The last days of a patient riddled with cancer can be terrible, with body weakening and mind wandering. All that is possible is care and pain management. In India only a handful of hospices for the terminally ill exist.
BY G B S N P VARMA
COVER AND TITLE PAGE ILLUSTRATION BY DEEPAK
The prognosis is stark and dark.
On the evening of January 2, the doctor in Vijayawada asks the family to come and discuss Viswam’s tests. Viswam, his wife Rajamma, and two other relatives go in. The doctor clears his throat and gives his verdict: It’s bone cancer. Malignant, advanced stage.
That’s a death sentence as definite as anything can be. Viswam feels as if someone punched him in the chest, emptying out his lungs. The walls seem to be pressing in on him and the floor beneath seems to have vanished as the C-word echoes around him. The prognosis has shattered them all. The ache in his leg seems to increase many-fold.
Rajamma holds her husband, hoping against hope that the doctor’s verdict is not the end of it. She wants to believe there is a future. Viswam is finding it hard to hold on. He’s about to crumple on to the floor, when a relative catches him and gently leads him out of the room.
There’s a sense of bewilderment, too. He did nothing to bring this on. There was no intimation that his body was turning on him, just a caprice of disease.
After some time he asks, “Is this pain in the leg due to the disease?”
“No,” the doctor says.
“Please give me medicine for the pain. I got this disease, but pain…”
On Christmas day last year, Viswam first felt the pain stab through the back of his left thigh, down the shank. The bespectacled, rather stocky 57-year-old preferred the limb gone. He went to a hospital in his town to get medicine. The doctor prescribed medicine for three days. But he got no relief, the pain all the while raking his leg from within. He couldn’t sleep. He tossed in a sea of pain on his bed. He went to another hospital on December 27, and came back perspiring, practically falling apart. He ate a light meal that afternoon.
The next evening, a doctor in Vijayawada ordered an MRI scan as he suspected it could be more serious than it looked. On December 29, he sent the waiting family off and talked with Viswam’s elder son about his disease.
The treatment would cost `4 lakh. He prescribed medicines for the next four days. Viswam was then taken to the Basavatarakam Indo-Amercian Cancer Hospital and Research Institute in Hyderabad, where they did another test. The results took 13 days.
In the meantime, the left leg went limp and lifeless. The tests revealed the cancer had metastasised to the liver. The doctors said he was far up the creek, the chance of finding a paddle next to nil. He was referred to the Sparsh hospice for the time he had left.
Viswam was always a stocky man, his face flushed full, no bone or muscle showing. His wife says he walked with pain in knees and feet, the result of having to support his heavy body. But now, on his bed in the hospice, he looks frail and withered. He jawbone is slightly prominent. The skin sags, folds up.
Viswam’s father died long ago. It happened out of the blue. He had always been a healthy man. One day, after his bath, as he was dressing himself he fell down. Doctors found a clot in his brain. They said there was no treatment. He was past 70. His mother passed away three years ago, having crossed 90 years.
The fourth of six siblings, Viswam didn’t take to agriculture like the rest of them. He studied up to intermediate. Then, for 26 years his life ticked away at the local gas station where he manned the pumps. That is how he measured out his life as the stiff wind blew and the heat scorched him.
The fuelled vehicles passed by, down the roads that led to the city as he toiled, an unobtrusive presence. Day after day, putting one foot after the other, he worked. On alternate days it was 24-hour duty. When the other guy didn’t turn up, he clocked marathon 48-hour shifts. He spent the little free time he had tending to his buffaloes.
Viswam was always was soft spoken, tender of heart. After his eye operation five years ago, he took permanent leave from duty and opened a kerosene dealership. The couple sold buffalo milk as a sideline. Half-an-acre of agricultural land fetched them a little more. Nobody smoked near him, as he found it unbearable. He did not like lunching out and usually went to bed before 10 p.m.
Viswam and his wife are distinguished principally by their ordinariness, not taking much from the universe, a standing example of frugality. They scraped by, shaving a bit here, a bit there, switching off fans or lights to cut the bill by a few rupees. Even when finances were tight they didn’t lack for anything, but nor did they waste anything.
He’s not one to hold court on the state of the world over a cup of tea or something stronger. “No friends. I don’t have any friends. It’s always work.”
Of course, he had his TV and newspaper. But Viswam is not the type to gossip about anything. His main focus always has been on giving a good life to his sons, to bequeath them something of value so that they don’t have to struggle the way he did. This is his need, this is his ambition.
He took comfort in the routines of his life, working the pump at the gas station for 26 years, and selling kerosene in the last five. He did give his sons something. He funded the construction of their houses. Rajamma worried about him, but that’s how life is, he would say. “We have to work hard to give something to our children, he would say.”
Viswam believed he had some more years left to his lot. He never expected life to change so much in just four months. He cannot believe he has come to this—diapered and completely dependent on someone else.
