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Table 2 Specific comments from patients’ interviews

From: Behavioural profile and human adaptation of survivors after radical cystectomy and ileal conduit

3 year profile 5 year profile 7 year profile +7 year profile
I broke up my friendships […] I don’t go out to dinner anymore, I don’t feel confident about myself. If something happens, I have to go home if I don’t find the right condition to dress me up (man, 67 years old, four years after surgery, retired because he quit his job) I feel really fine, I go to gym, to walk […] my quality of life is very good […] Now I’m healed (male, 75 years old, 5 years after surgery, retired) At first I had erection problems, but after it was all ok […] nothing has changed with my friends, my relationships are even better […] (male, 70 years old, 7 years after surgery, retired) If I think back to the ostomy I feel good. Today I have other problems. The old age […] (male, 89 years old, 30 years after surgery, retired)
I’m terrified of this thing [that stoma disconnects] I don’t feel pain, but I have this fear, it is not easy to live in such way […] I feel sluggish and tired and it takes me half the day to make the bed […] is a great trauma (Woman, 81 years old, 3 years after surgery, retired) At the time I don’t have anxiety about my condition, there are some precautions that should be observed […] I must be careful that there are no leaks, but it happens rarely in my case and I can live almost normally (male, 80 years old, 6 years after surgery, retired) I didn’t expected, that they told me, that I couldn’t have sex […] there were some concerns and even now sometimes I complain of plate disconnection, but it’s a normal thing … It’s just like I have not undergone this operation, I eat, drink and have fun (male, 71 years old, 8 years after surgery) I feel better now, I was better after the operation, my problem today is the stroke, but yes, before I was better (female, 79 years old, 16 years after surgery, retired)
Earlier I used to go to the gym, after the operation I didn’t training anymore. I feel more tired […] now I have the hobby of embroidery […] The relationship with my wife has become deeper and we try to live intensely our last few years, we travel some more, we try to live as best as we can […] perhaps sex life was important and I was sorry for my wife … (male, 75 years, 5 years after surgery, retired) Now, sexual relationships, much less than before… They told me, but it was a bit tragic […] (male, 65 years old, 8 years after surgery) [My health today is] appropriate to my age. I judge it well. I do not have a disease today … I just want to be able to get up by myself, to walk without staggering … well, this makes me angry … (Woman, 94 years, 21 years after surgery, retired)
Earlier I was on journey oft, now no more […] I miss it, I liked this escapism, it gave me a boost… (woman, 88 years old, 3 years after surgery, retired)    
I don’t have more friends, no more sex life, I feel destroyed, physically, emotionally, once I was master of myself, now I depend on my wife … The surgery carried away all that I had (male, 81 years old, 3 years after surgery, retired)   I’ve never had problems with the plate, today my biggest problem is the hernia, probably some internal stitch broke […] apart from that I’m fine, I tell the truth (male, 78 years, 8 years after surgery, retired) [My quality of life today is] good because before [the operation] was hard to do anything. The way of life has not changed, because the job did not give limitations on me, I have travelled and I hope to continue, I have contacts with people and I’m part of a voluntary association … I think it’s a good way of life (woman, 72 years, 10 years after surgery, retired)
   I clean, she (his wife) puts the plate when I’m lying down, and centres it good (male, 71 years old, 8 years after surgery)  
   (There is) a problem of adherences. Then they “attached” two canulas to ureters and they should be changed every two months, with monthly antibiotic treatment. The quality of life is poor. We are always in the hospital (Woman, 76 years, 7 years after surgery)