Three themes were identified in the interpretative analysis: the influence of the cancer diagnosis on awareness and motivation, life circumstances affecting living habits and activities bringing mental strength. These themes represent the essence of the participants’ lived lifeworld according to their living habits during cancer prior to surgery.
Theme 1: The influence of the cancer diagnosis on awareness and motivation
The participants expressed their thoughts and feelings in the period shortly after cancer diagnosis. Existential feelings such as “chaos” and “anxiety” appeared and made them aware of their rapidly changing life situation. These feelings were experienced as a normal reaction. The participants attempted to be in the present, focusing on living. There was a process of accepting the cancer diagnosis and becoming able to live with cancer and its treatments for a relatively long period of life.
“This anxiety that you had in the beginning there….there was a way to realize where you are.” – Thomas
This awareness of a life-threatening cancer awakened feelings of uncertainty. There was uncertainty due to lack of knowledge about the cancer and how it would affect life, and patients thought about how they could maintain an ordinary life. This awareness also brought forth uncertainty regarding the future and negative information about the prognosis. The participants reflected on being forced to live with uncertainty for the rest of their lives.
”You live, so to speak, in a bubble of uncertainty … where is this taking me?”
”This is like….no one has really sat down with me and explained to me … what I could do to make it … become good for me.” – Sarah
Some participants expressed the sentiment, “Finally!” when diagnosed with cancer. The uncertainty and the feeling that something was wrong were verified. The body and mind signalled it with various symptoms. When the cancer was confirmed, the patients’ confidence grew, and they felt convinced that they would manage the disease. Living day by day and focusing on taking care of themselves contributed to a better outcome,
”It´s not like handing in the car for service… you need to contribute by yourself.… I think that’s really important” – Marianne
Participants were mentally preparing for major surgery and reflecting upon this issue with someone outside their nearest social network. They were aware of the major surgical procedure and that would place heavy individual demands on them. Issues regarding mental and physical support and aid and what to eat and drink were raised. The participants were aware of the effects of these factors on their lives and wanted to be prepared and motivated to oversee their recovery and living habits.
”if the surgery and everything goes well there won´t be a change in life, the difference is that you might have a stoma” – Ralf
Awareness of the situation exists, and motivation was a factor that could affect their lives during cancer, leading to a more inactive everyday life than the participants wanted and were accustomed to. Some participants saw themselves as active persons with many activities and hobbies, but they became inactive. They felt that it was meaningless to do these activities.
”It´s hard every day when getting out of bed … finding something that feels meaningful” – Viola
There could also be thoughts such as “to what use”, questioning why there should be exercise and good performance as before. Despite these thoughts, the living habits that the participants had developed over many years was the essence of the maintenance of health-related behaviour despite lack of motivation (Table 3).
Additional quotes from patients.
”I´m depressed at times; that´s how it is. I lose appetite; I lose my sparkle, I´m doing that, maybe everyone does?” – Ali
”Then you need to consider that we are becoming older … it´s of course not like when I went through the last abdominal surgery sometimes in the eighties … then it was quite easy … that´s what I have here in the back of my mind…but it´s obviously going to take longer now.”
”To have this contact with your old friends and so on … so that you don´t lose like all outside connections because of illness…I think that´s really important.”
Theme 2: Life circumstances affecting living habits
The participants described earlier experiences in life and how these might affect living habits. There were participants who had heart disease and became aware that life is fragile and requires self-care. Others struggled with depression and symptoms such as fatigue and severe difficulties with memory. These circumstances affected their ability to maintain their living habits. Some participants reported various types of skeletal injuries leading to impaired mobility and pain, which limited physical activity. Long-term effects led to acceptance and adjustment of the situation, and their living habits were not negatively impacted in the long term. They were as active as they wished to be.
”I have pain … it would never stop me … and I don’t take support from anyone else because I’m feeling pain … there is always something positive in the end.” – Viola
Some of the participants mentioned prior surgical experiences and referred to them when talking about recovery. They recalled positive experiences of their ability to recover and embraced self-efficacy for their planned surgical procedures. Despite their confidence in an excellent recovery, the older participants reflected upon the fact that they were older now (Table 3).
