When she was 21, her doctors discovered that Romane suffered from angiosarcoma, a very rare tumor. This period of her life was difficult for her, but while specialists gave her very little time to live, she overcame the disease.
Romane is 25 years old. A birthday that she celebrated in the house that she and her partner are renovating. However, this project could never have seen the light of day. Three years ago, the young woman was discovered to have terminal angiosarcoma, a “very rare malignant tumor of vascular origin”, indicates Inserm.
2020 was a rather strange year for Romane. In June, the young woman obtained her social worker diploma, signed a permanent contract and slowly entered working life. But some time later, in October, she began to complain of stomach aches. “Nothing very serious. Having a rather nervous and hyper personality, I told myself that it must be ulcers, and that I simply had to calm down,” she remembers. She continues to go about her business normally, as if nothing had happened, but as the weeks go by, she feels that she no longer has the same energy. “I had back and stomach pains that were very difficult to describe,” she continues.
It was the first time I was so far away from my family for the holidays. I cried so hard that I disturbed the nurses on duty.
Ailments that will bring him, for the first time in his life, to the emergency room. The doctors who examined him saw nothing abnormal and prescribed medication to alleviate his cramps. Romane is reassured, she tells herself that the pain will pass, and returns home. But it’s quite the opposite. “I still remember it very well, it was December 23. I had to go to work, but I couldn’t get out of bed. I was exhausted and very angry. I blamed myself too, because I had to work,” she explains. “But my mother gave me no choice and took me to a second hospital.”
Christmas at the hospital
On the medical images, the doctors again did not detect anything abnormal, but still decided to keep the young woman under observation due to anemia. During his hospitalization, the pain did not dissipate. “I spent my time in the fetal position, it was the only one that gave me relief,” she explains.
We are then in the middle of a pandemic. She will spend the end of year holidays alone in the hospital, surrounded by other patients, nurses and doctors. We have known better. “It was the first time I was so far away from my family for the holidays. I cried so hard that I disturbed the nurses on duty,” says Romane, who naturally does not have good memories of her time in the medical establishment. The conditions of hospitalization do not help his misfortune. In his room, no TV, no WIFI either. “I wasn’t even allowed a book or any other occupation. They were afraid that I would infect others,” she adds.
On Christmas Day, Romane receives a visit from a doctor who gives her good news: she seems to be doing better. He nevertheless appears to be quite critical, even judgmental. First, by telling her that she must make an effort to get through her hospitalization better. Then, after analyzing her file and noting that she had already gone to another hospital for the same symptoms, pointing out to her that her department does not practice “medical shopping”, and that he other things to do on a public holiday than go see her when she feels bad. “Once again I started to cry. Very strong. I felt helpless, misunderstood and abandoned,” regrets the young woman.
My family was very worried. She tried to change my mind, but I refused to go back to the hospital.
Unable to bear this situation any longer, Romane decides to leave the hospital the next day. Her partner waits for her in the parking lot and she returns home in time for her mother’s birthday. Except that what she doesn’t tell her loved ones is that she signed a release to leave this place that caused her so much pain. It was bad for him. His condition is deteriorating day by day. The fetal position near the radiator is the only one capable of relieving it. “Staying up for more than two minutes had become mission impossible,” comments Romane. “My family was very worried. She tried to change my mind, but I refused to change my decision by returning to the hospital.”
Forced return
A few days later, his doctors called him to have an emergency MRI. The young woman does not want to go back, but her father manages to convince her. He promises her that she won’t stay in the hospital long, and then he will pay her a Quick. “Deal!” Romane is then convinced that it is nothing serious, but three days later, her doctor contacts her parents and asks them to take her to the university hospital. There’s something wrong.
Blood tests, MRIs, ultrasounds, biopsies, doctors parade through her hospital room without her being kept informed of what is happening. For a month, Romane was plunged into the unknown. Her mother takes time off work to be with her daughter every day at the hospital and bring her meals cooked by her. Because of work, her partner and her father come every other day. “It’s crazy, our whole life revolves around me…”
After a month, Romane was told that her liver was necrotic. His pituitary gland (a gland located at the base of the brain, it controls the function of most of the other endocrine glands, editor’s note) no longer functions, his lungs are affected, and as a result, his heart takes a hit. “We didn’t understand what I had. Was it an orphan disease or genetic? The problem is that my mom is an adopted child. We had no information about her biological family,” explains the young woman. The days pass, and other symptoms appear. Her skin gradually turns yellow and she visibly loses weight. Romane begins to wonder if she is losing her mind.
A word about ailments
It was not until February 26, 2021 that the diagnosis was made. After a round trip to Brussels then Paris, his analyzes came back and announced a very rare angiosarcoma which first affected his liver, then his pituitary gland. “They explained to me that it was possible to try chemotherapy. But I was also warned that it was only to extend my life expectancy by a few weeks, or even a few months, at most,” she says. “The good news was that I could come home for the weekend. We were so happy that I could leave the hospital that my parents called our doctor to make sure we had it right.”
My boyfriend and I went through some very complicated times after that.
After a “wonderful” first weekend surrounded by the people she loves, Romane returned to the hospital the following Monday. She has an appointment with an oncologist, to whom she finds the strength and courage to ask if she has a chance of getting through this. “To which he replied: ‘We’ll try to fight.’”
Fight and heal
Today, Romane is doing much better. After rehabilitation three times a week and talk of a liver transplant, she gradually began to feel better. To the point that she no longer needed to undergo treatment. The scans of her liver and blood tests are still not good, but physically, she feels much better. She returned to work as if nothing had happened, which surprised her doctors. Doctors who don’t really understand what she had, between the end of 2020 and the beginning of 2021. They talk about a long Covid, but without certainties or clear explanations.
“The hardest thing right now is accepting my weight. I’m a little embarrassed to say this, because I’m lucky enough to be fit again, but I lost a lot of weight during my illness, and today I gained a few pounds back. It’s not easy every day…” explains Romane. “Relationally, there were ups and downs as well. My boyfriend and I went through some very complicated times. Then, we bought a house that we started renovating in March. This great project united us and gave us other desires.”
Romane doesn’t know what tomorrow will bring, but she takes every moment of this chance that has been given to her to overcome an illness that could have been fatal to her.
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