Her 20-year-old son is struggling with last-stage thyroid cancer, and she does not know who to blame.
Van, 44, used to love those photos of her son, Thinh, when he was in military service. He was tall and muscular in the green uniform. A few months after the service, he was diagnosed with last-stage thyroid cancer, which has metastasized to his bones. Within six months, his weight dropped from 80 kg to 60 kg and his legs were paralyzed.
Van says, bursting into tears: "I thought that at that age he should be ready to take care of himself soon. Suddenly he got the disease."
Thinh had many plans for his life. He had planned to work in Japan after the military discharge. This plan is postponed indefinitely.
In June 2023 he had surgery in Ho Chi Minh City to remove the growth on the thyroid. It was a physical battle for him and a mental battle for his mother.
She had her reservations about the surgery, fearing it could cause him to lose his ability to talk and walk. But the cancer caused Thinh so much pain that mother and son agreed to proceed with the surgery.
The surgery lasted six hours. Van stood outside the surgery room during that time, continuously chanting Buddhist prayers. When the surgery ended, she hastily followed a nurse to see her son.
"Mother," Thinh said on seeing her. Van cried and asked him to call her again, wanting to make sure that her son could still communicate normally.
She also asked Thinh to move his toes and shake his feet, to check his mobility, which was still intact.
After the surgery, Thinh planned to return to his hometown in the central province of Binh Dinh to visit his father and grandmother, who did not know about his problem yet.
But a week later he had to be admitted to the emergency room. He felt nothing from his chest down and could not move his legs.
Doctors concluded he was paralyzed.
"I felt so helpless," Thinh says.
"I used to be able to walk normally. Now, suddenly, it was impossible."
Soon afterwards Thinh began to convulse often, his legs twitching and twisting uncontrollably.
When it happened Van would struggle in vain to keep his legs straight. She even got some rope to tie Thinh’s legs to the bedframe to prevent them from twitching.
Feeling helpless as he gradually lost control of his body, Thinh frequently punched his legs.
"Why don’t they move?" he would ask himself.
With constant pain and the feeling of being helpless, Thinh became depressed for a while. He skipped meals, cried often, and had negative thoughts. It was the worst time for both him and his mother.
Thinh’s pains have been soothed somewhat after being admitted recently to the palliative care department of the 175 Military Hospital in HCMC.
The pains have decreased to 20% of the previous level, he says.
However, there is no treatment for his mental issues. Van is stressed out herself, but she says: "I have to remain positive to help my
son."
Dr Lam Trung Hieu, head of the palliative care department at the Oncology and Nucleology Center of the 175 Military Hospital, admits: "Healthcare staff are only able to somewhat alleviate the physical pains of patients. But mental pains remain mostly unaddressed for patients and families."
Mental care remains mostly at the discretion, experience and readiness of doctors and nurses. Even in special cases like Thinh’s, mental care was mostly limited to occasional conversations with doctors and nurses; there was no specialized mental care.
The mental pains of families like Van and Thinh are mostly forgotten in the healthcare system, and they have to make do on their own.
Research by Phan Canh Duy et al shows that 70-80% of last-stage cancer patients have a strong need for communication and mental support. They need to be taken care of and listened to. They need care, sharing, help to alleviate sadness and sorrows, and respect from people around them.
Dr Nguyen Manh Duy, deputy head of palliative care at HCMC Oncology Hospital, says patients with cancers and other chronic health problems frequently suffer from mental health issues and fall victims to stress, anxiety disorder and depression.
Some patients are neglected by their families, or suffer more severely due to their relatively young age.
Some patients give up treatment all together, worsening the suffering and making the diseases progress faster.
Some patients, who are beyond saving, can only receive palliative care to ease their suffering, improve well-being and give them enough strength to fulfill some dying wishes.
Duy says: "Some patients are in so much pain, they want to kill themselves. If the pain is controlled, the patients have more motivation to keep living and make the best out of their time on earth."
But it is not just patients who need mental health care, their families do too.
After the shock of learning about Thinh’s cancer, the news of his paralysis knocked Van down for a second time in two months.
She had to pick herself from a pit of depression and be the pillar for her son in his most desperate moments.
