Hello everyone,
I'm the son of my mum, 71, who has just been diagnosed with glioblastoma. Everything happened very fast. She had dizziness, headaches and blurred vision that we were putting down to her blood pressure. An MRI revealed a brain tumour.
She was operated on a few days ago and the surgeon was able to remove the whole tumour. She woke up the very next day. The analysis confirmed a glioblastoma.
They explained the protocol to us: soon 15 sessions of radiotherapy along with chemo in tablet form, then maintenance chemo over several months. We're still waiting on the MGMT status.
I also want to talk about the appointments, because they're a trial in themselves. The surgeon was compassionate. He told us plainly that the operation had gone well, that he'd removed everything. But it was at the following consultation that the sentence dropped, calmly, without dodging: today, we don't know how to cure this illness. The aim of the treatment is to buy time and preserve her quality of life.
Hearing that about your own mother, sitting on a chair, and on top of it having to translate every word for her because she speaks little French… I don't know how I stayed upright. You take the blow and you don't even get the right to fall apart, because you have to keep translating the next sentence.
And the hardest part is maybe this: we don't know anything. We don't know if it will come back, or when. We don't know if it can ever be cured. We're moving forward in the dark, with no date, no certainty, nothing to hold on to. We're lost. They give us a treatment calendar but no one can tell us what's at the end of it, and that uncertainty eats at you as much as the illness itself.
I'm going to be honest with you, because I think here we can be. I handle everything for her: the appointments, the treatments, the medication, the calendar. And at night, when everyone's asleep, I read, I search, and some days I think I'm going to lose my mind.
The thought of losing her, I can't bear it. She's my mother. This woman gave me everything, and today I'm the one holding her file, while deep down I'm just a son who's afraid.
But I refuse to mourn her while she's still here, alive, in front of me. I want to fight by her side, day after day, and make the most of every moment we have left — however many there are, and I believe there'll be many.
That's why I'm turning to you. For those who have been through this, especially with a parent of this age: how did the chemoradiation go day to day? How did your loved one tolerate the temozolomide? How did you cope with these consultations and this constant uncertainty? And for the caregivers, how did you hold on without breaking?
Thank you for reading me. Courage to all the families going through this. We're not alone.
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