Tingyun is a girl under 30 years old, once an ordinary and happy "deep drift". More than a year ago, on her 28th birthday, she learned of her father's ill health, and then his father was diagnosed with hepatic hilar cholangiocarcinoma.
Tingyun was confused by this heavy punch. She always wanted to give her parents the best old-age life, but at that time she felt that she was not good enough, and she was afraid of "children who want to raise and not wait".
To some extent, she became the family's leader in medical decisions. She discussed her father's surgery with doctors and finalized a plan for post-operative chemotherapy and immunotherapy. For half a year after her diagnosis, her father didn't even know his tumor was malignant.
The old man, who had just retired for two years, had surgery to cut off two fist-sized tissues and experienced infections, repeated high fevers and more than half a year of chemotherapy. Today, he is still battling cancer.
Although he was afraid of the disease, he seemed to be prepared for the worst. Many times, he is expressing that he does not want to be a burden on the child.
Last month, Tingyun quit her job in Shenzhen and accompanied her parents to live in a new house in Huizhou, which she bought to provide for her parents. She describes such a life as a "race against time" where she tries her best and leaves no regrets.
1
Life has given me a lot of identities, daughters, wives, daughters-in-law, teachers... On my birthday in 2020, a new identity that I least wanted to accept arrived – a cancer family.
I grew up in a small county town in Jingzhou, Hubei Province, and after graduating from university in 2014, I became a "deep drifter" family. In this city, I met my husband, who got married in early 2020 and, like many young people, lived an ordinary and busy life.
November 7, 2020, is my 28th birthday. I went to work as usual, planning to have a good meal with my husband after work and treat myself. At 10:00 a.m., my mother called, I thought it was to celebrate my birthday, thinking in my heart, last night's video was blessed, how to call during work hours, it is inevitable that it is too "fussy".
After the connection, the mother's tone was extremely anxious: "Your father has been very abnormal recently, his skin is itchy and unbearable, several pieces are scratched, and he can't sleep well." The face is strangely yellow, the white eyeballs are yellow, and the stool is white! It's been a few days, what to do?"
I know that if it weren't for the fact that my father's symptoms hadn't eased and were getting worse, they wouldn't have made this call at all. He had just been diagnosed with diabetes a month ago, and he still had high blood pressure, and his physical foundation was not very good.
While comforting my mother on the phone and instructing her to take my father to the hospital as soon as possible, I consulted on the Internet and hung up several expert numbers, all suspecting that it was obstructive jaundice, which sounded quite serious, and my heart became more and more bottomless.
Home and Shenzhen are separated by more than a thousand kilometers, I can only explain the situation to the leader at the first time, and booked a ticket for the night. In the afternoon, I sorted out the work at hand as quickly as possible, and the leader also ordered cakes and milk tea to help me have a birthday with mixed feelings.
After work, I sped to the airport, where my husband had already picked me up with his luggage. He was sweating profusely, carrying a small cake and a hand-made egg fried rice in his hand, and he was comforting me in his own way.
The way home before was accompanied by joy and anticipation, but this time it was full of anxiety.
Late at night when we arrived, we stayed near the hospital, where my father was already resting in the emergency room, waiting for the nucleic acid results to come out and then being officially admitted.
Early the next morning, we met my father at the hospital, who was waiting in line with his mother for an MRI. His whole body looked a little haggard, and his face was very yellow.
But he himself felt that there was no big problem, and when he saw me and my husband, he was stunned: "It's not much of a deal, how come both of you have sneaked back?" Despite the complaints on his lips, his face was still glowing with happiness.
We accompanied my father to do various tests: blood draws, CT, MRI... Two days later, the results came out.
Taking advantage of my parents' lunch break, I secretly went to the doctor's office. The doctor in charge rested, and the intern doctor helped me see the results, saying that it was obstructive jaundice caused by the tumor, and the tumor blocked the bile ducts, causing an increase in bilirubin. Finally finding the reason, I was briefly relieved.
