Unaware that I was ill, I probably carried the disease for several years without even realizing it. I had no symptoms and was in pretty good shape! So this is how my life changed irrevocably…
In mid-March 2015, I came down with a terrible urinary tract infection. My doctor managed to treat it with the right medication, but he wanted to do an ultrasound to check that there was no damage to my urinary system. Being a very active and healthy person, I decided to follow his advice because I was in too much pain…
The ultrasound ultimately revealed nothing abnormal in my urinary system; everything was back to normal, at least in that regard. The problem was that the doctor who performed the ultrasound noticed suspicious white spots near my kidneys, like calcifications. Unable to identify what they were or where they were located, she thought they might be an old cyst. Probably nothing serious, but a CT scan was necessary. The next day, the scan revealed the presence of a huge cyst on the appendix called an appendicular mucocele. I had an emergency appointment with a surgeon who confirmed that the cyst needed to be removed but that it was not urgent. He tried to reassure me but took pleasure in telling me that in his long career he had never seen one so big!
I opted for surgery as soon as possible, which was scheduled for March 30, and if all went well, I would even be able to leave the hospital the next day! I stayed for five days. What was a routine operation for this experienced surgeon turned into an ordeal when he discovered multiple gelatinous masses on the peritoneum and right colon. This first operation lasted four hours, and my surgeon removed all the masses he could. The verdict came quickly: I had low-grade peritoneal pseudomyxoma. There was nothing more he could do for me. I had to be transferred to a specialized unit and undergo a “HIPEC” procedure. Everything came crashing down around me. I had never been to a hospital before, but now I would have plenty of opportunity to catch up!
Everything happened very quickly after that. I underwent a whole series of tests until June 16, the date of my operation. It lasted 13 hours, and I was lucky enough to have laparoscopic surgery. The operation went well, just as the surgeon had predicted. Even though the disease was still in its early stages, I had my right colon, omentum, and multiple parts of my peritoneum removed.
The hardest part was waking up in intensive care. No matter how much you’re warned about it, finding yourself stuck in a bed, in an unfamiliar environment, unable to move, hooked up to IVs, central lines, and other drains all over your stomach and chest, is really strange. What’s more, when you’ve never been sick and have always made your own decisions in life, it’s very difficult to find yourself suddenly completely dependent on the people around you, whether it’s for personal hygiene or even “mundane” tasks like drinking or getting up in bed… The staff were really very dedicated and wonderful, and as I live near the hospital, I was lucky that my wife was able to come and see me every day and my children at the end of the week. This really motivated me to get better and I was back in my wheelchair very quickly. Everything went well and I had no complications. Two days in intensive care, three in continuous care, and six in the ward, and I was discharged. I returned to work part-time on September 15, three months after the operation, and full-time on November 1.
I would like to offer a positive testimony for people facing this little-known disease, but without being overly utopian. Having PMP is difficult to live with and come to terms with, and there’s no point in hiding it. It’s brutal to know that you’ve been struck by a disease that affects only one person in a million! When everything is going well and you get the diagnosis, you inevitably don’t understand what’s happening. Then, you can’t tell how serious the disease is. In my case, I know that I’m doing very well and that I’m even “cured” according to the surgeons. What still troubles me is why I have to continue with follow-up MRIs every six months (initially, then annually thereafter for the rest of my life). There is a risk of recurrence, but it may never happen!
Furthermore, the psychological impact of the disease and its treatment should not be minimized. I fought to get back on my feet as quickly as possible after the operation, but I also had a relapse and even today it is still very difficult to deal with these moments. I sought the help of a psychologist who put into words the problem I encountered after the operation: post-traumatic shock. She helped me a lot to accept and come to terms with what had happened to me. I also had two meetings with the intensive care unit, who were wonderful in welcoming me and listening to my fears, which also helped me a lot. So, don’t hesitate to seek help from competent people, it’s necessary.
Apart from that, I believe that this ordeal has also brought me many positive things. The most important thing for me is that today I know how to appreciate life, quite simply. I love all those little moments, those pure moments of small joys that we don’t notice when “everything is going well.” And then you learn to take a step back and put a lot of things into perspective, both in your professional and private life. I learned what it means to delegate and trust others, and it feels so good! I’ve learned to set boundaries in my work so that it doesn’t encroach on my private life. I’ve also discovered how good it is to be with the people you love, just because it’s nice to be together!
So, yes, illness is a trial whose outcome we never know, and thank goodness for that! Ultimately, we don’t care about the outcome. What matters is the present moment, and now, if someone asks me how I see myself in ten years, I simply reply: alive and happy to be so!