I’ll start on a positive note: I had surgery (HIPEC) a little less than six months ago and am doing very well today.
It is difficult to discover that you have a rare peritoneal disease and then undergo major surgery combined with intraperitoneal chemotherapy, but you eventually return to a “normal” and, above all, happy life. I think it’s important to emphasize this, because the stories we tell when we encounter these diseases focus on the discovery of the disease and its treatment, which are difficult experiences to go through. But the outcome can really be wonderful. Today I feel good, I’m in good shape, I can live as I did before, and I’m even happier to be able to enjoy life than I was before this ordeal.
In August 2015, I began to experience discomfort in my abdomen, sometimes accompanied by pain. At the same time, I was losing weight even though I had a very good appetite.
After a few weeks, I mentioned it to my doctor, and we tried to find out what was wrong, without success (ultrasound, treatment for bloating, digestive problems, etc.). I ended up consulting a gastroenterologist, who performed a colonoscopy and an endoscopy, which also revealed nothing. By the end of these tests, we had been trying to find the cause of my discomfort and pain for 10 months. It was finally during an ultrasound scan performed in early July 2016 (11 months after the first symptoms of the disease) that we discovered I had a large amount of ascites in my abdomen. This finding was confirmed by a CT scan, which revealed nothing more than this abundance of ascites (no visible masses), and a blood test showed that I had elevated tumor markers (CA 125 in particular, but also CA 19-9). As the CT scan did not allow the disease affecting me to be determined, I was referred to a gynecological oncologist who performed a laparoscopy at the end of July 2016. He discovered that I had a disease of the peritoneum and made an appointment for me with a surgeon specializing in the peritoneum who had been performing HIPECs for a long time (in a center specializing in cancer treatment).
I met with this surgeon a week later, on August 5, 2016, and he was able to identify my disease at a glance from the scan: it was peritoneal pseudomyxoma. The results of the samples taken during the laparoscopy indicated that this pseudomyxoma was low grade (a few high-grade areas were found in the samples taken during the HIPEC). The surgeon was reassuring: he would be able to cure me, but it would not be easy.
According to the scan, I had had this disease for a long time, and although it was not very aggressive, it had had time to spread throughout the peritoneum. This means that he will have to perform major surgery. He then explains what HIPEC involves (which the gynecologist had already explained to me a little): the surgical procedure will be immediately followed by intraperitoneal chemotherapy to kill any cells that the surgeon has not been able to remove because they are invisible to the naked eye. A nurse then explained what to expect after the operation: extreme fatigue, low morale, etc. Another nurse explained what a stoma is, as there was a 50% chance that I would need one.
The operation was scheduled for September 26, 2016. I decided to prepare myself as best I could for the operation.
Like many who go through this (and perhaps those who will read this testimony and are currently experiencing this situation), after being stunned by the news, I decided to be combative and not give in to despair (it’s not easy, but it’s the only way to move forward… I was only 36 years old and had a 20-month-old daughter at the time, so I had to stay strong. I am also lucky to be a naturally optimistic and determined person, which obviously helped me a lot). I sought the help of a female doctor specializing in cancer and nutrition to gain weight before the operation; I had a few acupuncture sessions; I saw a psychologist to help me come to terms with everything that was happening to me and to prepare for the operation… And I am fortunate to have a wonderful support network: my partner, family, and friends are all there for me, which is a huge help in getting through this ordeal. If any readers of this testimony are close to someone with a rare peritoneal disease, I would say that you are a tremendous help to that person and that by supporting them, reassuring them, and showing them that you are there for them, you are giving them a great deal. For my part, I felt supported by those around me, and nothing could have helped me more.
I arrived in good shape on September 25 at the institute where I was to have my operation, happy to finally be able to receive treatment.
The operation lasted 11 hours… As the disease had spread significantly (a score of 29 on a scale of 39 measuring the extent of the disease), the surgeons had their work cut out for them: resection of several layers of peritoneum, the spleen, ovaries and fallopian tubes, the omentum, a piece of the colon… and hours of work on the stomach to save it. However, I avoided a stoma, which was good news.
