The work of living with a rare cancer: multiple myeloma.

AIM To report findings from a qualitative study of the experiences of long-term survivors of multiple myeloma. BACKGROUND Multiple Myeloma is a malignant disease of the bone marrow. Until recently, it was rapidly fatal. Although it remains incurable, people diagnosed with it are living longer on average, largely due to new treatments, some of which have onerous side effects. DESIGN Prospective descriptive study. METHOD A series of 47 in-depth interviews were conducted at 6-12 month intervals over 18 months in 2008-2010 with 10 long-term survivors of myeloma and their primary support person. Interviews were analysed using the constant comparative method (Grounded Theory). FINDINGS To adapt to the effects of both the disease and ongoing medical treatments, participants undertook extensive 'illness work'. Most of this work fell into two broad categories. Risk work aimed to mitigate risks to the well-being of both the person with myeloma and his/her carer. Emotion work aimed to manage the feelings of self and others in a protracted cycle of remission and relapse. CONCLUSION The experience of myeloma is increasingly characterized by issues associated with chronic disease and 'survivorship'. It is important for nurses working with people with myeloma to understand the overwhelming nature of illness work in this context. Nurses can put in place supportive measures to address the two main 'drivers' of this work: constant risk to well-being of survivors (including carers) and the recurrent need to manage emotions in social interactions.