The Patient (17 page)

It was about one in the morning when Jonathan awoke in the ward, in the same four-bedded room as last time. Opposite him, the light was on, and the gaunt old stubbled man in the bed was straining against his shackles and shouting out. ‘We will not give in to you. You can take my head off if you want to. You will not win this war. The Allied forces are on their way. When they see these medical experiments you're conducting on us all, you'll see what they'll do. You're all in big trouble.'

An Asian nurse was trying to give him a sedative injection. ‘Calm down. It's no good the way you talk. Calm down, Mr Swinson. Calm down,' she was saying with a very heavy accent.

The patient in the bed next to Mr Swinson was also awake. ‘It's no use, love. He thinks he's back in a Japanese prisoner-of-war camp. He's all right during the day, but he's been behaving like this every night since you've been doing the night shift. He's confused, poor old fellow.' The man, who was in his 50s and whose arm was in a cast and suspended from a drip stand, sounded compassionate but exasperated.

Jonathan felt wetness between his legs. ‘Help, please. I think I'm bleeding,' he called out to the nurse.

‘I'll be there in a short while, as soon as I finish here,' she said. ‘I'm by myself. Please wait, OK?'

‘No. It is not OK. I'm bleeding here. Please. Help me.' Jonathan was panicked. He looked for the button to turn on the light and in the dark found the television instead. It came on loudly. The headphones were not plugged in.

‘For Christ's sake, shut up,' said the man in the bed next to him. ‘Can't we get any sleep in this fucking hospital?'

‘Please respect yourself and us. Don't swear. You have filthy mouth,' said the nurse, who was still trying to find a vein on the old man while he continued to accuse her of conducting scientific experiments on him in the prisoner-of-war camp.

She finally came over just as Jonathan had found the light in his dazed state.

‘It is only the catheter. No problem. You are not bleeding. It is just the fluid from the bag,' she said. His catheter had come adrift and was leaking bloody urine into the bed. The nurse hooked it back up, turned the light off and left. His bed sheets needed changing, but she was too busy to do that now. It could wait.

Jonathan was wide awake now. The sheets were uncomfortably wet, but he did not want to complain. He wondered what they had found during his surgery. He wondered what time it was. The old man had calmed down a bit and now was just slurring his abuse. The man next to him was snoring like a bear in the woods again, after his earlier outburst.

Through the window, Jonathan saw a faint red glow
from the neon lights illuminating the entrance to Emergency. He hoped that Tracy would come and visit him at a reasonable hour in the morning. Meanwhile, he really wanted to get up and walk around, but he was tied to an intravenous drip and the catheter. He slept very little these days and seemed to need to get up in the middle of the night to have a walk. He picked up the various tubes and attached them to the drip stand and got up. There was a loud crash as the nurse-call cable fell off the bed onto the floor, the plastic button shattering.

‘Jesus Christ,' grumbled the man in the next bed.

Jonathan walked out of the ward into the corridor. The nurse was sitting at the desk reading a magazine. She looked up briefly. ‘Everything OK?' she asked.

‘Yes. I'm just going for a brief walk.'

Christmas was on its way; he hadn't realised how close it was. The ward had made an attempt to decorate. There was an old plastic tree in the corner with coloured lights blinking on and off. Pretend presents had been wrapped and placed under it. Tinsel decorated the corners of the ward and hung lazily across the corridors. On a board at the desk was a row of coloured lights, one to indicate each bed in the ward. They were lit in a random pattern of patients who needed the nurses' help, and they unintentionally added to the festive feel of the ward.

Jonathan walked past other four-bedded rooms and noticed that along one side of the corridor there were single rooms. In one, several people stood around a dimly lit patient who was gasping on an oxygen mask. He guessed it was the night-time vigil that played out each night in every hospital around the world as family waited for someone to
die. One of the family members came out into the corridor and quietly closed the door behind her. It was a young woman, about Tracy's age, who smiled softly at him. She opened the door to the ward tearoom, and he followed her into the brightness of the room. She went to the sink and started to make a cup of tea.

