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Table 6 Illustrative data extracts from theme Q4: Unpredictable course and uncertainty regarding the future

From: “Is this the GVHD?” A qualitative exploration of quality of life issues in individuals with graft-versus-host disease following allogeneic stem cell transplant and their experiences of a specialist multidisciplinary bone marrow transplant service

Slow recovery “The whole recovery process is … it's up and down from week to week.”—P8
Unexpected disease “In terms of the bone marrow transplant, then it was a bit of a shock to me to get the graft versus host; I didn’t really know what was going on, and I wasn’t really expecting it.”—P6
Challenges planning the future “Because the chronic just seems never ending… That’s the only thing that would probably get me down is the fact, you know, how long is it going to go on for.”—P1
  “I am a planner. I like to, you know, sort of sort things out and… but with this it's… you know, make sort of tentative plans…It’s all dependant on, you know, what happens with the GVHD and, you know, nobody can answer that question; we just have to keep ploughing on and seeing what happens.”—P2
Affecting any body site “It's a strange disease because it can affect so many different parts of the body…
You know, when was it ever going to end and where is it going to come up somewhere else next or, and where is it? And sometimes it does… it is a bit of a concern sometimes because I think I don’t want it coming up somewhere where it could really be a risk to my health, you know.”—P1
  “But that was the only frustrating thing in terms of the GVHD diagnosis. It was very… it's so non-specific. I mean I could have it anywhere; it could be in my gut or whatever, my lungs, whatever, skin.”—P6
Optimism about the future “Hope that my system gradually adapts to the new… my new blood cells and sort of they all get to live together happily instead of fighting.”—P2
  It may be over optimistic; I don’t know, but I'm hoping to keep it under better control.”—P3
  “[I] just see the future as well, this is a blip, we’ve got over it; we know how to get over it in the future if it happens again; hopefully recognise the symptoms.”—P6