“I don’t want to live this undignified life,” he says from his bed opening his eyes. His wife sits motionless. A doughy pallor surrounds his sunburned brown face. To him it seems as if has he crossed a yawning chasm and landed in a completely unfamiliar space.
He wants to put up stairs in his younger son’s house as he did for the elder one. He goes over and over the plan, hopes to rise up from bed and finish the job. It has become something of an obsession, perhaps a way of diverting attention from what lies ahead.
“My life has turned upside down,” he says.
“Our son keeps telling him to forget about it,” says Rajamma, “He says his father has done everything possible for him, for everybody. Now is not the time to think about it.” But Viswam struggles with a vague sense of discontent, of a job left unfinished, a staircase left unbuilt in his younger son’s house.
Life plays out over the road. Cars honking, careening with peculiar Hyderabadi traits; men drinking, munching, spitting, and vigorously haggling, a five-to-10-minute walk away from a cul-de-sac where the life is receding from bodies.
The 12-bed Sparsh hospice, an initiative of the Rotary Club of Banjara Hills Charitable trust, is at the end of the cul-de-sac. Hospice doctors do their best to manage the pain terminally ill cancer patients suffer, soothe them as much as possible. It provides everything free of cost for patients and their attendants.
The only sounds are the rustle of leaves and the occasional calls of caregivers. Now and then a scream ripples through the spacious rooms, down the steps, and hall. The normal hullabaloo that surrounds life is absent here.
It’s 8 a.m. on a hot summer day. The air is still. Light spills into the room. The windows look out to a few trees, and to buildings, posh and polished. Quiet prevails. The leaves shimmer in the sun, accentuating the green, their rustling percolating inside. There’s a faint hum in the building. The airy space has a way of lifting up the spirit.
Viswam is late waking up. He moans as his wife changes his lungi. His face contorts in pain. His lips dry up, tongue parched, a thin layer of white covers his mouth. To feel, even for a short period, the rhythm and movement of a normal day is beyond him. He mumbles the Lord’s name.
As she raises the headrest and seats him elevated for comfort, Viswam scans the room. In the next bed, until the previous day, was a man with rectal cancer, also a death sentence. He and his mother bickered, and left the hospice yesterday, against doctors’ advice. His mother said she couldn’t care for him as she herself was weak. A stench streaks into the room from another, the wounds of a patient suffering from skin cancer. Viswam is exhausted. The night was rough. He couldn’t breathe.
He mumbles something, and looks at the photo of Rama, Sita, Lakshmana, and Hanuman—Dr Ram brought it when Viswam asked—on the light pink wall. A calendar flaps, showing the march of time and disease.
“Please take me away,” he often whispers to the Lord. His wife asks him to brush, one of the million things we do thoughtlessly every day. But he feels it’s beyond him now.
After he joined the hospice on January 26, they wanted to go home for a few days and come back. But doctors advised against it. His right leg went lifeless after a few days. He was too weak to move, even out of the room. Care for pain wouldn’t have been available as it is here. He is on around 50 mg of morphine. The doctors regulate the dose, depending on the severity of his pain.
The last days are a hive of affect: each moment has its own rhythm and poignancy. The objects on the stand in his line of vision might be disintegrating, the water bottle, mosquito repellent, all dissolving into their atoms. Nights are scary. Whenever he closes his eyes to sleep, “somebody is hitting me on the shoulder and waking me up, picking me up,” he says.
He often dreams about his legs working and taking him on errands.
The dream, repeating itself every other night, of a man who remembers walking and standing long hours, the limbs helping him do his job at the gas station pump for 24 hours at a stretch. Even during daytime moments, the stocky, walking man of old surfaces. “What I have done is not much. There is a lot to do,” he says. He walks in his mind, looking down some dusty road in his memory. In time, he grasps himself. And the walking man vanishes inside the man on the bed.
Now, he is forced to lie down, urine bag attached, immobile from the waist down, the result of the cancer compressing the nerves in his vertebral column. He never visualised the range and breadth of life completely gone. Work and mobility defined him. The immobility is depressing, he says.
For the last two days, his breath seems to have taken on a tidal pattern; this hour, a wash of surf on the fast disintegrating shore that eventually cascades into the sea, a smile on the lips, movement, small talk with his loved ones, and the next hour, it goes out imperceptibly, exposing the disease, leaving puddles in the eyes, turning the face pallid, pale, and funereal, punctuated by long agonised sighs.
Rajamma weathers these episodes one dreaded night after another. Time, for him, is measured in breaths.
What does he like about his wife?
“Goodness,” he says, after a gasp and sigh, looking toward the ceiling.
“Patience,” he says after a gasp again. They have not travelled much together. It was always work and home. “Lot of work,” he says.
The memories loop around his skull, childhood remembrances of his father and mother, enjoying himself with his brothers, his marriage, of hardships shared to bring up the children.
He remembers how he and his wife always strived to give a good life to his sons. He often thinks about his granddaughters—the elder son has two and the younger son one—their lovely innocence and their baby steps. The sound is music to his ears.
