A woman living with a degenerative condition.

A young man struck with stage-four cancer.

A nurse and a medical social worker who help the dying.

Take a step into their lives.

Jane's Story

Jane’s smile hides her mother’s fear.

“My daughter is a ticking time bomb, there’s really no way of telling what will happen tomorrow,” says 55-year-old Madam Grace Chin.

The matter-of-fact statement is a tell to her stoicism. Her fingertips trace across her daughter’s forehead to put her fringe back in place – done with an unselfconscious ease.

The first thing that grabs your attention about Madam Chin is her eyes – they have a strong, steely gaze yet every so often a glisten of hope comes through.

A plaintive hope that comes from caring for someone with a terminal disease.

Madam Grace Chin and her daughter, Jane, who suffers from a rare medical condition known as Melas.

CLOSEST FRIEND: Madam Grace Chin and is a treasured confidant to her daughter, Jane, who suffers from Melas.

Her 28-year-old daughter, Jane Tan, suffers from the condition Melas (mitochondrial encephalomyopathy, lactic acidosis and stroke-like episodes) – a rare degenerative disease that slowly destroys the brain, nervous system and muscles.

WATCH: Jane's mother, Madam Chin, on her daughter and her disease.

It was not always this way. Jane used to be fit and healthy.

She enjoyed cooking, travelling and going out with her friends for most of her teens.

That changed when she was diagnosed at 17.

Jane suffers from severe muscle dystrophy and is wheelchair-bound.

Her condition means that she does not talk much. One of her doctors even dubbed her the "silent fighter".

The degenerative nature of her illness has led to the progressive deterioration of her body, affecting her kidneys, lungs and heart.

She experiences splitting headaches, vomiting, loss of appetite, seizures and strokes on a regular basis.

For her mother, Jane's condition is heartbreaking.

Breaking the news

“I was in denial. I couldn’t accept the fact that this could happen to my daughter,” says Madam Chin.

Why me? Why my child?

Madam Chin says Jane was healthy and active in her adolescence. There was no indication that anything was amiss.

However, early signs of trouble showed in 2004 when Jane abruptly lost her hearing. She was 15 and in Secondary 3.

Despite this, she was able to overcome her disability and sat for her O-level examinations the following year.

Her results secured her a place to study Applied Food Sciences and Nutrition at Temasek Polytechnic.

During a mandatory pre-enrolment health screening by the polytechnic, she was alerted to abnormal amounts of protein in her urine.

A series of tests followed, revealing a prognosis of suspected kidney failure.

Then a muscle biopsy confirmed the presence of Melas.

From that point, the family’s life was turned on its head.

The unpredictable nature of her daughter’s illness means that Madam Chin can never let her guard down.

I think what’s more painful than seeing her in this condition is not knowing when things will take a turn for the worst.

Apart from being a full-time housewife and caregiver, Madam Chin is also her daughter’s closest friend and treasured confidant.

From accompanying her daughter to weekly dialysis sessions and doctor’s appointments to administering hourly medication and keeping vigil by her bedside at night, Madam Chin tirelessly ensures all her daughter’s needs are met.

Whether it’s watching the latest Korean dramas or trying out new recipes together at home, mother and daughter share an inseparable bond.

WATCH: Jane talks about her bond with her mother.

Cost of
treatment

Like many from middle-income families, Madam Chin finds it an arduous task trying to finance her daughter’s home-based palliative care each month.

She says that the cost of medication, specialist check-ups and dialysis sessions can range from $3,000 to $3,500 a month, depending on her daughter’s condition.

Madam Chin’s husband is the sole breadwinner of the family of five, and things can hit rock bottom at times especially when Jane has to undergo an operation.

The family is ineligible for a number of subsidies and grants because they own private property – a shophouse in Bedok where her husband sells furniture.

“Not just me, but many patients I’ve spoken to feel that if you’re very poor and when you really cannot afford it, then yes, the government will step in,” says Madam Chin.

“And if you are rich, then of course you can pay for it.”

Her tone turns to one of resignation:

It’s just us, the middle-income group, that gets caught in the middle.

Thankfully, some help has come in the form of the Medication Assistance Fund, though it can still be a struggle.

A STRUGGLE TO TALK

Of the many things that Jane misses, she misses the company of friends most of all.

The Melas has made every word a struggle for Jane to pronounce, each one taking a whole breath to enunciate.

