TUESDAY JUNE 27 2000      PUBLISHED BY CHINA DAILY
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Facing death with dignity
By Tao Yungang

THE mention of cancer seems a taboo for most cancer patients, because the disease used to indicate certain death.

But for the strong-willed members of the Shanghai Cancer Rehabilitation Club (SCRC), to die or not to die is no longer the most important issue.

What they care about most is how to live their lives more happily and how to make others happy.

So they discuss the disease with less fear, share experiences of pain and happiness and try to live a normal life as healthy people.

With this kind of philosophy, they find their health improves. Some of them don't even need to use medicines any more.

Zhang Shoukang is one such happy survivor who recovered from advanced liver cancer, one of the most deadly varieties of cancer.

A cancer patient for 17 years, Zhang still does most of the household chores because his 72-year-old wife has a very poor memory.

"I enjoy doing housework, because it keeps me busy and moving," Zhang said.

He can sometimes be seen standing high up on a table cleaning the windows in the public corridor of their block of flats.

"The disease and the club made me realize that to be of any help to others can actually help me be happy and healthy."

Right now he thinks the best way he can help others is to be a good model, to show other desperate cancer patients that cancer can be conquered.

Three operations he had on his liver and lung have left three long, ugly scars which stretch almost right the way round his body.

Whenever the club asks Zhang to talk to patients hospitalized in Shanghai, he will go to great lengths, even if it means travelling by three different buses, to get to the hospital. Once there, he takes off his clothes to show patients his scars and comforts them by saying everything will be okay if they are willing to fight.

Zhang smiled as he talked about practising guolin qigong.

"I used to get up at three o'clock in the morning to practise."

Why? Because somebody told him that the air was at its freshest just before sunrise.

"I would walk around the park, inhale some fresh air and go into the park after it opened to practise qigong," Zhang said.

Now he doesn't practise qigong any more, he just does some relaxing morning exercises. "I think the gestures of qigong are too strict and complicated. I do most of the movements and that's enough."

He found the real worth of qigong not in physical exercise, but in the contact it gave him with other cancer patients. He found talking with them strengthened his mental state.

"Healthy people think we are too weak to do ordinary things. They always ask us to rest, to take medicines and eat very nutritious meals," Zhang said.

The club helps cancer patients realize they should live normal lives and not allow anxiety to rule their existence.

"The most important factor is still a good mood. Some group activities like those we do in the club can help achieve that," he said.

Young blood

SCRC has attracted many cancer patients in search of a better way to fight cancer since it opened in 1989.

At first, most of them were elderly patients. However, in recent years, a number of young patients have joined.

The club's activities are geared more towards older people but young patients still find them useful.

"I learned a lot from the club," said young womb cancer patient, Wang Yan.

Five years ago, only 15 years old at that time, Wang almost died.

"Blood was pouring out of me," she said, recalling the terrifying Saturday she was suddenly struck down.

"My uncle and aunt were shocked when the emergency doctor told them it was womb cancer."

Wang's Shanghainese mother was assigned with her daughter to the countryside of Ningbo in East China's Zhejiang Province to learn from farmers during the "cultural revolution" (1966-76).

"I had been back just six happy months with Shanghai citizenship, then everything seemed to collapse again when I was told I was dying."

Wang's womb had to be completely removed and she spent the whole of the following year hospitalized.

"I couldn't sleep, always worrying about recurrence," she said.

In order to take her mind off the disease, a fellow in-patient on her ward intro-duced her to the club.

"It was a totally new life," Wang said.

Club leaders, also cancer patients themselves, rushed around to comfort other patients, hold charity performances and organize activities in which cancer patients would help healthy people.

"You know what, I started not to care so much whether the disease would recur or not.

"My disease is nothing compared to what some people suffer through old age; but they still smile, sleep well and actively participate in social activities. Why shouldn't I?"

But what changed Wang's life most was help from Xie En, a student of Shanghai Conservatory of Music.

Xie was also a cancer patient. Before his death, he made his first and also his last CD.

He asked for all the money from the CD to be used to help 10 poor young cancer patients.

Wang Yan, who had had no room of her own but shared a one-room apartment with her uncle's family, was given some of the money.

"Xie En's donation enabled me to have my own home," she said, looking at a poster of a smiling young Xie En with his guitar.

Wang Yan hopes she can do something for the club and other cancer patients some day too.

"It is a pity most patients in the club are elderly and sometimes it is difficult for young patients to communicate with them."

"Maybe I'll live longer and become older so that I can be more help to them," Wang kidded.

High survival rates

The survival rate among members of the club has been increasing every year.

"Patients who have lived five years after they were diagnosed with cancer comprise 50 per cent of the total number in the club," said Li Shourong, one of the founders of the club.

She said that last year, only 200 of the total 5,000 members died. "This is very good compared with the high death rate among non-members."

Li, herself a survivor of advanced stomach cancer, said the most meaningful thing the club did was to let more patients understand that "cancer is not deadly."

We used to say that of 10 cancer patients, nine would die and the remaining one had been wrongly diagnosed.

"(Improved survival rates) have happily proved this wrong," Li said.

Li said the club was founded originally to teach guolin qigong.

But the organizers quickly found from their own experience that teaching qigong alone was not enough for cancer patients.

"We needed some knowledge about cancer treatment and psychological therapies," she said.

The organizers therefore expanded the club's services to include qigong education, psychological therapies, regular medical consultations and re-habilitation services.

"The conditions at first for the club were really poor. We had regular meetings at a stand selling bottled milk and had to bring foldable chairs to every meeting," Li said.

The club's successful activities soon caught the attention of enterprises and other organizations.

Many of them donated money and medicines regularly, and some offered property to be used as offices and training centres for cancer patients, said Li.

"I still remember how we used the first donation of 3,000 yuan ($360)," Li said.

The money, donated by 10 young actors and actresses in 1990, was handed on to Shanghai Juvenile Supervision and Education Centre, children cancer patients in Xinhua Hospital and a hotel used especially for provincial cancer patients seeking treatment in Shanghai.

Helping others

"We are being helped and we also seek to help others. That is what has supported our life in the past years and also will in future," Li said.

SCRC's model of rehabilitation has been named a "Group Model" by some social studies experts individuals fight together against one disease.

"Their model is successful, in my opinion, because all of their members are themselves cancer patients, even their director," said Zhang Letian, social studies professor of East China University of Science and Technology.

He organized his social work students to follow the development of this club for many years.

The students carried out research while volunteering to work for the club as social workers.

"They share the same understanding of the value of life: - ‘After all, we are dying. We'd better do something to help others."'

Disagreements rarely arise and most of them do things for free.

Some research has indicated that 30 to 40 per cent of cancer patients die solely because of physical deficiencies, but 70 per cent perish because they lose the will to live.

That is to say most of them are scared to death, professor Zhang said.

"But everyone is in the same position in the club; no one is pitied or over-cared for by others, so they can live without constant reminders of their sickness."

Copyright 2000 by Shanghai Star. All rights reserved.