Side effects of fluctuating intensity
The chemotherapy took place in an outpatient cancer clinic at a hospital. I arrived in the morning and went home after the treatment – around midday. I usually had the same nurse during the treatments. She saw my uncertainty and my fear. When I met her, I immediately felt safe, and I put my complete trust in her from the first moment. If I became nervous about something during the treatment, she would quickly explain the situation to me. The treatment consisted of three small bags of liquid that was injected into my veins over a two-hour period. I went through this every three weeks in six rounds in the autumn of 2014.
The first treatment went very well, I thought. I did not notice anything, and I did not have a heart attack, which I had feared. I left the hospital feeling happy that day. Little did I know what the coming days would be like. The nurse said that I might feel unwell during the night, but if that happened, I should take extra anti-nausea medication. She also said that I might become a little constipated, and explained how I should deal with it. I forgot all of this the moment I left the hospital. In my joy of having survived my first treatment, I walked over to the bakery down the street. I was quite hungry and enjoyed some hot cocoa and sweet buns. They tasted incredibly good.
In many ways, my body took the reins; it gave orders, it made choices, and I hung on
Later in the afternoon I developed a slight headache, similar to when you sit for a long time in a room without fresh air. Then I started to feel unwell. Nauseous and shivering, I completely collapsed. It was as if I had disappeared from the world. Talking was impossible, and it felt like I was being swept away by a breaking wave. The entire first night was like this because I had not understood the forewarning of what was to come; I had not yet learned to take the anti-nausea medication in time.
In the following days, I felt like my body was full of poison. Every day, the side effects changed and their intensity fluctuated. In the course of a week, I felt nauseous, chilled, constipated, dizzy, weak, tired and emotionally unstable. I had headaches, concentration problems, shortness of breath, insomnia and a varying appetite. Each side effect had a fixed day, and came and went at set times. On the first day of chemotherapy (day 0), nausea, headache and chills came over me slowly (almost like a hangover combined with morning sickness during pregnancy). I also had intense hot flashes, which lasted throughout the entire period of treatment but which have steadily subsided over time.
On the first day following the treatment, these side effects increased and my appetite changed. I was hungry, but I did not feel like eating. My body gave me a clear message about what it wanted and did not want with regard to food. Day 2 ran the same course, but with the addition of constipation, tiredness, concentration problems, shortness of breath and weakness. In the following three days I felt emotionally unstable as well. I was despondent, angry and fearful of seeing other people. I also had slight insomnia throughout the entire period. But on the morning of day 7 I was like a new person. I felt an abrupt shift from being sick to being well, which I had never experienced before in my life. It was not like having the flu, because then you recover gradually. I was suddenly well overnight. I was full of energy and vitality, but as it turned out this only happened after the first three treatments. Figure 1 shows my side effects from chemotherapy and their intensity throughout the first three treatments.
The period with side effects and challenges after each treatment proceeded in the same way during all six rounds of chemotherapy, but after the third treatment it took me longer to come around each time.
Because of this variability, I have begun to wonder if the methods we use in research and in clinical settings to measure these experiences capture them accurately
I had an incredibly powerful feeling that my body was in a field of tension between a sort of biological necessity and a subjective experience and that I had little control over how my days unfolded. In many ways, my body took the reins; it gave orders, it made choices, and I hung on. For instance, there were some kinds of food that I could not stand to see or smell while I was undergoing chemotherapy. I felt very ill when I saw yoghurt in the refrigerator. There were other foods, however, that I just had to have every day of the week during treatment, such as boiled cabbage with cranberry jam. In other words, my body was constantly sending out strong signals about what it needed and did not need. I interpreted this complete 'takeover' as having something to do with alleviating my symptoms. In the same way that my body governed my food intake, it also directed my need for fresh air and physical movement in order to ease my discomfort after treatment.