Major findings from the thematic analysis of the interviews pertain to a number of issues.
Resilience
virtually all patients expressed their strong wish and attempts to actively cope with their illness and its consequences in their psychological, social and medical existence. Resilience was shown in searching for information about the illness and its medical management, exploring options offered via patient organizations and the internet, adjusting health behaviour (eating, drinking alcohol, physical activity, sleeping), and searching for existential enrichment.
Two weeks after the diagnosis ‘incurable disease’, I thought ‘O.K., that’s it, no more complaining, nagging and crying. These are the facts. Get back to your life’. How long the tunnel may be – may be 3, 5 or 10 years – you cannot live in the dark.
It sounds strange, I would have preferred to stay healthy, but I find this an extremely interesting period in my life. I want to know what’s happening in me, in my body. Why do I have this pain? I prefer to have control.
Fatigue appeared to be a prevalent and central phenomenon.
Chemofog: it takes an enormous amount of energy to keep up. It is hard to focus and think – it’s like you can’t look at the world as it is, as if there is a curtain in front of it. I lost a part of myself on the way. I think my environment notices that. I’m no more my old self.
I’m exhausted because of the chemo. I sleep 3–4 hours every afternoon.
A major finding pertained to a tendency to try and strengthen social bonds with close friends and relatives, with the associated loosening of ties with more distant persons in the social environment.
Over the years the number of people with whom I am in touch has reduced significantly. Now I’ve some 15 real friends with whom I interact intensely. I cut out fringe around my social world.
The response from my social environment are always the same … “Yes, unpleasant, I have an aunt who also has cancer”, … “you look good, you can do it. With my aunt, however, it was end of story soon ...” .
Superficial friendships were ended, the value of psychologically distant relatives and friends was reduced to virtually zero. Patients reported to be disappointed and sometimes angry by the self-centered responses from superficial acquaintances to the patient’s cancer. Changes in values related to perceiving money, status, power, and wealth as almost irrelevant. Patients reported “turning inward”:
I observe that I am focusing on what‘s really important: turning inward.
Cancer leads to existential loneliness. The horrific loneliness in the suffering – it’s almost impossible to tell others about that.
I have become more complacent, I’m enjoying my life more. I’m o.k. with how it is.
Finding meaning and satisfaction in life by attaching more meaning than before in cherished immaterial phenomena (love, beauty, rest, silence) was another theme.
I have become much more ‘bourgeois’. I drink less and sleep more. No more stress about my career. I’ve let it go, it does not interest me anymore.
Health care providers were perceived as highly positive. The supportive and listening skills of specialized cancer nurses was particularly appreciated as highly positive. Shared-decision-making (SDM) was a preferred way of patient-physician relationship although a few patients preferred the ‘doctor knows best’ style .
My oncologist and I decided about the next treatment together. So, I was asked again and again whether I was o.k. with the next step. My intuition was decisive. If I indicated “no further than this now”, we halted the treatment temporarily. It was a continuous shared decision making.
Psychological help was not sought after often, patients who did seek help from psychologist were positive over their work overall. Patient organizations were not perceived to be very helpful.
Religion and death were hardly mentioned, although virtually all patients mentioned that they had made arrangements regarding end of their life (burial, music, distributing their cherished possessions).
Means and standard deviations of selected LIWC-dimensions of the patients in the current study are given in Table 3, together with means and standard deviations in the Dudău et al. study. Compared to LIWC-scores of healthy respondents, the patients with cancer scored higher on ‘anger’, ‘sadness’, and lower on ‘religion’; the patients reported lower scores on issues relating to time. Regarding cognitive processes, the ‘wounded storytellers’ exhibited significantly lower scores on ‘insight’, ‘cause’, and ‘tentatives’ - pointing at the heightened sense of cognitive confusion and increased search for meaning about the lived cancer experience.
Table 3
Scores (means ± standard deviations) on selected LIWC dimensions, in current study, compared to scores in Dudău et al. study (healthy Dutch sample); * p < .05, ** p <. 01, *** p < .001
LIWC dimension | Current study | Dudău et al. study | Current study vs. Dudău study |
Affect | | | |
positive | 2.47 ± .62 | 2.33 ± 1.08 | |
negative | 1.40 ± .44 | 1.12 ± .68 | * |
anxiety | .27 ± .19 | .22 ± .25 | |
anger | .39 ± .14 | .26 ± .29 | *** |
sadness | .62 ± .29 | .29 ± .27 | *** |
Cognitive processes | | | |
insight | 2.38 ± .40 | 2.96 ±. 88 | *** |
cause | 1.02 ± .23 | 2.11 ± .75 | *** |
tentatives | 3.09 ± .66 | 2.72 ± .84 | * |
Social | | | |
family | .54 ± .35 | .53 ± .64 | |
friends | .16 ± .10 | .15 ± .17 | |
Time | | | |
past | 4.91 ± 1.22 | 5.47 ± 1.77 | |
present | 11.29 ± .95 | 12.72 ± 2.10 | *** |
future | .79 ± .21 | 2.29 ± .79 | *** |
Personal concerns | | | |
religion | .09 ± .16 | .17 ± .34 | * |
death | .16 ± .15 | .15 ± .25 | |