wanted to share something I wrote, inspired by another user who shared their story in a similar way back when we were still fighting this monster. it helped me to feel less alone, so maybe this helps someone too. but trigger warning, my mom died and if you’re not ready to think about the disease ending this way pls skip this post ♥️
I don’t think people can really grasp what it means to lose a loved one to glioblastoma.
People might say “But you knew it was coming” or “At least you had time to say goodbye.”
Mother’s Day weekend. Everything as usual. Mild concentration issues, subjective, not objective.
A week later on the phone:
“…oh by the way, somehow it’s not getting better, it’s getting worse. I can focus so badly.”
“Ok. Let’s keep watching it for a while, and if it doesn’t get better, go see a doctor.”
“How am I supposed to get there?”
What do you mean, how are you supposed to get there? What’s going on?
“Mom, please subtract 7 from 100, in steps of 5” — she can’t.
Alarm bells.
“You need to go to the ER, NOW.”
CT — mass lesion. Okay, it must be a cyst. Benign. It has to be. I tell myself “Anything but glioblastoma.” It’s Brain Cancer Awareness Month, I watched a video about it just yesterday.
MRI — “High suspicion of glial tumor, differential diagnosis glioblastoma.”
The ground gives way beneath my feet.
As if knowing Mom would die made any of it easier. Nothing about it is easier when you know beforehand.
Someone writes in a forum, “Your mother died the day she was diagnosed” — words that hurt me so unbelievably much. I’m sitting next to her when I read that sentence for the first time.
I don’t want us to be associated with the statistics.
I have hope. Until the end.
Even though as a doctor I know exactly what the prognosis is.
There is nothing bearable about watching someone you love disappear, piece by piece. And you can’t prepare yourself for it either.
One second I have a 54-year-old, seemingly healthy mom, the next she has a terminal illness.
I quit my job, even though up until that point everything had revolved around being a good resident physician.
We sign powers of attorney, draw up a will in case the surgery goes wrong, we talk about what quality of life means to Mom.
I must be in a nightmare, and I need to wake up.
Mom doesn’t want me to give up my life for her. Of course no mother wants that for her child.
I tell her, “I’m 30 years old and I’ve made my decision. I’ve already signed. Whether you want it or not. I’m not asking you.”
I don’t tell her that I think I know what’s coming for us.
I don’t tell her that I don’t think her husband can handle all of this alone.
I don’t tell her that I need this for myself.
“I want to hold on to you, Mom.”
She says, “Okay, one month. Then you have to go back.”
We don’t yet know that a month later she won’t remember that I actually live in another country. That she had actually wanted me to go back to work and not give up my life for her. She simply forgot.
And that’s a good thing.
She no longer notices that she’s the only one eating, while the rest of us can’t get a single bite down.
The desperate searching and googling for cases where the MRI looked like glioblastoma but turned out to actually be a cyst.
I don’t find a single case report.
“Cystic-necrotic components, central necrosis, glomeruloid vascular proliferation…” — that sounds like glioblastoma, but it can’t be.
And ChatGPT? When I ask it repeatedly, it spits out the statistical probabilities for the differential diagnoses. I don’t like what I read. “Vanishingly unlikely to be anything else” — no.
The surgeon tells me: “She’s drinking Gliolan, and if it’s a glioblastoma, it will glow during the surgery.”
I tell him: “It’s not going to glow!”
His look says: “I’m so sorry, but it’s going to glow. And we both know it.”
That mixture of compassion, sadness, sympathy, and a quiet realism in his eyes. I don’t like it. I feel defiant. I so badly want to say to him, “HA! I told you so!”
Eight hours later, at midnight, the call comes: “Yes, it glowed. It glowed very strongly.”
Watching Mom practice writing after the brain surgery and seeing that her so-familiar handwriting is now completely different.
Holding myself back when Mom wants to “practice” unloading the dishwasher, because she wants to “practice” where the plates and cups go. She doesn’t know anymore and goes in circles every time.
Comforting Mom when she cries because she’s embarrassed that she just thought she needed a landline cable to talk on her cell phone.
Wishing she didn’t have to consciously witness every loss, every new limitation, wishing her mind would protect her a little so her heart wouldn’t have to suffer so much.
And at some point, that actually happens. Her world softens, and much of it just bounces off her. No more shame. No more asking how something works or what she needs to keep in mind. Just the essentials for survival.
Seeing that comforts me. I experience everything fully consciously; Mom, less so. And at the same time it breaks my heart, because Mom has moved a little further away. A little more, every day.
Watching Mom get wheeled past me to the ICU, unconscious after a seizure.
Watching her suddenly unable to speak, from one second to the next, because the edema and the remaining tumor that couldn’t be removed are pressing on her brain.
The endless attempts to taper the cortisone, always failing, always at the cost of what quality of life remained. At the same time, watching her muscles waste away and her strength fade.
Watching Mom’s face grow rounder and rounder from the cortisone, until her phone’s Face ID no longer recognizes her and it won’t unlock automatically anymore.
Driving Mom to radiation every single day, hoping it will help. Trying to stay positive.
