Friday, 4 September 2015

Putting on a Brave Front

MAKNA (Majlis Kanser Nasional)- Official Page's photo.
When MAKNA visited Noreen Mundun AK Baji’s household, it became somewhat of a running joke that the family didn’t seem to know each other’s age. You probably can’t fault her 68-year-old father for getting his wife’s age wrong, much to her amusement. But even Noreen is not sure how old her elder sister who lives with them is. She hazards a guess of around 28 or 29. Later when her sister joins us for dinner, Noreen giggles in embarrassment when her actually 25-year-old sister playfully chides her for being off base.
Despite all the confusion about age in the family, one thing Noreen’s mother, Sambai AK Manggi, knew for sure two years ago was that her youngest child was not old enough to be having a bloated belly and suffering from nausea. The then 15-year-old Noreen was also experiencing frequent fainting spells, which often occurred while she was in school and once, when she was at the supermarket. Her teacher would call her parents who would have to take her home from school, disrupting her studies.
That wasn’t the only problem plaguing the already bewildered student. “My mother angrily asked me if I had been up to no good,” says Noreen. “I felt like crying.” She could not fathom what was wrong with herself. Aside from nausea, blackouts, and a distended stomach, she also began to feel tired easily. “I did not have the strength to walk,” Noreen continues. “It hurt here,” she points to her knee.
She was taken to a private clinic for an ultrasound to determine if her mother’s worse suspicions were true. When the doctor told her it was probably something else, it provided cold comfort. It was awhile before she got a proper diagnosis and it would be one that sent her further into a tailspin. When Noreen was told she had Stage 3 Burkitt Lymphoma, a rare form of lymphatic cancer in this part of the world, she was at a loss for words. She admits the tears flowed freely when the doctor informed her that she probably only had three years to live.
Her parents, however, refused to give up on their child despite their limited means. Sambai was the sole breadwinner in the family through her income of RM800 a month from her job as a cleaner at Shell. Her father, Baji AK Gatal had hung up his employment hat due to his age and own health problems. He is currently on medication for high blood pressure. But it never deterred him from seeking help for his daughter.
The determined father of four knocked on the door of MPs hoping for some assistance to pursue the medical treatment his daughter needed. “I wasn’t asking for much,” he says. “YBs earn RM7,000 a month and live in a brick house. All I wanted was to save my child’s life.” One of the MPs managed to get him RM200. Assistance also came from the welfare department and a Sarawak based cancer society. Noreen was able to undergo surgery to remove the tumours at Hospital Miri. It took her about a week to recover until she could urinate and pass motion again. Then it was off to Kuching where she stayed for a few months to endure chemotherapy. The plane fare to Miri was only covered for two so Noreen and her mother traveled by air while her father took the 15-hour bus ride from Miri to Kuching.
As she sits in the living room of her home in Kampung Muhibbah,Kuala Baram, Noreen, who is now 17, cheerfully recounts the ordeal of chemotherapy. “I couldn’t move,” she stiffens her body for affect, “when they implanted the chemo pod. It was painful.” Noreen talks animatedly with a lot of gestures and dramatic flair but without any airs. She is very much at ease and maintains eye contact with everybody in the room, which includes all four MAKNA team members and myself, while sharing her story.
As such, it was hard to believe when she says it’s not in her nature to be outgoing. “I became an actor and put on a show,” she says matter-of-factly. “I adopted a cheerful personality to cover up my feelings so I forced myself to talk a lot and even teased the nurses while I was at the hospital in Kuching. Her act was so convincing that according to Noreen, a nurse even told her it was the first time she had met a patient who was so carefree.
Her hidden pain comes to the surface though when Noreen continues in a wistful tone, “I didn’t use to talk a lot,” she looks down so we cannot see her slightly reddening eyes. “I couldn’t bear the sadness.” When she looks up again, the redness is gone and she is beaming in anticipation of the next question.
Sitting on the floor in a corner of the living room, Baji has been watching his daughter quietly with an indulgent smile on his face. She is not the only one who has undergone a personality change. Noreen says before her illness, her father was somewhat distant and stoic. He has since let down his guard and is more openly affectionate with her. She smiles mischievously at him before picking up a cushion to shield her face from her father while she whispers theatrically to the rest of us, “can you please ask him to stop smoking?”
Her father later tells me he is grateful to MAKNA for providing the RM200 monthly assistance that was used to cover transportation from home to Hospital Miri for Noreen’s medical examinations and treatment after she came back from Kuching. “It costs us RM30 in petrol charges to-and-fro and she had to go twice a week at the time,” he says. Now her hospital visits have been reduced to once every three months. However, money is always a concern for the household, says Baji who built the wooden house his family lives in because he couldn’t afford to buy one. Aside from three daughters, he has a son studying in Sabah who still needs money for living expenses.
Noreen misses her brother who came to Kuching to sit by her bedside at the hospital. The family is clearly close-knit and while her mother was hard on her in the beginning, it’s now all water under the bridge. “Aside from my brother, I’m very close to my mother,” says Noreen. “She understands me and took care of me when I was sick. She provided encouragement while I was going through chemotherapy in Kuching.”
After everything they’ve been through, perhaps it’s no wonder that getting each other’s age right is the least of their concerns in this household. This is a family that appreciates each other no matter how young or old. What’s more important is that when it really matters, they come through for each other.

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