I was diagnosed with peritoneal mesothelioma in March 2021 after the discovery of ascites, which led to an endoscopic examination of the peritoneum. This was a particularly unsettling time for me as I had no specific symptoms. What’s more, the diagnosis was given to me by doctors who were not specialists in this type of rare cancer, and the information provided about the prognosis and possible treatments remained vague.
As my son and daughter-in-law are doctors, I was fortunate to be quickly referred to the National Network for the Management of Rare Peritoneal Tumors (RENAPE) and to the AMARAPE association. All the information about my disease and its treatment was clearly explained to me during my first consultation. It was difficult but essential to hear. There was also a message of hope, as new surgical techniques and advances in intraperitoneal chemotherapy treatments now make it possible to cure what was previously incurable.
After seeing the professor, I immediately met with nurses and a physical therapist from the department.
Their psychological support, availability, and enthusiasm were very important to me. They explained the exercises I needed to do before the surgery scheduled a month later. I learned how to use a spirometer to improve my lung capacity and the diffusion of inhaled air. This may seem surprising in the context of digestive surgery, but it makes sense to prepare for it because abdominal breathing and chest expansion are temporarily reduced in the postoperative period. In addition, I had to prepare my muscles so that I could sit in a chair and walk quickly after the operation. Finally, I was given information about preoperative nutritional support to improve immune function. I understood that my work before the surgery would reduce the risk of complications and speed up my recovery. Doing these prehabilitation exercises was my way of participating in the fight against the disease, and no one could do it for me. I don’t want to hide the ordeal I went through in the days and even weeks following the operation. It’s important to be aware that drains and IVs are present after surgery. They prevent us from moving around without assistance, but this only lasts a few days. I also had to wait two months before I could eat again without needing to take anti-nausea medication.
Almost a year after my operation, I now live a “normal” life. I remain, and will certainly continue to remain, more fragile in terms of my diet. I sometimes feel tired more quickly than before, but that’s nothing compared to how much happier I am to be able to enjoy wonderful moments with my children, grandchildren, and friends.
I hope that my story will be of support to you if you have peritoneal cancer or are close to someone who does. I also wanted to express my gratitude to the volunteers at the AMARAPE association, who provide so much advice and comfort to patients, as well as financial support for medical research. Finally, I would like to express my gratitude to the professor, his entire team, and, more generally, all the departments participating in the RENAPE network.