Christine Sherry lives in Essex and is an incurable journal writer.  She is studying Creative and Life Writing at Goldsmiths in an attempt to release her words from their journal prison and help free them into the world.  She is currently working on a memoir about being diagnosed with a brain tumour and everything that happened next.  She also writes fiction. 

Contact:  csher010@gold.ac.uk

 

 

I.

The Real Sick People

 

I was ill with something nobody could explain, least of all myself. I didn’t have the correct language, couldn’t find the adjectives, those needed to convince the doctors there was something wrong with me. My penance for incompetent communication was having to keep coming back. Visit after visit, back and forth to the doctor, always with the same result; there was nothing physically wrong with me, and this brought my mental state into question. Why else would I persist? But go back, I did, and again found myself in the waiting room of the doctor.

 

The place was brimming with real sick people. The man with flu coughing phlegm into a tissue. Another man, older this time, with a sty so thick on his upper eyelid it took a sheen under the white fluorescence of the room. A middle-aged woman entered limping and wincing every time her right foot touched the floor, you could tell her pain was real, not imagined.   With clenched jaw she whispered her name to the receptionist then sat next to a woman with a belly so big it nestled on her thighs. Even pregnancy seemed more of a medical emergency than mine.

 

I was not dressed like them with their oversized jumpers and elasticated waists, the uniform of the sick and infirm. I had just come straight from work and was clothed smartly in a grey suit dress with polished black knee-high boots, handbag from Mulberry, jewellery from Tiffany’s. I looked like I’d come to inspect the place rather than out of any medical need. Glances from the real sick people told me they wanted to rip me open and scoop out my health with their tongues.

 

In front of me a boy, no more than two or three years old, sat on his mother’s lap staring directly at me without blinking. To avoid his gaze, I took out my phone and started to look down the list of unanswered work emails. I tapped a reply to a few then looked up. The boy continued to watch me.   With snail trails glistening from nose to lip, his eyes were heavy with Calpol and they seemed to say, ‘and what are you doing here? Look at me, I’m so unwell they’ve had to get me off my head to make me shut up. You see my mother? If she took off her shoes and socks right now you’d see skin that resembles the surface of another planet. Do you think she’s running to the doctor every five minutes?’

 

The receptionist called my name and I hurried to the doctor’s office, running away from the little boy’s scrutiny, but telepathically I could hear him shout behind me, ‘It’s timewasters like you that are destroying the NHS!’

 

When I entered the office the doctor hardly looked away from his computer. All doctors’ visits followed the same pattern. They lasted no longer than five minutes and ended with a diagnosis of something benign and inconsequential.

 

“I get noises in my ear.” Just tinnitus.

 

“I keep feeling dizzy.” Ear infection.

 

“I keep falling over.” Do you drink?

 

“My eyes don’t seem to focus, my right eye doesn’t blink properly, the right side of my face is numb.” Are you stressed?

 

Years of appointments ended with the same result. There is nothing wrong with me.

 

I didn’t want to come here today but not being able to sleep was becoming a problem. I couldn’t remember the last time I’d managed to sleep beyond 3 a.m. Falling asleep was not an issue. It would happen on buses, trains, in meetings, in the middle of conversations. In fact, anything that required me to sit still for longer than a few minutes had me falling into sleep’s embrace.

 

To me, sleep had become a quick beautiful love affair, where our moments together seemed to be an escape from my lifetime commitment to wakefulness. Throughout the day sleep would call to me, a lure so bewitching I would often be caught in a trance of half-waking, half-dream.

 

At bedtime sleep would come in an exquisite, heavy rush. We’d sink into each other as the outside world turned into an echo then eventually disappeared. At 3 a.m., after only four or five hours, wakefulness would wrench me from sleep. My eyes would snap open as consciousness switched on. Or sometimes a terror would wake me. Mice running across the entire length of my body; an invisible force pushing down on my throat; a menacing shape watching as I lay in my bed. I would wake with a gasp or scream.

