Neither ill, nor well: A remission society
hopelessness, shock, cancer, tiredness, ill, osteoporosis, Cancer
SHOCK, CANCER, BRAIN TUMORS, REMISSION, SAID, OSTEOPOROSIS, CANCER
The experience of being neither ill, nor effectively well was explicitly described by all of the participants: “My life is split in two. I live two different lives, and it takes a lot of hard work to separate the twoMargret, a 30‐year‐old anthropologist, got sick while at the university: “Once you have finished therapy you think 'Hurray, I am healthy! '. But in reality, you are young and cured, but still you have a body that has been beaten up badly for months and no longer works as it should.”Another woman, a 22‐year‐old nursing student named Sophie, described the frustrations of facing side effects after cancer therapy while the people around her expected everything to be back to normal very well: “People expect you to be all good when you finish cancer therapy. But what actually happens is that one thing after another shows up, and maybe you will never be any better. I ended up with osteoporosis and a prosthetic hip, and then there is this extreme tiredness and I couldn't even go to school”. She added: “You hardly hear about side effects. You're not prepared. It comes like a shock. You are treated to be cured, but you kind of don't get well. And you certainly cannot start living just like your friends do when you are out of it.”To some, remission from cancer is even more devastating than the illness itself: “Cancer therapy is like entering a machine only to get out of it with a weaker body and fewer options in life,” said Jack, a 21‐year‐old man, who had survived multiple brain tumors at the age of ten and during his early teens. He never managed to finish school or get a higher education. He was still struggling with finding a job and making friends.As survivors of cancer, all the participants expressed frustrations related to the many severe side effects they suffered after cancer therapy. They felt unprepared for the situation they found themselves in and further expressed a sense of hopelessness at not being effectively well despite being cured from cancer.