PRO | Quotes |
---|---|
Focus group 1 (n = 5) | |
Pain | “When the tumour was big, it did bother me, I had pain in the upper right abdomen.” |
“I had a lot of pain, but I found it difficult to determine if these symptoms could be explained by my benign liver tumour.” | |
“I have stitches/pain in the right upper abdomen. Even though people say it cannot be due to my benign liver tumour, but it is the only explanation in my opinion.” | |
Insecurity around follow-up moments | “In the time between the check-up and getting the result, it is really on top of my mind.” |
“It’s like the sword of Damocles hanging over my head, recurring every year” | |
Anxiety due to risk of malignant transformation | “They told they found a liver tumour, but it was okay because it was benign. But it didn’t feel okay!” |
“Six months after my operation, I suddenly started to worry: what if it had been malignant? What if it was not fully removed, or what if it recurs?” | |
Sometimes I suddenly get scared, what if it goes wrong, turns malignant and I get ill?” | |
Difficulty losing weight | “I was advised to lose weight, but this was very difficult because of other conditions I had.” |
Fatigue | “What is still bothering me, is that I am still very tired. And there isn’t anything anybody can seem to do about it. There are still many things I want to do.” |
“There are days that I fall asleep while just sitting straight up.” | |
Other abdominal symptoms | “I believe I can feel the benign liver tumour every now and then, when I do specific exercises, or when doing sports or laying down in a different manner.” |
Contraceptive use | “It was complicated that I could not use oral contraceptives.” |
Pregnancy wish | “I know getting pregnant can cause complications. That does scare me.” |
Limited possibilities for exercise | “I use to do kickboxing, but I was told to be careful.” |
“I consciously don’t play contact sports or do horse riding anymore.” | |
Sleep loss/insomnia | “I don’t sleep much, I get out of bed very often during the night.” |
Combination with other diagnoses | “Different specialists said different things, and after a while I didn’t know whose advice to follow any more. I wish the doctors would have seen the whole me, beyond my liver (tumour).” |
Pruritis | “I had an extremely itchy upper body, some evenings I needed to put myself under a cold shower.” |
Feeling lonely | “I felt pretty left alone with it, it was hard to work through on a mental level” |
Focus group 2 (n = 7) | |
Insecurity/anxiety | “The insecurity was the major thing for me. Sometimes I feel pain in the right upper abdomen, and then I get worried the tumour might have come back after all (the operation) I went through.” |
“I still feel worried if the tumour might become malignant.” | |
“I am mostly worried about the future. What if the tumour continues to grow?” | |
“The main reason I feel insecure is because I don’t know which symptoms may be caused by my benign liver tumour. I have symptoms, I don’t know if they are caused by the benign liver tumour, and then I am worried that I might be exaggerating because I have these symptoms in the first place.” | |
Fatigue | “I am tired quite sometimes, but whether that’s related to the benign liver tumour, I don’t know. I do also have a rather busy life.” |
“I was very tired. It was a different kind of tiredness than being mentally exhausted.” | |
Pain | “I sometimes have a feeling of pressure when I am running, or when I sit in the car. I will just have to deal with that.” |
“I still cannot lay on the right side of my body, it feels as if something is tearing inside of me if I do.” | |
“I always had stitches when exercising, but afterwards, I realized this was only on the right side of my body.” | |
Limitations in daily life | “I used to run twice a week, but after a while I couldn’t even walk straight because of the pain.” |
Sleeping | “I don’t sleep well. This also started when I got the diagnosis.” |
“I had periods in which I couldn’t lie down, so I couldn’t sleep.” | |
Reaction to food | “I have very severe reactions to alcohol, I didn’t use to have that. The same goes for using paracetamol.” |
“When I have eaten anything different than usual, I feel sick and bloated.” | |
Limitations in social life | “I really need to divide my energy. After my operation, I couldn’t work for a whole day, or even sit up for an hour. I still have that, especially after dinner.” |
Shortness of breath | “After my operation, I had persisting shortness of breath.” |
Weight gain | “When I wake up, I am already tired. I used to do sports 35 h a week, but now I am tired after an hour.” |
Condition | “I was very tired, I had physical difficulties doing certain types of exercise.” |
Skin | “My skin is much more sensitive than it used to be.” |
Vomiting | “I feel sick and vomit very easily.” |