The weeks following my radiosurgery session, I had headache, more intense, with this feeling that my head was compressed and that it was going to implode. I also always feel this eye pain like a pious that turns in my skull.
Fatigue too, is still present two weeks later.
My loved ones are worried about how I'm going. I just answer them on the physical level ... I keep for me this deep solitude that has hung to me for all these months. Often I fill it by listening to music, and by doing anchoring activities such as coloring, mandalas, drawing. Sometimes this loneliness hurts me ... as much as my headache. Ten months ago, my life changed, nothing will be as before. Despite everything, my little family seems to be getting through all of this and that's good. My sons are successful their exams with it brilliantly and my elder continues with the driving license.
Resilience ...
It takes me time to find the balance, and enjoy the days with and accept the days without. Rather than fatigue I prefer to talk about tiredness: it costs me to concentrate and I only get there on short time.
Several things will help me take over the reins of my life: group sophrology, my sessions with the psychologist and yoga. Sophrology will help me manage the pains and allow me to reclaim my head that has become a playground for the medical profession ... Wash my hair had become an unpleasant moment, to the point where it took me more than two months before being able to return to the hairdresser.
Walking with my dog did me good and relearned I know how to take the time. Learn to listen to and know how to put back in the event of a migraine crisis.
My smell disappears almost completely. I still have a possible sensory start when I miss a pile of slurry ... It is unfortunately not the smell that I prefer!
Smell is more present in life than we could imagine ... I will sometimes let the dishes burn because I don't feel…. I only have the visual left (but not easy to stay planted in front of his cook) and hearing to hear cracking….
I who love flowers and especially their perfume I do not experience the pleasure of the lily of the valley or peony bouquet in the house. I can't help but literally put my nose in my lilac when I miss it as if to make an olfactory shoot ...
Smell is also knowing when you feel sweat and socially do not manage it any more….
Little by little I resume a “pleasant” life.
Days with and days without…. But even on “with” days, there is always someone or something that reminds me of the presence of this khéops. For example when I go to perfumery and the saleswoman offers me to try the latest perfume out of my favorite brand….
Living with Khéops is also living with migraine, whether both are linked or not, I need to tame them, and do with their consequences such as fatigability, photosensitivity or misophonie. I choose the moment when I do my shopping and it is often with earplugs or headphones that broadcast my special “headache” playlist. I also sometimes prefer to refuse an invitation where then I reduce time to keep only the pleasure of the moment.
I cannot mourn my smell, radiosurgery should allow it to be preserved ... The treatment may not yet have an effect and the meningioma has further enlarged my other olfactory gutter. The neurosurgeon had explained to me at the time that radiotherapy acted in time and that it was possible that the tumor evolves a few months before the shelves stabilize it, then hope, make it decrease. So I keep the hope that my smell will come back.
A year later I am back in this MRI tunnel ... Stress ... I think this exam will never stop the August so, it is linked to the announcement of meningioma and the follow -up tsunami. But this time I manage better thanks to sophrology.
And there ... good news, better than hoped, meningioma has decreased in volume. Difficult for me to achieve. It is the reaction of my sons and my husband who will make me aware of this reality. I understand then that even if for them life had resumed as if nothing had been (and so much the better) ... they had not erased this….
At work, on the other hand it seems “erased” from the memory of colleagues ... I am faced with my limits and I remain the only one really who can make sure to preserve myself as much as possible, and that implies knowing how to say "no" despite the pressure of work. It is for me then, a return to these moments of deep solitude, solitude that tears you from the inside ...
A few weeks after my MRI control, I see the neurosurgeon who explains to me that, yes we can be satisfied with the result and that the reaction edema is not as important as it could fear it and that my brain appears tolerate it well, and it seems that the sword of Damocles "epilepsy" remains at a good distance. The radiologist had left doubt about the reason for my loss of smell: because of meningioma or radiotherapy? With the presence of this cerebral edema, it is then possible for me to continue to hope that my smell can return.
And this is indeed the case the following spring: a year and a half after radiochuruse, I can feel the scent of flowers, not as before, but in “shoot”. My sense of smell is slowly returning, even if I do not yet feel the smell of my perfume. My smell sometimes destabilizes me with nonexistent smells or staggered in time ... but it comes back!
I do not regret the choice of radiosurgery even if I could avoid having to relive this. It takes time to see the effects of this treatment. This implies work on oneself to accept to “keep this thing” in the skull and to make it a part of oneself like any other scar even if this one is not seen from the outside.
I no longer see things in the same way and what I had to do to get my head out of water like the practice of sophrology and yoga are useful to me today to better understand the difficulties of everyday life and not to be invaded by anxiety at work for example or by the occurrence of yet another migraine crisis.
Savoring the present moment is how I can find happiness, these moments where I forget that my head is a pyramid that houses a mummy…. But what a pyramid: Khéops is the first of the seven wonders of the world of antiquity, and given how my head was able to overcome all this, it deserves this comparison!
Read the previous episodes:
1st testimony: https://amavea.org/lannonce-un-tsunami/
2nd testimony: https://amavea.org/apres-le-tsunami-de-lannonce-langoisse-de-lattente/
3rd testimony: https://amavea.org/il-faut-le-traiter/