"As a mother, seeing my son like that is unbearable. He is just 20 years old. If I can, I will take every disease, every pain for him."
According to research by Asres Bedaso et al published in the Psycho-Oncology academic journal in 2022, two out of five caregivers for cancer patients suffer from depression.
The declining mental health of caregivers leads to weakening of both physical and mental status, causing an overall decline in the well-being
of the caregivers.
Thinh’s medicines cost VND10 million (US$400) each month despite insurance coverage.
Worried about the family situation, Van’s daughter dropped out of Quy Nhon University in Binh Dinh and moved to HCMC to work as a waitress to support the family. While this brought a measure of financial comfort, Van blamed herself again for not being able to take care of her daughter either.
Just as when Van and her two children began to get used to their struggle, in late 2023 her husband suffered a stroke, his third.
Van faced a hard decision between returning to her hometown to take care of her husband or staying in HCMC to take care of her son.
"I thought long and hard. Choosing between my husband and child; it was just impossible."
She eventually had to ask their relatives to take care of her husband. Her son’s needs were more dire.
She had become the pillar of the whole family.
According to research by Nguyen Xuan Long et al in 2021 funded by the Ministry of Science and Technology’s National Foundation for Science and Technology Development, sadness and anxiety are two common emotions for caregivers of cancer patients: 80% feel anxiety and fear and 60% feel disappointment and worry for prolonged periods of time.
Other negative emotions such as hesitation, concern and anger appear occasionally or frequently, depending on the well-being of caregivers and patients.
"The uncontrollable pain causes horrible feelings in patients. It creates helplessness and trauma to caregivers, leaving lasting painful memories," Dr Truong Nguyen Phuong Quynh, researcher in healthcare policy and management at the Health Science Center of VinUniversity, says.
According to Huynh Thi Thu Trang, head nurse at the palliative care department in HCMC’s Cho Ray Hospital, palliative care soothes patients both physically and mentally, giving them the will power to fight through subsequent treatments and their final days.
But not every doctor or nurse has the capability to provide proper mental health care in these circumstances.
For example, in her department, with five nurses per shift, each taking care of 20 patients with various needs, emotional counseling is a luxury, she says.
Besides, healthcare staff are not equipped with sufficient training in dealing with the emotional hardships patients and families deal with.
According to Dr Le Dai Duong of the HCMC University of Medicine, the need for comprehensive palliative care for patients and their families could be addressed with the participation of social and spiritual support workers along with doctors, nurses, psychologists, and rehabilitation specialists.
But such interdisciplinary works remain very limited in Vietnam.
This model was first developed in Vietnam in February 2020 at the geriatric-palliative care department of the HCMC University of Medicine Hospital.
In the beginning the group operated fairly frequently, meeting once a week. At the meeting, the group would pick several noteworthy cases in the department to build a comprehensive treatment plan for patients and families, including mental care. However, after operating for a while, the group had fewer meetings, mostly due to lack of resources.
A member of the group and head nurse at the department, Ho Thi Quynh Duyen, says mental palliative care is taken lightly by the healthcare system.
Some patients and healthcare staff think there is no point in trying anymore in terminal cases. But Duyen says mental pain needs to be addressed as much as physical pain.
"Palliative care consists not of only pain relief, but also mental preparation and planning for the inevitable end of the patient. Both the
patient and family need this."
Van’s life is now centered around Thinh. She helps him take medicines at 5 a.m., breakfast at 10 a.m., lunch at 3 p.m., and medicines again at 3:30 p.m. He has physical therapy and a massage at 5 p.m.
A year into the treatment Van and Thinh have started to find small daily enjoyments. Every time she massages Thinh, she would touch a
toe and make him guess which one she was touching.
Every time he makes a correct guess, Van dreams one day his legs will become functional again to whatever extent possible.
Every night, sitting on a foldable bed in the living room right next to her sleeping son, Van opens the Buddhist scriptures and chants them line by line.
Since Thinh’s diagnosis, faith has become a pillar for Van.
"Chanting Buddhist scriptures gives me the will to live."
They are possibly her only peaceful moments and give her the will to soldier on.
Content: May Trinh, Le Phuong, Le Nga
Photos: Phung Tien
