For me, 2022 was a year of two halves. It was the best year of my life, with the birth of my son Marceau on February 6, a moment of immense joy. But it was also a year of brutality that I had not anticipated. Two months later, on March 28, 2022, at the age of 27, I learned that I had low-grade peritoneal pseudomyxoma.
It all started during my postpartum visit, one month after giving birth. My obstetrician suspected acute appendicitis, and after a CT scan, the verdict came: an appendicular mucocele. I was told that the procedure would be performed laparoscopically, with no cause for concern. The operation went well, the mucocele was removed… but reality took a turn I hadn’t seen coming.
The mucocele had perforated, and the mucin it contained had spread throughout my abdomen. I was one of the rare cases of peritoneal pseudomyxoma, one in a million each year. I was then taken to a RENAPE specialist center.
The day of the operation arrived quickly, Wednesday, April 20, 10 a.m. in the operating room. I woke up around 9 p.m., exhausted and broken. I had drains, a nasogastric tube, an IV in my neck, a urinary catheter, and I was connected to I don’t know how many machines. My body was in “survival” mode. Fortunately, the operation was a success. No organs were removed, except for the gallbladder and omentum. My liver, spleen, and right diaphragm were cleared of the disease. The organs were bathed in strong chemotherapy for 30 minutes. And luckily, my ovaries and uterus were preserved. Since waking up, every day has been a new battle. I never imagined it would be so difficult, both physically and mentally. No longer being able to drink, eat, move, breathe, and having to rely on others for everyday tasks. Little by little, I relearned how to live, take care of myself, and regain my independence. Thanks to the remarkable work of the medical team, I had a new start. On May 2, I left the hospital and was reunited with my son Marceau, a moment of intense happiness.
The return home was difficult, with refeeding being the biggest challenge. But very quickly, I felt better, started walking again, and resumed my role as a mother. I had a wonderful summer and even started a new job in September 2022.
Unfortunately, following the operation, I have had multiple intestinal blockages due to adhesions in my intestines. In August 2022, February 2023, and May 2023, I was hospitalized for a few days with a nasogastric tube, which fortunately managed to remove the blockage each time.
I have been monitored regularly, every six months for 10 years, with MRI scans and specialist consultations. The results are reassuring, even though I have a persistent pocket of fluid in my pelvic area. But I remain hopeful.
On June 17, 2024, just before my 30th birthday, I heard the word “recurrence.” My world collapsed in an instant. Why me? Why our family? It was a difficult ordeal to accept, but I knew I had to start over. A little more than three months passed between the announcement of the operation and the actual procedure, because I needed that time. I needed time to prepare myself, Marceau, and our family. I did it once, I’ll do it twice, it’ll be okay. I am preparing myself physically intensely because I know what is going to happen to me and I want to be as ready as possible.
The operation took place on September 24, 2024.
Around 4 p.m., I woke up with a smile and the anesthesiologist’s words telling me, “No disease, no HIPEC, no drain”: there was no recurrence. I want to scream and jump for joy: I AM HEALTHY. So yes, they reopened my entire scar to find that what they thought was a recurrence of my disease was fluid blocked in my misplaced fallopian tube. But the result is that I’m leaving with a “brand new” stomach without any adhesions on my intestines, which is a very good thing with all the repeated blockages I’ve had. I am so happy and relieved by this wonderful news that I am leaving the hospital on the fifth day. Every day is a new challenge, a new first, and it feels so good to be living again, little by little, as calm as I am.
Today, four months after this second operation, I am doing very well. I went skiing at Christmas, I have taken up dancing and cycling again, and I am back at work four days a week. I am amazed by the resilience of the human body. I never gave up, I always kept a positive attitude: “Life is beautiful. “
Thanks to this ordeal, I have learned to live fully in the present moment and enjoy every little thing. The illness has taught me to see life differently, with gratitude, and to never take health and simple moments for granted. I am immensely grateful to my son, my husband, my family, my friends, and the medical staff. Without them, I could not have gotten through this ordeal. They supported me every step of the way.
I have created a support group for people affected by this disease, so please don’t hesitate to contact me on Instagram @maelysroze if you feel like it.
To all those who are going through difficult times, you are not alone. I send you all my courage and strength. Together, we can overcome the unimaginable.