When I went to see my doctor in September 2012 for what I thought was a swollen lymph node, I had no idea that it was the beginning of a long journey, one that is still ongoing. I was in great shape, a little tired after a busy summer season, but that was all. I wasn’t in any pain, I had no worrying symptoms, nothing.
My doctor said I simply had a hernia in my groin, but when he checked my lymph nodes, he noticed they were a little swollen. “Let’s do a scan to see where it’s coming from,” he said. I delayed having the scan because it didn’t seem very worrying.
At the beginning of October, my doctor gave me the results of the scan: a lot of ascites in my stomach, so apparently a rare disease of the peritoneum. He quickly arranged an appointment with a professor.
At that point, I searched for information on the Internet (with the advantage that I can read French, English, Dutch, and German). I found basic information and explanations about the different forms of peritoneal cancer (mainly on the AMARAPE website and on a few American websites that were much more informative than the French ones). I then understood that my prospects depended greatly on the specific form of cancer, which was still unknown at that point, its stage of development in my body, and whether or not it had affected other organs.
My prospects then ranged from “incurable and perhaps a few years to live” to “complete recovery entirely possible.”
Everything changed for me in an instant. I don’t want to leave this world. I have children I want to see grow up. I have invested a lot of myself in several areas, and several initiatives depend largely on my commitment.
I want to live for at least another 20 years! (…)
I am also looking for information on alternative approaches to fighting cancer. I am convinced that food can play an important role. But what I find on this subject is often contradictory (for example: one person recommends not eating soy, another strongly advises it; one recommends certain products that others advise against). I also receive a lot of “good advice” from those around me. But I get lost in all this advice! So I follow what seems “reasonable” or well-argued to me. (…) I don’t want to fight this disease all the time, as several people around me advise me to do. Yes, I’m fighting to stay alive, but I want to use my energy sparingly to maintain a good quality of life and be in the best possible shape for what lies ahead. (…)
At this point, no one knows exactly what my illness is. A laparoscopy seems necessary and is performed shortly afterwards, followed by a PET scan and another laparoscopy. (…) The doctors do not all agree. The surgeon decides on surgery with intraperitoneal chemotherapy. So I will have surgery about 11 weeks after my illness was detected but not diagnosed. For me, it went very quickly because I had a series of medical appointments and waits between two tests. (..)
I was admitted to the hospital on Sunday, December 16, still not knowing what disease I had. I asked the intern, who confirmed that it was indeed pseudomyxoma. I cried because my chances of survival were much higher than with other forms of peritoneal cancer.
The next day at 7:30 a.m., I went into surgery. (…). The day after the operation, I learn that the surgeon operated on me for 11 hours…. I am in my hospital bed, completely exhausted, short of breath, full of tubes coming out of my body, permanently connected to machines. I am unable to move. I can’t think of anything. I survive hour by hour. (…)
I am hallucinating from the anesthesia and pain medication. I also realize that I have a stoma… The surgeon comes to see me and explains that he has removed a lot of damaged tissue, my appendix, two pieces of intestine, my spleen, and my gallbladder. Later, I also learn that the cancer in my appendix was low-grade, but that the cancer in my peritoneum has turned into high-grade cancer. (…)
My intestines are not functioning properly and I have to stay in the hospital. I talk to the hospital psychologist about all my uncertainties, the questions I have, and the pain associated with this bad experience of discovering cancer followed by this operation. It gives me an opportunity to talk frankly about everything that is worrying me. (…) After 43 days, I am able to go home, very weak but confident that the operation has had the desired effect of getting rid of the cancer. (…)
I have my first follow-up scan in June 2013. The surgeon sees ascites behind my stomach and I make an appointment for a second follow-up visit in December 2013.
In the meantime, I continued to recover (slowly!) and resumed some of the activities I had been very involved in before. I was convinced that I had gotten rid of the cancer and left very little room in my mind for other scenarios.
In December, the surgeon is clear: the cancer has not been eradicated and is manifesting itself as a large patch of ascites behind my stomach and another below my liver. He also sees a third patch in my chest… “We have to stack the odds in our favor,” he said. He planned chemotherapy, followed by another major operation and then more chemotherapy (the “sandwich” protocol). (…)
After six chemotherapy treatments, I am so weak that I have trouble sitting for long periods of time, walking more than a hundred meters, and above all, standing for more than 15 minutes. My life has changed profoundly. I am only able to work a little on my computer and make a few phone calls every other week, resting several times a day… For someone who was used to working seven days a week for ten hours a day, it’s a real challenge to bow to the obvious weakness of my body. But I want to get through this!
The surgeon is proposing a new operation with a HIPEC, but he can’t say how long it will take, because it all depends on what he finds in my body when he operates. He sets the date in his schedule: May 26, 2014. (…)
Until then, I have several weeks to regain some of my strength and to hand over my associative and political responsibilities to other people… because I know I won’t be able to do anything for several months and I don’t know what I want and/or can do after the new operation, especially if my prospects are not good. (…)
Everything is very uncertain again and it is highly likely that this uncertainty will not be resolved with the operation.
For now, for me, that’s where it ends. Afterwards, I’ll see how I come out of this new major operation and maybe, just maybe… I’ll know a little more about my prospects.
[This testimony ends on April 14, but I hope to write several more pages with positive messages after my operation.]