By Dr. Yuli Xie
Source: Drug Times (ID: drugsns)
Father passed away from colon cancer 4 years ago, just 3 months from retirement, at the age of 60. From the discovery of cancer in 2008 to his death in early 2013, he survived for about 5 years.
Although the average survival time for advanced colorectal cancer is only this long, I have always believed that if handled properly at the time, my father should have been able to live longer and even be completely cured.
Looking back, I have an inescapable responsibility as a son, especially as a professional in the pharmaceutical industry. This has also become a knot in my heart that will never be untied.
The first is that the discovery is not timely.
In 2008, my father had a colonoscopy with colon cancer, stage II to III.
A few days later, surgery was scheduled. The doctor said he couldn’t wait a day because the tumor might have started to metastasize.
Before this, my father had obvious symptoms such as blood in the stool for more than half a year. After my father had blood in the stool, he had been seeing a doctor in a private Chinese medicine clinic and was treated as hemorrhoids. It was not until someone from the pharmacy next door repeatedly reminded me that I went to a large hospital for a colonoscopy.
Delaying the best time for surgery is the deadliest mistake.
In 2008, I was still working in the U.S. and actually had frequent phone calls with my father. Obviously, I have never really paid attention to my father’s body. Occasionally saying to pay attention to my body is also a form of coping.
If you are a little more attentive and understand his symptoms, let alone a doctor who is engaged in drug research, even an ordinary person can find the problem as soon as possible by checking the Internet.
I understand now that parents don’t want to bother their children.
So, when they call and say something uncomfortable, it’s usually pretty serious. And you told me to go to the hospital for a check, because of various reasons, they may not go in the end, but you forgot about it.
So the concern for the parents’ bodies cannot stop at the mouth. Be sure to communicate fully, supervise their examinations and see a doctor.
If possible, it is best to take them to the hospital to check their health regularly.
The second is irregular treatment.
My relatives and friends, even some unfamiliar Wei friends, often ask me questions about tumor treatment, and I always reply to the doctor’s advice.
A tumor is a complex disease, and it is no exaggeration to say that every patient is different. Only professional doctors, based on scientific diagnosis, can make relatively correct judgments.
Although human beings have insufficient understanding of diseases such as tumors, and there is no ideal therapeutic drug, after long-term practice, the most scientific treatment guidelines and consensus have been formed.
The case is not excluded, but according to the guidelines, the patient has the greatest chance of benefiting.
In China, due to the contradiction between doctors and patients, many people do not trust doctors. The biggest loss is not the doctors who were beaten, but the thousands of patients.
The idea that “chemo is suicidal” was very popular, and my father’s post-operative treatment was affected.
Because of the surgery done in my hometown, I didn’t go to the big hospital to seek scientific treatment advice. In addition, due to the influence of wrong views, chemotherapy and radiotherapy were not done regularly. Sometimes I go to radiotherapy, sometimes I buy a few boxes of Xeloda to eat at home.
Some doctors in county and city hospitals prescribe medicines based on the patient’s financial strength, especially postoperative maintenance therapy.
After stopping the drug, my father did not follow the doctor’s instructions to adjust his living habits and check relevant indicators regularly. So that it relapses very quickly, and it is not detected in time.
Looking back now, after my father’s surgery, his condition stabilized and his vigilance was relaxed.
If I had been more active at the time, intervening aggressively in my father’s treatment plan, or taking him to a major hospital in Shanghai for advice, the situation might have been different.
The third is the loss of confidence after the tumor recurred.
In 2011, my father’s tumor recurred and metastasized to the liver. The whole family, including myself, fell into despair, thinking it was only a matter of time.
Conservative treatment decisions were made early when surgery was confirmed. In fact, after the relapse, the father survived for 2 years.
Later, I checked the literature and found that many patients with colorectal cancer that recurred and metastasized to the liver had a chance of long-term survival if treated properly. This makes me wonder if the decision to forgo treatment was a bit hasty at the time.
What influenced the decision at the time? I think the subconscious is still thinking about money.
Because, if you want to try new treatments, you need gene sequencing, the use of targeted drugs and biological macromolecular drugs, which is a huge cost, as high as 300,000-500,000. The problem is that Not necessarily successful.
With faith and overcoming financial difficulties, my father might have a second chance. Of course, for an average family with limited income, making such a decision is not easy.
Fourth is emergency medical care.
After the patient’s condition deteriorates, driven by the desire to survive, he is willing to try various treatments and drugs. Sadly, this human weakness is often exploited by scammers.
