Saturday, April 18, 2009

Alice in Cancerland

“Sometimes we are too engrossed in the grand political narratives, and we lose sight of the ordinary Sarawakian. The following story below about a sick Sarawakian lady makes up for that neglect. - sky”
By Keruah Usit

Alice was already a young mother when she found out she had cancer of the nose. She was in her mid-twenties, 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 pretty smile and dimples to her two little daughters.

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

Alice lived by a river in rural Sarawak, three hundred kilometres (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 two hundred Ringgit it cost to get to Miri Hospital.

The Penan way of life
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 - depended on the rainforest, not for eco-tourism and adventure, but for life itself.

Alice had never even seen a fifty Ringgit bank-note, but she had led a good life, until she grew a tumour the size of a hen’s egg around her eye, and suffered continually from a blocked nose. Alice was alarmed. She walked an hour to the closest rural clinic, a standard government-issue, ancient, wooden house on stilts.

Need to be treated in 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,” the young nurse had told her. The nurse repeated the same mantra, week after week, to all her patients needing hospital care.

Alice knew patients were only moved 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, Datuk Dr Chua Soi Lek, was asked why the Sarawak helicopter “medical evacuation” service had been interrupted, he was quoted by several newspapers as saying the contract had been awarded, by the Ministry of Finance, and 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.

Finally, to Miri
Eventually, six months after the onset of the swelling, Alice met four doctors in her own home village - a surprise. 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 twenties like Alice, made a diagnosis of nasopharyngeal carcinoma. She accompanied Alice and Abel on the long journey to Miri.

Alice had never been to the loud, alienating oil town, Miri. She was terrified. 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 sent on to Kuching, the capital, for radiotherapy and chemotherapy.

Then to Kuching
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’oh, to the clods of grey rice served up on grey trays with plastic compartments, but they persevered with the treatment.
After six weeks of radiotherapy, chemotherapy, and unspeakable 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’oh. Her winning smile returned.

A day at the beach
A local volunteer took her to Santubong beach, for 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.

Abel and Alice walked, too, 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.

More treatment
Soon afterwards, Alice and Abel 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 operation, 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’oh 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.)

Doctors!
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. Her doctors were unaware, and a few doctors were perhaps unperturbed in their ignorance, that Alice’s retching could have been prevented easily.
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, 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.

The Cancer Returned
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.

Death in dignity
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 by 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 children.

Alice’s story, of deprivation of basic health care, is echoed all over Sarawak, Sabah and parts of Peninsular Malaysia. Alice never had the benefit of a quick diagnosis. Nose cancer can be cured if it is found early.

Enforced Silence
Our national health care system, flawed though it is, does reach out to many women like Alice, but access to basic health care 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 Peninsular Malaysia 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 twelve 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!

Copied en-bloc from Hornbill Unleashed.
Tags: Penan, Orang Asli, Sarawak, Cancer

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6 Comments:

Blogger Kay Leaf said...

~*sob*~

18 April, 2009 18:32  
Blogger coolcoolbird said...

I $sending you a $$mile

18 April, 2009 20:58  
Blogger Bengbeng said...

Living in Sarawak I can understand what you are talking about. About their way of life and their quiet unassuming dignity. Her death was so unnecessary. They have nobody to look after their interests by quarters who prefer to keep it that way.

18 April, 2009 22:14  
Blogger Johnny Ong said...

kay - no hankie for u

coolcool - sending it to kay, is it?

bengbeng - its a pity that after so many yrs of being independent, the country can't even provide proper mode of transport or medical facilities

19 April, 2009 16:33  
Anonymous Janeh said...

Very sad.. how the life of a penniless lady would worth less. my mom is a volunteer at palliative care centre back in miri. she once told me how happy these ppl are and how they are often smiling, even to the point of facing death. and how they are always grateful for any help offered to them. may these souls be rested and united with Him who loves and sees all.

29 April, 2009 00:47  
Blogger Johnny Ong said...

janeh - what an experience yr mom has went thru. these people have simple life

18 May, 2009 22:44  

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