“Our younger son’s daughter resembles him,” Rajamma says. “You’re born so that I can see myself in you, he told her once,” Rajamma remembers him saying.
When he was relatively stable, Viswam sang bhajans with the volunteers. He is a good singer. In the last 10 days he stopped eating solid food. He has confined himself to buttermilk, milk, juice and coconut milk.
“No digestion,” his wife says, “Whatever he ate, he threw up.”
Even in this condition, he has the courage to just be.
“He never thinks or says, why him?” his wife says. “”He says nobody should suffer from this disease.”
“Open your eyes, and talk a little, please,” Rajamma says, leaning into him. “By nature he is silent, not talkative. This disease has made him still more mum.”
He is aware of his surroundings. He can hear the conversations, hear the steady whine of the construction drill just one street away.
“His brain is working fine,” she says.
He often expresses his fear of falling down, although the bed has a guard rail. Rajamma asks him again to brush his teeth.
He winces. “No strength.”
“We cannot afford to go out,” she says, because medication is not available outside.
“Don’t take me home because it’s costly, finish my funeral here in Hyderabad,” he often says to his wife.
Rajamma presses his left upper arm. Her fingers go in “as though there is no bone here”
On his right wrist, a few threads, orange and yellow, are tied as charms.
Rajamma hands over the toothbrush, with paste smeared on. He slowly takes out his dentures. He brushes. His nails have a black veneer under them. He stops midway, exhausted, hand limp, barely able to hold the brush. He leaves it in his mouth, chest rising higher, and falling lower. He pauses. After it’s over, she swabs his face, and puts on tilakam between his eyebrows as is his wont.
The 10-minute task is excruciatingly tiring. He moans and continues moaning, making guttural sounds.
“I feel breathless.”
After a few minutes, he recovers, regains his breath, not normal of the old, not even of a few days ago, but barely serviceable at this point. His wife gives him a morphine tablet.
An ayamma (attendant) comes, and greets him blithely with a “hi”, raising her hand.
“I have no energy to lift my hand to greet you,” he says.
His eyes gleam when he sees her, the thin, bespectacled angel, hair mussed and curls on forehead, always bringing a whiff of cheer whenever she comes in, her slippers tap-tapping the floor. He looks soothed. This is the only time a faint smile crosses his visage.
“Want idli?” she asks.
She leans in close, gently feels his head, as if caressing a child, running her fingers through his thinly spread gray hair. She feels his left arm, down the shoulder, down to the wrists. She feels it rough there. “Cream. Get it downstairs.”
He looks out into the light. It’s bright and sunny outside—if only body could follow thought. His wife offers milk again. After many refusals, he accepts.
He sips, face contorting as if he’s drinking a bitter potion.
When he is drowsy and not lucid, Viswam talks of many things: “Want to sell kerosene,”… that has been his refrain over last few days,” Rajamma says. “Come home quickly,… lot to do”, is another.
A nurse comes in.
No, don’t feel like eating.” He says. “It’s better to die than eat.”
His breathing gets heavy again.
“Want ragi java?
She gives him a capsule and two tablets. He wants to recline. Rajamma gently turns him on to his right side.
“We have to serve him as if we’re serving a child,” she says.
She feels she can handle the day with light and people coming. Nights are nightmarish. “Fear engulfs me.” She spends sleepless nights.
The doctor comes.
“How are you?”
“Breathless,” he says, his tone increasingly muffled and wispy, the resonance gone, voice on the verge of dying in the throat. The doctor wants to check the oxygen saturation level.
A nurse clips the pulse oximeter onto his middle finger. It measures oxygen going into body tissue.
For normal persons, it’s 90-100 per cent. Once it goes below 90 per cent, they put the patient on oxygen. The doctor explains about putting him on oxygen. They’re giving him five litres to maintain the 90 per cent oxygen saturation level. “We have to see how it holds.” He asks Viswam’s wife to call up her son.
She senses something. Tears well up in the eyes, the hitherto confident woman now vanished, shaking and crying at the same time. She seems to have lost the ability to say anything.
The son comes in perspiring, after about half an hour.
Doctor Ram explains about the oxygen saturation level. Mother and son stand downstairs with the doctor.
“If it comes down, starts plummeting despite our putting him on oxygen, to 50, 40 per cent, then it’s…,” he shakes his head, unwilling to make the unwelcome statement.
“Since his breathing is hard and heavy, I think it may have spread to the lungs.” Or there could be a blood clot in an artery to the lung, pulmonary embolism, which is common among cancer patients, and can be dangerous.
Both mother and son look ashen.
“It’s not hours?” the son asks.
“No,” the doctor says, then recalibrates. “I feel it’s not.”
“Is it days?”
Mother and son go upstairs, to the husband and father, an approaching absence, a fast-receding image in the rear-view mirror.
(The names of the patient and his wife were changed to protect their privacy).
(G B S N P Varma is a freelance journalist who reports from Andhra Pradesh.)
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