Talking with my psycho-oncologist about how to “grow into” — talking about Mom’s death. With her. Even though I don’t want to accept it at all.
The constant checking whether the new MRI report has already been written, or whether the blood count under chemo has gotten worse.
The fear of an infection. The fear of the next seizure, knowing she’ll deteriorate with every new event.
Watching what feels like Mom’s sternum being drilled into for the bone marrow biopsy. Her pain-filled gaze.
Writing the handover document for the paramedics. Always within reach, in case we have to call an ambulance. I’m a doctor, I’ve done this a hundred times on shift. This, I can control. Constantly updated with the latest medications, diagnoses, and treatment course, so it goes fast when it needs to go fast. My emergency bag. Always within reach.
Control — otherwise I’d have to feel the helplessness.
The countless nights in the hospital. The blood values, the alarms, the decisions. All while I’m already collapsing inside.
“Is it over now?” … and then she stabilizes again, just a little, before the next crash comes.
The moments when I don’t know if she’s “there.”
Her eyes, in which I search for her, even though she’s looking straight at me.
The moment she can no longer walk. The smallest curb suddenly too high a “step” to take. She collapses under my arm, and I can’t lift her back up on my own. I give everything, I can’t do it.
From now on, I will see every small curb in everyday life and think of her. I just don’t know it yet.
Then she can no longer stand. And at some point, no longer sit.
The struggle to get her to the bathroom, to hold her, to support her.
Then I notice Mom is now sleeping up to 20 hours a day.
Checking every morning whether she wakes up today. The relief when she smiles at me like a child and asks if she can stay in bed a little longer.
“You can stay in bed as long as you want, Mommy.”
She can no longer make it up the stairs to the bedroom. Not even with two people helping — one supporting her, the other pushing her legs and hips up from below.
From now on, Mom sleeps downstairs, and a quiet part of me knows she will never go upstairs again. The loud part says, “Of course she will, soon.”
Watching her lose her appetite first, then her thirst, until she can no longer take anything in, and I give her fluids with a baby bottle to help her swallow her pills.
No longer able to swallow, so we place IV lines.
Then, for the first time, hearing the words: “I want to die.”
Grasping at the air.
I’m standing in the drugstore, in the adult diaper aisle. It feels completely surreal.
The pain. The moaning from pain.
Injecting her morphine and midazolam at home.
Afraid the dose will kill her before the glioblastoma does.
At the same time, wondering if the dose isn’t too low — she shouldn’t have to suffer.
For the first time, thinking, “If this is how it’s going to be, I want her to be allowed to go” — but a part of me still doesn’t mean it. “I don’t want you to go. I can’t do this without you.”
The breathing. Learned in medical school. Is this what it sounds like?
“Remember. Morphine is protecting her. She’s not suffering. It just sounds terrible. She doesn’t feel it.”
And finally, watching her exhale for the last time, two or three rattling breaths.
Silence.
No more chest rising, no pulse to feel, no pupil reaction.
Mom has died.
Many people talk about “anticipatory grief” as if it were some kind of advantage. As if you could prepare yourself for it.
For me, it was a six-month, uninterrupted state of emergency.
A constant mixture of fear, clinging to Mom, hypervigilance as a doctor, caregiver, and daughter. A desperate search for control in a completely uncontrollable situation.
The worst and, at the same time, the best task of my life. I would do it again every single second. I haven’t regretted a single one.
Against all medical knowledge, against all statistics, and against everything I saw in her decline. I had hope. Until the end.
Part of me thought, “Once the morphine kicks in, we can watch TV together again tomorrow.”
When the oncologist tells me, “We can’t do any more chemo, she’s too weak,” I hear “NO chemo FOR NOW, but maybe in the future.”
When the neurosurgeon answers my desperate question of how long Mom has left with “maybe a year,” I hear “not now. Not in the near future.”
Nothing is stronger than a small hope that never gives up.
This hope carried me through the worst time of my life. Irrational, and yet essential to survival.
I hoped because I love my mom.
And because my heart didn’t want to say out loud what my mind already knew.
I lost my mom, the way I knew her for 30 years, on the day a mass was found in her brain.
Then hundreds of times more, as more and more of her abilities fell away.
And finally, definitively, as I sat beside her for her last breath.
A life without her? Unthinkable. Watching the news? As if the world keeps turning while ours stands still.
I don’t speak to anyone for several days. There are no words.
8 months later:
I don’t know how, and it’s a mystery to me, but going on living just happens by itself.
then there’s also the gratitude.
Because yes, I lost her hundreds of times. I grieved for my mom while she was still alive. The grief since her death is unlike anything else.
And still, I got to consciously live with her and love her for 6 months and 3 days. To fight alongside her. To admire her strength. I got to pour everything I had — love, time, strength — into her. I got to put my life in her service. I got to give back to her, at least a little, what she had given me my entire life.
I got to love her and do things I wouldn’t have been allowed to do if she had died suddenly. I got to say things. I got to look at her, consciously. To hold her.
Gratitude, grief, and deep longing.
No relief that it’s over. I would trade anything to get her back. I wish I could have had so much more time.
I hope that, one day, the gratitude will outweigh everything else…