I cried, uncontrollably. As relatives and my parents’ colleagues whispered to each other in the corridor, I heard someone ask: “Will you consider having another child?”

A voyage of discovery

Five months after surgery, I found my medical report in a drawer in my parents’ bedroom. I had been looking for it when they were away. When I saw the Chinese characters for “cancer”, I felt like I’d been struck by a thunderbolt. I quickly closed it and pretended that nothing had happened.

It became my family’s “elephant in the room”. We never spoke about it until after I had written this recollection.

My mother would repeatedly tell me that I was OK. My parents insisted that my tumour was not cancerous and that the chemotherapy was only a precaution. I chose to believe them rather than think too deeply about it. When I searched for information online and learned otherwise, my hands shook.

Why can’t we talk about it?

Nearly a decade later, I learned that I wasn’t the only teenager having a hard time with their parents telling them things. In China, family members choosing to avoid talking about upsetting facts is “quite common”, according to Dr Li Chi-kong, professor of paediatrics at the Chinese University of Hong Kong.

“Parents like to protect their children from any forms of suffering,” he said, because they worry the child may feel upset and lose confidence during treatment.

“But we have to abandon this idea,” Li added, “because this may cause the child to lose trust in their parents.”

When you’ve just beaten cancer and your classmates shun you

The main issue, says Liu, is public education. “Society needs to improve the knowledge and recognition of cancer as well as other serious diseases, because there is still a kind of stigmatisation of this illness in our society.” For example, a Chinese education ministry advisory lists a range of diseases, including malignant tumours, that could prohibit a student’s admission into university.

Cultural differences help to explain the reason Chinese parents avoid upsetting news. Unlike the individualistic decision-making habits seen in the West, the Eastern pattern of decision-making is more familial, according to research conducted by Fan Ruiping, professor of bioethics and public policy at the City University of Hong Kong.

From a Confucian view, he said, each family member belongs to the family and depends on the family – in other words, a family member’s illness is a family issue, and all must undertake special fiduciary obligations to care for the sick individual.

“I certainly don’t mean to be blaming doctors or your parents, or any teenager’s parents, because I truly believe that everybody was trying to do the right thing,” said Bradley Zebrack, associate professor at the University of Michigan School of Social Work in the US, who recovered from Hodgkin’s lymphoma diagnosed at the age of 25.

“Even though it’s difficult to tell a child about the severity of their situation, it is more harmful to not tell them, and the harm of not telling the truth has much longer and serious implications,” Zebrack added.

Parents often have the highest moral motives for not telling children about their illnesses, Zebrack said. “Your parents were trying to protect you. That desire to protect each other is coming out of love, it comes out of being human ... But I would say that what they did was wrong.”

Liu agrees it is best for parents and children to have more open communication and to face the challenge together rather than either side pretending “not to know”.

“If we all avoid talking about it, it will only strengthen the fears,” Liu said.

Building emotional support

In China, counselling programmes and social work support are in their infancy. In Shanghai, general hospitals are equipped with one medical social worker for every 300 to 500 beds, and paediatric, mental health, oncology, rehabilitation and other specialised hospitals are equipped with one medical social worker for every 100 to 300 beds, according to the Shanghai Municipal Health Commission.

The young cancer survivors at risk of depression and PTSD

According to the Association of Pediatric Oncology Social Workers, the allocation in the US is one social worker for every 25 beds. “We should have one social worker for every 50 beds in China. This is the way we have to go,” said Liu.

Non-profit organisations and social workers can also help. The New Sunshine Hospital School Project, set up by Liu’s foundation in 2012, provides child patients relevant education and help in solving interpersonal, social and psychological problems because of their long-term hospital care. The programme has set up 38 hospital schools in 15 Chinese provinces.

I am among the lucky cancer survivors – my cancer disappeared and I am in good health. Still, my parents and I might have benefited from a solution Liu suggests for alleviating anxiety in newly diagnosed paediatric patients and their families: meeting other children who have recovered from cancer, to boost patients’ morale – and their parents’ confidence.

I am ever grateful for my parents’ love and support. I recall my father’s reply when asked if they would have another child. “No, having Xue is enough for us,” he said firmly. When I asked him later if I had been a burden at that time, he said: “You are the best gift God has given me.”

Chloe Feng is a graduate of the master’s programme at the Journalism and Media Studies Centre at the University of Hong Kong.