 

It was lonely lying there from 3 a.m. onward. My body was infected by wakefulness, with eyes so stiff that to close them would feel like an act of force. My muscles were electrified, eager to move; they didn’t want to be suffocated in the prison of a bed. And my mind did not stop. The thoughts raced around my head with such velocity that I could see the flash of them before I heard their thunder. For hours I’d lie in bafflement while next to me Sandy was willingly and helplessly under sleep’s spell.

 

When I entered the doctor’s office I saw him at his computer typing with his blunt, single digit jab. I saw his mug of tea, half empty but still steaming, and a homemade fruit cake wrapped in cling film waited to be eaten on the end of his desk. When he saw me I felt his need to get this over with so he can eat the cake before his tea goes cold, but when he looked at me I felt his recognition and the look on his face said ‘oh no, not you again’. I told the doctor the reason for my visit, I tried to cram as much detail in as possible before his inevitable interruption after thirty seconds.

 

“What do you do for a job?” he asked, with his eyes on the computer in front of him.

 

“I work with computers for a university.”

 

“Ah, I see. So no operating dangerous machinery or driving involved there then.” He typed something into his computer and I wish I’d lied about my occupation.

 

“Tell me, are you stressed or worried about anything?” I knew this question would come up, it always did.

 

“Doctor, I’ve had this sleeplessness for almost two years, I don’t think there’s a worry in the world that goes on for that long. But it’s not just the sleep, there’s other things. I feel, well, weird. I wondered if you could send me to see a specialist.” Demand to see a specialist, that was a tip from a friend who took her mother to the doctor with a sore toe then later a specialist told her it was diabetes.

 

“I can give you sleeping pills, that should get you back on track.”

 

“I don’t want drugs. Why can’t you send me to a specialist?”

 

“But who would I send you to? I don’t know what’s wrong with you,” he said.

 

“Well, can’t you examine me, then decide?”

 

“Examine you?” He finally takes his eyes away from the computer screen and looks at me as if I’d just said something ridiculous. “How? Oh, no, no, no, we don’t do that here, that’s more something a specialist would do at the hospital.”

 

It was 6pm. I had been awake for fifteen hours and had another four to go. At that stage of the day hours were just measurements of misery, a countdown until bedtime. Even thinking was a conscious effort. I wanted to curl up on the floor at the doctor’s feet and go to sleep, purring. Through the drunkenness of sleep deprivation my frustration found a way out.

 

“Then what do you do here?” My voice was raised and stretched with rage, “What do you do? Because as far as I can see you’re just a drug dealer with an education and a notepad.”

 

That night, over dinner, I told Sandy about my small victory at the doctor’s office. How eventually the doctor had relented and given me a referral to see a specialist, an endocrinologist. Sandy listened distractedly, feeding Magnus, our dog, scraps from the table. I had told him so many similar stories over the years, why should he find anything different about this one? He knew enough to see that I was happy with the outcome, and so he was happy, and that was all.

 

I lifted the plates from the dinner table and moved towards the kitchen. Then I was on the floor. I had fallen backwards, with the good sense to bend in the middle and land on my bum. Still holding the dinner plates, Magnus took the opportunity to lick them while I sat on the floor, gripping them in stunned silence. Just as quick Sandy reached down and helped me up. We both asked each other what had happened. Magnus smacked his lips together in appreciation of the stolen food. I stood and looked down at the floor, hoping to find a raised piece of carpet or even a banana skin. But the ground was flat and clear.

 

II.

There Are Other Things It Could Be

 

Three months passed, the standard wait for a consultant. In that time summer begins and at 3 a.m. I saw daylight tiptoe away from the night earlier and earlier. Then summer sent heat, and it came quick like a fever.   During the sweltering days I fermented into sleep. At work I looked for places to nap, toilets, a disused meeting room. My lunch hours were spent sleeping in the park next to where I work. The tube trains had no air-conditioning, inside the heat was tightly packed and I was knocked into unconsciousness for my journey home. I would wake holding a half-eaten snack, or in my slumber lay a book, one I had been carrying around for weeks but remained unread. One day I woke and saw the leaves on the trees turning yellow, red and brown, as they sailed away from their branches to meet the ground. Autumn had arrived and so too my appointment with the endocrinologist.