‘Could I make you something while I'm here?' she asked in hushed tones.

Jonathan looked around the room, expecting her to be talking to someone else. When he realised it was only him in the room, he nodded.

‘Tea?' she asked.

‘Yes. Please.' He sat down on one of the plastic chairs. ‘Is it your father who's ill?' he asked gingerly.

‘No, it's my brother. He has lung cancer. We don't expect him to last through the night. My mother and sisters are with him.' She became teary telling him but quickly composed herself. ‘And you, what are you in for?'

The words ‘in for' struck Jonathan. Was he
in for
something, like a disaster or an event? Or was he
in for
a crime he had committed? ‘Bladder cancer.' He was getting used to saying it.

‘Do you have any family?' she asked.

‘Yeah, two daughters, nine and eleven. No, ten and eleven. Emma and Kate. Emma's my eldest. And my wife, Tracy. Hopefully, they're all at home tucked in.' He winced at saying the word ‘home'. He did not have a home any longer. He was itinerant, soon to be living at his father's house. The woman placed the cup of tea on the table in front of him.

‘It must be hard to be going through what you're going
through. I can only imagine the pain you must be feeling. Have the doctors told you what treatment you need?'

The concern of this stranger, who was herself suffering, touched Jonathan. ‘I had an operation last night. I'm waiting to find out what they found,' he said.

‘I better get back to my brother. I wish you the very best,' she said and touched the back of his shoulder as she left.

Jonathan sat silently in the tearoom, yearning for her to come back. He thought of his wife and children, of the fact that perhaps, one day in the not-too-distant future, he too might be in a room with the hushed tones of death around him. Once again, on this journey he was on, Jonathan confronted the possibility of his death coming sooner than he had hoped.
What is the process of dying?
he wondered. The man down the corridor was obviously about to find out what happens on the other side.

He closed his eyes and tried to imagine his mother's face, as he liked to remember her, before the stroke. Instead, a macabre thought about her rotting in her grave popped into his mind. He imagined her body falling apart, bit by bit. He had seen decomposed bodies on television, in documentaries, and the full realisation struck him that this is what would happen to him too when he died. A crushing sadness came over him as he imagined his wife and daughters at his funeral.

Suddenly, there was a clatter at the door. Looking up at the clock on the wall, Jonathan was surprised to see it was five in the morning, and the cleaner had arrived. She came in and changed the bins, wiped the sinks and mopped the middle of the floor. Then she took the same mop and
wiped the walls with it. Jonathan couldn't believe what he had just seen. He went back to his room and waited for the day to commence.

I met Derek on the ward at about 6.45 am, and we went to see Jonathan first.

‘Did you sleep well?' asked Derek and immediately continued, ‘Look, the cystoscopy yesterday has shown that you are not responding to the BCG treatment. We hoped that you would, but your cancer has progressed. I think we have no choice but to advise definitive treatment. You have two choices in my view: radiotherapy – ray treatment – or a cystectomy, where we take your bladder out completely. It's an …'

We could both see that Jonathan had tuned out at this point, as his eyes had completely glazed over.

Derek paused and regained his attention. ‘Given your age, I think I would advise the latter. We can schedule your surgery for later this week as an emergency, and I think it should nail the cancer on the head.'

Jonathan was now pale with confusion and fear.

‘Where's your wife today? Do you want me to speak with her as well? It's a big decision, of course, and you'll need time to think it through. I'll be in my rooms throughout the day. Perhaps you could get her to call me, OK? Well, I'm sorry it's not better news, but I think we need to move fast to help you beat this thing.' With that, Derek patted Jonathan on the back of the hand and left the room with his retinue of residents in tow.

I returned after the ward round to find Jonathan sitting up in his bed, dazed.

‘I felt that perhaps you needed to talk about what we found
in theatres last night,' I said. This was an uncharacteristic show of compassion on my part. I had always been a driven surgeon for whom the technical repair of the patient was the means of displaying care. To sit with a patient and talk about his or her feelings was something I rarely did. I preferred to refer the patient to the social worker instead.

