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April 3, 2011

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Bravely blogging about breast cancer

Many people struggle valiantly against terminal cancer, but few people blog about their daily setbacks and triumphs, embrace life and give hope to others.

Death and cancer are seldom spoken of in China, and breast cancer is an extremely sensitive subject.

But one who speaks out and blogs is Yu Juan, 32, who was diagnosed with advanced breast cancer more than a year ago.

Over 2.5 million people have visited her blog. Yu was brilliant, happily married and had recently given birth to a boy. She had been teaching social science at Fudan University and had a bright career ahead.

"My life was totally ruined in the eyes of other people, but I don't have so many complaints. I try to embrace suffering and find happiness," she recently wrote in her diary-blog that has everyone talking and publishers interested.

She has become a celebrity and her followers track her every small success, pain and musing about life and death. They send folk remedies and costly herbs like ganoderma and cordyceps. They raise funds and more important to Yu is that some try to follow her advice and lead healthier, more balanced lives.

While most readers draw inspiration from her sometimes raw writings, a few critics say she should suffer in silence, saying all this publicity about death and illness is unseemly and makes her family suffer.

But Yu told Shanghai Daily she wants to record her pain, her tender moments with family, even her experience with a cancer-cure charlatan who nearly killed her.

"I want to encourage other people and their families who are also dealing with a terminal illness," she said.

She dresses in bright red, an auspicious color in China, and though she is thin, she is animated. She also has studied traditional Chinese medicine and it is part of her therapy.

Speaking about her tell-all and introspective writings, Yu said: "It's as if a person has bleeding wounds all over her body and takes off her clothes to show everyone." She makes a gesture as if ripping her shirt off.

"Through my diaries, I hope more people will realize the tragedy that ignoring their health may cause. It may be the only significant thing I can do now."

Some psychologists say Chinese take an "ostrich" attitude about death, refusing to acknowledge reality.

They say Yu has a healthy, realistic and life-affirming attitude. She helps others, in turn they support her.

Doctors don't know what caused her cancer; she has no family history and was always healthy. She had just happily breast-feeding her son when she was diagnosed in late 2009.

In China, breast cancer is by far the leading cause of women's cancer deaths and the rate is rising. In Shanghai, 69 out of every 100,000 people have breast cancer; the mortality is 16 out of 100,000 people.

In comparison, 20 out of 100,000 people had breast cancer and nine out of 100,000 people died of the disease in the 1970s.

Many doctors say stress, unhealthy living, tainted and junk food and environmental pollution are factors.

Yu examines her past unhealthy habits that she thinks contributed to her illness. She didn't lead a balanced life. She stayed up too late or all night studying, getting stressed and eating too much, especially too much meat, red meat. Her father is a chef and she used to eat various exotic fare such as peacock.

She urges women not wear tight bras and clothing that constricts their chest and breasts. She says that hurts blood and energy circulation.

And, of course, women should get regular mammograms and be alert to any changes in their own breasts.

She had it all

Yu is a native of Shandong Province. She holds PhD in economics from Fudan University and holds master's degrees in related fields. She studied at the University of Oslo, Norway, before landing a job at Fudan University. Before her diagnosis, she had won grants for four national and province-level research projects. She planned to apply to Harvard as a visiting scholar. "I felt everything was just getting started," she blogged. "My 14-month-old son had just learned to call me mom and I could use my income to buy new clothes for my parents."

By the time she was diagnosed, the cancer had spread throughout her body. Surgery was not an option but she said she is glad she isn't losing her breasts. Still, even slight movement can cause pain.

Yu underwent painful chemotherapy every month, dutifully blogging about the severe reactions and vomiting. Several times she almost died. Doctors did not expect her to be alive today.

But she's back home and goes to the hospital for chemo every month.

"I didn't cry. I believe I can go on living if I persist," she said.

Sometimes she does cry, as when her son toddled to her and sang the famous Chinese song, "Mom is the Best in the World."

Imported medicine is costly and not covered by insurance. Each injection every 21 days costs 25,000 yuan (US$3811); another drug costs more than 10,000 yuan for 14 days.

Her 37-year-old husband, nicknamed "Baldie" (he's bald) is an associate professor at Shanghai Jiao Tong University. They sold their only apartment to pay medical bills; her parents sold their Shandong home and moved to Shanghai to care for her. Everyone now lives with her husband's sister's family.

With dark but realistic humor, Yu and her husband sometimes discuss the future and she asks whom he will marry after she dies and who is his ideal. He jokingly but sadly replies Fan Bingbing, a famous actress. A friend says if her husband doesn't treat her right, he will marry her.

When she was hospitalized, Yu's father woke up at 4am to boil traditional Chinese medicine and take it to her on the first bus.

Her son reminds her to take medicine.

Devoted friends open microblogs and seek donations. Her colleagues carried out her research and sent her the payment.

But Yu has also seen cruelty.

In the hospital she heard a man complain about his sick wife and hope for her early death. A woman said her daughter hasn't visited in seven years and only sent a fruit basket when she heard of her illness.

Yu herself was taken in by a female fraudster, a cancer survivor who conned desperate patients with a "hunger therapy" cure. They lived in the Yellow Mountain area and ate only overripe grapes and taro; it cost 35,000 yuan a month. Of three patients, she alone survived, just barely, losing 20 kilos. Doctors were amazed.

"You would think since this cheat had gone through cancer she understood pain, but money was more important than human lives," Yu said of the charlatan.

"The most dreadful thing is not cancer, not the Japanese earthquake. It's the human's heart," she blogged.

Yu quotes Nietzsche: "What doesn't kill us makes us stronger."

"The three most painful things in life are losing your mother when you're a child, losing a spouse in middle age, and losing a child in old age," Yu blogged.

"If I die, my parents and husband and son will face these agonies. I must continue my life for them," she said.

"Why did I get cancer?" she asked. "The question makes a happy hospital ward go silent, then tearful. Some aunties weep, some curse God for making good people suffer," she wrote.

Her blogging has moved many people and some professionals in high-stress jobs say they are rethinking their lives.

Yu lives in the moment. "I am happy all the time," she said. "Including at this moment."

Praise from psychologist

Psychologist Wu Gonghong at Fudan University applauds Yu's attitude and says people can learn from her honesty.

"Death is kind of taboo to Chinese," he said. "We seldom talk about it and students are not taught about facing death when they study. We think death is distant and take an 'ostrich attitude'."

Studies show some distraught cancer patients suffer mental breakdown before their immune systems collapse.

"Yu's optimism, peaceful embrace of setbacks and strong desire for life has touched people and taught a vivid lesson about how to face death," he said. And encouragement from millions of people has also given Yu the power to struggle.

"Though she may be incorrect in linking her disease and staying up late and pursuing a big house and car, still it's good that many people draw a lesson and try to adopt healthier lifestyles."


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