 

Dr Koo-Chang was of Chinese origin with a light Scottish accent. It was a nationality cocktail of congenital stoicism. Everything else about him was ordinary. He was around middle-age; he wasn’t too fat nor too thin. He dressed plainly in a shirt, tie and trousers. His hair was cut short and parted to the side. Behind his silver-rimmed glasses were eyes that would never betray what’s inside, with the innate ability to always look unconcerned. If his desk reflected his mind it was clear, uncluttered with just one file placed in the centre, and that file was me.

 

I had done my homework on Dr Koo-Chang. When the appointment letter arrived it mentioned him by name. There is a place on the internet where people go to rate their physicians. Just like a film or a book, you give them a star rating out of five. Dr Koo-Chang was a one-star doctor with many of the unimpressed saying he ‘spends more time writing than listening to what I’m saying’ and ‘knows nothing about endocrine disorders’.

 

“I’ve read your notes,” he said, “and the reasons why your doctor has sent you here, but why don’t you tell me why you think you’re here.”

 

I tell him about the sleep and he wants to know more. How long has it been going on? Did I ever sleep well? How did I feel when I woke up at 3 a.m.? As I talked he wrote. His questions stretched all the way back to my girlhood and mild eczema and came right up to the present day. He questioned everything:

 

“What do you mean dizzy? Dizzy how?” or “When you say your face is numb, is it the whole of your face, the top half, bottom or one side?”

 

During the retelling of my medical history there was a quiet knock on the door. Dr Koo-Chang held his hand up indicating that I should stop talking. We both turned to see a nurse nervously smiling and apologising while she picked up a file on the back table. His face was no-longer impassive. He glared at the nurse sharply. A warning, not the usual collusive smiles I am used to seeing medical colleagues exchange.   His look followed her until she left. She closed the door behind her and for a couple of seconds he continued his stare.   Once he was sure we would not be disturbed again, he turned to me and asked me to carry on.

 

‘He’s on my side’, I thought.

 

I tried to remember the superheroes I knew from films and comics, didn’t they all have a plain and nerdy alter-ego just like Dr Koo-Chang?

 

After about twenty minutes the questions stopped and the tests started. The strength of my arms and legs were tested by Dr Koo-Chang holding on to a limb while I tried to pull it away. I was strong and could knock him off balance. There was a strange test where he made me stare at a single point and blink rapidly for one whole minute. A minute was a long time, I felt stupid standing there blinking. I wondered if this was some kind of joke, an act of buffoonery to crack open a tense situation, but I don’t think Dr Koo-Chang had ever been humorous in his life. When I stole a glance his way he said, “don’t stop, keep blinking, thirty seconds more.” Then he wrote in his file.

 

I started to fail the tests. When I stood with my eyes closed I was unable to stay upright for very long. My drift to the ground was slow and Dr Koo-Chang was able to catch me. Standing on one leg was the same. When asked to close my eyes and touch the tip of my nose with my index finger, I was shocked when I felt my finger come to rest on my eye. Such simple things I couldn’t do, why had I never noticed before? He asked me to walk to the end of his office and back several times. He watched, pen poised.

 

“Do you always walk like that?” He asked.

 

“Like what?”

 

“Does it feel like you’re walking on the deck of a moving ship all the time?”

 

And in that one sentence Dr Koo-Chang perfectly explained how it felt to be me. I was on a ship at sea unable to tell if I or the horizon was moving. Some days were stormier than others and I’d suddenly be thrown against the wall, or bashed into things, a chair, a table, a person. I travelled through the world like a pinball. I would look into the distance and be unable to focus because nothing was still. I told Dr Koo-Chang this, and maybe it was useful because he wrote it down.