‘I'm trying to process it all, doctor. What does it all mean?' he asked.

I reiterated Derek's conversation and did my best to explain the possibilities that lay ahead.

‘So, how do I urinate if they take my bladder out? I don't understand.'

‘We can substitute your bladder with a new bladder or use a small piece of your bowel to carry urine from your kidneys out through a hole in the side of your abdomen.' I pointed to where the stoma would be sited outside his body. ‘The urine would drain from there into a bag that you attach and change whenever it's full.'

Jonathan looked more and more faint as I spoke. As I helped him lie down in the bed, I wondered how I would react if the same news was given to me. I never envisaged for a moment that soon I too would have to make decisions about illness, treatment and death.

‘Will I be able to get home before the operation? I just need some breathing space. I want to go back home.' The word ‘home' stuck in his throat. He brought his blanket up to his neck as if to hide from the truth and the realities that were now hammering him. One moment, he had an infection or a stone. Next moment, it had turned into a cancer that could be removed with just a simple operation. Then he had the BCGs, which he was sure were doing him some good. Suddenly, it had turned into a major operation
with new bladders and having to carry bags around to collect his urine outside his body.

Coming all at once, it was too much for him. Jonathan was breaking down. He was deconstructing. I looked at him and thought of what new recruits in the army appear like at the end of boot camp. They are put through a gruelling regime of punishing physical and mental torture until the people they were have left their body and they are empty shells to be filled and turned into obedient, rule-following machines. There was one difference. He was now a hollowed-out shell, but Jonathan had nothing to fill that shell with. He closed his eyes, and I imagined the past three months of his life were playing out like a fast-forwarded movie. Then blankness. He probably could not even visualise the future.

I sat silently with him for a while. Soon the curtains parted, and Tracy was there to take over the hand-holding. I returned to being a surgeon. Later that day, Jonathan's bleeding settled, and I was able to take out the catheter and send him home.

I was very surprised to find out subsequently from Derek that Jonathan had persevered with the BCG and chosen not to have his bladder out. He apparently could not face the thought of having to carry his urine around with him outside his body. I wondered how he had come to that conclusion or who had suggested to him that risking his life to preserve his vanity was a viable option. It was not my issue, as I was no longer Derek's registrar and was now a senior lecturer at the university and consultant in urology at the hospital. I didn't meet up with him again until over a year later. When I did, it was not as his doctor.

I sat on a bed in one of the cubicles of the Nuclear Medicine department's waiting bay trying to avoid being recognised by other staff. I had been through the entire gamut of medical care in the preceding couple of months because I had discovered a lump in my neck that had turned out to be a cancer. To make things worse, it had spread. Two bouts of surgery and a treatment called radio-iodine ablation, which was supposed to have killed my cancer cells, had left me a shattered man.

Just over a year previously, I had taken up my position at the Victoria Hospital, and now I was in need of the staff. I tried to keep my use of the hospital's services to a minimum, because I didn't want to interact with the staff any more than could be helped. What I hated most of all was when they asked how I was. Was it from a macabre desire to see my suffering or because they genuinely wanted to alleviate it? ‘How are you feeling now?' I dreaded the very words.
Do not ask how I am or what I need. Instead, simply make my family a meal, pay a bill, take my children out to the fun park or get your wife to take my wife to the movies. Do something – anything – that is useful, but do not, for God's sake, ask me how I am.

The only good thing about getting cancer is that, paradoxically, one develops an extraordinary degree of patience and the ability to wait. One waits for biopsy results, treatment, surgery, tests. One spends the entirety of the rest of one's life, no matter how long or short, waiting.

That day, I was waiting for a scan to see whether the treatment had controlled my cancer.

An orderly headed towards the cubicle opposite mine to collect the next patient for their scan, and once the curtain was parted I saw on the bed a man in a white hospital gown. I read the name on the end of the bed: Jonathan Brewster. His eyes met mine. Had I not read the name, I would not have recognised the gaunt man I now saw lying in a bed about to be taken in to have a bone scan. Tracy was standing by his side. I remembered her as a beautiful woman, but now deep lines of premature age seemed to have altered her face into a permanent mask of sadness. She recognised me before Jonathan did and whispered something to him. Disbelief immediately registered on their faces.

