness |
Well, I think the entire staff, the dermatology department were very supportive, you know, not just the doctors but the nurses. [Pt #2] No, I didn't get any support. It was like the job that I had was to survive it. [Pt #4] No, they didn't mention anything like that. It didn't bother me with my doctor. I mean, it just didn't work for me. I don't know. I'll tell him when I go back. [Pt #10]
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