When I was diagnosed with my illness (peritoneal pseudomyxoma following ovarian cancer), my surgeon strongly advised me to visit the AMARAPE website instead of searching anywhere else on the internet. It helped me a lot. And now, more than two years later, I would also like to participate and share my story with you.
It all started in November 2017, during my pregnancy, around my fifth month. Overnight, I could no longer walk. I felt severe pain in my stomach, and every time I tried to move, contractions prevented me from doing so and amplified the pain. At the hospital where I went, they didn’t want to do any further tests. They kept telling me it was ligament pain and put me on MAP (threat of premature labor).
In December 2017, I was visibly losing weight, I had no appetite, and the pain was getting worse. The medication is becoming less and less effective and, after several stays in hospital, the doctors finally decide to do some tests. They detect a mass on the side of my stomach, but again, according to them, it’s nothing… Just a benign fibroid that shouldn’t be touched, and they refuse to give me an MRI, so I’m once again pumped full of medication.
In early January 2018, I broke down. I was in pain and afraid for my baby… My family decided to transfer me to another hospital. Then everything happened very quickly. I finally felt listened to and understood. A few days later, following spikes in my fever, I was given an MRI. That same evening, I was told that they were inducing labor (at 31 weeks) so that I could have emergency surgery…
I gave birth to a beautiful little girl during the night and saw her for a few minutes before she was taken to the neonatal intensive care unit. Then, around 10 a.m., I was taken from the delivery room to the operating room… The operation was complicated (it lasted 7 hours with the help of 2 professors and 3 surgeons). The mass was very large, infected, and stuck to several organs. The surgeons had to remove a small part of the colon and stitch up the small intestine, which had been perforated… Waking up was quite difficult after giving birth and undergoing surgery, but I recovered quite “well,” at the same pace as my daughter. Three weeks later, we were finally home…
In February 2018, I underwent a series of tests (MRI, CT scan, ultrasound, blood tests).
In March 2018, after receiving the results of the biopsy and various tests, the doctors told me that I had low-grade ovarian cancer, but that wasn’t all. When the tumor ruptured, it created a rare disease of the peritoneum, the infamous peritoneal pseudomyxoma… The disease had spread throughout my lower abdomen, liver, etc. After my case was discussed in a consultation meeting, I was told that I would have to undergo major surgery to remove the disease with Hyperthermic Intraperitoneal Chemotherapy (HIPEC). They explained that they were going to bathe my organs in chemotherapy at a certain temperature. I was scared and didn’t want to leave my little baby again. It was very hard to take.
After that, I had a series of mandatory appointments (psychologist, anesthesiologist, surgeon, physical therapist, nurse). I also had to do exercises to prepare for the big day: walk at least 30 minutes a day and practice breathing exercises with a small machine (for lung rehabilitation after the operation).
On Thursday, April 5, 2018, the operation lasted more than 8 hours. The excess disease was removed from everywhere, and my two ovaries were removed along with my fallopian tubes, gallbladder, and omentum, followed by the famous chemotherapy bath.
I woke up on Friday in the recovery room feeling like I had been hit by a truck. I had an IV in my neck, a feeding tube in my nose, a urinary catheter, two drains in my stomach, and one in my chest. And, of course, I had an epidural. I was transferred to the intensive care unit in the evening, where they removed the epidural (which had shifted) and switched me to a morphine pump.
A few days later, on April 10, I had a CT scan because my condition was not improving. The results were not very good, and I had to undergo emergency surgery again for internal bleeding, then again on April 13 for the same thing. Waking up was difficult and my morale was at rock bottom, but I was well supported and the photos of my daughter hanging on the wall motivated me. I had daily physical therapy sessions and every four hours I also had to do 40-minute CPAP (continuous positive airway pressure) sessions (assisted breathing mask).
So I stayed in intensive care for about a dozen days, then I was transferred to intensive care. That’s where I made the most progress, despite another procedure (under local anesthesia this time) for a puncture due to fluid buildup in my lower abdomen.
I’ll spare you the details, but I was discharged from the hospital after about three weeks. I worked hard to relearn how to walk and eat properly. Today, I can tell you that despite a tumultuous journey, I feel great! I have resumed my life and I am delighted to see my daughter grow up.
If I had any advice to give:
Don’t give up and stay positive. Set yourself goals every day.