YOUR STORY IN A NUTSHELL
I am 36 years old, I live in Toulouse. I am originally from Lyon. I moved around a lot, especially in Paris where I lived for 8 years. It’s a beautiful but very stressful city! In 2003, I was diagnosed with osteonecrosis of both femoral heads (destruction of cartilage in the hips). I could no longer walk, the slightest movement was torture. Today, I have 2 hip prostheses. In 2004, I started working on myself, I became interested in personal and spiritual development. It helped me a lot to get through my ordeal.
We all have a weakness, it's a real strength when we accept it and tame it.
It allowed me to have a different awareness of myself, of others and of the world. It also allowed me to open my heart. And since then, I have never stopped working on myself. We learn every day :)
I try to raise awareness and talk about it on my account 'Fragile and . So what?' on Facebook!
YOUR MEDICAL CAREER:
I have had a genetic, lysosomal disease since I was very young which notably led to this osteonecrosis. I was also diagnosed with my first melanoma in 2010. A dermatologist removed a malignant mole from me, it was melanoma.
I should have had my skin checked in the following years but I did not consult a doctor. I was in denial, I did not accept it. And in 2018, he did it again. I was extremely tired, I had lots of small lumps all over my body. I was moving at that time and I blamed my fatigue on my move and my Lysosomal Illness.
When I had tests at Beaujon Hospital, the reference center for lysosomal storage diseases located in the suburbs of Paris, they didn't immediately find out what was wrong with me. They then transferred me to the Pitié-Salpêtrière, in Paris, in the service of endocrinology, metabolic diseases and internal medicine. I had a whole battery of exams. I had a lot of trouble breathing, I was on oxygen. I was then diagnosed with stage IV melanoma.
My melanoma, which I had not had checked, had infiltrated under my skin and into my organs, forming nodules. I had them everywhere: on my body but also in my liver, my spleen and my lungs. They then transferred me to Gustave Roussy, in Villejuif, for my care. I learned later that it was the 1st European center for the fight against cancer.
Initially, I was on chemo for more than 5 months. Seeing my doctor for the first time, the first question I asked him was if I was going to lose my hair. It may sound silly but it meant a lot to me. He answered me in the negative. It reassured me. The second doctor I saw was much more pessimistic. She explained to me that melanoma was serious, it wasn't benign. I was seized with enormous anguish, I was afraid of dying. I was only 34 years old. I was taking anxiolytics to calm me down.
I was hospitalized for 3 weeks at Gustave Roussy, I had about twenty tablets a day to swallow. I also did physio, because I was bedridden for about ten days. I had already had hip surgery and done many hours of rehabilitation so I knew that walking again took a lot of dedication.
Then in 2019, my melanoma recurred, so I was treated with immunotherapy (intravenous injection, every 3 weeks)
I am now in remission, I have known it since December 9, 2020 and I am living again after more than 2 years of fighting the disease. I am followed at the Oncopole of Toulouse. My treatment should stop in April 2021! I will then have a follow-up every 3 months for at least 3 years.
You really shouldn't hesitate to have your skin checked, even if you don't think it's necessary! Because if not caught in time, melanoma can become very serious!
YOUR BIGGEST CHALLENGE?
I started it more than 2 years ago. It's that my book is published! I tell my story. This book was a lifesaver for me. But through my story, I also want to help others, to convey to them that in life you always have to believe in it, never give up.
I try to develop that daring to be oneself as well as testifying to one's fragility is a challenge in our society in search of performance and perfection where we put aside the one who disturbs, who does not not included in the standard. I really want to show that fragile people have unsuspected resources!
I think our weaknesses can turn into strengths.
WITH YOUR LOVED ONES HOW IS IT GOING ?
They support me on a daily basis. When I learned that I had melanoma, I received a lot of help and support. They came to see me at the hospital, accompanied me to consultations...
It is very important not to remain isolated in the face of illness.
YOUR RELATIONSHIP WITH THE SUN?
I've never really been exposed to the sun. I've always been careful with my skin because it's very pale and I get sunburned easily if I'm not careful. But today I have to be much more careful.
HOW DO YOU PROTECT YOURSELF?
I put on cream, I stay under an umbrella when I go to the sea. I take care of my skin.
“I am not what happened to me, I am what I choose to become” by Carl Gustav Jung.
I believe that behind every hardship there is a hidden gift. I think you can turn your suffering into something positive. My melanoma allowed me to reconcile with my body.
I would say that today I am much softer with myself, more flexible, even though I have always been a perfectionist, I have become much more tolerant with myself.
I realized that perfectionism prevents spontaneity, it's something that holds you back.
ADVICE FROM GRAND-MERA ?
Live in the moment and don't project yourself into the future. Because it is our projections that create our fears. Besides, writing has helped me a lot to live in the present moment, to connect to my heart. It was a driving force for me.
It allowed me to discover myself, to accept myself as I am and to put words to my ailments.
Feel free to follow Delphine on her accountFragile and . So what? on Facebook!.