About Me

I have done a lot of things in my life and have also worked in many different jobs to make a living and to experience life. This blog is just some of my musings, sometimes funny, sometimes inspirational, sometimes sad, sometimes angry, sometimes simple but all the time, it's just me.

Wednesday, April 15, 2009

Alice in Cancerland

The following article is taken from Malaysiakini and written by Keruah Usit. I have copied the article en-bloc because I feel it is a story to be heard. It is not a entirely happy story, but sometimes these stories need to be told.

Keruah Usit is a human rights activist - anak Sarawak, bangsa Malaysia. His ‘The Antidote’ column, which will appear in Malaysiakini every Wednesday, is an attempt to allow the voices of marginalised people to be heard all over Malaysia. The writer can be contacted at keruah_usit@yahoo.com. Here is the story:

Alice was already a young mother when she discovered she had cancer of the nose. She was in her mid-20s, the target age of trashy magazines and ‘natural-looking cosmetics’. She had a shy smile and dimples in her cheeks, and she had passed on her traits to her two daughters.

Alice’s husband Abel, a hunter and farmer, loved her, and, unlike many other husbands, listened to her. Her small children hung on to her every word.

Alice lived by a river in rural Sarawak, 300km (as the helicopter flies) from the nearest hospital. She had noticed a swelling growing around her left eye for six months, but she could not afford the RM200 trip to Miri Hospital.

After all, Alice was a young Penan mother with no cash income to speak of. Her parents had been born in the rainforest. Her grey and stooped father still went out hunting, carrying a blowpipe and a machete, with a surprising spring in his step.

Alice loved her Penan community; they were close-knit, ready to share, and they looked after their neighbours’ children as a matter of course. Alice, one of 15,000 Penan forest-dwellers - like many other indigenous people in Sabah and Sarawak, and the Orang Asli in the Peninsular - depended on the rainforest, not for eco-tourism and adventure, but for life itself.

Alice had never come across a RM50 banknote, but she had led a good life, until she grew a tumour the size of an egg around her eye, and suffered continually from a blocked nose. She was alarmed. She walked an hour to the closest rural clinic, a standard government-issue, ancient, wooden house on stilts.

‘We can’t pay you to go to Miri’

The nurse there, a girl her own age, advised her to go to Miri Hospital.

“We have no budget allocation to pay for you to travel to Miri,” she told Alice. The nurse repeated the same mantra, week after week, to all her patients needing hospital care.

Alice knew that patients were only flown to Miri by helicopter in emergencies, such as obstructed labour. Even then, the helicopter service was unreliable – it had even ceased altogether, for an entire year, without any explanation offered to the nurses or the villagers.

When the health minister at the time, Dr Chua Soi Lek, was asked why the Sarawak helicopter ‘medical evacuation’ service had been disrupted, he was quoted by several newspapers as saying the contract had been awarded by the Finance Ministry, not his own ministry, to a company that owned no aircraft. The well-connected owners of the helicopter company, as nimble as a dodo, were still paid handsomely as stipulated in the contract.

Eventually, six months after the onset of the swelling, Alice met four visiting doctors from Kuching’s Sarawak General Hospital. The doctors had taken leave and had raised their own funds to visit several remote villages, including Alice’s.

A kind doctor from Kuala Lumpur, in her 20s like Alice, had diagnosed that the young Penan mother was suffering from nasopharyngeal carcinoma. She accompanied Alice and her husband, Abel, on the long journey to Miri.

Alice had never been to the loud, alienating oil town of Miri. She was terrified. In Miri Hospital, the ear, nose and throat doctor took a biopsy from her nose. She waited almost a month for a CT scan appointment.

The scan results were disheartening: the cancer had already eaten its way into the base of her skull. Alice was subsequently sent to Kuching for radiotherapy and chemotherapy.

She was, once again, in a strange place, but at least Abel was with her. Abel spent his nights sleeping on a hard armchair in the visitors’ room near the cancer ward. Alice shared her trays of food with him.

When a kind nurse was on duty, Abel would receive his own portion of food. Alice and Abel preferred their own harvested sago pith, or na’o, to the clods of grey rice served up on grey plastic trays, but they persevered with the treatment.

After six weeks of radiotherapy, chemotherapy, and unpalatable food, the swelling around Alice’s eye vanished. She started to eat almost normally.

Local volunteers drove her around town, urging her to try kolok mee, Kuching’s famed noodle dish. Alice ate noodles for the first time in her young life – and liked it almost as much as na’o. Her winning smile returned.

She had never seen the sea

A doctor took her to Santubong beach as Alice had never seen the sea. Alice was delighted, feeling the sand beneath her bare feet, laughing and skipping away from the water as the waves swept in, almost dancing on the shoreline.