“In the past, my close friends and classmates would come visit me whenever they could,” she says before pausing to regain her strength.

“But everyone is so caught up with life these days and most of them are working or married, so I hardly see them.”

The self-confessed travel fanatic says her condition prevents her from doing things most of us take for granted.

Some days, it can be a little tough when I see friends living their lives travelling and shopping while I’m bound by a wheelchair.

A playful smile emerges, similar to the one usually enjoyed by her mother.

“But,” she says, “life goes on”.

WATCH: Jane reads a poem she wrote for her mother.

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Khairul's Story

Creativity is central to Muhammad Khairul Ikhwan’s identity.

The 23-year-old Nanyang Academy of Fine Arts (Nafa) graduate can even be said to have turned his life into his canvas.

Personal tragedy and – at one point – being given just two months to live, have not been able to quell his art.

His social media channels feature him in an array of outfits, enjoying the camera.

Yet his paintings often have macabre themes.

Khairul says these are visceral manifestations of his innermost thoughts; allegories of hope, sexuality and the unpredictable nature of life.

But Khairul is used to dealing with the unpredictability of life.

He has Stage 4 colon cancer.

The New Paper visited Khairul a number of times over four months.

In December, his cancer was at its peak. His hair was gone and his face was swollen from the treatment. He had been living with the disease for over a year, and he seemed fragile.

He revealed that the discovery of his cancer came through sound.

Coming to terms
with cancer

“It started with a ringing sound in my head. I thought I was going crazy,” he explains in a voice softer than his frame would suggest.

In November 2014, at age 21 and barely a few months into his National Service, he began experiencing an incessant ringing in his ears and regular bouts of migraines.

The increasing intensity of his symptoms alarmed him.

In December, he made the first in a series of visits to hospital. But all these resulted only in painkillers.

By the seventh visit, he was experiencing anxiety attacks, double vision and blood in his stool.

In January last year, after a complete loss of hearing in his left ear, he went to Singapore General Hospital.

He was warded immediately and put through a series of full-body and brain scans to detect anomalies and tumours.

The results were life-changing.

WATCH: Khairul was diagnosed with cancer at the age of 22.

“They found two mushroom-like lumps in my large intestine and a tumour in the brain – almost immediately they knew it was colon cancer,” he says, his speech cautiously slow and his words drawn out due to his hearing difficulties.

His first response? Denial.

I didn’t want to believe it. I’d barely lived half of my life. So why me?

What Khairul did not know at the time was how bad his cancer was.

He had lost his hearing in both ears. His mother, Madam Sanisah Sanwan, could not bring herself to tell Khairul the full diagnosis. Stage 4 is commonly the point of no return.

She settled on an “out-of-sight, out-of-mind” approach for her son’s sake. By choosing to keep it a secret, Madam Sanisah hoped to keep his morale high.

That decision proved to be a masterstroke.

WATCH: Khairul's mother, Madam Sanisah Sanwan, on her son and his cancer.

“Not knowing what stage helped because I was feeling fine when I was told I had Stage 4 cancer.

“I told myself that if I could survive this far, I could do anything.”

“This might sound impossible to believe. I didn’t know what stage I was in until a friend accidentally leaked it to me,” explains Khairul.

A positive thing that has emerged from his personal tragedy is discovering a dedicated circle of friends, eager to help and determined to see him beat his disease.

Being able to lip-read helped and he used to write on his mobile phone whenever he had to communicate. His strong presence on social media allowed him to find courage from messages and posts that he received on an almost daily basis.

But it got lonely.

“This illness has showed me the best and worst in people,” he rues.

I’ve had friends I’ve known for years who have avoided me because of my illness.

Some, he says, even accused him of attention seeking.

“Bonds are so important, yet so unpredictable.”

The Artist Within

He scoffs at the Hollywood feel-good take on the terminally ill with films like The Fault In Our Stars and Me, Earl and The Dying Girl.

They are sugar-coated love stories which do nothing to highlight the actual struggles people like me go through on a day-to-day basis.

His illness altered his lifestyle. He was no longer able to be the party animal.

“My mother called me a vampire,” he offers with a laugh.

Yet cancer did little to dampen the spirit of the artist within.

Khairul’s room is a testament to his art with cupboards packed with sketchbooks in a variety of sizes.

A handful of sketching pens and pencils litter his makeshift work table.

For him, art isn’t just a cathartic release, it’s part of his reality.

