Table 2 Participant quotes relating to the respective sub-themes
Feelings towards diagnosis and treatment | |
|---|---|
Participant 11, naïve. | ‘Some of it was shocking to find out. And after that, again, it took me, I would say, around a week or so to accept what has happened. And then one day I remember I was saying, why me? And then I suddenly realised, why not me then?’ |
Participant 13, naïve | ‘Yes, I’m just preparing my bag and myself. I was just thinking whatever has happened, it has to happen for the best. And I have to trust in the surgeon, and that’s it.’ |
Participant 15, experienced | ‘So it was just process, that’s what was going to happen, this has got to happen. And because there was so much more going on, it took the emphasis out of the sting in the tail, if you know what I mean. But yes, I just carried on. Just got to do what you’ve got to do. Yes, we all got a little bit upset and worried. But I was told at the time it was curable, so that was what I kept in my mind. And that’s what got me forwards.’ |
Participant 16, experienced | ‘Well, I think to stay positive, it’s a mindset you need to be in, I think. And, fortunately, that wasn’t very difficult for me. But the attitude of mind has got to be the right one, I think, and full knowledge of what to expect, so that you’re not given any surprises along the way, so to speak. Better to know everything than only bits and pieces.’ |
Attitudes towards prehabilitation | |
Participant 3, naïve. | ‘I think I would be responsive, because I always want to do the right thing. I would consider it a priority, really. It’s necessary to keep yourself in the best possible condition you can be, to face whatever’s coming and then get back to doing all those other things, like grandchildren or whatever. If you’re only halfway there, the prognosis can’t be as good if you don’t go into it the best you can be’ |
Participant 10, naïve | ‘I didn’t receive any exercise advice or food or… I didn’t get anything. That would be good, I think’. |
Participant 12, experienced | ‘I was very eager to do anything I could to improve the situation. Absolutely if they’d told me whatever I would have done because anything that helps has to be to my benefit, doesn’t it, at the end of the day. So yes I was very willing to make the changes.’ |
Participant 18, experienced | ‘It was so useful, and you feel supported as well. And you feel that there’s people that is concerned about you, there’s people out there who think that you need this help. I think this Mile programme is one of the best, and will recommend this to anyone who gets cancer because you feel. I didn’t know there is lot of help like that. When they talked for me they are got this programme there’s a physio, the dietitian, I’ve got this letter about the psycho, I was like, oh yes there’s good things in this world’. |
Goals for recovery | |
Participant 4, naïve | ‘Tennis, because I’m an avid tennis player, and that is my goal, is to get back on court.’ |
Participant 5, naïve | ‘When I think back now, autopilot, literally autopilot. I still feel like I’m running on autopilot. It hasn’t really caught up with me yet. I think maybe after everything’s done, I might need just time out before I go back to work just to catch up with myself and to deal with what I’m going through, what I have been through, etc. But right now, I’m literally just going on autopilot. That’s what I feel I’m doing. So, I don’t know.’ |
Participant 15, experienced | ‘Just being myself. Just being back to me again without having to think about it. To be fair and honest, my recovery isn’t how I imagined it. But what pushed me on was that I was going to get back to how I was, just carry on with life just as before diagnosis, before I was poorly. I’m quite an active person. I like being in and out and busy all the time. But it hasn’t been the way that I thought it would be. But that’s how I envisioned it, that I would just be back to normal, back to myself.’ |
Participant 19, experienced | ‘I’m hoping I’m not going to be one of these people, oh what if it comes back? I don’t really want to think about that, I just really want to have a bit of normality back, and for my family as well’. |
Participant 21, experienced | ‘Early 60s, as I am now, I’m thinking maybe you can go back to Spain and put your own business. I know that I don’t want to go back to what I was doing before. Even if I have to, because obviously, like I say, I don’t know the treatment, how it’s going to be from here, from now to the future. And I don’t know exactly when I can go or not go or do or not do, but I’m going to try to do something different.’ |
Physical Activity | |
Participant 17, experienced | ‘[Physiotherapist] wanted to make sure that I was fit enough for surgery so I had to do some from a sitting state to stand up and down for the period of a minute, and they did that twice. And when they discovered the second time I was doing really well they said they didn’t think that I needed the intervention anymore which I probably don’t, I have been quite fit in my life’. |
Participant 20, experienced | ‘[Physiotherapist] was never too busy to talk to me to see what my restrictions were, to see what I could do. He was very able to modify the programme he was thinking of to include some of the things I have issues with, and engaged a lot with what I wanted’. |
Participant 15, experienced | ‘Rather than someone, talk about your feelings, and understanding how you feel if you’re upset… you feel better in yourself just by doing the extra class, or going for that extra walk, or whatever.’ |