But the doctor went on to say, "The probability of a tumor being benign in this situation is very small, and you have to be mentally prepared." I felt my head buzz, my legs weak, and cold sweat coming out. I don't know how I got out of that office, I just remember crying in a chair in the hallway.
Later pathological reports revealed that Tingyun's father had cholangiocarcinoma. Image source: Listen to the cloud provided
How can it not be uncomfortable? Now I am not good enough to give my parents the best pension life. My father had only been retired for two years, and before he could enjoy life, he suffered such a blow. Thinking of this, my tears just kept falling.
After my father was hospitalized, my mother always couldn't help but shed tears. In the past, she hadn't experienced any big winds and waves, and now she couldn't help but be a little flustered, and she always asked me: "If your father has any three long and two short, what should we do?" His father was a mathematics teacher with a rigorous and conservative personality.
Their fears were far greater than I had imagined.
Given this situation, I didn't choose to tell them the truth the first time.
The next day, after consultation, my father was transferred to the hepatobiliary, pancreatic and spleen department. Finally began the symptomatic treatment, every day medication, slowly stopped the itch, father can also sleep well.
Between treatments, we also let him out and breathe, taking him to play billiards and play in a nearby amusement park. At that time, we all thought that his mental state was good, but then I heard my mother say that he deleted all the photos, and I went back to look at them, only to find that the father in the photos was indeed like an old teenager, with deep eye sockets and a dark face.
Because the father's bilirubin was too high, it rose from 97 μmol/L at the time of admission to 217 μmol/L (the reference value for adults is 3.4 to 17.1 μmol/L), and it was not suitable for surgery. The attending physician recommends bile duct aspiration.
A few days after the puncture, it is still rising. It wasn't until a week later that the indicator began to decline, but it was still far from normal.
I was the most anxious during that time and I couldn't sleep all night. Day after day, everything seemed to stand still. I even thought about transferring my father, and he was even more anxious to see that patients who were admitted to the hospital at the same time, or even after being admitted to the hospital, were discharged one after another.
On November 23, the indicator finally dropped to 117 μmol/L. The doctor suggested going to a hospital in a neighboring city for a PET-CT to see how the tumor was.
Waiting for the news is not discharged, but to change the hospital examination, the father is more resistant. After a long silence, he asked me tentatively, "Am I very ill?" Don't fool me, tell the truth." I reassured him that it was not the seriousness of the disease, but the reason for the instrument, and this examination had to be done over there, so that the subsequent operation would be more assured.
When he was hospitalized, the drainage bag that my father was wearing was draped over the bedside. Image source: Listen to the cloud provided
I know that after the piercing, my father is very mindful of going out. The two drainage bags hanging from his waist made him feel uncomfortable, he felt that it was very undignified, worried about the strange eyes of others. We bought him a trench coat just long enough to completely cover the drainage bag. In this way, he was also willing to go out with us.
Fortunately, based on the results of PET-CT, doctors judged that the father had the conditions and necessity of surgery. We hired an experienced professor to take the lead.
2
On December 1, the 24th day of my father's hospitalization, I finally had surgery.
I went to the preoperative conversation and signing, and my mother did not dare to listen. I listened to the risks of surgery, and I was actually scared and couldn't help but shed tears.
But the words still have to be signed. After signing, I washed my face and pretended to be relaxed back in the ward. I told my father that the operation was simple and that the surgeon was very good, "to others, it's as simple as solving a math problem."
His expression finally stretched a little. He said, with me there, he wasn't afraid.
It was then that I suddenly realized that my father was really old, and that he had become dependent on me as much as I had relied on him as a child.
The father's surgery lasted 7 hours. It was the longest 7 hours of my life, and we didn't dare to leave for a moment, for fear of being called to talk by the doctor, and dinner was eaten in the waiting area outside the operating room.
