Home life is often a casualty during intense period

Behind China's millions of cancer patients are an army of devoted family members taking care of them, giving comfort and dealing with high bills, while battling with their own stress, frustration and frequent self-blame.

Liu Xingyi, 29, whose mother was diagnosed with ovarian cancer in 2014 before passing away the following year, reveals the story of her family battling cancer and what it means to have a loved one with the illness.

"Cancer patients and families have a burning will to share the burden and help each other, and just talking with friends who undergo a similar experience makes them feel supported and understood," says the woman from Jiangsu province.

Within half a year after surgery and chemotherapy at a local hospital, her mother's cancer returned.

They went to Shanghai, a city with more medical resources. Top medical institutions are highly clustered in Beijing, Shanghai and several major cities, but this means that these hospitals are overcrowded and quality medical care is difficult to access. Doctors, patients and accompanying family members are all under stress.

When Liu asked, in a WeChat group of cancer-hit families, whether there was a way she could get an earlier registration number, a woman two years older than her offered to transfer one she wouldn't have to use.

The woman invited Liu to dinner at her home, a small, shabby apartment in an old building near the hospital, rented by the day, specially for patients and families coming from other parts of the country like them. The woman was from Central China's Henan province, unmarried, and her advanced ovarian cancer had gone into relapse.

Liu donated some money, but before long, heard about her death via a post on WeChat.

Today many young patients, and family members of cancer patients, are sharing their experiences or seeking support and comfort online.

WoshiCathy has posted three of her journals on Q&A and knowledge sharing website Zhihu about the time she accompanied her father, who was battling gastric cancer, and received more than 3,000 likes.

Apart from care experiences, treatment details and explanations of basic medical concepts, she also shares her thoughts and changes of emotion, as well as recounting dialogues with the doctors and interactions between family members.

Hundreds of people encourage her with their comments, or say they gained knowledge and strength from her words.

For Liu, the trauma has remained.

In those days, Liu's father continued to work as usual, earning an income, cooking for her mother and commuting between hospital and home taking care of his wife, while Liu had been looking through materials, from domestic sources and the United States National Comprehensive Cancer Network guidelines, to various medical research papers and clinical cases.

She also looked at all kinds of anecdotal and "secret" folk remedies, hoping there was one that was credible and effective. In despair, the doctoral candidate, majoring in mechanical engineering, even resorted to fortunetelling and Taoist rites.

To make full use of the limited briefing time at the hospital in Shanghai, she presented graphs and line charts of data she summarized to show the cancer development and introduced her mother's medical history in a simple and clear way.

"You're so considerate, but it's too late," doctors said.

Over the years, Liu has felt guilty that what she did could not benefit her mother nor lessen her pain. She remembers the time when the cancer returned, Liu tried hard to find proof that the cancer antigen indicator CA125 going high again was just an accident, before her mother bluntly pointed out she was just not strong enough to face the reality.

Sometimes, she wondered whether it was her resistance that delayed the treatment, thinking it must be hard for her father to bear the loneliness since her mother passed away.

WoshiCathy also noted that she was not even 25 years old when her father was confirmed to have cancer, too young to have adequate savings, and she dreaded the day she had to say, "sorry dad, I cannot afford the medicine".

It's common that patients don't trust doctors, and the doctors are not satisfied with the patients, considering the high expectations and expenses patients bear and the heavy workload of the doctors, Liu says.

As the family member of a cancer patient, Liu is aware that doctors and medical science are not omnipotent, but she expects the doctors to generally follow the guidelines and be able to acknowledge their own limitations and ask for help.

According to the World Health Organization's International Agency for Research on Cancer, China's 4.57 million new cancer cases in 2020 account for around 24 percent of the global total, corresponding with its population proportion. However, among the 9.96 million cancer deaths worldwide that year, the country had 3 million.

Wang Xing, a Shanghai-based thoracic surgeon who has recently published Bingren Jiashu, Qing Laiyixia (Excuse Me, the Doctor Would Like a Word), says that Chinese doctors are trustworthy and very good at doing surgery because there are a large number of cases upon which to operate.

He has been attending and speaking at the World Conference on Lung Cancer annually from 2015 to 2019, saying that he observes that around one-third of presentations shared during the event come from China.

However, creating an early screening mechanism and encouraging new drug research and development are key to improving recovery rates that are currently relatively lower than that of developed countries, Wang says.