Table 2.

Additional Supporting Quotes for all Themes and Subthemes, with Participant ID, Age, Sex, and Tumour Type at Interview

Theme	Subtheme	Illustrative quotes
Emotional response to the diagnosis		• “When I was first diagnosed, it was such a shock and there was a huge sense of not knowing what was going to happen and a loss of any feeling of control over my life.” (Pa29, aged 51, female, grade 3 oligodendroglioma) • “It does have a huge impact on me absolutely but I’m able to work, I’m able to have moments of joy and all of those kinds of things. So if I’m honest, I think I’m quite proud of how I’ve managed to deal with it.” (Pa40, aged 31, female, grade 2 astrocytoma) • “I think for the first couple of years I was in complete denial it [the tumour] was doing anything to my life, completely in denial.” (Pa19, aged 55, male, grade 3 oligodendroglioma) • “I really am lucky, I’ve seen other people with brain tumours who are far worse than I am as far as the impact it had on their life and the life of their loved ones and the disability that they’re having to cope with” (Pa15, aged 55, male, grade 2 astrocytoma)
Living with the “What ifs”1)2)3)	“What if I have a seizure?”	• “There’s been times when I’ve been in amongst a crowd of people and have a seizure. I’ve had somebody say, ‘Get off the bus.’ You know, I’ve had one where the driver said, ‘Get off the bus.’” (Pa25, aged 45, male, grade 2 oligodendroglioma) • “I wouldn’t venture as far as I normally would away from the village. And I think that was only because, you know, if you had a seizure or something if somebody would come across you or find you.” (Pa38, aged 55, female, grade 2 astrocytoma) • “I had a job at the time which involved getting a very early plane on the Wednesday morning . . . I started to worry about getting up that early and whether the seizures would come back. I found myself living a sort of lifestyle that I no longer wanted to be in because of the seizures.” (Pa35, aged 49, male, grade 2 astrocytoma)
	“What if I forget?”	• “Yesterday morning, I was four hours late [to take the medication], which on a twelve-hour cycle, I consider that to be really big. Now, I’m obviously catching up.” (Pa25, aged 45, male, grade 2 oligodendroglioma) • “There’s not much I can remember how to cook, now. I mean, I probably would be able to cook a sandwich. You know, cook the sausages. I’d be able to put stuff in the grill, but I wouldn’t remember how to do, like, a proper meal.” (Pa25, aged 45, male, grade 2 oligodendroglioma) • “I haven’t been able to walk around as much. [Before the diagnosis] I could always get back to my home. One day [wife] dropped me off at the Co-op. I said, ‘I’ll walk back up whilst you’re shopping.’ I did get lost so I had to put my Google App on my phone and work out where I was.” (Pa30, aged 61, male, grade 3 oligodendroglioma) • “I get reminders off the hospitals and doctors, which I am glad about, because I will forget. I always try and put things in my calendar in my phone and set an alert, but I don’t always remember to do it once I’ve got the information.” (Pa20, aged 47, female, grade 3 oligodendroglioma)
	“What if the tumour progresses?”	• “I have three kids. I think that’s a deep rooted parental thing that you feel like you’re letting people down if you’re on the way out . . . I let you down because you’re my kids, I’m meant to be here to look after you. I’m not meant to die.” (Pa28, aged 66, male, grade 2 astrocytoma) • “I feel like I’m in a nightmare and I’m never going to wake up . . . That’s part of the anxiety . . . it’s like you’re waiting for death, and it shouldn’t be that way. Or even worse, you’re waiting to be even more disabled than I am now.” (Pa9, aged 22, male, grade 2 astrocytoma) • “I get a little bit anxious about things, especially when I’m going for my scan, just until I get the results. So for a couple of weeks I’m on tenterhooks.” (Pa34, aged 66, female, grade 2 oligodendroglioma) • “Initially, you felt you were like a ticking time bomb, I would say, just waiting for something to happen. And if it did, you know, you were leaving your family behind” (Pa38, aged 55, female, grade 2 astrocytoma)