At 10 p.m., the door to the operating room finally opened. The doctor gave us a glimpse of the cut tissue, bigger than two of my fists. Hearing the phrase "the operation went smoothly" seemed like the best reward for our efforts this month.
When the father was pushed out, he did not wake up, and he did not respond to how to call, and was immediately sent to the ICU.
On the day of his father's surgery, he listened to Yunfa's circle of friends. Image source: Listen to the cloud provided
At 6 a.m. the next morning, I set out to visit my father. In Jingzhou in December, the weather was a little cool in the early morning, and I wrapped my clothes tightly and walked quickly. Trance remembered that when I was a child, it was not yet dark, and my father took me on a country road to school. I love snowy days and the heat in his back basket. On the way, I had to cross a hill, and I was always very afraid, so I sang with my father: "Follow me, I will leave at dawn, the dream has awakened, and the heart will not be afraid..."
When I arrived at the hospital, I learned that family members could not visit the ward. Later my father videoed me, saying in a hoarse voice that he was going to come out. He had a tube in his mouth, obviously with a lot of force, but his voice was very small.
He said his back was very sore, his hands and feet were tied all night, and he had just untied when he videoed me. When he woke up in the middle of the night, he was in terrible pain, trying to make a rattling sound, and later asked the nurse to bring a pen and paper so that he could write down what he wanted to say, but he did not get a response. He even vaguely heard someone say that he was the most disobedient patient.
The ICU became his nightmare. I could understand that he had all kinds of tubes inserted in his body that couldn't make him move around, so he controlled his hands and feet, and the tubes in his mouth made it difficult for him to make a sound, and it was not easy for the nurse to know what he was going to do.
But I also can't understand why a conscious patient who has been awake for 14 hours can't get him to express his needs.
This control is more frightening than the operation itself, and he feels more isolated without relatives around. Later, he told me that no matter what happened in the future, he would never want to enter the ICU again.
In the afternoon of the second day after the operation, my father was transferred back to the general ward. Pushing him all the way back to the ward, my father burst into tears. He said he struggled all night and was in so much pain. I'd love to check out the surveillance and wonder what really happened that night.
The postoperative recovery seemed to go better than we thought, and the father did not develop any of the complications mentioned in the risk notification. For the first 3 days, the pain is severe and gradually lessens. After more than a week, he can be helped out of bed and move. Half a month after the operation, he could wander the corridors.
Because there is bile discharge, sometimes the gauze has to be changed five or six times a day, and each time the medical care is very timely, which is very touching.
A week after the operation, the biopsy results came out, no miracle happened, and the tumor was indeed malignant. Although I had imagined this result countless times before this, I still couldn't accept it when I saw it in black and white. It means that the battle has only just begun.
But I had to accept, not only that, but laugh and tell my father that the tumor was benign. He was relieved and in a good mood.
After his father's surgery, Tingyun's husband accompanied him to play chess in the ward. Image source: Listen to the cloud provided
The gentleman bought a pair of chess pieces to accompany his father in the hospital room, hoping to divert his attention. We were happy to find that my father had such a strong desire to win or lose, took a wrong step, and even demanded repentance like a child. There was laughter in the ward.
On January 19, my father was discharged from the hospital. I took the two elderly people to Shenzhen for easy care. At that time, the house we rented was small and dark, and the lights had to be turned on during the day. My husband and I rented a small studio nearby and went there at night. Despite the difficult conditions, I felt that my parents' hearts were solid.
Approaching the Spring Festival, I thought about the family first spending the New Year in peace and stability, and then starting a new round of fighting after the year.
3
Unfortunately, the good times did not last long. Within a week, my father suddenly started to have a fever with a body temperature of more than 38°C.
We hurriedly packed our things and went to the hospital. Due to the impact of the epidemic, it is more difficult for patients with fever to see a doctor. We did a nucleic acid test, and when we had to wait for the results in the waiting area, we could only give him some fever reducer first.