One participant had acute abdominal surgery a few months prior and had the new positive experience that being physically active after surgery, even when feeling weak, led to quick recovery. Previous experiences will be used as a force to manage this situation and thoughts of recovery. Being empowered will bring the strength to manage new circumstances such as oncological treatment. Participants who know what happens and why and who are confident in their own ability to manage will develop their living habits by adjusting their diet and physical activity to prepare for major surgery.
”… best possible result….I´m sure…. I have really experienced that after this acute operation.” – Marianne
Participants had experiences with changing their living habits earlier in life. The causes were sometimes medical conditions and sometimes other causes such as overweight. In particular, patients focused on their eating and smoking habits. Some participants had diabetes, and when informed that changing their eating habits would be beneficial for their health, they rapidly changed their eating habits and made plans to continue with these new habits. Smoking cessation was another change that some patients made after having a myocardial infarction: ”this is a date you never forget”.
”The only thing I could influence then was my living habits.” – Ralf
There were also experiences of counselling for eating habits due to overweight caused by immobility. The dietary recommendations that patients received when diagnosed with cancer became confusing and were difficult to handle because they were directly contrary to recommendations given previously.
”… but yes, I´m scared … think if I only continue to eat like this afterwards?… then I have thoughts of… I will roll forward and become really fat (laughs)” – Sarah
The participants expressed similar thoughts about food and healthy eating and drinking habits. The use of alcohol was described as a habit that was unprioritized and unrewarding during cancer. Older participants expressed that they could have eaten more vegetables earlier in life: “We have tried to add more vegetables over time … but we should have done that much sooner”. Their circumstances in life were different then, and lifestyle issues were not in focus at that time. Patients had thoughts of what could have caused their cancer.
Theme 3: Activities bringing mental strength
The participants expressed that activities such as physical/social activities and support from health care professionals raised their physical and mental energy levels. Participants identified themselves as active persons, but there were differences in their definitions of physical activity. Various activity levels existed, such as exercising every day at the gym, walking several hours in the forest, taking the dog for a walk, or being engaged in a sport association. These are all ordinary physical activities, and the participants saw themselves as active and thought of it as a positive quality.
The participants related physical strength to positive feelings. They expressed that it was easier to remain in a good mood when they had physical strength or at least regained their strength before the next dose of chemotherapy. “It’s so nice… this feeling of regaining strength”. Patients noted that physical activity strengthened the body and mind, and even more favourably, they found that it enhanced their adjustment to the situation; for example, one participant expressed that sentiment as follows:
”I feel I haven´t the same strength in the body … but strangely, when I thought, ‘Now I will go to the gym’, it disappears … unbelievable … the pain just disappears because I think of something else … everything is inside here (pointing to his head).” – Ali
Physical weakness, on the other hand, elicited adverse feelings: patients did not recognize themselves and feared that their condition would worsen: ”You don´t feel like yourself”. Physical energy levels affect the ability to maintain prior behaviour. Physical symptoms caused by cancer itself or by side effects of oncological treatment were common. Support from health care professionals was crucial. The participants who received insufficient support experienced difficulties handling their living habits, particularly eating and physical activity, in a satisfying manner. Loneliness sometimes occurred, negatively affecting the patients’ mental strength. Receiving support too late or only after the fact made the participants frustrated.
“After that, there haven’t been any problems … I know exactly what I shall do … but I had not a clue before … so that was like super hard.” – Sarah
”I have a consulting nurse, and I think it has been functional if I need anything, but in a way I miss a steady hand that follows me and knows how I feel on a weekly basis … the same person.” – Thomas
The participants highlighted their social interactions with family, friends and other persons in their environment as an important part of life. Social activities including support from the nearest members of their social network were experienced by participants as strengthening their health. They identified their life partner as their strongest mental support, and if needed, the partner rendered practical assistance in everyday life. Practical support due to reduced physical energy awakened reactions of reluctance to be more dependent. Feelings of losing their habitual role in their social context appeared (Table 3). The experience of maintaining their habitual role and identity in their social lifeworld brought significant mental strength during cancer.