 

He asked me to sit down. I sat silently while he wrote. Eventually he put down his pen and in a deliberate move, he turned his chair to face me full on.

 

“I don’t think I can help you. I don’t think your symptoms look like endocrinology problems. They look like symptoms associated with neurology. I’m going to contact your doctor and recommend you for a brain scan.”

 

He wasn’t meant to believe me. What was meant to happen was that he would half listen while sipping tea, then interrupt me with comments that made me feel silly and neurotic. When we’re disturbed by a phone call or a colleague walking in, I was meant to hear a short conversation between them about how busy they all are, there would almost certainly be some flirtation. Then he’s meant to give me a perfectly reasonable explanation for all my medical problems before sending me on my way. But instead he listened, asked questions and didn’t stop until he knew exactly what it was that I was trying to tell him.

 

Over the course of the hour spent with Dr Koo-Chang something had changed. There was a kink in the continuum of life. A dent in the universe that was so small it had gone unnoticed by everyone except for Dr Koo-Chang and me. Although I had spent the past few years puzzling over different ailments and searching for what could be wrong, my fears were just hunches and were always quashed by the people around me. They would say I’m just a worrier and my symptoms were linked to my anxiety. The implication being that if I stressed less then all my maladies would magically disappear. Was I causing this? I started to believe I was. The person I understood myself to be was a hysterical, stressed out hypochondriac with too much access to medical information on the internet. In his office that day, the thing that had changed was that all my suspicions were gone and had been replaced with the certainty that something really was wrong with me.   He believed me, a matter so important to me in that moment that it almost took my mind from the real issue. What could be wrong? Before I left his office I dared go to that subject.

 

“What do you think it could be? I’ve done some research and noticed I’ve got the same type of problems as someone with Multiple Sclerosis and I’m kind of the right age for it. Not that I’d want that. But then I was looking at another auto-immune disease that causes facial weakness. But then you say neurology, and I know you can’t quite say, but you seem to have something in mind, so I wondered if you could just give me an idea.” I shuffled my way to the question, “Do you think it’s a brain tumour?”

 

“There are plenty of things it could be before it could be that.” His face, expressionless, told me nothing.

 

When Sandy came home that evening he had the usual struggle of shuffling off his bag and coat while Magnus jumped up at him, all paws off the floor, doing the joyful dance of his homecoming. Unusually I lurked in the hallway needing someone to tell. Someone who wasn’t canine whose response was going to be more than just licking my face.

 

“I failed the tests. At the endocrinology appointment, I failed the tests.”

 

“What does that mean?” He said as he bent down to stroke Magnus.

 

“I don’t know. He’s sending me for a brain scan.” Sandy stood up, put his arm around me and kissed my forehead.

 

“Don’t worry,” he said, “everything will be all right.”   And I felt as if he’d done the human equivalent of licking my face.

 

III.

If Science Had a God

 

Something happened. Within a couple of days of seeing Dr Koo-Chang an MRI brain scan was arranged. It was marked ‘urgent’. I thought the NHS measured time in months, not days. Watching their urgency worried me, but Sandy and I don’t talk about what the MRI could show because he doesn’t deal in hypotheticals. Instead there was a first, something he’d never done before, he called work and told them he’d be late so he could drive me to my 7 a.m. brain scan. Something unsaid was gluing us together. My nerves ricocheted off the future, like they knew before I did, that something major was coming.

 

The radiographer spent a long time with me explaining what’s about to happen. He stressed that he couldn’t give me the results but would send them to my doctor. Behind us the large MRI scanner let out mechanical breaths and sighs in anticipation of swallowing me whole. If science had a God it would be the MRI scanner, doctors are devoted to its divine messages. I’m given big earphones to wear, protecting my ears from the noise of the machine. The radiographer laid me down and placed a cage over my head to keep me from being able to move it.

