Hopelessness and no places to turn for help
cancer, depressions, fatigue, ill
CANCER, SAID
So far, our findings reveal the hopelessness of adolescents who are neither being sick nor well after battling cancer therapy. Their sense of hopelessness, it seems, is even greater when there are few places to turn for help. All the participants expressed frustration at having nowhere to turn for follow‐up care, or having to re‐tell their stories every time they see a new health‐care professional or social worker. Three of them were more articulate than the others, putting into words the frustration that all participants had to some degree.For Ingrid, the trouble started when she was discharged from the hospital. She struggled greatly with both the side effects of cancer therapy and not finding a doctor to provide her with the follow‐up care she thought she needed. Secondly, friends and family expected everything to be back to normal when her cancer treatment ended. However, Ingrid suffered from fatigue and depressions and felt left to herself when her parents said she should be happy and just pull herself together. Ingrid was also without a job and as she tried to explain her situation to her social workers, she felt they, too, were unable to understand the limitations of her work capacity: “Nobody understood what I felt. It feels horrible when neither nurses, doctors, nor social care takers seem to understand.”Mark claimed that a greater competence in understanding each patient's unique challenges is required: “Many of us get sick while we still are kids in the children's ward but end up being transferred to the cancer ward for adults. It is very important to make that transition smooth. This is not just about the hospital as a system: every individual medical professional must keep in mind what that means to the patient.”Ingrid said, “I really wish someone had helped me or at least given me some advice to make the transition from sick to well a little better – helped me return to a normal life. I just felt incredibly empty after the treatment”.Mark expressed a similar concern: “Being an adolescent in a situation like that, is completely different from being an adult. We are just starting our lives! I think the medical professionals need to understand that we are not like other adolescents. The doctors should think of what we, the young patients, are concerned with and adjust the way they think and talk to us!”Caroline sometimes felt she was not taken seriously by the medical professionals treating her: “I was constantly compared to the older patients. Therefore, I felt they didn't take my concerns seriously.”The participants claimed they were not offered follow‐up cancer aftercare that adequately addressed their specific needs. This, it seems, contributed to a greater sense of hopelessness when battling the side effects of cancer and feeling neither ill nor well. The participants also seemed to hold the medical professionals responsible on a more personal and individual level rather than seeing this is a problem related to how medical care is structured and organized.