This blog post is part of a series of patient stories taken from interviews conducted with volunteers who had responded to the All.Can patient survey. Some information has been changed to protect anonymity.
I started to get very dizzy, almost like I was swaying so I went to see a doctor. During the two years that followed, I went to see nearly seven or eight different doctors, as no one would take me seriously. Finally, it got so bad so that I went to the emergency room and told them that I wanted to be examined by a neurologist. I had to wait ten hours, but I waited to be seen. A neurologist examined me and ran a blood test. I later found that I had cancer by reading my report online. It was not a nice way to be informed about my diagnosis. The diagnosis came three years after my symptoms first appeared.
‘I felt that my doctor did not care for me’
It took a full eight weeks before I found out which type of cancer I had and how severe it was. I prepared myself to die and wrote my will. I had my first doctor’s appointment three weeks after my diagnosis. I was prescribed sleeping pills during this time, as I was unable to sleep because of my anxiety. I got more and more ill as time passed. My dizziness got more severe, my fingers stopped working and I was shaking. As soon as I did any sort of physical activity, I got a temperature.
I was able to see a therapist and went several times. He was good and really supported me. However, my best support system was a friend who was working at the hospital and she advocated a lot for me. She was able to get my treatments started at a time when I was left waiting for my doctors and care. My doctor went on holiday for four weeks, which postponed my treatment. I felt that my doctor did not care for me.
‘I am almost working full time’
I was treated with both chemotherapy and monoclonal antibodies and I became severely tired after each treatment session. I had some side-effects, but all of them are common for my type of cancer, such as dizziness and shaking. I am struggling to sit down, as my body starts to ache when I do. I was never offered any other treatment other than what I was given. However, I did read online that this was the most efficient treatment.
My cancer type is quite rare and very few people in Sweden have been diagnosed with it. We have a Facebook group and have had a support get together. I have also been supported by the Blood Cancer Association in Sweden.
At the moment, I am almost working full time. Physical therapy has been important for me. Nearly throughout all my rehab, I have been able to work. This has been really comforting. I have had a lot of issues with the Health Insurance Fund, however. My doctors have had to send them a lot of different papers. I was told recently that I was not obliged to repay them for the time I was sick – which feels bizarre.
* Names and some other identifying elements have been changed to protect patients’ anonymity.