I had surgery for low-grade peritoneal pseudomyxoma four months ago. Today, I am doing very well. I’m going back to work in a few days on a part-time therapeutic basis and I’m making the most of every moment of life. I hope that my story will help you to face this difficult time (both for patients and their loved ones) as calmly as possible. I found the existing stories very helpful.
It all started with a fertility check-up. I was diagnosed with polycystic ovary syndrome. This was difficult news to take for a young woman who wanted to become a mother. During the examinations, the gynecologist discovered a mass on my right ovary. After further investigation (pelvic MRI), it turned out that this mass was on my intestine, a Meckel’s diverticulum, which I was told was benign. But I still had to have it checked before considering pregnancy. The results came back after a scan on August 2, 2019: ruptured appendicular mucocele. I had an emergency appointment with a digestive surgeon the next day, who referred me to a specialist at the university hospital.
My life was turned upside down. I had to cancel my vacation and try to come to terms with the idea that I was sick, sick without feeling sick. I had no symptoms, which was perhaps the hardest part. And my personal life was also falling apart. The man I had been sharing my life with for six years left me. A week after celebrating my 30th birthday, I had to face two incredible challenges: a breakup and, above all, illness.
I never let myself get down. My mother accompanied me to all my medical appointments. I had a very strong connection with the surgeon who was going to treat me. I immediately felt confident. She takes the time to explain what is happening to me and does not rush to give me the diagnosis, which is nevertheless fairly certain: I appear to have peritoneal pseudomyxoma. This is confirmed by a peritoneal MRI and blood tests. The operation is scheduled for September 10, just over a month after the scan. I don’t really realize what’s happening to me, but I’m convinced of one thing: I’m going to get through this. In a few weeks, I prepare myself as best I can for the operation: psychologist, sophrologist, naturopath, and acupuncture. I enjoy time with my loved ones and try to gain as much weight as possible. Although I am naturally anxious, surprisingly, I am not afraid of what lies ahead. What I dread most is the scar and that infamous six-letter word that you never expect to say about yourself: cancer. But you discover a crazy amount of strength in life’s trials, such as illness. The support of my loved ones is precious and indispensable, as is the contact with a volunteer from AMARAPE, with whom I was able to talk several times.
The day arrives quickly, and after a short night in my hospital room, I walk down to the operating room on my own two feet and settle myself onto the table. The operation lasts seven hours. They remove my gallbladder, part of my intestine and colon, clean and scrape a lot of peritoneum, and then the HIPEC (Hyperthermic Intraperitoneal Chemotherapy). As planned, my ovaries were preserved, which may one day allow me to become a mother. I woke up feeling fairly calm. I had lots of tubes: a nasogastric tube, an epidural, a urinary catheter, a central line, a drain, and an IV in my wrist. I spent three days in intensive care. I get up the day after the operation to sit up for a few hours. It’s hard, but I’m in good spirits and, above all, I’m not in any pain. The staff are remarkable. The medical equipment is removed fairly quickly: the nasogastric tube after 24 hours, which allows me to start eating again (even though I don’t really have an appetite). I was transferred to a regular ward three days after the operation, with only my drain and central line remaining. I still had no pain, and on day 5 I was only taking a few grams of Dafalgan a day to relieve a headache caused by the removal of the epidural. My first steps were unsteady, and I still had trouble eating and getting up, but I recovered very quickly. Six days after the operation, I had a blood test with a great result: my CRP was normal. The doctors therefore decided to let me out the next day. I couldn’t believe it, but I was over the moon!
Back home, I spent a lot of time in bed (a medical bed set up in the living room) and rested. I did nothing. I let my body recover from this ordeal and relied heavily on my loved ones, who took turns staying by my side. My appetite returned and every day I noticed new progress: my first shower, my first walk outside, my first restaurant visit, etc. The most difficult thing to manage was my bowel movements, which were very rapid and unpredictable. You have to be patient. I was treated by a physical therapist for a few months: rehabilitation of my abdominal and back muscles, because posture takes a hit. I was able to move into my new home at the beginning of November and am savoring every moment of this new life that is opening up to me. I feel alive and serene. I am not the same after this ordeal, I can feel it and my loved ones have all told me so. I never fought the disease, I helped it to go away. I quickly accepted my scar, which is now part of me. My first follow-up appointment was at the end of October: my blood tests were normal, and it was confirmed that I had low-grade cancer. All good news. My next appointment with my surgeon is at the end of April for an MRI and a follow-up blood test.
I realize how lucky I am to have recovered so quickly from such a major operation. I will be monitored for 15 years for this disease, but I choose not to see it as a threat. A beautiful new life has begun for me. I wish you all much courage if you have to go through the same ordeal. You come out of it changed, that’s for sure.