Participant 10, naïve | ‘I used to walk more than two hours a day but now I couldn’t even walk… because I have to go back to the toilet because I couldn’t control my bladder because of the fluid in my stomach. And I get tired quickly.’ |
Nutrition | |
Participant 8, naïve | ‘I can’t remember them specifically saying, reduce my alcohol intake, but I just thought my body’s going to be really bombarded with drugs and is going to need to be in the best possible position to heal, so I felt I ought.’ |
Participant 14, experienced | ‘The other thing that worked hand in hand was I had a conversation with the dietitian, she would call me every maybe three weeks or so. We would talk about meals, we would talk about healthy eating, we’d talk about the ratio of vegetables to other things, and we’d just have a proper full discussion. And she gave me a tip when I first spoke with her to keep a food journal, just so that when we spoke we could look at it and see what improvements could be made.’ |
Participant 17, experienced | ‘They invited me to have an interview with a nutritionist, but once again I had to wait for eight weeks. There didn’t seem to be any point quite frankly. Because actually I think my diet’s pretty good, and I’d had this interaction with the surgeon who told me very clearly I needed to put on some weight. So actually I just followed his advice and said to the nutrition lot thank you very much’ |
Participant 12, experienced | ‘For me no. I know loads of people who’d jump at it. But for me no, it wouldn’t, I don’t think that would work for me. I think it would make me think things that I don’t want to think. It makes you more conscious of things.’ |
Participant 14, experienced | ‘ I’m still actually having psychotherapy right now, and I think it’s hugely beneficial, because what it did was it brought it all into context, what I’d been through, what happened pre-surgery, and what happened after surgery. So, although I was supposed to start the psychotherapy before surgery, I personally thought it worked really well for me having it after surgery.’ |
Participant 17, experienced | ‘Maggie’s are absolutely amazing. I just felt so much at home from the minute I got there. They arranged for me to see their psychotherapist. You see once again it was face to face which was wonderful. And he listened to my requirement and my story and he said, I think we can work with you, I’d like to invite you to a series of appointments with me’ |
Participant 21, experienced | ‘Well, there was a space, a Maggie’s centre, where you can actually pop in and talk to someone there. But I was a couple of times. The psychologist wasn’t available at that point because you don’t make appointment. You just go and talk to her. I spoke to someone there, but I don’t know, I thought that I need more than that. I don’t need just a quick chat. At that point, it was hard.’ |
Participant 19, experienced | ‘Sometimes you can talk to people you don’t know very well a little bit better than… your family. It’s just that you don’t want to worry them, or you don’t want their whole life to be consumed by the cancer.’ |
Psychological support | |
Participant 12, naïve | ‘For me no. I can still that it would be very useful for loads of people, I know loads of people who’d jump at it. But for me no, it wouldn’t, I don’t think that would work for me. I think it would make me think things that I don’t want to think. It makes you more conscious of things. Yes, so not for me but I can see that it would be very useful for a lot of people.’ |
Participant 14, experienced | ‘So I think the psychotherapy, depending I guess on the individual, but certainly for me, it just was the thing that rounded it all up and brought it all home to make me this fulfilled person ready to live my best life again.’ |
Participant 15, experienced | ‘I was offered that that I could always go and speak to someone, they could arrange for me to go and speak to someone. But honestly, I have the most supportive family that listen completely that I didn’t feel that I needed that.’ |
Participant 16, experienced | ‘No, I didn’t. I certainly was aware of it, and right from Day 1, I was aware of it, if I’d wanted to. But I didn’t, to be honest, feel the need for it, personally. This is just me, and I didn’t take it up at all.’ |
Participant 17, experienced | ‘I always come away with something new, and it’s either a new attitude, it’s mostly a new attitude. It’s been about problem-solving. It’s been about thinking through things in a way that I haven’t done before. It’s always about considering not just my own point of view but other people’s. I don’t complain a lot, but if I get on to the edge of complaint he will always open my mind as to how it is for the person on the other side and why this might be happening.’ |
‘Life’ preparation | |
Participant 12, experienced | ‘I just thought I needed to sort myself out legally… Getting my will straight, that sort of thing. It’s one of those things that sort of hangs over you and you never quite get round to it but it spurred me on which was probably a good thing, actually. |
Participant 1, naïve | ‘I’ve got my kids at home this week, and also my dog is very poorly, so actually there were other things in my head that were more prominent for me than having the surgery.’ |
