On November 17, 2023, I entered the ENT's office for a simple hearing examination.
I couldn't hear anything out of my right ear.
The ENT doctor drew me a little diagram.
Two hypotheses:
– a cork.
– or a mass that compresses.
MRI scheduled for December 23, 2023 at 11 a.m., the verdict is in.
A tumor. Then they explain to me that it affects a sensitive area.
Which will almost certainly require surgery.
The risk could be gait disturbances.
Two days before Christmas, time stood still.
I join my husband in the car.
He asks me, "So?"
I replied, "I have a brain tumor."
He starts to cry. Me too.
Silence throughout the entire journey.
And already in my head:
How do we tell our children?
How to have Christmas dinner as if nothing had happened?
When I got home, I locked myself in my office.
I turned on my computer and typed: “meningioma, find help”.
I arrived at the AMAVEA website.
And this sentence stopped me in my tracks:
“Meningioma is often referred to as a ‘benign’ tumor.”.
This scientific term hides a disease that is anything but benign.
These tumors are complex to treat, sometimes requiring delicate surgical operations and long periods of recovery.
This disease can drastically alter the lives of those affected
For the first time, I felt understood.
I've read it.
Reviewed.
Downloaded the booklets.
Read the testimonies.
I found some answers.
I understood what awaited me.
And most importantly, I felt less alone.
The operation took place on July 11, 2024.
On the eve of my 60th birthday.
My birthday is July 15th.
My gift? A wide excision of a right vestibular schwannoma via a retrosigmoid approach…
Words I was discovering.
Medical terms that spoke of my brain, but not of me.
The neurosurgeon explained to me that he hadn't been able to remove everything. A portion was left in place.
In October 2024, the MRI showed a slight regrowth.
CyberKnife radiotherapy decision in January 2025.
Wait a little longer.
Still need to prepare.
After radiotherapy:
Overwhelming fatigue.
The right eye is suffering.
Deteriorating eyesight.
Pain in the nostril, jaw, and mouth on the right side.
No sense of smell.
More flavor.
I love cooking so much.
And above all, this strange feeling:
My brain is trying to rewire itself.
Electric shocks to the head.
Invisible short circuits.
I am told:
"It's harmless."
Yes.
Perhaps benign.
But it's not simple.
It's not lightweight.
This is not insignificant.
What I'm also discovering is the lack of bridges between services.
The neurosurgeon is not referring me to an ophthalmologist.
No rehabilitation was offered spontaneously.
It's up to me to connect the dots.
It's up to me to coordinate.
We're treating a brain.
But not the person as a whole.
And this fatigue…
It makes me more sensitive.
More fragile.
Sometimes more direct as well.
Because it's unfair.
This tumor developed silently.
It was the MRI that revealed it, even though I felt something was wrong!
Today, what has changed everything is having joined AMAVEA.
And particularly L'Écho des Maux, on the last Tuesday of each month.
I am part of this group of women
who dare to speak,
who dare to say what they feel,
who dare to ask for help.
And above all…
I no longer feel alone.
So thank you AMAVEA
Thank you for the clear information.
Thank you for the resources.
Thank you for giving people a voice.
Thank you for this human connection that medicine cannot always offer.
AMAVEA is a support, a point of reference, a buoy to which I cling to continue moving forward.
With all my gratitude,
Annie
