On a springy day, I rarely returned home. But at the dinner table, I found my father talking upside down and unable to name the thing/person in front of him.
My mother laughed at whether he was old, but I recalled the typical symptoms of cerebral infarction that I had just seen not long ago, and my heart sank, and I directly pulled my father to the emergency department.
Which of tomorrow or accidents comes first?
Seeing the solemn expression on the face of the emergency doctor when he watched the film, I knew that something was wrong.
At this time, my father, I don't know if it is because of nervousness or the progress of the disease, walking has been a little faltering. I was scrambling to transfer my dad to the city hospital, but while he was waiting for the film, he was bedridden and a little delirious.
The fear of the unknown bad news immediately crushed the whole family. The main bone of the whole family was unconscious, the sensitive and introverted mother was crying at a loss, and my sister, who was still studying abroad, did not know that I should carry the collapsed sky up.
I took the film to the specialist clinics of the major hospitals in the city, but the conclusion was basically the same: high-grade glioma. This is a highly malignant tumor that easily invades and infiltrates the surrounding normal tissues and requires surgery as soon as possible. However, the location of Dad's tumor is more dangerous, located in an important functional area of the left brain, and the risk of surgery is extremely high.
When I learned of the conclusion, I hugged my sister who had just arrived at the hospital door and wept bitterly. The family unanimously decided to transfer to the provincial city for surgery.
In the hospital in the provincial city, the doctors have conducted several preoperative conversations and have been emphasizing the risks of surgery: the language function cannot be saved, the motor function may not be saved, and the person may not wake up...
Informed consent for surgery 丨 Author courtesy of the author
But I decisively signed the informed consent form because there was really no other choice. I couldn't help but let my dad operate and then watch him fall into a coma and then die two or three months later.
But I also dare not think about the upcoming surgery, if these surgical complications do appear, how should I face it in the future? Like a walking dead, I traveled back and forth between home and the hospital every day, preparing examinations and formalities, delivering nutritious meals to my father, and finally falling asleep when I got home.
On the day of the operation, Kui sat in the ward waiting for the news to be the real moment of suffering. I began to think over and over again about whether the decision had been made too decisively and correctly. If Dad is really paralyzed, how should I deal with it? Is the family's financial resources sufficient to support it? The more I think about it, the more anxious I become.
The surgery was finally over, and I hurried to see dad in the CT room.
Pale and weak, he, after hearing my call, shed tears from the corners of his eyes and gently held my hand. At that moment, I felt that my breathing had begun again, my thoughts were gradually returning, and my life began to have color again.
But that's just the beginning.
Dad doesn't seem to be the dad I know anymore
At first, the postoperative dad recovered well, except for a loss of memory and a slight tremor in his right hand, there were no major sequelae.
However, the pathological result is glioblastoma, indicating that the prognosis is not good, which means that the success of the operation is only the first step in the long march, and then we have carried out simultaneous radiotherapy and chemotherapy and long-cycle adjuvant chemotherapy in the provincial city.
The father who got out of bed for the first time after surgery 丨 author provided a picture
But the surgery still caused damage to some of the nerve function, and Dad became forgetful, confused, and sometimes couldn't find the right words to express his thoughts. At the same time, radiotherapy and chemotherapy made Dad's body weak, and his appetite began to deteriorate. Seeking medical treatment in other places for a long time also made him suspicious, irritable and reluctant to go out.
Dad doesn't seem to be the dad I know anymore.
In the face of such a closed self, terrified of slight changes in the body, I have also questioned - why can't I be stronger and more optimistic? Why can't we work together to eat the medicine and do the treatment? But on second thought, Dad is more than just physical pain. Isn't it a greater psychological torment that he has gone from being the backbone of the family to being an incapacitated caregiver, and he has lost control of life and has to rely on others?
Before he could enjoy his old age and watch his daughters start a family, he had forgotten their names. It was too cruel for him.
A heavy internal friction
Malignant tumors are not only painful torture for patients, but also heavy consumption for family members.
Mom was busy taking care of Dad's life and fragile mentality, my sister was tired and running between school and the hospital, and I was faced with Dad's treatment plan, facing countless dilemmas and moments of collapse.
The more I read the literature and medical guidelines, the more I learned what a cruel disease glioblastoma is — a five-year survival of less than 5% and an overall survival of 14.6 months.
I was carrying this heavy amount of data and walking alone.
I wept silently as I watched the genetic test reports that did not correspond to the targeted drugs, and I hesitated for the expensive and self-funded tumor electric field treatment. During the day, I am a lively and smiling newcomer xiao X, and when I go home at night, I am a silent family member who browses the frontiers of neurosurgery and clinical trial information.
Because of the heavy topic, I did not dare to show vulnerability in front of friends and colleagues except to huddle together in the group of patients. But in the group of patients, there are the sentences of "mourning" when the patient dies, as if it always reminds me of the ending that will eventually come.
I became in tears a lot, but I had to be brave, I had to be strong.
In the first 26 years of my life, it was my father who shouldered the burden and did his best to make his family live a carefree life, and now it is up to me to take this baton and run into the second half of my life. Once naïve and youthful, I became calculating and slippery, would fight for insurance policy reimbursement and insurance companies, in order to rent a house not to be cheated and agent bluff, but I was willing to do everything to make my father feel better.
