In a unique position: Transitions from sickness to wellness, and from childhood to adulthood
ovarian cancer, tumor, illness, cancer, leukemia
OVARIAN CANCER, TUMOR, LUNG FIBROSIS, CANCER, LEUKEMIA, BRAIN TUMOR, SHOCKING, SAID, IMPOTENT, CHRONIC FATIGUE SYNDROME (CFS)
The conflict between sickness and wellness coincides with the AYA cancer survivors' young age at the time of diagnosis, which puts them in a unique position. As Anita explained, “It is a special thing getting sick as a teenager. I had not had the chance yet to develop a life as an adult.”June (27), who had been diagnosed with ovarian cancer at the age of 16, was struggling with chronic fatigue syndrome (CFS) and lung fibrosis: “I went back to school after I got sick. That became very difficult. I was so terribly tired. I did not manage to take part in the class. Besides, I had completely different experiences and a completely different perspective on life than my class mates. My class mates were not any nice to me at all. Because I had been away from school so much, I was no longer welcome in the group. I have to live life completely differently from how I did before.”Margret described it as a shocking transition when her cancer therapy was over: “I really had nothing to go back to. I mean I had a sick leave from my studies, but no job. All the friends I had had something to do. I just had to sit there with nothing. You know, cancer is not just like an interruption or a break from your life the time you are in therapy and then when it's over you can just pick up where you left off!”Ingrid (34), who had twice survived a brain tumor, felt as if she had lost important years of her life to cancer. “Ten years really, yes definitely 10 important years from the time I was 20 till I was 30, have been stolen from me, sort of. I feel I lag a bit behind other people at my age.”Caroline (20) had to give up law school when she was diagnosed with leukemia. “Getting cancer this young is a very special thing. You are neither a child nor an adult, and yet in a difficult situation like that (having cancer) you are supposed to figure out who you are!”In these examples, the participants describe a sense of being cut off from the lives they used to live. They are standing on the threshold of adult life, struggling to navigate a new life after cancer while feeling they have lost important years of their adolescence to their illness. Their experiences are so different from those of their peers that they sense a kind of alienation. Restitution of normality after undergoing cancer therapy is that ideal; however, all the participants seemed to find it difficult, apart from one, Mark, making him an exception to the rule.Mark (30) was diagnosed with a CNS tumor. This caused him to end up paralyzed, impotent, and infertile and with two ostomy bags. “Despite all that, I have a life pretty much like the one I had before I got cancer. I still get to do the things I love. I have been very lucky to have a close network of friends and family. I have also been very fortunate to have an employer who said, the minute he found out about my cancer, that my job was the last thing to be worried about.” Mark's story indicates the importance of a well‐established network of friends, family and colleagues for being able to pick up where one left and move on—in other words, having an old life to fall back upon.