When I was 9 years old, in 2000, my grandfather died of cancer. His death affected me deeply, as he was the only grandparent I had left after my grandmother died when I was 7, although I hadn't been very close to her because she had dementia. But I was very close to my grandfather, and it felt very empty when he passed away. I was particularly affected at school when my classmates talked about visiting their grandparents during holidays and weekends.
In 2004, when my mother turned 50, I began to worry intensely that she would become ill and die just like my grandmother. I was 14 years old at the time. The years went by, and I gradually began to relax. Those years were marked by frequent bouts of depression, self-harm, and suicidal thoughts, all while I worried about my mother. In December 2011, when I was 21, my mother suddenly started going for a lot of tests at the hospital, and my anxiety began to gnaw at me again. In January 2012, I finally learned that the doctors suspected my mother had rectal cancer. She was 58 years old at the time.
In March 2012, my mother had surgery. Her entire rectum and part of her colon were removed. She had a permanent stoma. At that time, I was struggling to finish high school and was terrified that my mother would die! It was hard for me to grasp how major my mother's surgery actually was, as it was performed laparoscopically. I was at school on the day of her surgery but couldn't focus at all. The anxiety was constant. It was only when I heard my mother's voice when she came out of recovery that my anxiety began to ease. The surgery was considered successful. They could not see any spread to the lymph nodes that had been removed during the surgery. But my mother received chemotherapy preventively.
It was so hard for me to see my strong mother in so much pain and so affected by the chemotherapy. I also know that my mother protected me a little too much. In the fall of 2012, she was diagnosed with an autoimmune disease called sarcoidosis. After that, she also had regular tests on her lungs and kidneys. It could now be seen that some "spots" (scars from the sarcoidosis) on her lungs were disappearing while others were growing. I immediately realized they were metastases, but everyone tried to reassure me that they didn't necessarily have to be. She also had spots on her kidneys. But in May 2014, my mother had surgery on her lungs to biopsy the spots. The results came back, and they were metastases. Biopsies were also taken on her kidneys, which also turned out to be metastases. At that point, I just collapsed. We were now told that my mother would not survive. The doctors said they could slow the disease, but could no longer cure it. That time was so difficult. I knew my mother would die, but not when. The doctors couldn't say anything about it. It would take almost 3 years.
Around the summer of 2016, my mother began to feel worse. Metastases could now be seen almost everywhere. I had a mental breakdown. I was living with my ex at the time and was in a deep depression. My mother just kept getting worse and worse, and two days before Christmas Eve we learned that her pain was caused by metastases on her vertebrae that had caused fractures. That was when I broke down once again. Somewhere inside me, I realized that she wouldn't live much longer. I started asking my mother more about the funeral and such. On New Year's Eve, we received news from the X-ray department that made me realize that my mother did not have many months left to live. Now I could no longer sleep without taking medication. I could call my mother late in the evening to ask more about the funeral. Which hymns did she want? Who would sing? Which songs? Then things moved quickly. By the thirteenth day of Christmas, she was in so much pain that she needed a wheelchair. In the middle of January, we contacted LAH (asih) at the University Hospital in Linköping. My mother's last wish was to die at home, and I made sure that wish was fulfilled. About three weeks before my mother died, I separated from my ex and had to move back in with my parents. During this period, I carried a double grief. Grief over the separation, but also grief and anger that I had needed my healthy mother.
On February 14, 2017, at 4:30 a.m., my mother passed away, surrounded by me and my family in the home that she and my father had built in 1979.
It felt like I was going to completely fall apart. I know my family was very worried that I would commit suicide. I was told that my mother was not afraid to die, but she was afraid to leave me. I was 26 years old and so broken by depression and the separation. Every day was a struggle to get out of bed, to breathe, to live. I don't remember the funeral very much, other than that I cried uncontrollably.
Even today, almost 9 years later, the grief is paralyzing. It feels like it is getting worse and worse. Christmas is always especially difficult, and I struggle to keep wanting to live. I miss my mother every day. Standing beside someone who is seriously ill is terrifying. You feel so incredibly helpless and cannot do anything to ease the pain. Seeing my strong mother scream in pain, she who otherwise never complained, is something I wouldn't wish on anyone else! I felt so alone. All my friends had both their parents alive; none of them could understand what it was like to lose their mother far too early. My mother would have turned 63 on March 6, 2017.
In the summer of 2017, I finally found Ung Cancer and got to meet others with seriously ill loved ones. Suddenly, I didn't feel as alone. There were others who understood. Even though we all had different life situations, there was still a mutual understanding. Today, I am a coordinator for member meetings in Linköping just so others can feel less alone!
