For me, the story begins at the end of May 2012.
In the previous months, I had had a series of urinary tract infections, without any of the usual symptoms. My doctor prescribed an ultrasound scan to rule out any risk of kidney infection. I went for the scan without any apprehension. But everything changed when the radiologist came to see me in the room at the end of the scan. She told me that she had observed significant fluid build-up throughout my abdomen. Given the extent of it, I needed to be treated quickly. She suggested several possible explanations, including cancer… I was devastated!
I am immediately referred to the regional cancer center in my area. I undergo a series of tests, blood tests, and laparoscopy. The verdict comes in July: it is a rare disease of the peritoneum called peritoneal pseudomyxoma (low grade in my case). After consulting with experts at the RENAPE center, my surgeon explained the treatment to me: complete resection of the “gelatinous material” that had developed inside me, combined with HIPEC (performed with an open abdomen). I had the operation on July 30, 2012. The operation lasted 11 hours. Quite a few organs or parts of organs were removed, including my spleen, ovaries, and part of my peritoneum. I spent ten days in intensive care, with a nasogastric tube that I couldn’t stand during the last few days! I then spent another ten days or so in the surgery ward.
The early days were difficult because, for the first time in my life, I was completely dependent on the people around me (medical staff and loved ones). They washed me, dressed me, lifted me up… But I was in good spirits and determined, I was surrounded by people I loved, and I wanted to get back to a normal life as soon as possible. So I do everything I can to speed up my recovery: even though it’s not always easy with the IVs and drains, I get up and walk around. The hardest part is eating; I feel like they’re trying to force-feed me! I’m already thin, and I’ve lost 5 kg, or 9% of my body weight. I stayed on a residue-free diet (strict at first, then expanded) for a few weeks, then slowly resumed a near-normal diet. A month and a half after the operation, I went back to work. I was still a little tired, but getting back to my “old life” was essential for my morale. At home, I was going around in circles and starting to get depressed. By getting back into my old routine, I really feel like I’ve turned a new page.
I started exercising again six months after the operation. The checkups were normal. There were a few tiny residues near the liver, but for two years, nothing changed. I feel good, I no longer feel sick, and I’ve returned to a completely normal life.
In November 2014, I saw my surgeon again for my six-month checkup. The verdict was in: recurrence.
The small residues near the liver were growing, and pelvic effusion was visible. It was a difficult blow to take, because it had only been two years since my surgery! I thought about all the steps I would have to go through again… After reviewing my file at the specialist center, my surgeon, who was very open and approachable, suggested that I be treated there by a specialist professor and his team. The disease had spread to delicate areas, and the experts were specialized in this type of disease, which would maximize my chances of preventing a recurrence. However, my surgeon would travel there and take part in the operation.
The operation took place on January 28, 2015. The resection lasted five hours, plus an hour of HIPEC (this time with my abdomen closed). Fortunately, they did not have to touch my liver or stomach, which remained intact, but my uterus was removed, as well as part of my right colon.
The first few days in intensive care were difficult because I was alone (my loved ones were not there), I had drains everywhere, I had to cope with my “dear” nasogastric tube, and, unfortunately, the nerve in my right leg was damaged or crushed during the operation: I lost some of the motor function in my right leg.
From the weekend onwards, my spirits lifted, and my husband and loved ones took turns to support me. Five days after the operation, I was discharged from intensive care. The drains were gradually removed. I was able to get up and wash myself. The physiotherapists helped me to walk and go up and down the stairs. I quickly resumed a near-normal diet, although I was unable to swallow large quantities! Once again, I felt like a duck being force-fed before Christmas! I go home two weeks after the operation! I am amazed at the progress I have made in such a short time. But I tire quickly and need rest. Eating remains difficult, and I struggle to stabilize my weight. Unlike the first time, I regularly experience nausea or vomiting and sometimes lack appetite.
But I’m in good spirits. My loved ones say I look well. I take the time to do things… out of necessity. I continue my rehabilitation for my leg and am making slow progress. All of this requires patience… so let’s enjoy this… third life that has been given to us! In a few months, these difficult times will be behind us, and life will be beautiful again!
I would like to take this opportunity to thank everyone—the medical staff, my family, friends, colleagues, and also AMARAPE—who, during these two difficult periods, have always advised, supported, and encouraged me, strengthening the determination and optimism that I have always sought to maintain at all costs.