Table 4 Illustrative data extracts from theme Q2: Troubling symptoms—‘you can sort of get GVHD anywhere’
Oral symptoms | “Eating is very… is difficult… anything too crispy or crunchy I tend to not eat, or if I do eat I eat it with my front teeth…nice spicy food but can't eat anything spicy anymore… there's something in toothpaste and chewing gum which just burns my mouth if I dare… I have to use a fennel toothpaste… I think my mouth… Has been the worst one I think; has bothered me the most, yeh. Because it's just ongoing and doesn’t seem to ever end.”—P1 |
“It started appearing in my mouth, you know my mouth was getting very sensitive, loss of sense of taste, and it's… I mean it was… my mouth was quite sore and ulcerated…it makes eating things like crisps and crunchy toast and stuff like that is a bit problematic …Losing my sense of taste completely has, you know, is a bit of a loss.”—P2 | |
“I had like a bad ulcer reaction in my mouth; top half of my mouth cos it ended up looking like… the only way I can describe it, it looked like… like a moon sort of crater effect, all the holes is where all the skin and everything got into the… the like ulcer effect on top of my mouth. I had about a hundred odd ulcers we reckon in there once, but that was, as I say, a few years ago. I ended up having to be sort of on a drip sort of thing, and pain and numbness in my mouth.”—P4 | |
Loss of appetite | “She'd [partner] gone to all this trouble to make this really nice meal, and there I am—don’t want… don’t want to eat it, but it was not that at all, it was just the sort of smell of food, the texture, the taste; looking at it just made me feel quite ill.”—P5 |
“A loss of appetite; loss of interest in food. And I used to do all the cooking in the household, so it's not that I haven't had an interest in food before.”—P8 | |
Ocular symptoms | “Then my eyes have been badly affected as well, and that’s ongoing; they're still affected. I have… If I cry I have no tears… sometimes they get very, very dry, and it's like sometimes I wake up in the morning, it feels like my eyeballs have stuck to my eyelids where they're so dry; they just don’t have any… they don’t have any moisture in them at all. And they get very sticky as well and gungy.”—P1 |
“My eyes are sore, so when I wake up in the morning my eyes are well, hard to open and painful for, you know, probably 2 or 3 min really until I've washed them.”—P2 | |
Cutaneous symptoms | “It was embarrassing because I would have erythrodermic reactions over great chunks of my body if I got hot… if I was out walking I would feel self-conscious about the look of it and, you know, if we're going into a public place it's… although I knew it wasn’t catching you get that impression, so there's a psychological element to the … of the way the skin looks… it's socially embarrassing and therefore, you know, if I catch myself scratching in public or, as I say, when it was florid it was impossible to disguise, so there is the withdrawal from social situations.”—P3 |
“Although it's itchy and irritating, it's a painful itch and it can be quite distressing at times.”—P3 | |
“Severe… it was just very itchy…it was like underneath my breasts and between my legs and just really awful, awful itching.”—P1 | |
“It was only, you know, a sort of a bit itchy on my head, so it wasn’t like I was walking around, you know, continually wanting to scratch everywhere. You know, it was just sort of there and, you know, and therefore a visible reminder of… of the fact that I had got GVHD.”—P2 | |
“It was literally like someone had just turned like a dimmer switch on a light; it just literally just went red and it just… it just sort of like grew out… come out of nowhere really. And it was … then it just started getting rather tight and really sort of like, not burny, but really hot like a sunburn effect.”—P4 | |
“Well it's very tedious having to apply the ointment and then wait 45 min or so, and then put an emollient on and doing it twice a day. It takes a lot of time and it's and very tedious thing to have to do.”—P8 | |
“GVHD doesn’t really cause me any trouble except because it's the skin; GVHD on the skin.”—P7 | |
Lung symptoms | “And I was told that you could get it… you can sort of get GVHD anywhere, and when they thought it was in my lungs, cos I'd had a lung function test… I think the general consensus now is that it might be something to do with my diaphragm, which stopped working properly. I don’t know, but that was how it felt. And very uncomfortable lying down, if you know what I mean, just for trying to sleep.”—P5 |
Treatment side-effects | “I think it's not so much the GVHD itself; it's the drugs that go along with it that have caused the…issues.”—P2 |
“My sleep patterns have been severely impacted by taking the steroids, so you know, three or 4 h of sleep is… has been typical.”—P6 | |
“I know that the side-effects are outweighed by the benefits, but it still feels very harsh if you know what I mean? They're very hard on my body and that, where the insomnia in particular, which was very hard because I'd go to bed and I'd be asleep for 40 min or so, then I would just wake up and the only thing I could do would be just to go and watch the tele, and it would be 2–3 h watching television.”—P5 | |
Depressive symptoms | “I was quite surprised at how quickly you can sort of get into this feeling of, you know, of the depression, you know, and it’s quite scary the depression and… Because you don’t… never having been in that situation it was very hard to sort of come to terms with it.”—P5 |