In the last days of my father, he was taken to a military hospital in Changsha by a doctor who issued small advertisements from the hospital many times, and he underwent radiofrequency ablation and Gamma Knife successively. There is no treatment for the condition. Not to mention the cost of tens of thousands of yuan in medical expenses, but also suffered great pain.
I have never seen my father who was a soldier cry, but I heard that during the radiofrequency ablation of the liver, he was in tears.
It is unbelievable to say that when my father was hospitalized in a traditional Chinese medicine hospital in Hunan, a newly graduated intern gave my father more than ten prescriptions without prescription rights. Vice thinks that the tiger and wolf medicine may be effective. It took me a long time to send my mother to a pharmacy outside the hospital to dispense and decoct medicine.
Although patients with advanced cancer are incapable of recovery, some of the rare symptoms that plagued my father may be related to these ineffective treatments.
I clearly remember that one night, I was awakened by the sound of hitting the wall. It turned out to be my father’s unbearable muscle pain, which was relieved by hitting his back against the wall. There is also a generalized burning sensation that makes people sleepless at night and has no cure.
In the final days of the patient, improving the quality of life is the most important thing, and these people are taking advantage of human weakness, defrauding people of money, and aggravating the suffering of patients.
As a family member of a patient, it is not easy to use white lies to comfort patients while avoiding costly ineffective treatments.
The fifth is the neglect of the patient’s spiritual comfort.
I think the words I regret the most in my life are the words I said when discussing targeted therapy with my father, and it was accurate and professional, and there was nothing wrong with it.
My father heard from the doctor that Erbituximab works well, but the price is more expensive, costing more than 200,000 yuan. He asked me if I spent so much money if I could be cured.
I said without hesitation that a cure was impossible, and introduced the concepts of gene sequencing, targeted therapy and prolonging survival. Before he could finish speaking, his father was silent.
Inadvertently, with my professional knowledge, I shattered my father’s hope of survival. How cruel! Do you sometimes feel that truth and science are so important?
After my father’s surgery, he often went to live in the village where he was born. And every day I go to my uncle’s pig farm to do high-intensity manual labor, and no one can stop him. Due to overwork, he even fainted once.
This behavior is incomprehensible.
After my father passed away, I chatted with a psychiatrist and learned that this may be a feared way to behave.
Obviously, my father was extremely frightened after his cancer, but as the head of the family, he couldn’t show it. Distraction can only be done by high-intensity physical labor.
Overwork and lowered immunity may be one of the reasons for his tumor recurrence and metastasis.
As a family member, the biggest mistake is not to take care of yourself psychologically.
In the United States, there are specialized education programs for families and caregivers of cancer patients to improve psychological comfort. In China, the spiritual comfort of cancer patients is more important.
In addition to the fear of death, the terminally ill patient also has the guilt that drags down the family, especially the huge medical expenses. Sometimes they voluntarily give up treatment, and in extreme cases, they commit suicide.
My father is a grass-roots civil servant and can reasonably be reimbursed for a large proportion of medical expenses. However, due to various reasons, the cancellation could not always be made in time, and my father was very troubled and nervous every day.
Once, he also mobilized me to send red envelopes to relevant leaders. As a child, it is necessary to relieve the patient’s guilt through psychological comfort and allow him to treat with peace of mind.
In the end, there is not enough care and companionship.
My father was 55 when he got sick, and he always felt like he was still the strong head of the family. NoAfter realizing that he is terminally ill, he is a patient who needs care and companionship.
I remember one time, when I came home from a hospital visit, I took him down a few streets to have lunch. I was talking nonstop on the way, and after a while, my father was leaning against the railing by the roadside with a pale face, unable to walk. I just realized how indifferent I was to my father.
My father’s last days coincided with the Spring Festival, and I took another 10 days off, so I spent some time with him at the hospital in my hometown.
I remember that on the day I returned to Shanghai on vacation, I left at 5 am because I had to take a relative’s car.
Father was awake as he said goodbye at the hospital, half-leaning on the bed without opening his eyes. When I said go first, he just “um”. Unexpectedly, this is the last dialogue between our father and son.
Two weeks later, I received a notice that my father was critically ill. On the way to my hometown, my father had closed his eyes forever.
Since leaving my hometown for college, my days with my father are numbered. I didn’t see each other for the last time, and the final explanation was fixed on the word “um”, which was hard to let go.
Before closing this article, it’s time to answer the title’s question: What’s the best medicine I’ve ever given my terminally ill father?
In the last three days with my father, I found that he was unable to sleep due to a burning sensation all over his body. But my light touch on his back can make him fall asleep peacefully.
The miraculous effect of this stroking surpasses all the drugs doctors have tried before.
This is the best medicine I have ever given to my terminally ill father, and I only gave it for three days.