BY WANG ZHEN
My mother does not know she has grade three brain cancer.
She knows she has brain cancer, and that the ugly thing needs to be taken out immediately. But she does not know how serious her condition is.
When she was hospitalized, my mother made an unusual, unscheduled quick video call to me. Being abroad in America, I’m 12 hours behind, and we usually had a regular time for family chats. When I picked up, she hesitated, and then said briefly that she was now in the hospital and was about to see a dentist. She was wearing a blue and white striped gown and a white Nike hat.
She told a half-truth to me then.
Ten days later, I flew home, and my mother had her first surgery. When the chief resident called us over, I was intimidated, and nervous. As I stood next to the surgeon in his office, my heart was pounding. The young surgeon had a serious look on his face, and said affirmatively: “Theoretically, she could live two or three years at the longest.” Then, he explained some standard cancer treatments and left. I became numb and forgot how my father and I made it down from the tenth floor of the neurosurgery department.
I’ve always known my mother to be brave and tough, but one of my aunts on my mother’s side told me later that she had swollen eyes the morning before the neurosurgery. When my mother asked about her prognosis, we told her that she had been diagnosed with glioma and encouraged her to cope with the treatments. “You will be fine,” my father and I replied unanimously. So we told her a half-truth as well.
My aunts and uncle on my mother’s side also read her diagnosis report. But they too told her she would be alright and consoled her on a weekly basis to make her happy. I noticed that they avoided mentioning words such as “death,” “cancer patient,” and “brain tumor” during their visits. They repeatedly told her: “you will be fine.” They were worried that my mother could not bear the pain of the truth. We weaved a fragile lie together, unanimously.
At one point, I sent an article on how family members should respond to cancer to one of them on a family WeChat group – China’s equivalent of Whatsapp. It was written by a cancer specialist, and I thought it would be helpful since we were all trying to understand cancer one way or another. However, he did not say “thank you” but sent me back a long text telling me “not to send info on cancer anymore, and please treat her as a normal person at home.”
Their psychological therapy goes like this: Tell her a white lie, or a half-truth.
I could not hold the lie anymore. For god’s sake, I thought, everything isn’t fine. Let’s face it. My mother has a malignant brain tumor and deserves to know the truth, just like how I deserved to know what was happening that day she first went to the hospital. I began to dismiss any articles with headlines like “Cancer can be conquered” from those relatives. I began to ask my mother about how she felt every day, and to talk about the side effects of the cancer drugs, and the growth of the ugly tumor in her brain.
When I began researching and saw the odds against us, I nearly gave up. I thought to myself: we don’t have sufficient bullets to declare war on this ugly thing. As a universally rare brain gliomas, anaplastic astrocytoma affects an estimated 5 to 8 out of 100,000 people, according to the American National Organization for Rare Disorders. In China, the disease affects about 5.8 per 100,000 people annually.
The high-grade tumor is also lethal, and survival depends on the age and molecular subtypes of patients. Among victims those like my mother, aged between 55 and 64, only 14 per cent live at least five years after being diagnosed, the American Cancer Society reports.
After learning this, I searched and searched for treatments that could help my mother. But the current treatments for her condition are inadequate and mainly focus on palliative care, rather than curing the cancer. My mother was already receiving the standard care available, but she was being treated in China, where the system is fragmented at best. I began to feel even more desperate.
According to a report from the Beijing Institute for Brain Disorders, the number of brain cancer patients in China is estimated to be 2,000,000 with 200,000 new primary diagnosis patients each year. Yet there are only 13,000 neurosurgeons in the country. In order to acquire the best neurosurgeon in town and allow my mother to jump the queue for a routine hospital procedure, we had to rely on our “guanxi” or social connections. Only then was she able to secure a surgery appointment so soon after her diagnosis.
In Europe and the United States, there are multidisciplinary teams that provide medical treatments collectively and keep track of cancer patients. In China, no such system exists. Once my mother underwent her one-stop surgery, we needed to contact oncologists and radiologists who worked in separate departments across the hospital and had no communication with each other. We also needed to figure out the risks, side effects, and remedies from their different and sometimes conflicting advice.
Another issue is the lack of availability and accessibility of effective cancer drugs. My mother’s neurosurgeon once told me the main difference between China and America when it comes to cancer treatment is that “We have good surgeons, not enough cancer drugs.”
I know that this cancer will cause my mother’s neurological condition and overall health to deteriorate. She will leave us – it is just a matter of time. I cried out of vulnerability and inability to change the situation.
I sensed that my relatives perhaps held the same feelings. We are in fear of death. We are secular, and while we do not believe in eternity or heaven, we hope that my mother can stay with us longer. The scarcity of medical resources is a weight we must bear, and we develop a self-protective mechanism against this cruel reality. We need to lie to ourselves, also to our loved ones, in order to carry on.
Telling half-truths is our way to console my mother and give her some positivity. There are no professional counselors to listen to her feelings and offer her advice. Nor are there any support groups for glioma patients near our home. We have only two weapons left for her to wage war with cancer: being positive and eating healthily.
My mother is extraordinary tough. She manages to get up in the mornings and clean the house even when the oral cancer drugs kept her up at night. “Need help?” I asked. She shook her head and continued to peel an apple.
We received some positive news before I flew back to America. My mother had not lost too much weight after her chemo and radio therapy treatments. Her latest MRI report also showed that her cancer cells had not grown too much.
I don’t know how long we can hold onto these half-truths. But before I left, my relatives promised not to lie to me about my mother’s condition. And for now, that’s enough.
About the author
Wang Zhen was raised in Xi’an, China. She was among the first group of young Chinese to travel New Zealand under the country’s working holiday schemes, and spent several years there exploring the land of middle earth. Before uniting with her husband in Pittsburgh, United States, Zhen worked for China Daily and the Guardian’s Beijing bureau. Find her on twitter: Hazelnutwz
About the editor
Jessie Lau is a writer, editor and researcher passionate about exploring gender, ethnicity, social policy and identity in China and other parts of Asia. Based in London and Hong Kong, she has written stories on everything from pro-democracy protests in Hong Kong and solitary confinement in Californian prisons to China’s massive boarding school program targeting ethnic Uyghur and Tibetan children. Now freelancing as a video news assistant at The Associated Press, her writing has been published by the The Economist, Quartz, and South China Morning Post, among others. She is a board member at NüVoices, a collective supporting women working on China subjects, and Online Editor-in-Chief of NüStories, its feminist magazine amplifying minority voices.
Twitter @_laujessie Website: www.laujessie.com