When I paint, I go wander off into another realm.

“There, I’m someone else. Someone who’s not me.”

An artist close to his heart is Japan’s Yayoi Kusama who is known for her polka dot paintings, a result of her hallucinations caused by the severe depression she has suffered from since childhood.

“Instead of wallowing in her illness, she’s decided to celebrate it as a form of salvation.”

“My art is pretty much the same.”

Facing Tomorrow

A glance at his YouTube channel reveals a collection of almost 3,200 videos of himself amassed over the past four years – including snippets of his make-up tutorials, dance-offs and lip-sync videos.

“I still dress up sometimes whenever I’m in the mood,” he adds with a smile.

WATCH: Khairul is a performance artist who uses social media channels to express himself.

Despite reacting well to bi-weekly chemotherapy sessions, which have helped reduce the size of his brain tumour, Khairul spent months without his hearing.

“The only thing scarier than cancer is the silence that comes from being deaf,” he confesses.

It’s a lonely place when you can’t even hear yourself.

By March this year, there was change in Khairul’s status.

The cancer that he described as being “70 per cent active” was reduced to just “10 per cent”.

With his brain tumour physically reduced, his hearing has returned.

In April, he even had his first art exhibition – appropriately titled Hope – held at the NAFA campus.

He has another lined up for August.

But he is not out of the woods yet. He knows he is not cured.

He still has cancer. It is still classed as Stage 4.

But he refuses to be meek and wait for darkness. He dresses up when he can.

“I don’t really care what people think,” he intones with determination.

“Be it in a positive or negative way, it’s very important to be yourself and express yourself wherever you are.”

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Nurse Amy's Story

By the time patients get referred to Nurse Amy Lim, they are often in the final stages of their illness.

They would have anything from a matter of days to a couple of months to live.

They are mostly cancer patients or those with irreversible organ damage.

Nurse Amy – as all her patients call her – is a guardian of sorts to those who have exhausted all possible forms of treatment.

“Medical, spiritual or even miracle healing – these patients would have tried everything to recover,” she says.

I might not be able to cure them, but that doesn’t mean I can’t help them heal.

She visits patients at their homes and The New Paper followed her for three days as she went on her rounds across Singapore.

At first meeting, her appearance appears to be at odds with her vocation.

Nurse Amy’s enthusiasm is near infectious. She looks much younger than her age and her joyful demeanour does not suggest someone who essentially works with the dying.

Then you see why this is perfect for her role.

The smiles she receives show just how welcomed a presence she is in her patients' lives.

She does not go to just administer treatment. Upon seeing a patient, her first instinct is to reach out to hold their hands.

That their nurse spends time with them, holds their hands and listens to them is visibly appreciated. The genuine warmth of the gesture is palpable.

Healing and acceptance might not reverse their fates but Nurse Amy helps them to live out their remaining days with “dignity instead of desolation”.

WATCH: Nurse Amy Lim on her job as a palliative care nurse.

The 49-year-old has been a palliative care nurse with HCA Hospice Care for over eight years – a far cry from her early days as an obstetrics and gynaecology nurse at Singapore General Hospital where she served from 1996 to 2006.

Going from the bright and cheery wards of nurseries to intensive care wards was a reality check.

“I literally went from baby showers to funerals overnight,” she shares. Her humour can appear darker to those not in the medical profession.

Apart from administering medicine, monitoring patient’s vitals and cleaning wounds, she spends a considerable amount of time helping her patients find solace in their remaining days, no matter how bleak it might seem.

“The irony of life is that things become very clear when you are dying,” she says.

“My job is to help them reach this clarity.”

The reality
of dying

From the one-room rental flats of Taman Jurong to the upmarket gloss of private bungalows at Bukit Timah, Nurse Amy’s clientele takes in the entire spectrum of social strata.

She heads out pulling along a travel suitcase with her vital supplies like vials of injectable morphine. These are so essential to her patients that should she be robbed, it is these painkillers that she would fight for above all else.

“I’d say take my money, not this bag,” she laughs.

WATCH: Nurse Amy Lim prepares to meet her patients.

Yet, just as an illness can bring together a family, it can also tear it apart, she adds.

The reality of terminal illness is not just lying in bed. The reality of a body breaking down is a wake-up call some refuse to answer.

A patient’s spouse once told me that she would rather see her husband dead than to help change his soiled diapers.

