I hesitated for a long time before writing this testimonial, but this time I decided to do so because all the testimonials I have read have helped me to understand both the disease and the challenges that lie ahead, and above all, to feel less alone. I hope that mine will also be useful to you.
My story begins in 2014.
For several years, I had been feeling bloated, had trouble digesting, and had an increasingly swollen stomach, but I ignored all these symptoms, which, in hindsight, should have led me to seek medical advice much earlier! But we always have a “good reason” not to do so.
Finally, on the weekend of May 1, with much more severe digestive pain than usual, I finally consulted a gastroenterologist on an emergency basis. She immediately understood the urgency when she examined me, ordered an MRI, and referred me to another specialist.
The MRI results initially suggested gelatinous peritoneal disease, so I was immediately referred to a center specializing in peritoneal diseases by the first doctor I consulted.
There, I was treated very quickly with a great deal of empathy, understanding, and education (which is very important in a case like this, where you are reeling from the shock of the diagnosis: a rare disease and cancer!). A new MRI was performed at the hospital, which this time concluded that I had multicystic mesothelioma, which was confirmed.
The cysts had to be removed and a HIPEC performed.
As I was in poor health, my surgeon decided to proceed in two stages: a first operation to remove some of the cysts to allow me to regain weight and strength (performed in mid-May without complications) before the HIPEC with cytoreduction of the rest of the disease in July. During this second operation, I also lost my right colon, both ovaries, and my gallbladder. The postoperative period was quite difficult, with two major complications: a double pneumothorax (requiring two larger chest drains to be inserted to remove the fluid—which was the most painful part of my entire hospital stay) and the scar reopening on the first night (which was sutured without another trip to the operating room!). I was then transferred to intensive care for 10 days before spending another 10 days in surgery when I was feeling a little better, while my various drains and nasogastric tube were removed as my digestive system slowly began to recover.
Throughout this period, the staff were always very attentive and reassuring, even though I was very worried (that’s just my nature!!!), and I always felt well looked after by competent staff.
Another very important thing was that I had the support of my whole family, who came to see me every day, even when I was in intensive care, where they visited me every evening.
I went straight home to continue my slow recovery. In terms of food, it was a very gradual process, with small quantities, easily digestible foods, and protein supplements to make up for the initial lack of nutrition. It went pretty well, which allowed me to gradually regain weight (having had no reserves to begin with and having lost quite a bit after the operation because once the central line was removed, my veins couldn’t handle the Olimel feeding). After two weeks at home, we went on vacation to the south to see my family and, for once, to relax and enjoy the pool, as swimming in small doses was very good for regaining muscle and breath (my lungs had taken a hit during the operation!).
I was then able to return to work full-time at the end of August without any particular fatigue, so my good resolutions to come home early and work less quickly went out the window!
I probably went back a little too early, too quickly, because in September I was struck by bilateral carpal tunnel syndrome, which was resolved thanks to an injection and then physical therapy, swimming, the purchase of a vertical mouse, and several months of sleeping with a splint on each side. I don’t know what worked best, but at least I got through it without surgery!
Among the more or less directly related side effects were hair loss (following rapid weight loss, I suppose), which was resolved with lots of dietary supplements and weight gain; elevated transaminases (which persist and remain a mystery despite multiple blood tests and other analyses); and, in the fall, persistent ear pain that led me to have an ultrasound. While my resolutions to be less consumed by my work went unheeded, I am now paying close attention to my medical follow-up.
One thing led to another, and I was referred to an endocrinologist, who prescribed a new thyroid ultrasound and a fine needle aspiration biopsy. It was December by then, I had resumed all my normal activities and was beginning to forget about PTC. After the holidays, the endocrinologist called me to make an appointment to give me the results of the fine needle aspiration, which I had forgotten about. And then, another blow: the verdict came on the day of the national minute of silence for the Charlie Hebdo attack that had just taken place: papillary carcinoma. I needed surgery, but it wasn’t urgent. On the same day, I had my first follow-up MRI for the mesothelioma, which turned out to be satisfactory. Both the endocrinologist and my surgeon were reassuring. I finally had the operation in early April. It went very well, and I was off work for three weeks, including Easter! My thyroid was removed, and I had a right lymph node dissection. Now I’m on Levothyrox for life, but I don’t seem to be too sensitive to differences in dosage and am adapting quickly. The second step, given the characteristics of the removed nodules, is a course of iodine therapy (i.e., with a complete stop of Levothyrox six weeks beforehand). I coped quite well (the hardest part was during the heatwave) and only stopped working during the week of the iodine treatment. Second follow-up MRI was fine. From then on, monitoring became annual.
June 2016: new MRI satisfactory.
June 2017: second episode of mesothelioma, this time the MRI scan showed the presence of small cysts. It was a huge shock. I was in great shape, with no discomfort, and had been back to 200% of my professional, extra-professional, and sporting activities for almost two years. I really wasn’t expecting it at all. I would have to start all over again, with the risks of surgery, complications, and recovery, and it had come back!
My surgeon wanted to do another MRI in September to see how things had progressed and compare the different MRIs to make sure it was the same thing. The summer wasn’t very enjoyable, but I made the best of it and enjoyed it as much as I could. However, I had a more motivating prospect, which was a change of job at the start of the school year, something I had wanted for quite some time.
The September MRI confirmed the recurrence.
The disease is progressing very slowly. I was due to change jobs at the beginning of October, so my surgeon suggested waiting a little longer and operating at the beginning of January 2018. In the meantime, a CT scan was performed in December to see if there was anything else: nothing to report. Morale-wise, I’ve come to terms with it—I don’t really have a choice—and I’m enjoying being in good shape until the operation so I can continue to live normally. I even did the first Paris Rollers Marathon in mid-October in 2 hours and 23 minutes! I try to reassure myself by telling myself that I’m in better shape and that there is much less disease to remove.
January 15, 2018: D-day for this second HIPEC with cytoreduction, 10 hours in the operating room, 8 hours and 40 minutes of surgery.
The first few days in the intensive care unit went pretty well, and I was quickly moved to a chair. But there can be many complications, and I am losing blood very slowly: two transfusions and finally an operation on day 7 to remove the clots and blood and stop the bleeding that has been detected. I continue to lose blood very slowly; it seems to be small, diffuse bleeding. Another transfusion, and this time it holds! Little by little, I had almost no more IV fluids except for the Olimel via the central line, which had been changed sides. My digestive system slowly started working again, and on day 15, I was transferred back to the digestive surgery ward for a week while my digestive system regained “reliable” function and I was able to eat a minimum amount on my own (i.e., without Olimel) before going home. This time, I lost my appendicitis and had to regain both my breath (the diaphragmatic domes had significant adhesions to the liver and stomach) and my muscles. A month of rest was needed for everything to improve slowly.
Once again, I cannot emphasize enough how important it is to have the support of my family by my side every day, as well as the medical staff at the hospital.
Recovering for a month, the first few weeks are a little complicated, but then things gradually improve. My stomach still hurts quite a bit and remains a little swollen. I am eating small amounts of easily digestible foods again, along with a welcome protein supplement. After 15 days, I am feeling less and less tired and have started swimming again, which is doing me a lot of good in terms of stretching, relaxing, catching my breath, and rebuilding muscle.
March 5, 2018: First day back at work full-time, but for now with reasonable hours and rest when I get home.
I also plan to go to Lyon for the AGM for the 10th anniversary of the AMARAPE association, something I had considered doing in previous years but never got around to.