Later, I tossed it into the middle of the night before I stayed in. The doctor changed the drainage tube for the father and did some tests, and the bilirubin was normal, but the inflammatory indicators were high. Doctors suspected a co-infection of the biliary tract and gave my father a week's worth of medication. My father's body temperature went back and forth, several times after the infusion, and then rose back the next day.
On the 3rd day of the fever, my father was discharged from the hospital. I asked whether to do an angiography to see if the biliary anastomosis was done, and the doctor said not to do it for the time being, worried that the contrast would cause fever again.
As a result, a week after he was discharged from the hospital, my father had a fever again. After we asked the doctor, we gave him the fever reducer he had prescribed before, but the next day it was 39°C. We had to rush to the hospital overnight again, and this time all the procedures were familiar.
My father's high fever lasted for 4 days, he was sweating profusely, and he had to change several sets of hospital gowns every day. Doctors at the hospital agreed to do the angiography, and the results showed no problem. Later, they cultured the bacteria with their father's bile, which they thought was a biliary tract infection.
February 11, 2021 is my father's first Chinese New Year's Eve after he fell ill, and it is also the first time my parents have spent the New Year with us in Shenzhen, and I didn't expect to spend it in the hospital.
Originally, I ordered a Chinese New Year's Eve meal in the restaurant and wanted to take them out to eat and return to the hospital in the evening. However, his father's high fever did not go away, and fever patients could not enter public places during the epidemic, so they had to retire Chinese New Year's Eve meals.
I rushed back to the rental house to make a meal, my father had a bad appetite, I made his favorite fish and crispy ribs, made light and nutritious steamed eggs, and the custom of my hometown - Nian Tofu. I plated the meal for a photo and packed it back to the ward.
In fact, what to eat and where to eat is not important, as long as we are a family together, with hope and confidence in the New Year, it is a great significance.
Prepare a Chinese New Year's Eve meal packed to the hospital. Source: Listen to the cloud
At the end of the year, my father will not have a fever, and we all want to believe that it is the New Year that brings good luck. After 3 days of normal body temperature, the father was allowed to be discharged from the hospital. He packed his backpack early and waited for the doctor to discharge the hospital, as if he were waiting for a child on vacation.
But he still needs to start the next stage of cancer treatment. After much deliberation, I decided to return him to the hospital where he had previously operated, after all, having a trusted attending physician who was very familiar with the patient's condition was crucial.
A week before departure, my father suddenly had a fever of 39.3°C and was hospitalized again. In just over a month in Shenzhen, he was hospitalized 3 times for fever.
The reimbursement rate for off-site medical treatment is low, and my father is distressed and feels that he has become a burden for us. But I'm very thankful that during the time when he had repeated fevers, fortunately we were all around him.
4
On March 1, 2021, we returned to our hometown and returned to our previous hospital. Based on the results of his father's genetic testing, doctors eventually decided to use chemotherapy in combination with immunotherapy, which uses a PD-1 monoclonal antibody.
My father had been speculating about why he was still being treated after surgery, and he was very afraid of chemotherapy. I tried to explain to him that in order to inhibit the regeneration of "bad cells", medication was needed.
But in the end, it is impossible to hide, after all, he is a retired teacher, and he will go to the Internet to check the names of those drugs. I finally realized that I could only confess. He even told his brother that he must let him know the truth.
In fact, since my father was diagnosed, I have been struggling every day, knowing that sooner or later I have to tell my father, and I am afraid that he will not accept it, and I am even more afraid that he will easily give up treatment and give up the hope of life.
But the choice should be in his own hands, not my own treatment, which is very cruel even without his knowledge.
And the confession of the father went better than expected. When I said the thing, a smile slowly appeared on his face. He relaxed, "I knew it was like this, and finally I didn't have to guess for myself."
Maybe he had prepared for the worst, like the night before the surgery, when he wrote a "last word" on his phone. He briefly reviewed his life, explained his mother's pension problems, thanked us for our care, and asked us to help our sister more.
