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Table 5 Personal descriptions of unbearable suffering by patients with high scores (score 4 or 5) on the SOS-V in the ultimate interview

From: Symptoms, unbearability and the nature of suffering in terminal cancer patients dying at home: a prospective primary care study

General discomfort: You just feel miserable, it feels like a sort of flue, you don’t fancy doing anything, you only want to lie in bed
Tired: I hardly can do anything, it is nearly impossible to explain it in words, I never imagined a person could be so tired
Weakness: My right leg is to weakened, it is not safe to stand and so for weeks I lie in my bed all the time and only come out for the latrine chair
Not sleeping well: There is the noise at night on the streets, ambulances passing by, and this screaming neighbor woman, who keeps the whole neighborhood awake
Pain: I have pain all day, it occupies my mind, there is little distraction
Loss of appetite: I can hardly any more enjoy the taste of food, I long for the flavor of a fine stew
Thirst: My mouth is dry, I need to drink, but this makes me nauseous
Smelling unpleasant: I hate this urine smell
Changed appearance: I used to be vain, now I have become so thin, I find it ugly looking at my neck
Impaired mental clarity: I think about something, and then it’s gone, I find that stupid, for instance when I am one my way to fetch something
Concentration loss: My mind loses its way, I find this unpleasant
Memory loss: I used to remember all by mind, because I am illiterate
Feel tense: I try to control it, for the children
Feel depressed: This depressed mood in itself is unpleasant; at the same time it grows, because my daughter is doing less well
Feel anxious: I feel afraid for what will come and worry about how things will go on for my wife
Shortness of breath: Even with only slight activity I have a sort of hyperventilation, which makes me anxious
Coughing: When in public, than this phlegm comes out in my handkerchief, it’s very annoying
Obstruction to swallow food: I need to feed myself to prevent becoming even more weakened, but the passage of food is deranged
Obstruction to swallow fluid: I swallow, but it doesn’t pass, it makes me retch
Nausea I am nauseous continuously, I feel completely fed up with it
Vomiting: When I sit at the table, it suddenly comes up and I need to run for the bathroom
Constipation: It hurts and is strenuous
Diarrhea: You are dining out in a hotel and then you continuously need to go to the toilet
Intestinal cramps: These cramps are painful, it is very unpleasant
Incontinence of urine: X (no high scores in ultimate interview)
Incontinence of feces: It is filthy
Hiccups: It comes sudden and unexpected, it makes me feel uncivilized and ashamed
Pressure ulcers: It is annoying
Itch: You keep on scratching
Skin metastasis: In my neck, after radiotherapy it turned yellow, with an unpleasant look, it smells
Paralyzed limbs: I can’t do anything, my left leg is paralyzed and my arm is forceless
Impaired coordination: These unpredictable cramps and shaking of an arm or a leg, I cannot stop it
Incomprehensible speech: I cannot communicate by telephone, people don’t understand what I am saying
Impaired comprehension of speech: It makes me feel stupid
Dizziness: Sometimes it is frightening, one time it happened when my alarm-button was out of reach and it took a whole long time before anybody entered and took notice
Impaired sight: It annoys me so much, it is caused by the medication
Impaired hearing: If some people talk at the same time I cannot differentiate what is being said
Impaired working capacity: I am already counted out in society
Impaired in routine daily activities: I am not the crying type, but this week I suddenly started crying
Impaired leisure activities: I used to go out, make bus trips, I miss it, but absolutely can’t do it anymore. And I can’t any more receive people at my home, I am to exhausted
Need help with housekeeping: Being young and not capable to function independently, it feels so unnatural
Need help with self-care: I don’t want these young maidens of the home care service, it makes me feel ashamed
Pedridden: More and more you are drawn to that bed, it makes you realize you are deteriorating
Restricted sexual functioning: Widower: I feel rejected by my present partner, there is no intimacy, it is so cold
Not satisfied with own self: I just left my wife, she had done nothing wrong, life than takes a course, leaving impossible to restore the situation
Lived a life with little purpose: With my first wife everything was fine, the last years I miss love and tenderness
Experienced little success in life: I would have liked to be at a somewhat higher level in society, for instance I would have liked to study, I would do it differently if I could do it again
Little happiness with family/close ones: I would have preferred things to be different, I haven’t seen my children for 18 years
Trouble accepting situation: I can no longer play Chopin, or make a drawing
Negative thoughts or worrying: I would have liked to do things differently, at night it appears in my dreams
Feelings of guilt: I feel guilt I wanted to divorce from my wife the other year, she is the one who makes I am still living now, she does everything for me
Feel worthless: There is no more appreciation, people talk about you and not with you
Feel lonely: One has cancer, it is not contagious, but people pass by less frequently
Feel hopeless: This is not what I want
No longer feel the same person: Is this the same body? Yet I have to manage with it, which causes me trouble
Feel tired of life: I prefer it to be over as soon as possible, I used to be very active and independent and now I am totally passive and dependant
Feel dependant of others: Ones individuality is lost, one has no more privacy
Feeling loss of control of life: Tears in the eyes, gives no answer
Feeling a nuisance to others: In relation to being so dependant I now easily tend to think “Oh, just leave it”
Feel unimportant to others: My daughter, she is very sick and I can’t do anything for her
Impossible to do important things: I used to daily visit my wife in a nursing-home, I can’t do it any longer
Not supported sufficiently by close ones: The physical support is O.K., but there is emotional shortage
Lonely (important people absent): I have one son, he does not visit me
Feelings of shame: I have these outburst directed at my own person, which I find alarming, than this tic of my jaw appears and I wonder whether I can appear this way in church
Relatives consider your suffering severe: It makes it difficult to start a conversation
Unsatisfactory contact with close ones: They don’t keep stand up to their promises, for instance my daughter promises to visit me next week, I look forward to see her and then she shows up 1,5 years later
Insufficient availability of care: I find the home care miserable
Fear of future suffering: I feel short of breath, I am afraid to suffocate
Fear losing strength to bear the suffering: To die, would it be painful?
Personal additions of missing aspects: The hospice refused me last week, they considered me too good and advised a nursing home