What happened before
A few days before New Year's Eve 2022, my mother started to drag her left foot. She could not climb our stairs anymore. She had to sleep on a couch, which was a challenge in itself. That night, she slowly slipped from the couch and could not get up again. First thing in the morning she told me that she had been waiting on the floor all night. I felt awful. I wish she would have alarmed me, as I always do sleep lightly enough to get on my feet right away.
Due to the ambulance nurses' reprehensible actions, her brain surgery suffered a full week's delay
I dialled 911. Then a most astonishing thing happened. The ambulance arrived, the ambulance nurses commented on our "slippery" floor and blamed my mother for not wearing non-slip socks on a vinyl flooring. We have lived in a vinyl-adorned house for years without anyone ever dropping on the floor. The nurses sat my mother on the couch and they just went. I thought it was a bad joke. They refused to take my mother to hospital for an examination. Two long days went by. I had to order a hospital bed in our living room. I had to replace my mother's left side when helping her to the bathroom, as she became increasingly paralyzed. Before dawn I started heating and replacing jugs, as my mother could not adjust her temperature. All day I had to bring her drinks and assist her to the bathroom, where she had to hold the door knob in order to not drop into the bathroom. After two days, she was entirely unable to walk. It was obvious she had unilateral paresis, without her face drooping.
Early New Year's Day, I started searching for an emergency care service. None was available. "Our drivers are still sleeping", "There is no ambulatory nurse working on holidays like New Year's Day". I dialled the hospital and a nurse from neurology told me to get my mother to the emergency room as soon as possible.
Then it almost happened again. The ambulance nurse said that my mother, now obviously paralyzed, was no emergent case. However, the admission to the emergency room was already scheduled, so it was no longer of relevance that the ambulance nurse refused to assess my mother correctly. She may have deemed my mother not an emergency, MRI revealed a bleeding tumor that had to be removed immediately. But because of the first ambulance nurses' reprehensible actions, my mothers brain surgery suffered a full week's delay.
Background: what an EGFR-exon21-mutation in people of East-Asian descent amounts to
My mother had an EGFR-exon-21-mutation which led her to develop Non-Small Cell Lung Cancer. It means that in most cases worldwide and in her case particularly, many female never-smokers of East-Asian descent develop lung cancer in their left lung lobe. Almost every case of NSCLC of the East-Asian exon21-mutation is incurable as of 2023. Platinum therapy does not increase the 5-year-survival Rate with more than 5% and Tyrosine-Kinase Inhibitors (TKI) like Osimertinib offers less than 16 months survival. It is important to note that Osimertinib and other systemic therapies fail in Asians.
Since an illusory black-white-debate is hindering the acknowledgement of nuanced racial and ethnical distinctions in the Netherlands ("white" in the Netherlands means ghostly pale, which my mother has never been), my mother was listed as "Caucasian white", as only a distinction between white-Caucasian and non-white, non-Caucasian is drawn. It is not accurate as we do know that both of us are East-Slavs with Asian influences, but what's worse: no one acknowledged that my mother could not benefit from a Caucasian-centered TKI regimen.
My mother has had 4 primary tumors, starting when she was just in her 30s. One of her primary tumors was Non-Small Cell Lung Cancer (NSCLC), due to an EGFR-exon-21-mutation. Her lung cancer was diagnosed after she had gynaecological complaints. Her GP had mistaken her lung cancer for a urinary tract infection. Months of unnecessary treatment with antibiotics followed. When she was finally referred for gynaecology, her lung cancer was revealed. She underwent lobectomy, followed by platinum treatment + Pemetrexed. The complexity of an exon 21-mutation on the EGFR-gene is that the risk of cancer recurrence is unpredictable.
A sudden formation of malignancies with pleural effusion was revealed beyond the 5-year-OS rate. 15 months following her pleural malignancies, she had developed brain metastases, which had not been discovered during her routine controls (CT-scans and liquid biopsies) in November 2022.
This could mean that oligometastases have been overlooked, or that there has been an unpredictable and rapid cancer cell turnover. Until the end of December 2022, she also had no signs of illness or disability. The onset of symptoms was sudden, which is compatible with brain tumor activity.
I knew my world was going to collapse
The first weeks of
January 2023 were awful. Really awful. We had to wait a full week until
my mother's brain surgery. It was not clear whether her brain tumor was
confined to one location.
I was convinced that my world was going to collapse. I had to find a hotel room to stay in the hospital's proximity. I had no one to take me home, I had no transport modalities. I was literally stuck in an awful place and time. Things were bad in itself, as I had been suffering from Inappropriate Sinus Tachycardia Syndrome/d.d. PoTS since November 2022, which made me sick and my coordination out of wack. I asked for help, but the hospital, my very own university hospital, the place where I was born and where I had studied (!) did not offer me or my mother any assistance. I had to find myself a hotel to check into that night.