The first week after the operation (in intensive care) was very difficult. I had prepared myself for it, but the reality was hard to bear. The epidural meant I didn’t feel any pain in my stomach, but I understood better what the surgeon had meant when he told me that after the operation I would feel like I’d been “run over by a bulldozer.” I did indeed feel like I’d been beaten up for hours.
I couldn’t move, I felt broken, and on top of that there were real discomforts: difficulty breathing (the operation is quite hard on the lungs, whose alveoli close up, and the tight abdominal belt doesn’t really help, but it is obviously essential to prevent the abdomen from bursting open), very frequent racing heartbeat, neurological effects of chemotherapy (hands and feet completely cramped, impossible to move), enormous hot flashes (I sweat so much that my bed sheets have to be changed, which is probably due to the removal of my ovaries), occasional nausea due to the nasogastric tube… And enormous fatigue.
Washing myself in bed is a real effort: just trying to turn slightly on my side so that the nurses can wash my back is a huge effort (especially as there are drains on the sides of my abdomen and chest).
A physical therapist comes to see me every day to help me do some breathing exercises to prevent damage to my lungs. These exercises are short, but they seem so difficult and endless to me.
Several times a day (three times, I think, for a set period of time), I have to wear a mask to breathe; it sends air at very high speed (it is used to reopen the alveoli), so I am unable to breathe with it on. A solution will be found to remedy this: there is a machine that achieves the same goal but is less effective. This also involves wearing a mask, but the air coming out of it is much less intense than that of the first mask (whose name I can’t remember). Since this machine is less effective, I have to wear the mask for longer during the day to achieve the same effect.
After that, I have to wear another mask for aerosols.
A few days after the operation, I have a blood transfusion following hypovolemia (drop in blood pressure and increased heart rate). My epidural is removed and I am now relieved by morphine. I feel the first abdominal pains.
At the same time, they start to sit me up on the edge of the bed. What an effort! Then in a chair. Again, the first time was difficult, not only because the position was very uncomfortable, but also because I felt too tired to sit up. As the days went by, I eventually got used to it and was able to sit up better.
After a week, I was discharged from intensive care. The second week was marked by progress, although I still felt very unwell. I was able to sit up more often and started walking. But I feel nauseous very often (a side effect of the chemo…). I’m not eating yet, but I often have the urge to vomit. Anti-nausea medication sometimes helps for a few hours. I suffer from abdominal pain that cannot always be relieved, especially when I stop taking morphine (which is essential for restoring bowel function).
I still have huge hot flashes and recurring insomnia, probably due to a state of nervousness that nothing can calm, and low morale (apparently very common in those undergoing HIPEC).
At the beginning of the third week, my condition improved quite suddenly and permanently: the nausea and pain were gone, and I felt fitter and more alert. From that point on, my condition improved in every way. I gradually started eating again (very small amounts at first, and half rations after a few days). I was able to go home at the end of the third week of hospitalization. Even though I was still very fragile, I recovered well once I was home. My spirits lifted and I made physical progress. I sought help again from the doctor specializing in nutrition and cancer (particularly to regain weight), the psychologist, and the acupuncturist for a few weeks.
Two months after the operation, I start to feel really well, even though I still need to take naps and rest at certain times of the day. I see a physical therapist to massage my scar and reduce adhesions. Four months after the operation, I feel like I did before, except that I haven’t gone back to work, which obviously helps me feel fit.
I am gradually resuming my sporting activities. And I haven’t had any abdominal pain since I came home.
I have emphasized the particularly difficult aspects of the post-operative period in this account so that those who are preparing for it know what to expect. It’s a really difficult ordeal, but to help make it easier to accept, I would add that it doesn’t last that long (two weeks for me), which seems endless at the time but short in hindsight; the progress you make afterwards helps you get through it and gradually forget those hard times.
What greatly helped to lessen the hardship of this ordeal was having a lot of support, both during my hospital stay and afterwards, once I was back home. But also the incredible work done by thesurgeons and other doctors, nurses, and nursing assistants: I am referring not only to their “technical” work but also to their ability to support, relieve, comfort, and reassure patients. I don’t know how to thank all the staff who did everything they could to make this ordeal a little easier.