Aim To explore patients’ lived experience of being diagnosed with myeloma.

Method A hermeneutic phenomenological approach was adopted to analyse data from interviews with 11 patients diagnosed with myeloma.

Findings Participants described how they lived with what they described as an ‘unknown cancer’, and talked about their feelings of loss. They reported having an altered body image as a result of alopecia and fatigue. Fear of disease recurrence was expressed and the significance of providing support was emphasised. Participants felt lucky to be alive and lucky that myeloma is treatable.

Conclusion The study findings illustrate the importance of addressing patients’ emotional and psychological needs, and the significance of providing support for those with myeloma.