In such an encounter, he must be afraid and vulnerable, but he will also be strong and hardworking.
The night after the confession, I slept very soundly, and the stone that had been pressed in my heart for half a year was finally taken away, and I didn't have to work hard to act or hide with his inspection report.
His father once sent a WeChat message to his brother, expressing that he wanted to have the right to know and choose his illness. Image source: Listen to the cloud provided
The father finally agreed to start follow-up treatment.
He asked me, "Chemotherapy will lose your hair, how do you get out?" I comforted him: "It's not necessarily hair loss, if you really will, you can also wear a hat or wig, it won't affect it."
I know that the harder the moments, the more he wants to keep his dignity.
For a full 6 sessions, my father wanted to give up. He was a pain-weary man who instinctively resisted injections. And always in and out of the hospital, he was tired of the environment there, every time he came back from the hospital for two or three days, he began to worry: "Why can't I rest for a few days, I have to go again?" We comforted him, "It's okay, I did it this time, and next time I don't want to go."
I knew there was also a big reason, he read a mixture of information on the Internet, some of which exaggerated the toxicity of chemotherapy drugs and deepened his fear of chemotherapy.
But with our encouragement, he finally persevered. Fortunately, he did not lose hair, did not have side reactions such as vomiting, and the indicators of tumor markers have been relatively optimistic.
During my father's chemotherapy, my mother took on almost all of her care. Her father could not eat, so she made nutritious meals every day, cooking him stomach noodles, boiling eggs, rubbing lean meatballs, and supervising him to take stomach-protecting medicine on time. My father's weight rose from 120 pounds after surgery to 135 pounds.
It made me very happy, that the battle against the disease, although we did not completely win, at least did not lose miserably.
In the past six months, two patients I knew during the operation have passed away, one is pancreatic cancer, and the other is also a hepatic hilar cholangiocarcinoma like my father. I didn't dare let my father know about such news, for fear that the confidence he had so hard built up would collapse.
5
After my father's chemotherapy was over, I wanted to continue to take him and my mother to live in Shenzhen. I originally bought a house in Huizhou and planned to pick up my parents there for the elderly in the future. Because my father was ill, we braved financial pressure and started the renovation ahead of schedule.
My father refused to come over, for fear of causing us trouble. After more than a month of repeated fevers, he felt that he had become a burden on us.
In the end, he still couldn't beat me.
After arriving in Shenzhen, we took him to see the teeth. His father was missing two front teeth, so he became less talkative, and he was still the old teacher who cared deeply about his own image.
We consulted several dental hospitals. Father wanted to go to the clinic downstairs, two or three thousand can get it right, or a fellow. We insisted on taking him to another more formal one. He said that ten or twenty thousand teeth were no longer worth it for him, and it would not take long, it was too wasteful. I laughed and said, "It will take decades, how can it be wasted!"
I secretly paid the money, communicated well with the staff, although the price was more than 20,000, if my father asked, he said that it was in the promotion, and he removed a zero and then quoted. The father was treated in disbelief. On the day he finally installed his teeth, he was very happy, and on the way back, he talked more, and he kept praising the good service of the clinic and the professional of filling teeth.
My father loves to take pictures, and I want to take wedding photos with him and my mother when he is in good shape. When they were young, they didn't take decent wedding photos, which is also a pity.
With the experience of looking at teeth, I decided to secretly choose a good one and pay the fee first. In order not to make them too hard, I took them to the store a day early to choose clothes. My father had his own ideas and chose two suits and a Tang suit.
When I got home that day, my father was still complaining: "This is really not necessary, it is too wasteful!" I'm not feeling well, and I don't know if I'll be able to go tomorrow."
On the day of the actual shooting, my father was worried all the way, he was sick, and whether he could look good when he shot it. When he put on makeup and changed his clothes, he behaved very calmly, but his mother was a little unnatural.