Alice and Abel walked among the trees near the beach. They murmured to each other, pointing out plants, those familiar and those less so, to each other. They wandered hand in hand along the concrete path beneath the quiet canopy, longing for their own forest, the forest they knew so well, far away.

Soon afterwards, the young Penan couple were sent back to Miri for Alice to have five more cycles of chemotherapy, one dose a month.

The doctors did not offer Alice and Abel contraceptives – an awful oversight, you might say, and less rare than you might think. Alice became pregnant. The doctor advised Alice to have an abortion. She recovered from the procedure, but her chemotherapy was delayed for several weeks as a result.

Alice and Abel were allowed to visit their small children on two or three occasions – you can imagine the joy of those embraces, and the meals of na’o and wild game shared.

But Alice dreaded each return to the urban hospital. There was the occasional encounter with a vicious nurse or accounts clerk, berating her and Abel for not paying their hospital bills. She would explain, head bowed, quietly and patiently, that she could not afford the bills.

Most Malaysians know little of the lives of indigenous people. This has not been helped by the government hype surrounding announcements of Internet access in rural communities: ‘e-jekitan’, ‘e-bario’ and the like. One might be led to imagine the Penan carrying iPhones through the forest, tracking wild boar using GPS.

There was also hardship for Alice, when she had to endure nausea, caused by the inexperience of her doctors in the use of potent medicines such as platinum. Her doctors were unaware, and a few doctors were perhaps unperturbed, that Alice’s retching could have been prevented easily by giving her one of the newer anti-histamines.

Alice never complained about her difficulties, and her doctors never learned to ask her about her symptoms – in Penan, or any other language.

Home at last

Yet Alice and Abel stayed the course. Alice’s cancer was in remission, and she was able to go home at last. She returned happily to caring for her daughters (right), and began sending her older daughter to school, walking an hour to school with the little girl, and walking an hour back home after classes.

But the cancer returned two years ago. Alice was offered chemotherapy again, for palliation, but she declined politely. She preferred to stay at home with her children. She talked it through with Abel. To Abel’s credit, he supported her.

Alice took to covering the swelling around her eye and in her neck, with a towel. Towards the end of her life, she found it painful to swallow. A volunteer doctor visiting her village gave her pain relief, and some comfort.

Alice understood she did not have much time left, and she lived with dignity. She remained in her small house with Abel, her parents and her children. She cooked for her family and weaved baskets by daylight and under the timid light of a kerosene lamp at night.

She died at home a year ago. Abel, with the support of Alice’s parents, is bringing up the young ones.

These are Alice daughters, two young girls now without their mother because of lack of health care in Malaysia. Are we going towards development and being a developed country in 2020 or are we really stuck in reverse gear. Does our people develop or we just keep building infrastructure after infrastructure.

Alice’s story, of deprivation of basic healthcare, is echoed all over Sarawak, Sabah and parts of Peninsular Malaysia. Alice never had the benefit of a quick diagnosis. Early treatment of nose cancer often leads to complete cure.

Our national healthcare system, flawed though it is, does reach out to many women like Alice, but access to basic healthcare remains desperately unequal, and under-funding is painfully obvious.

Alice and Abel never had the opportunity to have their voices heard. The rural poor, Iban, Bidayuh and Orang Ulu in Sarawak, Kadazan, Dusun, Murut in Sabah, plantation workers and Orang Asli in the Peninsular suffer the same enforced silence.

Urban Malaysian voters, on the other hand, have finally found their voice, and have become increasingly vocal in the last 12 months. Our political institutions have had no choice but to respond, albeit in a distorted and confused way. But will the voices of our dispossessed rural population ever be heard?

May Alice rest in peace!

Take care and be well.


Ser said...

So sad but so true...
The Penans, orang ulu, Ibans etc are really left behind although they come under the category of 'bumiputera'. Our government really take these people for granted and 'rape' their forests which happens to be their bread and butter.

The so called government also make arrangements to asimilate these people into the urban world but without a long term plan. In the end, these people are so dependent on others to get by (in terms of food and medicine) because they have lost their art or living a healthy life in the jungle ....


Anonymous said...

Dear Nilesh,

I do not mind your posting the article at all. Please remind your friends to continue to support worthwhile efforts like Mercy Malaysia in Miri, www.mercy.org.my and Medecin Sans Frontieres www.msf.org.

Also have a look at a Sarawak blog, www.hornbillunleashed.wordpress.com.

Warmest regards,
Keruah Usit

Nil said...

I had written to Keruah to ask for permission to publish his article and he sent me the reply which I have posted as a comment. Maybe there is something we can do as individuals through Mercy Malaysia and Medecin Sans Frontieres.