Her tone suggests she sees this more often than she’d desire.

“Her husband was just beside her.”

She attributes these “dehumanising acts” to the materialistic nature of modern society.

She says that by chasing and amassing material wealth, we have neglected our primal nature to care and love for one another selflessly.

There have also been instances of patients and their families refusing medical intervention for religious or superstitious reasons.

One of her patients, a 74-year-old woman with throat cancer, believed her illness was retribution for being a poultry butcher during her youth.

Her large throat tumour, karma for culling chickens by chopping their necks.

She gradually stopped taking medication as she felt that it would block her path to atonement.

“Her job as a butcher helped send her children to school and put food on the table,” says Nurse Amy.

What saddens me the most was that she died a slow, painful death thinking she had committed a terrible sin.

More Sister Than Nurse

But the bounty of pleasant memories keeps her going.

She fondly recounts an incident in January 2005, on a visit to the Indonesia’s slum district of Sulawesi, where she encountered a teenage boy who was in immediate need of an amputation to stop his cancer from spreading.

However, he was an ardent football fan and had dreams of becoming a professional soccer player.

Naturally, he was against amputation.

After a few days of interacting with him, Nurse Amy managed to convince him to undergo surgery – an act that saved his life.

WATCH: Nurse Amy Lim cares for one of her patients, Madam Sum Ah Chin

Most recently, she touched the life of 55-year-old Rhama Mohd Said, a patient suffering from stomach cancer.

“Amy is more of a sister than a nurse,” Ms Rhama told The New Paper.

She’s been there for me from the start, even when no one else was. That’s something I’ll never forget.

Sadly Ms Rhama, who lived with her older sister and four other relatives in her three-room apartment in Clementi died on March 14.

A week before her death, a family dispute saw her unable to return home.

Unable to find lodging in her condition, she turned to Nurse Amy who found her a place to stay at Dover Park Hospice. It was there that she spent her last days.

WATCH: Nurse Amy Lim as she takes care of Ms Rhama

Similar cases are not an uncommon, says Nurse Amy ruefully.

It’s really sad when those you trust let you down when you need them the most.

For a brief moment, the smile that Nurse Amy often wears drops before returning.

“But that’s why we are there,” she affirms with a reassuring smile.

“To make sure they live out the rest of their days with someone by their side.”

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Lola's Story

Terminal illness means family and friends face the reality of having to witness a loved one deteriorate before their eyes.

For issues closer to the heart, it requires a person, not a pill

Ms Lola Ng, 35, describes her profession as one “in a constant state of flux”, and not without reason.

As a medical social worker with HCA Hospice Care for the past five years, she soon realised that her role involved wearing many hats.

Her job centres around providing social and emotional support for the terminally ill and their families.

Helping patients come to terms with their illnesses, seeking out eligible grants and subsidies and providing bereavement management for families are just some of her day-to-day duties.

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BEING THERE: Ms Ng says that her job is to tie up the loose ends of a patient’s life.

But the unpredictable nature of her profession also means that she undertakes responsibilities that fall outside her remit.

This includes tracking down estranged family members, arranging funerals or being the only person at a patient’s bedside during his or her final moments.

In essence, her job is to tie up the loose ends of a patient’s life.

She is also the bridge between patient and medical staff.

A common occurrence is how the terminally ill, having come to terms with death, see no point in taking their medicine.

Doctors and nurses turn to the medical social worker for intervention.

“Naturally, doctors see all medicine as important,” says Ms Ng.

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SCOPE: Ms Ng says medical social work can take in many aspects, and even branch out beyond the usual job scope

She readily admits that it is a tough balancing act.

“On one hand, I have a dying patient who just wants to live out the rest of his life on his own terms.

“On the other hand, I need to remain professional. I’d be lying if I said it was easy.

The only thing that matters is what the patient wants. Nothing else.

Often, patients appreciate having somebody outside of the family sphere to share their hopes and fears with.

Comfort

In fact, the mere presence of another person can be a source of comfort. “There were a few times where a particular patient of mine and myself would just sit together in silence,” says Ms Ng.

After five years, outright rejection from patients or their families have become part of her everyday life.

She has a theory as to why this is the case.

Doctors and nurses have clearly defined roles. But there is not much awareness of what a medical social worker does. Patients and family members don’t really understand my role.

Often, I am not given a chance to explain.”

She hopes this mindset will change.

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