When they entered the studio, their expressions were a little shy with happiness. The photographer taught them a lot of poses, and the two slowly got into shape. Later, my father even offered to go on location. We also granted his small request.
That night we selected the refined photos and copied all the original films back. After arriving home, my father was like a computer addicted child, who had been watching the day's "blockbusters", which was indeed very spiritual. He chose two to change into his WeChat avatar and circle of friends background.
Listen to the wedding photos that Yun took her parents to take. Image source: Listen to the cloud provided
I made a tidbit video taken that day, posted it in the circle of friends, and encouraged my father to send one too. He said, "I'm sick and I don't want to be so high-profile."
He was always reminding himself of the fact that he was sick.
I said, "No one is taking you as a patient today, and your picture looks really good." He said yes, but I knew that he still had no relief in his heart, and being sick was still a shameful thing for him.
Soon it was my father's second birthday after his diagnosis. His first birthday was a week after his diagnosis, at a hotel near his hometown hospital.
In fact, my father still likes to be lively, but the disease is like an invisible net that binds him, less words and smiles, and even less courage to try.
I took my parents to Haidilao, and my little brother and sister sang and danced, making them happy and blossoming. My father also clapped his hands, was very interested, and improvised a dozen oil poems, and took the initiative to send a circle of friends.
6
In May of this year, I quit my job in Shenzhen. In fact, the leaders and students there were very kind to me, and I was very reluctant when I left. But I realized that Shenzhen is not a city that is very suitable for the elderly, the pace is too fast, and the eyes are full of high-rise buildings and electric vehicles delivering food. In contrast, my father preferred Huizhou's living environment with mountains and waters.
We hurriedly moved into the house in Huizhou. The community often organizes activities that parents love, such as signing up for movie-going events and watching "Hello, Lee Huan-young" with their neighbors. The property also often prepares a love breakfast, the father will go for a walk with his mother after getting up, buy vegetables, and come back to bring up the love breakfast by the way, the two are particularly happy.
I also got a relatively easy job near home, hoping to spend more time with my father. Although the economic pressure in recent years has been relatively large, I know that the race against time must not be lazy, and only by making every effort will there be no regrets.
One morning, I drove my father to the hospital for a check-up. He said he didn't expect to be able to live in my new house and get in the car I drove, and he was very happy.
I also feel happy, originally worried that "the son wants to be nurtured and will not be treated", it is the help of medical care and the grace of Heaven that gives me the opportunity to do more.
When I came out of the hospital that day, I took him to eat steak and chicken wings, and later asked him to accompany me to choose a number and film for the new car. He was like a child, happily following me around for a day without shouting tired.
Last year, he was very happy to hear that Yun took his father to a hot pot restaurant for his birthday. Image source: Listen to the cloud provided
Now, my father is taking painkillers. This spring, he said his left ribs hurt for a long time, and if he yawned or sneezed, it hurt even worse, and even affected sleep. Later, the ribs got better and my right leg began to hurt again. The frequency of taking painkillers has changed from once every two or three days in the first two or three days to once a day now.
But his mental state is still good. A few days ago, during the Dragon Boat Festival, I took my parents to Luofu Mountain, and my father walked more than 10,000 steps, and the photos he took looked full of state.
Lately, my father was always talking about going back to his hometown. We are also discussing, after all, the parents have more relatives over there.
After getting sick, my father would occasionally say something about the arrangements for the aftermath, but the core was not to increase the burden on us. At first we would interrupt him and not let him say this. Later, I felt that if he wanted to say it and we didn't let him say it, he would probably feel bad too.
In just over 3 months, it will be my father's birthday again. I hope we can still take him to Haidilao and listen to his little brother and sister singing birthday songs. Hopefully, this year's Chinese New Year's Eve, our family can have a good meal in Chinese New Year's Eve new house.
There is still a lot of good things in the future, and hope is too late.
Author: Listen to the clouds
Producer: Chen Yihan
First image source: Tingyun provided
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