My name is Lucie and I had surgery for high-grade peritoneal pseudomyxoma in 2022, at the age of 22.
It all started with bloating, a feeling of heaviness after every meal, and a weight loss of 10 kilos over two months without any particular change in my lifestyle. As the weeks went by, my stomach became harder and harder.
One day, after a consultation with my primary care physician, who referred me to a gastroenterologist, I panicked and decided to go straight to the emergency room because the wait for an appointment was very long.
After an emergency scan, the surgeon came back to tell me that I had a tumor the size of a “rugby ball” on my right ovary, which would need to be operated on and removed for analysis.
A few weeks later, I went into surgery and they removed a 7-kilogram tumor as well as my appendix, right ovary, and omentum. They also told me that my tumor had ruptured and released mucin throughout my abdomen.
A month later, the biopsy results came back, and I received the dreaded bad news: peritoneal pseudomyxoma. I was asked to change hospitals and go to Paris.
They explained the operation to me, as well as all the risks involved. I was prepared by a psychologist, nurse, and dietitian. The weeks leading up to the operation were very busy, and I took advantage of a few days to go on vacation and recharge my batteries.
And on November 15, 2022, I went into surgery for the infamous HIPEC (Hyperthermic Intraperitoneal Chemotherapy). The operation lasted 13 hours, and they removed my spleen, gallbladder, left ovary, and right diaphragm.
Waking up will be very difficult, between the pain and the incomprehension, my body connected to all these machines that were quite impressive but set up to keep me under surveillance.
This is where a journey full of complications begins for me.
Five days after the operation, I developed sepsis following peritonitis of the small intestine. I went back into surgery for six hours and came out with a temporary stoma bag. I was told that this was for healing and that I would have to learn to live with it for a few months.
I started eating again 18 days after my first operation. What a joy! They began talking to me about discharge, and I finally felt that things were improving.
When I was discharged on December 6, 2022, I went home for a short 24-hour stay. I returned to the hospital with a severe pulmonary embolism. The important thing for me was my desire to get through this and my will to fight. Every day was another battle.
In March, I was told I would have an operation to reconnect my intestine. The operation went relatively well, and 2 meters of intestine that had “flattened” in my stomach was removed. A few days after the operation, I developed an enterocutaneous fistula, which meant I had to go back to the hospital to have a stoma bag fitted and the wound reopened.
A few months later, the bag was finally removed and the hole closed on its own.
I am now about to celebrate two years of remission, which makes me very happy.
The journey has been fraught with obstacles, but it has made me the person I am today, and there is always light at the end of the tunnel, even if it wasn’t easy to stay positive every day. Even if we don’t expect it and we are not given a choice, it makes me proud, and I am happy to be able to share my story with you.
I now enjoy every little moment that life gives me. We learn and we recover from this ordeal. If you are reading my story, you may be in the process of learning about this diagnosis, so I hope that I can help in some small way with my experience. I would like my story to serve as a springboard to hope and the will to live, so I am sending you lots of positive vibes.