Cured but not well — haematological cancer survivors’ experiences of chemotherapy-induced peripheral neuropathy in everyday life: a phenomenological-hermeneutic study

To explore haematological cancer survivors’ experience of chemotherapy-induced peripheral neuropathy (CIPN) in everyday life.

Data were generated by means of individual semi-structured interviews with 12 haematological cancer survivors who experience CIPN after completion of treatment. Data were analysed using thematic analysis.

The thematic analysis yielded an in-depth description of the experience of CIPN symptoms and the influence of the symptoms on everyday life as being unwell despite being cured. Four main themes emerged from the analysis: (1) A diffuse and contradictory sensation which is impossible to ignore in everyday life, (2) Not feeling well, even though I’m cured, (3) Living with CIPN, despite limitations, and (4) An invisible companion, that everybody knows about.

The findings shows that survival from haematological cancer does not always equal well-being, as experiencing CIPN has extensive consequences on everyday life. CIPN affects haematological cancer survivors’ transition to an ordinary everyday life, with disturbances in the physical function, daily activities, social relationships, psychological aspects, and work ability. As a diffuse and contradictory symptom, CIPN appears as an invisible companion that leads to a feeling of being alone.

A better and deeper understanding of haematological cancer survivors’ experience of CIPN in everyday life may improve communication, guidance, and treatment of CIPN symptoms. The results suggest a need for interventions and strategies to accommodate the gap in practice and to address the impact of CIPN in everyday life.