 

“Close your eyes,” he said, then I felt his presence disappear.

 

He was going to a safe room, protecting him from the magnetic field that was about to surround me. He watched from his bunker, behind thick glass windows, as a copy of my brain appeared on his computer.

 

I felt the table I was lying on slide backwards and the glow of light behind my eyelids darkened. I was in its belly. The machine was loud with claps and drills, then it thrumed like a tuneless electric guitar. Once in a while the machine paused and I could hear a folk song piped through my earphones, but when the machine started its gamma roar, all I could hear of the music were whispers, like ghosts of patients past talking to me from beyond.

 

I didn’t open my eyes again until I felt the radiographer free my head from its cage. I was ready to climb off the table but he said he needed to put me in again, this time dye would be pumped through my veins, it makes a better image, he said.

 

‘There is something,’ I thought, ‘otherwise why do they need a better image?’

 

As he inserted a needle into my arm I watched him for signs. Was that a look of concern I saw on his face? Why was he asking me questions about when I’ll be seeing my doctor next? Did I detect more sympathy in his voice than before?

 

He worked quickly. He placed the cage back on my head and I felt the sting of dye through my veins, a metallic taste in my mouth. Eyes closed, I imagined him in his lead box looking at his computer screen.

 

What do you see? I wondered.

 

Does it cause you alarm?

 

 

Do you call to a colleague to come and look, both of you admiring the pictures as they slowly appear?

 

I am your first scan of the day. Will you have more like me today? More bad news to tell.

 

Have you grown used to seeing these life changing images?

 

Or for every worrying case do you gently close your eyes and say a quick prayer for the human inside the machine?

 

 

Over the next couple of days, I became fixated on how the news will be delivered. How will they tell me the results? A scene that I have taken from films and television plays over in my mind. The doctor calls me on the telephone asking me to visit him and to bring a relative. The relative is there to pick me up when I collapse to the floor on being told the diagnosis. The relative asks sensible questions, gets more information, something I can’t do due to my constant wailing. Eventually I calm down enough to ask, “Doctor, how long do I have?”

 

Is that how it happens?

 

On the morning of my diagnosis I exchanged angry words with Sandy. From the moment I fell out of bed my balance seemed difficult, like the deck of the ship I walked on had been caught in a storm. When I tried to carry black tea, the liquid swelled out of the cup and scalded my hand. I screamed. My right hand did things like this all the time, it spilt drinks and could clear a table full of crockery with one misplaced gesticulation. ‘Clumsy,’ people said. I seemed to have no dexterity, my handwriting, usually neat and curly had become scratchy shards, unreadable and unrecognisable to me.

 

When Sandy heard me scream he shouted down the stairs.

“Oh what’s wrong now?” There was strain in his voice. I accused him of not caring of not being understanding enough, then I left the house for work, slamming the door behind me.

 

Even though there was a storm whipped up inside of me, outside the air was motionless. It held its breath and waited. News reports were full of forecasts of wind and rain; they said a hurricane was on its way.

 

At around 10.30 a.m., after my first meeting of the day, my phone flashed with an incoming call. It was the doctor. I hung back inside the empty meeting room, and as I took the call the large glass walls of the room framed my work colleagues walking by. Someone was removing a paper jam from the photocopying machine opposite, complaining to no-one in particular, as if it was something to complain about.   The doctor sounded hesitant but hasty.

 

“It’s a brain tumour,” he said, “behind your right ear. 42 millimetres by 36. An acoustic neuroma. I’m sending you to see Mr Pollock, the neuro-surgeon, as an urgent case.”

 

‘So this is how it happens in real life,’ I thought. At work with the smell of coffee in the air and people arriving for a meeting in the next room along. Some I knew and had worked with for years, they waved as they walked by. I slowly raised my hand and waved back.

 

I did not cry. I did not collapse. I did not ask the doctor how long I have. I did not have a loved one there to console me.