Women living with ovarian cancer described changes in day to day living, major challenges, and sources of support.

Main findings (1) Effect of cancer on day to day living.Cancer profoundly altered women’s daily lives, resulting in the loss of usual activities, inability to work, and financial concerns arising because of uncertainty about future health needs and employment. Women struggled to integrate changes and experienced emotional distress as they realised that life was changed forever. The diagnosis of ovarian cancer had an impact on the family. Women described changing roles and fears for husbands. The marital relationship became strained as husbands adopted new roles and responsibilities to support their wives and maintain the household. Unspoken fears affected communication, and women worried about the effects of added stress on their husbands’ health. Altered sexuality occurred because of treatment related physical changes, which created discomfort that compromised intimate relations. The purpose of sexual relations was altered, given changing prospects for future childbearing. Women expressed worries about children, had difficulties talking about cancer with them, and feared the increased risk of ovarian cancer in female children. Those with young children were particularly fearful for the future, whereas those with adult children found their care and support to be invaluable. (2) Major challenges. Living with uncertainty was a challenge, and dismal survival statistics were a constant reminder of the uncertainty of the future. Women felt a lack of control over events in their lives, which led to a profound sense of sadness and fear that was difficult to share with others. They were concerned about becoming dependent on others and had a fear of the unknown, as they were acutely aware of the possibility of death. A second challenge was the stigma of cancer.Women sensed the discomfort of others and felt that people avoided them because they did not know how to be with a person with cancer. A third challenge was facing death. The late stage of disease at diagnosis meant that most women were aware of the potential for death when they were diagnosed. Thoughts of leaving young children and not being with them as they grew up were particularly difficult. (3) Sources of support. Women described support from various sources. Extended family members provided emotional and practical support. Some women found that friends in the community, personal relationships, and the church community were especially helpful during the treatment phase.