Table 4.
Patient quotes.
| Comment number | Age in years (sex) |
Diagnosis | Patient comment |
|---|---|---|---|
| Eating and drinking habits | |||
| 1(a) | 37 (female) | CML | ‘I have started this organic food, more healthy. I think people hate me all of sudden, I just moan about everything, sugar and things like that.’ |
| 1(b) | 58 (male) | FL | ‘So, in my opinion you have to try something else before it comes back, I have to try alternatives, supplements, new theories, eat more healthy, sugar is killer, more green and any kind of thing to not to encourage cancer in your body.’ |
| 1(c) | 29 (male) | NHL | ‘All the side effects were just disgusting, if you’re feeling sick or if you have a headache, you are not susceptible to have food’ |
| 1(d) | 40 (male) | MM | ‘Over the 5 months I gained weight because of the steroids, they increase your appetite, I found myself sitting at home and eating. Also, I could not do exercise.’ |
| 1(e) | 67 (male) | MM | ‘I am really trying to find an answer to that myself. It might have been because of stress, I can’t honestly put my finger on why I just thought of drinking more.’ |
| Social life and participatory function | |||
| 2(a) | 49 (male) | ALL | ‘No social life at all because my neutrophils are low, I am neutropenic and I cannot go outside. If I go, I wear the mask and if I go with the mask then people look at me and think I am stupid, they think I have some virus, so they avoid me.’ |
| 2(b) | 51 (female) | AML | ‘I didn’t have a social life really because I was so ill, like I said even to wash and to have a bath was difficult, I kind of lost all my muscle strength.’ |
| 2(c) | 44 (female) | HL | ‘If I was going somewhere where there was crowd, I used to have a panic attack and I couldn’t breathe properly. I just was too scared to get myself into that state because it was going to be crowded and it was family, not strangers.’ |
| Physical well-being and independence | |||
| 3(a) | 79 (female) | MM | ‘I could not walk at all, so they put a special toilet for me, which was the best thing and then I had a physiotherapist coming. But of course if you lay on your bed for more than 2 months then everything goes, your muscles don’t work properly.’ |
| 3(b) | 47 (female) | ALL | ‘I think my partner probably felt different about me. Because I have always been so independent and did everything on my own, we never talked about this but I think he felt I was very fragile and I can’t handle it.’ |
| 3(c) | 50 (female) | ALL | ‘I have weakness, extreme tiredness, loss of appetite, just not going out to do things, just going from able body to disabled within few weeks, not able to go upstairs at home and feeling unwell generally.’ |
| Psychological well-being and attitude towards treatment | |||
| 4(a) | 52 (female) | MM | ‘At one stage I was really suicidal about the condition. When you are in that position, especially during the first week, I was really feeling unsafe. It was a very tough time. I’m still very traumatised by the whole thing during the diagnosis.’ |
| Daily activities/chores and home management | |||
| 5(a) | 53 (female) | ALL | ‘I would say each day is a real effort to get through and to be at home, cook and do stuff yourself is extremely difficult. So, everything is an effort, to do it you really have to push yourself.’ |
| 5(b) | 56 (female) | INHL | ‘Well, generally my sister comes over which is a pain because I can’t do anything. She does everything for me. The nurses here care for me, they come in to change my things.’ |
| 5(c) | 79 (female) | MM | ‘I have not got any energy to do anything. I stopped, I use to go for shopping to Tesco because I could hold on to trolley, but I cannot do anything now’. |
| Sexual life | |||
| 6(a) | 37 (female) | CML | ‘How would I explain to someone that I don’t really feel like having sex because I have been compromised and I don’t feel confident, I have no idea how I can say I can’t have kids.’ |
| Work life, study and ability to manage finances | |||
| 7(a) | 63 (male) | AML | ‘I used to be a production manager and obviously being off for 12 months or even less, it wasn’t an option to try and continue. So, someone else has got my job now. So, I’m no longer a production manager. They give me another title, so I’m still employed, but I have never actually taken that role until now, it is an office space job.’ |
| 7(b) | 31 (male) | ALL | ‘I ended up in the hospital, I had my business, my wife is not working, I was the only source of income, so money is not coming in, everything started to crumble, and everything started to go around suddenly.’ |
| 7(c) | 36 (female) | CML | ‘I ended up in debt. At one point when I was going through treatment, I was haunted by banks but that was fine. Obviously coming from a decent-paying job to relying on state hand out was really tough. I also had to wait for the handouts to come.’ |
| 7(d) | 38 (male) | ALL | ‘The condition has affected me big time. When I will leave the hospital now what I am going to do, I cannot go to work straight away, we supposed to be moving, if we move then we do need funding to buy stuff and putting things at place. So, I don’t know what I am going to do, I cannot go straight to work. There is no one that would say that now you are in the hospital here is the funding, you know what I mean, could say that we will pay for the first 6 months but there is nothing, I am sick, I am here but I still have to make sure that everything is alright at the shop, arrange everything, one of my fridges is not working so I have been googling to try and find someone who can fix it or replace it.’ |
| 7(e) | 24 (female) | ALL | ‘I had to stop looking after the children when I was in the hospital, so he did not have any of his money coming in, we could not pay any rent or bills but I had then social insurance people and she sorted out things for us. Now it is affecting me financially because now I cannot go back to work, my maternity leave is finished and I have no pay at all at the moment and with things like when I am feeling ill or when I have bone marrow then my partner has to come home and then we are not getting any money.’ |
ALL, acute lymphoid leukaemia; AML, acute myeloid leukaemia; CLL, chronic lymphoid leukaemia; CML, chronic myeloid leukaemia; FL, follicular lymphoma; INHL, indolent non-Hodgkin lymphoma; MDS, myelodysplastic syndrome; MM, multiple myeloma; MPN, myeloproliferative neoplasm; NHL, non-Hodgkin lymphoma.