‘What are you doing here?' asked Jonathan.

That was the other inane question I had been asked a hundred times by my colleagues, and which galled. Coming from a fellow patient, it seemed more acceptable.

I explained my story briefly and then asked about Jonathan.

Tracy explained how he had opted to finish the BCG treatment instead of having his bladder out. But, after nine weeks of BCG, he had some cancer left behind and so needed radiotherapy of his bladder. ‘He finished his radiation almost a year ago. We were so hopeful then, Dr Khadra. He got his strength back, and we even went on that holiday to Africa. Jonathan would not let me sell it to get the cash back. God, it was fantastic. We went from Johannesburg up to the Victoria Falls and stayed at a hotel right on the
Zambezi River. When we came back, he was even well enough to start looking for jobs, and then this back pain hit him. It's all really knocked him about,' she said. ‘Our GP has sent him in for a bone scan.' She recounted the story chronologically and efficiently, just like a good patient – or his advocate – should.

The orderly began to wheel Jonathan away, so she bade me farewell and followed him. As they disappeared down the corridor, I recalled my own holiday at the River Club on the Zambezi River. Images of sunset over the Victoria Falls momentarily took me away from my own predicament to happier times.

‘Khadra?' The orderly was back to take me to my test.

When it had been completed, I had to wait for the radiologist to report the result. Around me in the waiting bay were all kinds of patients: the dying, the sick and the ‘worried well'. Most of these would have been men and women who until recently were not a part of the patchwork quilt of disease that is a hospital. The vocabulary they'd had to learn – the names of treatments and diseases and tests that were unwelcome but now integral parts of their lives – would have altered all of them deeply. And my knowledge of disease had not lessened its impact on me. In fact, succumbing to it myself had altered me fundamentally. At the very least, disease alters one's sense of mortality and shakes any notion of being able to depend upon or expect anything from life. In the space between the ticks of a clock, a life can be converted by disease or trauma from a reliable continuum to a continued reliance: a reliance on the health-care system.

But could the health-care system be relied upon? The individual components of the system provide a high level of care; it is the lack of unity between these components that strips the system of compassion and comfort. A car-accident victim might rely on up to 20 hospital departments, each with their own communica
tion system, bureaucracy and jargon. It would not be uncommon for his medications to be doubled up by doctors from different specialities, each focusing solely on one small part of the overall man. The elbow surgeon looks after the elbow; the knee surgeon the knee. The radiologist reads the black-and-white film that to her represents his whole condition. The pathologist looks down the microscope and notes small changes to his cells, spread out over a glass slide for analysis. There is no doctor responsible for our crash victim's overall well-being or for guiding him through the maze of surgical procedures, advice, medications and decisions he must make.

Medical staff have a basic will and duty to help patients, to cure them, to be liked by them – but patients are often left with a very different impression. Perhaps the health minister is the one to blame. The job of the health minister and departmental staff is to ensure that the health budget is not blown and that there are a minimal number of complaints from patient-advocacy groups.

It used to surprise me, anger me to learn that the health department stifles activity in order to meet the budget. Once a hospital has no more money for surgery, its theatres are closed and patients are diverted to other hospitals, perhaps with some residual budget still available so they can operate. But not everyone who wants or needs an operation will get one.

Some people argue that hospitals should use the money they are given more wisely and boost their productivity. They suggest that if staff were paid bonuses for improving their output, hospitals would be run far more efficiently. For example, nurses could be paid a bonus based on how many patients come through their ward or how many beds they change each day or even how clean the ward is. Doctors' bonuses could be based on positive
outcomes, the number of patients they see and patient feedback. The orderlies in theatres could get bonuses on the basis of how many people they move. This may alleviate some staff inefficiency, but it would do nothing to target the real problem: the inefficiency inherent in the system through ineffectual and unrealistic policies generated by the faceless bureaucracy.

