I had surgery for low-grade peritoneal pseudomyxoma in October 2020. I was 28 years old. And I have now been in remission for almost two years. Everything is fine.
How was it discovered? We wanted a baby. After trying for a year with no success, I made an appointment with a private gynecologist. We started infertility testing, and during the pelvic ultrasound, my gynecologist detected a mass.
After an emergency MRI and CT scan, the radiologist reassured me and told me it was a cyst on my appendix. A few weeks later, I had an appendectomy. I thought that would be the end of it, but a month later, at what I thought was a routine check-up, my surgeon told me that during the operation he had discovered a ruptured appendicular mucocele. I have mucin in my abdomen. I am told that it is a very rare disease. Gelatinous peritoneal disease. I didn’t understand. I had no symptoms. I felt fine (looking back, I had pains like stitches, which I put down to fatigue from work). I didn’t even know what the peritoneum was. And he tells me about a major operation, high-temperature chemotherapy in my stomach, an epidural for several days, an artificial anus, removing part of my colon, an oncologist, being transferred from the recovery room to the intensive care unit by ambulance. Emergency egg preservation. It’s a nightmare. My life is turned upside down.
Despite everything, the day after the diagnosis, we go on a romantic vacation, as planned. That year, we decided to go on an adventure, without booking anything, with a tent, a table, stools, and a stove. We find ourselves in the middle of nature with the bare minimum. I didn’t need anything else. It was as if fate was working in my favor. I found myself in the streets of Saint Emilion, arranging appointments for possible egg preservation. The treatment I was taking to block my menstrual cycle reminded us every day that when we returned, we would have to tell our family about the cancer.
But despite all that, I was going to have the best vacation of my life.
We return home and I am well prepared for what lies ahead. I don’t feel sick, so I continue to work, but I adjust my schedule to accommodate tons of appointments: gynecologist, fertility clinic, blood tests, dietitian, physical therapist, surgeon, nurses, stoma therapist, social worker, psychologist, oncologist, anesthesiologist, cardiologist… A real team organized around me. It’s my new social circle, and I’m getting used to waiting rooms. Mathieu can’t accompany me to all my appointments because he’s working, and then there’s COVID. Sometimes we feel awkward arriving together. I find myself telling him about all these appointments with a smile. I’m almost happy about it. At the same time, I feel that I’m being well looked after. They are all so kind. A week before my hospitalization, Mathieu and I visited the intensive care unit and met the staff. My surgeon had advised me to exercise before this major operation, so I went running. I never used to do it, but strangely enough, I managed to run 10km until the day before I went into the clinic. I quickly realized that when you want something, you can do it. It did me a world of good mentally, as did sorting through my entire house. I got rid of everything that was useless.
So, on October 13, 2020, I went into surgery very early in the morning for a HIPEC (Hyperthermic Intraperitoneal Chemotherapy), a right colectomy, and a major clean-up of my abdomen.
A stoma was also planned for three months (my intestines were diverted for better internal healing). The operation lasted eight hours, and I woke up surrounded by the SAMU team. I wasn’t in any pain, but I was impressed. I felt like I was watching a TV show like “Enquêtes d’action” or “24h aux urgences,” but no, it was real. It was me who was being transported to Brest. My first time in an ambulance. I arrived in intensive care. I immediately thought of Mathieu and my parents. Their day must have been horrible. I asked for a phone, and they were together and couldn’t believe how well I sounded. I switched to autopilot and survived for a week. My body was weak, hooked up to IVs and connected to machines. Those machines beeping day and night, the scar from my laparotomy, the oxygen in my nose, the gastric and urinary catheters, the drains in my stomach, the epidural pump in my hand to manage my own pain, and my stoma, which was emptied and changed but which I neither touched nor looked at. I was sat in a chair the day after the HIPEC and was lifted up for a few minutes each day. I retrieved my phone, my only personal item, and looked at it very little. I didn’t eat because I had neither the appetite nor the strength. Mentally, however, I was determined. I had visitors, which did me good.
The physical therapist suggested I try a recumbent bike, and I agreed. Mathieu (my partner) and I even tried a few games of UNO, with a woman who had suffered a cardiac arrest two days earlier as our roommate. She has just woken up and seems to be doing well. We are amazed.
