Marguerite- 36 years- 2 Méningiomes- 10 years of Androcur and Lotéran

« J’ai promis à Emmanuelle depuis février dernier de raconter mon parcours, mais c’est si difficile de revenir sur tous ces évènements qui se sont enchainés, sans pleurer ou être déprimée.
Je dois bien ça à Emmanuelle, qui a toujours été là, et c’est vrai que mon histoire est à la fois pas banale, et à la fois représentative de ce que beaucoup ont vécu, et si je peux aider, alors allons-y. Mais Emmanuelle, c’est vraiment pour vous, parce que nous n’avons pas que la tumeur en commun (c’est vous qui le dites !) mais aussi notre amour de notre pays, la Normandie, et un raccourcissement de nos prénoms dans l’enfance (elle Manou, et moi Margot).

J’ai pris ces foutus traitements pour de l’endométriose, Androcur, et Lutéran à coup sûr, et d’autres peut-être aussi, je ne sais pas. Je n’ai pas d’enfants, et comme je vivais avec une femme, je n’avais pas besoin de méthode contraceptive. Mais je ne le disais pas aux médecins, et quand les gynécologues me disaient «ca vous sert aussi de contraception », je ne répondais rien. Ma compagne a voulu partir au Japon, pour son travail, en 2014, et je l’ai suivie. Elle connaissait la langue, pas moi, et ça n’a pas été simple. On croit parfois que l’amour peut tout faire accepter, passons. Je continuais à prendre mes traitements là-bas Je n’avais plus mes règles, et donc beaucoup moins de douleurs. Ca a duré 10 ans ces traitements à peu prés

I started to become irritable, often with my headache, I put it that I would integrate myself quite badly, and that my friend found that I did not make enough effort to speak Japanese properly. I was trying, but I couldn't do it. In fact, I sank without realizing it, I always found a rational explanation for what was going on. And then I dropped objects, and there my partner has arranged so that I pass an imagery of the brain. It fell just before I returned to France to find my parents, as often in summer.

I ironed an MRI in France, I had 2 meningiomas, I looked for "meningiomas" on Facebook and came across the association. My mother had already found a neurosurgeon for me, and everything was chained quickly, too fast. I had had the information by the association that the meningiomas could stop growing with the cessation of treatment, but the neurosurgeon seen did not believe it, and my mother was afraid and wanted me to operate quickly before having more problems. As I would have a lot of bad things to say about this neurosurgeon, I will not say his name or the hospital. I didn't have Emmanuelle's chance, that's for sure.

Et moi voilà partie dans un engrenage infernal : opération, et tout ce qui va avec.
Sans compter que j’ai HORREUR des hôpitaux ! Sportive, non fumeuse, 36 ans, ne buvant jamais d’alcool, je faisais tout pour retarder un problème de santé possible, et pourtant j’ai été mise par terre. J’ai cru que j’allais mourir. C’est terrifiant. Être mis face à ce qu’on croit être sa fin, ça change la perception de tout. Je n’arrêtais pas de prier alors que je ne suis pas croyante, quelle ironie. On en fait pas que des choses logiques dans la vie.

It is chaos and complete uncertainty. It's creepy all these things in the head. I was a zombie, I was 90 years old, and people aged 90 are more fit than me! I continued to let go of objects, to have tremors and ants everywhere, to no longer be able to concentrate for months. Ah yes, and then stop in the middle of the sentences knowing more what I was going to say. And these swells at night. And tired all the time, so tired. Start having a less confused brain at noon when you got up at 9 a.m. Take a nap, so as not to collapse in the evening at 8 p.m. And I always wake up at least 2 times a night.

I was in a body that I did not know, that I had to learn to know. A brain that does not work is the worst that can happen. So we eat, we wash, we sleep, that's it. In fact, we die and we have to relive with the new person we have become. But yes, I died, and no one realizes it! Ah yes, my partner realizes it, and I know that between us, it's over. What would I be without my parents, especially my mother.

I regret the choices made before, but I can't change them anymore. I regret that gynecologists are not asking more questions when they initiate such kind. There were times when I would have preferred to die than to experience this.

What I read in the testimonies is that these treatments that we have taken are making a lot of weight, and losing a lot of self -esteem. They do a undermining work, slyly destroy, in silence, for months, years, our most beautiful years.

I thank Emmanuelle for having supported me, in addition to my mother of course. You can't get out of this alone. Brain tumors are little known, taboo, but you have to talk about it. For us, it is too late, for other women, there is still hope that the meningiomas do not go through them. These tumors can drive crazy.

For the moment, I don't see much positive for all of this, and that's why I didn't want to testify. Emmanuelle told me that it was going to come back, it was only a year that I was operated on, and in addition I must live with the fact that I may have been wrongly operated, like the second meningioma, certainly smaller, has decreased since the treatment. In addition to having not had the information of the possible meningiomas with these treatments, the neurosurgeon did not give this information either. I was unlucky.

Le seul positif, c’est que ne je pensais pas être capable de supporter tout ça, de m’en sortir.
Les autorités de santé ne nous protègent pas vraiment, alors il faut compter sur tout le monde de combattif pour alerter vos filles, vos cousines vos amies, vos petite amies, vos grandes amies, celle que vous ne connaissez pas mais qui pourrait être votre meilleure amie.

I told Emmanuelle to put in image of this testimony the painting made to him by the Norman artist Vanluc, because I don't want us to see my current face. As I have hair length, it can work!

I am happy that Emmanuelle is not in revenge or in receiving only a financial compensation, as is the case of other victims associations, which I will not name either, any more than the neurosurgeon.

Thank you to her, and thank you to all those who bring this association to life, by giving time or by joining. Above all, we are an important weight! »»

D’autres témoignages ici : https://amavea.org/tag/temoignage/

Le site de l’artiste Van Luc : http://vanluc.fr/

Marguerite- 36 years- 2 Méningiomes- 10 years of Androcur and Lotéran