Participant 3, naïve | ‘I have written my husband and my two children notes, and I’ve said where they are, in case something happens tomorrow.’ |
Friends and family | |
Participant 16, experienced | ‘Well, I don’t have children. I am married. My husband was brilliant. He was probably in more of a state of shock than I was about it all. But he was and is fully supportive and he’s been 100% behind me, obviously, in it and helping with everything, really, which makes, obviously, a difference. Because if you’re doing this on your own, it could be quite hard.’ |
Participant 14, experienced | ‘He’d [husband] say why don’t you put your gym clothes ready the night before, so in the morning you can just hop into them…And then for diet, because he did all the cooking and the food shopping for us, he also was in the conversation, the first one. Not all of them, just the first one with the dietician, where we talked about foods and food groups, and so on, and so he then knew.’ |
Participant 2, naïve | ‘And the main thing is my family supported lots. They are normal. Nothing has changed in my house. Everyone’s routine life is the same. They never give me any sympathy. They give me strength.’ |
Participant 21, experienced | ‘He loves me a lot, but the diagnosis for him, the impact was worse. So, he mainly just takes care of me physically. The food, the things. But mentally, I think, he needed more. I stopped fighting him for help. Poor thing. But when I was at home, he started to feel better about all these things.’ |
Healthcare professionals | |
Participant 17, experienced | ‘Well that was probably the most useful thing I had because first of all the anaesthetist herself was very approachable, she was very professional. She didn’t hurry me, she gave me the feeling that I’d got all day to talk to her, I can’t think how she did that because she must be terribly busy. And she was very, very down-to-earth.’ |
Participant 20, experienced | ‘I don’t have a good rapport with the gynae nurse practitioners because we don’t have a relationship, they answer questions and that’s probably it. They were very honest that there were these shortages, they didn’t not tell me that this was going to be problematic, but I don’t necessarily know that. The health service is in crisis but we can only do what we can’. |
Faith | |
Participant 20, experienced | ‘I had gained an ability to centre myself and calm myself. I have extremely good control normally as my faith is, and they are all the appropriate skills that you need. So I practised prayed them much more from Asanas to Samadhi and just acceptance and keeping the positive feel of it. And I’m not saying that it was particularly easy, but I have not been crippled by this diagnosis, it’s been a project to work through.’ |
Participant 7, naïve | ‘I do listen to religious music to stay calm, especially when I think I’m getting a little anxious. So, it helps me to relax. And I guess, knowing and then telling myself. I’m only a drop in the ocean… I guess it just makes me feel good to know that’ |
Participant 2, naïve | ‘I’m telling everyone, go to positive and believe in God. If you are strongly believing in God, faith and trust, they’re never going to disappoint you.’ |
In person vs. remote | |
Participant 15, experienced | ‘The time you’ve been to the hospital for chemotherapy all day long, and you go for your blood test, and you go for a scan, another appointment on top, from my point of view, is just too much. So it’s quite nice to be able to still have that reach to speak to somebody. But it’s quite nice to be doing it at home rather than in the hospital environment.’ |
Participant 19, experienced | ‘I think they need to see you as well to see how you’re coping maybe, because we can all put on a front over a phone and say, oh yes I’m fine. I think if they see you face to face they can judge a little bit better maybe.’ |
Written or pre-recorded advice | |
Participant 8, naïve | ‘You have physio, dietician and psychologist or whatever, but maybe like a generic pre-recorded session, with then opportunities for people to do like a virtual drop in to ask any questions after they’ve seen the videos. Or an email address, like the Macmillan nurses have, where it gets checked regularly, and you can respond to any queries that people have.’ |
Participant 21, experienced | ‘So, like I said, having it online is really helpful, especially if it’s live, because if you have to put a pre-recorded video or something, it doesn’t motivate you as much as to know that you’ve got a time to connect to do the class. And there are people there live with you. That helped a lot as well.’ |
Group sessions | |
Participant 14, experienced | ‘For the exercise part, and we are all working to the same goal, i.e. to get as fit as we can and as healthy as we can before surgery… But for me personally I think it would have been helpful just for that, because I wouldn’t have wanted to compare cancers, or stages, because that would send me into a downward spiral.’ |
Participant 12, experienced | ‘No, no I don’t think so, I don’t think I would do that. Because then it gets sort of a therapy session doesn’t it, really. And I think in some ways I’m better off not knowing what happened to another person’ |
Participant 11, naïve | ‘It’s always good to talk to people. Maybe things that the other person is doing that you’re not doing, and its benefitting maybe it’ll benefit you as well. And yes, the other way of networking as well. It’s always good to talk to people who’s been through that as well.’ |