	“What if I can’t go back to work?”	• “I was made redundant because I was making mistakes. I’d forget something crucial to a film shoot. I just generally didn’t feel well . . . it’s just that fatigue, exhaustion, utter exhaustion.” - Pa18 (female, aged 55, grade 3 oligodendroglioma) • “To suddenly be told that you can’t do anything . . . I lost confidence after losing my job because someone saw it [the diagnosis] as a reason for me not to be working anymore, and it kind of kicks your confidence a bit.” (Pa20, aged 47, female, grade 3 oligodendroglioma) • “The financial side puts an awful lot of pressure. I mean my husband’s been working two jobs and we try and run a tight ship but the work, the hobbies, the driving, your interests, your social life, when you’re stripped of everything it’s very grounding.” (Pa18, aged 55, female, grade 3 oligodendroglioma) • “I’ve always enjoyed my work, I’m very lucky in that respect. In fact, getting back to work was a nice thing for me to do. I missed work when I was off. They’re long, lonely days especially when the weather’s crap and you can’t do much.” (Pa15, aged 55, male, grade 2 astrocytoma)
Changing relationships4)	Shift in family relationships	• “I was sitting at home thinking that I was useless . . . it’s always been a pretty 50/50 equal relationship and now I feel like I’m chief cook and bottle washer and he’s working still. I just feel that I don’t contribute as much as I did before I got the brain tumour.” (Pa29, aged 51, female, grade 3 oligodendroglioma) • “You’d have to ask my wife about my personality changes . . . She does say that I’m more short tempered and I am forthright and maybe not as ‘warm’ as I used to be.” (Pa31, aged 53, male, grade 2 oligodendroglioma) • “I can see that people worry about me. I could be sitting on the sofa reading a book or watching something on TV and when my mum’s here I catch her looking to see if I’m still breathing. Then she frets, ‘You’re doing too much, [Name].’” (Pa18, aged 55, female, grade 3 oligodendroglioma) • “It’s made us really, really value what we’ve got and really cherish that. It’s one of the good things in some respects. It has utterly cemented our relationship.” (Pa15, aged 55, male, grade 2 astrocytoma)
	Maintaining a social life	• “I wasn’t able to go out and visit friends or anything really because I just didn’t have the energy, just no energy at all.” (Pa35, aged 49, male, grade 2 astrocytoma) • “I constantly feel as though I’m on the outside, looking in. I’ve said that to the family, because I feel as though I have to invite myself to things.” (Pa20, aged 47, female, grade 3 oligodendroglioma) • “Some people, it’s [the diagnosis] just not something they’re willing or able to get on board with . . . maybe they’ll reappear when things are easier for a period of time, so they’ll be there for the fun times so to speak.” (Pa40, aged 31, female, grade 2 astrocytoma) • “My speech sometimes goes a bit slurry . . . I don’t think I would put my point across and join in the conversation as much as I used because of that.” (Pa38, aged 55, female, grade 2 astrocytoma)
Faltering independence	Managing everyday activities	• “I have to think what I’m ordering off the menu if we do go out for a meal because I feel embarrassed because I can’t cut up the meal because I can’t put pressure down with my right hand. I like steaks and whatever but I can’t cut them up.” (Pa22, aged 43, female, grade 2 astrocytoma) • “I’m going for the [job role] instead so I can catch some bad guys but it’s the fitness side I fail. I failed on the bleep test because I couldn’t turn around quick enough.” (Pa26, aged 37, female, grade 2 oligodendroglioma) • “I wouldn’t get on a bike. My balance isn’t . . . you know, there are certain things that would be dumb.” (Pa13, aged 52, male, grade 3 oligodendroglioma) • “If I washed my own pots, I was then too tired to go for a walk and get some fresh air and walk my dog.” (Pa17, aged 51, female, grade 3 oligodendroglioma)
	Losing your driving license	• “The only downside was I couldn’t drive, because once you have a seizure, you have to have a minimum year off. Being in sales, it’s not ideal.” (Pa11, aged 57, male, grade 2 oligodendroglioma) • “You feel like you’re, not a liability, but you feel like everybody has to almost give you something, that type of thing. I don’t want to be like that. I want to be the person who could give people lifts and that type of thing.” (Pa32, aged 46, female, grade 3 oligodendroglioma) • “The physical side, and losing my driving licence. It’s the independent side of me that gets the kick in the teeth.” (Pa26, aged 37, female, grade 2 oligodendroglioma) • “You don’t realize when you’ve driven all your life and I used to do crazy journeys and to have that taken away, that’s the biggest loss.” (Pa16, aged 69, male, grade 3 oligodendroglioma)