Pray, pray again
It has been 10 months since Dad's surgery, and the gradual disappearance of cerebral edema has made his thinking and logic clearer and clearer, and he remembers my name again. Just every 2 months of THE MRI is like the sword of Damocles hanging over your head, and whenever you think about it, it makes people restless and afraid, afraid that one day a nightmare will suddenly come.
Whenever there is another review coming soon, I start to forward the various koi with sincerity, and then keep praying: I hope the result is good!
Every moment in this world, people are born and people die. Whether it is morning or evening, parting is a must, and everyone must learn to be separated from the person they love most. But I hope that time can pass a little slower, a little slower, and I hope that heaven will give me a little more time, so that I can learn how to calmly accompany my father to the destiny of the destination.
Or maybe we can escape the law of large numbers and become a miracle in the minority?
Since dad was ill, I've repeatedly recalled a season of Grey's anatomy voiceover of Izzie and George dying:
Did you say it?
Did you say that?
“I love you… I don’t ever want to live without you… You changed my life…”
"I love you. I never thought about living without you. You changed my life. ”
Izzie and George are dying and are being rescued丨"Grey's Anatomy"
Make a plan, set a goal, work for it.
People always make a plan, set a goal, and then fight for it.
But every now and then, look around, drink it in.
But no matter when, we still have to enjoy life and cherish the present.
’Cause this is it: It might all be gone tomorrow.
Because life is like this: tomorrow and accidents do not know which will come first.
Cherish the people in front of you and live in the moment.
Doctor reviews
Zhou Yuyao | Department of Neurosurgery, Huashan Hospital, Fudan University, resident physician
A glioma is a tumor that originates in the neuroepithelium. According to tumor cell morphology, gliomas mainly include the following types: astrocytomas (which belong to the category of glioblastomas suffered by the author's father), oligodendronous gliomas, ependymomas, and mixed gliomas.
As the most common primary central nervous system malignancy, glioma has been attracting much attention, and it is characterized by malignancy and easily invaded brain functional areas.
Depending on their degree of malignancy, gliomas can be divided into low-grade gliomas (well-differentiated, relatively good prognosis for patients) and high-grade gliomas (low differentiation, poor prognosis for patients). The median survival for low-grade gliomas is 5 to 6 years, while the median survival for high-grade gliomas is only 14 months.
Gliomas often invade functional areas of the brain, which can lead to different types of nerve damage, and patients are prone to language, movement, vision, memory and other functional disorders. The specific symptom performance and severity depend mainly on the "mass" effect of the tumor (the size of the tumor, the degree of compression of the surrounding normal brain tissue), and the function of the brain area it affects.
When glioma affects the visual pathway, the patient will have visual dysfunction; when it affects the central anterior gyrus and pyramidal bundle, it can cause motor problems; when it affects the language functional area, it can cause language dysfunction; when it affects the limbic system and the prefrontal area, it can even lead to emotional and memory problems in the patient... In addition, due to the compression of the surrounding brain tissue by the tumor and the generation of cerebral edema, under the higher cranial pressure, patients can have symptoms such as headache, vomiting, blurred vision, and epilepsy.
The degree of progression of gliomas varies depending on the degree of malignancy. Symptoms in patients with high-grade gliomas tend to vary significantly over weeks to months, while patients with low-grade gliomas have a history that lasts for months or even years from onset to onset. Clinically, based on the patient's medical history, symptoms and signs, the doctor can initially infer the location of the lesion and the degree of malignancy to some extent. Important adjunctive means such as CT and MRI can help to make a more definitive diagnosis of glioma.
Because of the above characteristics, glioma not only has a heavy impact on patients and their families, but also poses a huge challenge for neurosurgeons in their treatment. At present, gliomas are the first choice of surgical treatment, hoping to protect nerve function under the premise of maximum safety to remove glioma lesions, which requires neurosurgeons to achieve a good balance between tumor cutting and function preservation. In order to achieve this goal, in the professional glioma subspecialty group, there are many techniques such as neural navigation, functional magnetic resonance, intraoperative electrophysiological monitoring, wake-up surgery, intraoperative MRI, etc., to assist in functional area glioma surgery.
After surgery, the tumor grade, patient age, occupation and other factors will also be considered, supplemented by conventional temozolomide chemotherapy and ordinary radiotherapy, to further enhance the treatment effect and prolong the survival of patients. The tumor electric field therapy mentioned in the author's article is also one of the emerging therapies that have been recently developed and has been shown to be effective in prolonging the survival of patients, but the price is relatively expensive. In addition, a number of drug clinical trials for gliomas are also being carried out at the same time, hoping that the future treatment of gliomas can go farther and farther, better and better, so that more and more patients can benefit.
bibliography:
Radiation Oncology Therapy Branch of Chinese Medical Association. Expert Consensus on Radiotherapy for Glioma in China (2017)[J]. Chinese Journal of Radiation Oncology,2018,27(2):123-131. DOI:10.3760/cma.j.issn.1004-4221.2018.02.001.
[2] R. Stupp, W. P. Mason, M. J. van den Bent, M. Weller, B. Fisher, M. J. Taphoorn et al. Radiotherapy plus concomitant and adjuvant temozolomide for glioblastoma. N Engl J Med, 2005;352:987-996.
Sharing personal experience does not constitute a diagnosis and treatment recommendation, can not replace the doctor's individual judgment of a specific patient, if you need to go to a regular hospital.
Author: Classmate X
Editors: Suman, Li Xiaoqiu