Sadly, putting more money into health care would not solve the problem by itself. Just how much of the country's gross domestic product should we spend on health care? In India, it is very low. In the UK, the figure is about six per cent. In Australia, it is nine per cent. In the US, the figure is approaching 16 per cent. Yet no one would argue that the quality and safety of health care in the US is twice as good as Australia's health-care system, or perhaps three times as good as the UK's. What was really needed was leadership, in terms of our politicians getting the message through to society to expect and accept that our health-care dollars are rationed. Nothing more and nothing less.

As I waited for my results, to learn whether I was to live or die, Jonathan was waiting across the other side of the room. He was dressed in his street clothes and looked more like a human being and less like a patient.

‘How have you found being a patient, doc … being on the receiving end?' he asked.

‘It certainly makes you think,' I said dismissively. He did not push it. I did not want to get into a long discussion with him about my feelings, for I knew he had his own burdens and worries. I did not tell him how lacking in compassion I had found the system. Fleetingly, I recalled how my surgeon had told me with glee that I would of course know that the five-year survival rate for my type of cancer was really high. I had quoted statistics of this kind to patients myself, expecting it to make them feel better. When the
same probabilities were quoted back to me, I resented it, almost to the point of violence. I didn't want to know the five-year survival rate. I wanted to know the ten-year rate, so that I could bank on seeing my children get to high school. I wanted to know the 20-year rate, so that I could have a chance of seeing them graduate from university, or even the 30-year rate, so that I, like others whom I envied, could hold my newborn grandchildren in my arms.
How dare you presume to tell me about two-, three-or five-year survivals?
I had thought.

Yet I, like the surgeon treating me, knew that the majority of studies on cancer quote those short time spans. Yes, medicine has made huge strides in dealing with cancer. Leukaemia, testicular-cancer and lymphoma treatments are triumphs of modern medicine. Lung, breast, bowel, prostate and bladder cancer are now often controllable and, in many cases, curable. However, the statistics don't alleviate the pain of the uncertainty of one's own cancer outcome, the pain of being reminded that life is transient. We reach out to touch the hand of a loved one in the expectation that they will be there for the foreseeable future. We all know it won't be forever, but being unaware of precisely how long we have left protects the human psyche. Once life is circumscribed by disease into periods of days, months or years, we become prisoners on death row.

‘Are you still working?' I asked after a small silence.

‘No. I lost my job. We ended up selling our house.'

‘I'm sorry to hear that.'

‘It's actually not that bad. I spend much more time with the kids, and I read a lot now. I went to school, but that was it, so I'm enjoying catching up on my education.'

‘What are you reading now?' I asked.

‘Hemingway,
The Old Man and the Sea
.' He held it up for me
to see. It was poignant and ironic at the same time. The journey and the loss.

‘Dr Khadra!' It was the radiologist calling my name.

I went to hear the judgement being read. As I walked in, I hoped that not only my results would be good but Jonathan's too.

There was no sign of my cancer on the scan. I was clear – at least for a while. As I left, I saw Tracy and Jonathan walking out of the hospital, hand in hand. I felt glad that their love had been sustaining.

As I walked out of the hospital, I thought again about the question that Jonathan had asked me: what was it like on the other side of the desk, the surgeon as patient? Individually, the doctors, nurses and other clinicians looking after me had been reasonable – excellent in some cases. It seemed to me that it was the dilution of individuality into an overriding system that created the lack of compassion, the incompetence and the wastage.

So often I had heard people say that, perhaps now that I was sick, I would learn more about compassion, care for patients better. They had perhaps seen the film
The Doctor
and seemed to want to impose that rosy plot on me. I did not identify with the character in that movie. Being sick did not suddenly make me want to be more compassionate. However, it made me understand how unprepared my patients are for illness, for trauma, for the unexpected and for sudden life change. In fact, most of my patients had never faced their mortality. Perhaps it was beneficial to live in ignorance of their mortality while that ignorance lasted, but, as a result, the problem they had with the health system was that they needed it to provide more than health care; they needed it to provide wisdom.