In December, 2004, at the age of 33, I went to have a Pap smear after having some discharge and irregular bleeding. At the time, I was a happy, married woman and mother of two small children, aged 2 and 4. After working several years as an auditor, I had only a year earlier started as a manager of an accounting office, and enjoyed life as it went on.
Early January the year after, I received the shocking news that the Pap smear came out positive for cancer cells. Only a couple of weeks later, I underwent surgery, removing the cervix, uterus and multiple lymph nodes. My ovaries were left behind, “tied up”, to prevent me from going into menopause. The cancer was staged 1B. From being a healthy toddler-mum one day, I was transformed into being a sick and weak patient, not able to take care of my own children.
The surgery was followed up by heavy chemotherapy, making me even sicker and weaker. Due to troubles keeping my blood values up, I had to change chemo-treatment several times, but finally, six months after my fatal pap smear, my treatment was finally completed.
Three weeks after my last chemo treatment, I was back at work, part-time, fighting to get my life back on track. The hospital wouldn’t let go completely, so I still had to come in for check-ups every third month. This included scans, blood work and a gynecological examination. Life was smiling to me and my family again. It felt like I had gotten away with the scare and a lesson in how precious life is.
Until fall 2006. One night, laying straight out on bed, I felt a big lump on the right side of my stomach. It felt like an orange or tennis ball in my stomach. And in December 2006, an MRI confirmed a tumor measuring 10 x 6.5 cm in the upper right side of my abdomen. It turned out to be a metastasis from the original cancer. It was rather big and the doctors thought it was a lymph node. My husband and I were told that it was inoperable and the only treatment I could have was chemotherapy to hopefully, shrink it and extend my life. There was no hope of overcoming this cancer, we were told. The good news was that there were no other metastases, yet…
The chemo treatments started again. I was not coping well with the treatments, and was in and out of hospital, having infections and feeling bad. In addition to living with the threat of death hanging over my head, the doctors and national labour authorities granted me lifelong disability payments. My working career was over. I was now a fulltime mum, housekeeper and patient. And I was sick. Life as I knew it was officially over.
After three months of chemo treatment, the tumor had shrunk, the doctors discovered that it, in fact, was not in a lymph node, after all. It was in my right ovary, and the latest scan didn’t show it spreading to any other sites. They decided to operate. The tumor was successfully removed. And after three more rounds of chemo, I was once more in remission.
For a year this time. Then I discovered a big lump on the other side of my abdomen. It turned out to be a water-filled cyst, that was also filled with SCCC cells. It was removed by surgery. This time the doctors didn’t want to give me more chemo, as I had been responding very badly to the last treatments. They wanted to save their options for the “next time”, in case it then would appear in some inoperable organs. They were, however, still convinced it would come back, and left me with no hope of staying in remission for long.
But I didn’t want to give up, and opposite to the first time cancer struck, when the first metastasis appeared, I started to ask questions. I learned about Neuroendocrine Small Cell Cancer. Searching the internet didn’t give many positive results, but one day I found a report of a study from Korea, telling about a woman surviving more than five years. This gave me enough hope to fight on at the darkest time, and I realized there is always hope.
Searching on, I found that I was not alone, and on a Cancer Compass message board I met a couple of other girls fighting this disease. To be able to communicate easier, the Facebook page Small/Large Cell Carcinoma of the Cervix: Sisters United was started in 2008. The group and sisters has given me great support, and I have even traveled from Norway to New York and Las Vegas, several times, to meet members of this group. The bounds that I have made with some of the girls in this group are very special and precious to me.
In May 2019, I have been in remission for eleven years. I have survived so far, and are still without signs of metastases. For months and years, I was expecting to die soon, because I was told there were no hope I would survive this cancer. As I believe there is a meaning to everything that happens, I believe that I am meant to share my experiences to help others. Today I am working part-time at the local hospital, putting patient experiences and needs in focus when developing and evaluating the services of the hospital.
I still struggle with side effects from treatment, like fatigue and lymphedema, but my life is good and I am a very happy woman, wife and mother. I live my life to the fullest, enjoy seeing my kids grow up and use my experiences as a patient to make a different for those coming after.