| Psychological distress |
(11) “It was very unpleasant news when I got the diagnosis. When I left, I felt bad at that moment. I felt very badly. Believe me when I say that I didn’t care if I got hit by a car in that moment. I don’t care, I told myself, that way I would die in one go.” |
| (8) “I cried a lot, a lot, a lot. I would say, ‘Doctor, it’s just that I feel very bad.’ I thought about suicide. I said I’ll just grab a gun and kill myself and I’ll be done. Because it was so much pain and I didn’t know how the process would go with the medicines, everything that was going to happen. I didn’t know anything about that. I said, ‘Cancer, well I'm going to die either way. I won’t be cured of this disease. Why not just kill myself now and get it all over with, no?” |
| (14) “I was bathing and I put soap in my hair. When I went to remove the soap, all the hair came off on my face and I couldn’t breathe. I got really nervous, yes, a phobia of not being able to breathe and from seeing my hair fall out. So that caused me a lot of havoc.. I had to call my husband to help me out of the bathroom because I was drowning.. it was a trauma.” |
| (17) [Describe the changes you’ve observed since diagnosis?] “I still cannot overcome this. *crying* Three years have passed since I finished treatment and—no. I still think this will never be over.” |
| (17) “I still feel sorry for myself and I can’t get over this. [Is there something that could help you?] Well, no. I don’t think so. [Does time help?] Well, no. No. When you get home after surgery, you say, ‘It has to happen, doesn’t it? It has to happen. Days will pass and I'm going to be better.’ And right now, for example, five years have passed, waiting for this to change. I tear up easily now, I cry all the time.” |
| Anxiety at the transition to survivorship |
(6) [Ways to improve your care?] “. . . During checkups, you always have this nagging feeling, right? Right now, I come once a year and I feel that is too long. I’d rather come every month and be safe. A lot can happen in a year.” |
| (21) [Ways to improve your care?] “Let me have an MRI every year to see what cancer now affects my body. Because with a mammogram of only the breast and nothing else, I won’t know if I have cancer somewhere else. Also, give us a copy of every exam done here so we have that information ourselves.” |
| (21) “I come from very far away and then they do nothing else but review the tests we were sent to do and a physical exam and that’s it. It would make us feel more confident if they did a little more.” |
| (10) “I felt a little anxious, anguished. Because I’m thinking, ‘They’re not treating me like they used to treat me. The disease is going to come back and I won’t know.’ Why? Because I'm not going to the doctor every eight days. I'm not going to get checked on. Yes, it gave me anguish and I felt so worried. Because they gave me appointments every month, then two months, then three months, four, five and now six. So now I go every six months and I still feel distressed by the same thing that I was seen more often and not anymore. The anguish is for everything. Even if we say, ‘We are healed, we are cured of the disease,’ and, ‘I am no longer afraid of that,’ there is also that possibility, that anguish, biting at us that the disease can come back and can get you, that it isn’t going to end.” |
| (9) “There should be more help for those of us who, since we are only seen once each year, often we don’t know what is available, what new programs there are for us here at the hospital.” |
| Distress entering the hospital |
(8) “It was so bad that when I entered the hospital, it was already starting, *retching impression.* I hadn’t begun my treatment and I was *retching impression.* It was psychological.” |
| (11) [Things that would’ve made life easier?] “It would’ve been easier if I didn’t have to be in this place. The truth is, this is an unpleasant place. This place breaks my soul, because I already went through it. I can’t see patients like this because it breaks my soul to see them because I already lived it. I feel horrible for their families.” |
| (14) “One comes and goes from here with fear because simply arriving, the smell of the chemotherapies . . . it’s almost like cats. I would get to the door, but I didn’t want to go in any further. The door was open but, ‘not any further, not any further.’” |
| Explicit requests for psychological care |
(4) [Ask for two things from your medical team] “After ten years, after eight, ask the patient how she feels, how she is doing. Above all they should make it like a law that they send in the psychologist with the other consults: chemo, radiation, and a psychologist. Make it the default. I think that is very important because I think my disease really didn’t affect me. It really was a small tumor and they got it out and that’s it! But, the psychological part… The physical effects, well, yes, the chemo gives you a disgusting feeling and you feel bad and all that. But the fear, your family, your children, the morale… that hurts terribly. Yes, you should see it as a special department that exists so women are cared for psychologically and have a better quality of life. We are being cured, physically, but what becomes of our minds? How are we psychologically?” |
| (4) “I’ve been thinking a lot about going to the psychologist. I don’t have the opportunity right now because of work and everything. But I have felt very sad. I feel like going away, living elsewhere. I’ve really been feeling that I want to leave.” |
| (4) [Things that would’ve made life easier?] “You are naive when you first get cancer. If I had known then what I know now, I wouldn’t have worried so much. If I had been in a group, like the ‘Challenges’ group, or if there had been something like this interview where they asked me how it was going, or if I had gone to a psycho-oncologist it would have made it easier.” |
| Psychological care as helpful |
(4) “The psychologist said a few words that made things very clear. I went a few times. I asked him, ‘After cancer, what will my life be like?’ I didn’t know. I was still being treated. I asked if I was going to die and he said, ‘Not today.’ ‘More people die from accidents than cancer.’ And I said, ‘How can I avoid this? It’s killing me, the idea that I have cancer.’ And he tells me, ‘One has to learn to live with this. Learn that your whole life you’ll be coming to the hospital. All your life you will see sick people. It’s a way of life.’ So that helped me a lot to understand what was happening to me. I went to five sessions and I came to understand: why am I distressed if I have to come here the rest of my life anyway, right? You have to accept it.” |
| (8) “I cried and I told my doctor, ‘I feel very bad, I feel very bad. I feel that I will not be able to go on’ …And he sent me to the psychologist and the psychologist told me, ‘No. This is a disease like any other and you have to make it. But if you are sad and you cry and you don’t eat and you are suffering, the medicine will not work. You have depression and 50% of this is hope and 50% is the medication. So right now cry all you want to cry and then you’re not going to cry anymore.’ And so I cried and cried and cried. But then I said, ‘No.’ One day, just like that, I said, ‘That was enough. I have to get better.’” |
