BACKGROUND: Patients with peritoneal carcinomatosis treated with cytoreductive surgery and hyperthermic intraperitoneal chemotherapy have a long recovery process.

AIM: To describe patients' experiences of their everyday lives after cytoreductive surgery and hyperthermic intraperitoneal chemotherapy.

METHOD: A follow-up study with a qualitative, descriptive design. Data were collected by individual, in-depth telephone interviews with 16 patients who had been treated for peritoneal carcinomatosis 14 months earlier at a university hospital in Sweden. The interviews were performed between May and June 2013 and analysed using systematic text condensation.

RESULTS: Five themes were identified: (i) finding one's new self and relating to the new situation; (ii) the disease making its presence felt through bodily complications or mental fatigue; (iii) worrying about the return of the disease and passing it on to one's children; (iv) experiencing difficulties contacting various care facilities, not having a clear plan for ongoing rehabilitation; and (v) the need for online support through the Internet and counselling for both patients and their family members.

CONCLUSIONS: Despite bodily complications, mental fatigue and worries about the return of the disease, the patient's everyday life was focused on finding his/her new self and adapting to the new circumstances. Difficulties in contacting care facilities and the lack of an ongoing medical and nursing rehabilitation plan called for a need for network support for patients and their families.

CLINICAL RELEVANCE: After advanced surgery, patients require a continuous medical and nursing rehabilitation plan, and a platform of support such as meetings via social media and Internet which would connect former patients and their families with future patients and their family members. A contact nurse with specific expertise should design an individual rehabilitation plan and continuously identify the individual needs for long-term support.