Since we had left home in an emergency case, I had packed two bags with all her necessities and I had no time to put on proper clothes and shoes. The first full week of January, I was walking the streets in the hospital area in a soaked bath robe and mud-stained, soaked slippers, as the rain was pouring all day, every day. Surprisingly, no one even noticed that I walked through the city in a soaking bath robe. I thought "If I get an accident right now, no one could take care of my mother", as there was literally no one to stand us by in any sense. I did request help regularly, even professional help, but was denied any kind of assistance. I had to see for myself and my mother. She suffered the most that I had no place to go to. I had to find a place to sleep day by day and if the hotel was booked, I would have to sleep inside the train station. The staff manager (of the lung surgery and Long COVID ward) was aware of that- but she could not care less.
In the hotel, I tried to connect with other people in the lobby and the shared dining, but they resorted to their rooms very quickly. I felt tremendously lonely. It was a dark place. I did not know what was going to happen exactly. I did not know for sure what was ahead of us. The hospital told my mother that she was going to be admitted to an intensive rehabilitation facility.
In my hotel room, I was glad to have social media at my disposal. It was my sole outlet. Otherwise, it was me and my loss of any kind of hope alone. There was not a minute, not a second, I did not feel terrible and hopeless. As I had no one else to turn to, I had the online world as my outlet. I told my social media community that I knew my world was crumbling. I knew I was going to lose the most important person in my life. I did fear that I would collapse, I dreaded losing her.
A vision presented itself to me- and visions never lie
It was a very special experience that told me I was going to lose her. I had a vision and visions never lie. I heard my mother's footsteps on the stairs- except, there were no stairs in the hotel, my mother wasn't there and she could not even walk as she was paralyzed and bed-ridden. Her footsteps on the stairs presented themselves as a sign to me. Off course they were foreboding loss.
Brain surgery. The surgeon told me "This is an emergent case that should not have sufffered delay"
The night before my mother's brain surgery, I was allowed to stay in her room and sleep on the seat near her bed. My mother developed aphasia. It was hard. I was suffering. It is emotionally difficult to not understand a loved one anymore. From the night until the early morning, I was trying to decipher what she had been asking. When it became clear that she was asking for a drink, I immediately got up to give her some water (not too much as she had to undergo surgery that day). She could not pick up her alarm device or remote control to call a nurse. Her disability had worsened. I left her room for a moment to cry in the hospital halls. I did not know how she would respond to her brain surgery. It was going to be a massive surgery.
I had to book two days into the hotel. At noon, I had to wait on my hotel bed to receive a phone call from the surgeon. I did not know whether I had to fear to pick up the phone or not. After a drowsy 4 hours I got the call. The surgeon told me that he had removed a difficult, bleeding tumor, making it an emergent case that should not have suffered delay. He could not estimate how my mother would respond when waking up, as it was a severe case. He told me to go to the PACU to engage her in activity as soon as possible
PACU
The surgeon and I both were surprised to see my mother watching and discussing the news at the PACU. I asked my mother if she recognized me. She did. The nurse and surgeon told me that I had just asked her the most universal question that family members tend to ask at the PACU.
She had regained her speech function and she was using her paralyzed arm. Her recovery immediately after waking up from surgery was astounding. She was able to joke. She cried when she watched Ukrainians and Russians celebrate Orthodox Chrismas in The Netherlands, which was being broadcast during the news. It probably reminded her of her mother.
Following a day at the PACU, I had to return to my hotel room for the weekend. My room had a view over the highway that led home. The lights were pointing homewards. That road reminded me of the times that my mother returned from hospital, to resume an illness-free live. I knew we were never going to make it to the road home again, not together. It was an empty space now. Home was not going to be home anymore.
I felt like a part of me had broken off
I did return home in the upcoming days. I hated it. I hated my house. It was a strange, void, dead place to me. It was just a house now. I felt like a part of me had broken off. It was a very present feeling. Not a second of my days was without me feeling like a part of me was torn away. It hurt. I was grieving. Not a sad, tear-filled kind of grief. I was numb, but I also felt turned inside-out. Everything felt useless, meaningless, senseless. I'd rather be in the hospital ward. I hated every night that I had to return home from her hospital room. Even though we called each other every evening until 11 PM and first thing in the morning and even though I visited the hospital on a daily base, from 11 A.M. to 7 P.M.
When I felt it was the right time, I had to ask my mother the most important life questions. We never discussed them before, as I had always been convinced that the right moment to discuss important life questions should present itself. I asked what she looked back on as her most important moments in life. Right beside her, I told her about the vision I had experienced. She was not surprised. It was a very emotional moment. We both knew what was ahead of us. I also asked her something special that I had to be assured of. She and I had felt the same. She revealed the same experience and view of what was going to be. I never need illusions in life. I don't need something illusory to cling onto in order to gain and maintain hope. All I needed was the word and she gave it to me, without a doubt.
All of a sudden, I did not feel broken anymore. I was regaining my old self. I felt a slice of the one that I had been before this all happened. Suddenly the massive hospital hall I had to walk through all alone every night, wasn't such a cold, deserted place anymore. Suddenly the sidewalk on my way back home from the train station was not such a dark, desolate area anymore. But most of all, I did not resent my house anymore, like I did until that day.