After a week in intensive care, I spent three days in the ICU. I learned how to care for my stoma. It doesn’t hurt. When I saw it for the first time, I was fascinated by my body and by medicine, and I wondered how this system was possible. I had already met with the stoma therapist a few weeks earlier and received a lesson. He took the drama out of the situation and was wonderful. I went home feeling calm because I had been told that the disease had been completely removed and that there was very little chance of recurrence. But most importantly, I still have my ovaries and uterus. My primary care physician and home nurses are taking over. I know they are available, and that reassures me. I am in pretty good shape, positive, I walk a little every day, and I am completely independent with my stoma. I have taken good care of it. It saves my life. It is a little noisy, but we coexist. We spend the holidays together. I ended up loving it. You get used to everything in the end.
In mid-January, I went back to the operating room for the famous reconnection. I stayed in the clinic for two days. I was eager to go home. The dressing changes were difficult and time-consuming, but my doctor and the nurses were as lovely as ever. My digestion and bowel movements were also very complicated. I wanted to eat, but my body rejected all my meals. I thought the worst was behind me. But it wasn’t. I lost 13 kg. I was very tired and couldn’t see the light at the end of the tunnel.
But you have to be patient because each day is a step towards recovery. It took me six long months after the HIPEC for my body to recover. I consider myself lucky. It was quick but intense. I went back to work part-time for six months before going full-time, and that was really important for my recovery.
Today, physically, I feel better in my body, 13 kg lighter and with so much energy. My appetite is back to normal. I’m a foodie again. My digestion is slightly different, faster, but I’ve learned to know my body and, above all, to listen to it.
In my head, I no longer feel like I’m completely the same person. You come out of it changed, grown. I have a much better understanding of what a day is. Of what the present moment means. Of simple pleasures. Of what a problem really is. Of what to dwell on and what not to dwell on. I also know that when people look at me, they can’t imagine that I’ve been through all these stages. It has opened my eyes and made me more open to others. Ultimately, I try to be less harsh and not judge people. You never really know what they’re going through; we only show what we want to show.
Without the illness, I’m convinced I wouldn’t have developed such a strong mind and so much self-confidence. I never would have believed I could endure everything I had to face. It just happened to me, I had no choice. I did the best I could and I’m proud of that. The doctors often tell me
that I’m incredibly lucky that the disease was detected at this stage, because it’s slow and silent. And I realized that very quickly. So I try to turn everything that happens to me into something positive.
The moments of sadness never last long.
Our baby project is still underway.
We were informed of the risks of HIPEC, and egg preservation was not possible in my case because it was too risky to reintroduce the disease later. Everything happened so fast, we didn’t think about the future, but we accepted and understood the situation right away. I already knew at that point that it was going to be another battle. HIPEC had done some damage. Six months later, I was offered another blood test to measure my AMH levels, but it took me a year to feel ready to undergo the tests and entrust my body to the doctors. So we did another infertility assessment. My ovarian reserve is low and one of my fallopian tubes is damaged, or rather, I still have my ovaries and I have one fallopian tube that is permeable.
Today, pregnancy is still possible, so we are not giving up. I am lucky to have a very professional gynecologist who is attentive, involved, and knows my history very well since it all started with her (which is reassuring for me). We are going to try our first IVF in the next few weeks, I hope. I still find it hard to believe that we are at this point today. I see it as an opportunity; being proactive is all that matters. Ultimately, it was this desire to have a child that saved my life, so I’m curious to see how my body will react to the treatments and what happens next.
Mathieu and I are taking life as it comes, without pressure, closer than ever, enjoying every moment to the fullest because we know all too well that our world could fall apart. My scars remind us every day of this period in our lives. I got a tattoo, as if I had an almost vital need to write the word LIFE on my body. I don’t remember my body from before, but I love this one. Every check-up is a trial and reminds us that the disease is still hanging over our heads, but life goes on despite everything.
If you are reading this, you may have just been diagnosed and feel like your world has fallen apart. My advice is to take it one step at a time. Day after day. Let the medical teams guide you and trust them. They will be your best allies for the weeks, months, and even years to come. Trust yourself too; we don’t really know our limits. It’s going to be hard, but tell yourself it’s temporary.
When faced with illness, we reveal ourselves, we surprise ourselves, we impress ourselves with our own strength. Get some fresh air and keep your mind busy. Reading and walking by the sea whenever I could helped me. Lean on your loved ones, above all, let them help you. My family, especially my partner, my mom, my brother, my best friends, and my godson, were my pillars of strength, my crutches. They were incredible.
I’m sending you lots of positive vibes for the fight of your life. It’s worth it. Life is beautiful.