Chapter I2 | Don't Look Down
Save for the wind, rain and thunder outside, the pub had fallen deftly quiet.
The Bar Man had stayed out from behind his bar, and taken a seat on of the bar stool next to the other two. All three with their backs turned to the unwelcome Shadow, who had been sent deeper into the darkness of his corner, by the wilting light of the fire. His face hung quietly, under a tasteless veil of nihilistic self-satisfaction.
The three stared straight ahead. Their individual expressions caught in the glass bottles behind the bar, contorted and reflected back at them. He looked back deep into his reflection. A twisted, murky mutation that told it’s own story, and summoned it’s own truth.
He bowed his head slowly and closed his eyes.
(November 27th, 2017)
It’s a noise I’d heard a million times before. Screeching, urgent. Effortlessly tapping open the darkest hues of the imagination. Often drawing out that slightly irrational albeit nonetheless wincing anxiety that it might be, this time, the soundtrack for someone close.
I heard it calling to me from several kilometers away. Gently growing closer and more familiar as every piece of the possibility of the next few hours grew tighter and sharper in my mind. The sense of surrender was strangely welcome, and utterly complete.
The wining finally pitched up outside the villa, only to fall abruptly silent, clearing room for the sound of boots on the ground and urgency in the air. When they finally came in to the bedroom, the ambulance crew looked down at me with a strange sense of curiosity, and professional compassion.
“Hi fellas. Be gentle, you hear. I’m a broken man”.
It was time.
12 hours earlier, Emma left me in the bath to run some errands.
She didn’t want to, but I insisted. I wasn’t going anywhere and felt that when the time came, I could wriggle my way back to bed relatively safely.
After about an hour, the bath water having turned both cold, and the right shade of miserable, I pulled myself together enough to attempt the return journey to the bed.
The bath had loosened me up a little, giving me a false sense of confidence for what was required. I slowly turned to my right, reached out to put one hand on the bath rail, and gently began pushing myself-up.
The Spasm exploded. Triggering an uncontrollable yell of pain, freezing me in panic. Terrified, I cowered back until the pain subsided.
Deep breaths now, I tried a different plain of movement.
BANG! BANG! FUUUUCK YOU!
“AHHH JESUS CHRIST!!”. The words careered off every wall of the villa.
More panic. Furious tears. Just, enough. Please. Enough.
Cowering back again, submissive and lost, irrational thinking pushed my toe out to pull up the bath plug. Maybe without the water it would be easier? Or maybe the Wizard was fighting back against a growing desire to give up and let go. Drowning, after all, is supposed to be a peaceful experience. (Yes, it was that bad. Despite the love. Despite the hope. I was thin. Pale. Cold. In unimaginable pain. Stressed beyond measure. But of course it would never happen. Until it did. But isn’t that the punch line that binds all tragedies together?)
I nestled back to the safe position I had been in for the last hour, and looked up out of the tiny bathroom window. The call for evening prayer had started a few minutes earlier (sorry about the swearing). The peaceful and pious vibe of the outside world was in remarkable contrast to the demi-monde of hell in which I had found myself.
“Help me?” Vulnerable, doesn’t come close.
Once all the water had drained, I started to slowly recount the exact movements I used to get into the bath in the first place. Plotting every step in minute detail, flagging potential detonation points and the exact moments at which I knew I was going to have to trade a Spasm blow, for an inch of progress.
Comically slowly, gasping in every breath, and now – rather unfairly – shivering with the cold, I started to slope towards the edge of the bath again. It was a heinously uncomfortable game of trial and Spasm. The margins for error had reduced from inches to milimeters, but I was committed now. I was terrified but equally determined and resigned to the fact that no matter what, I had to get myself out that bath, and in to bed. Quickly.
The process of getting from safe fetal position, to the penultimate one of this ridiculous charade (one leg on the floor, one leg out on the edge of the bath, shoulder leaning against the bathroom wall) before making the final slide down onto the bathroom floor, took about fourty-five minutes. And was littered with several Spams. Jabs and full-scale blows. I was freezing and exhausted.
My walking sticks had slipped and fallen on the floor behind the toilet about half an hour earlier. So were out of reach and out the game. Knowing I couldn’t walk without those sticks meant that some sort of crawling maneuver was going to be inevitable. The immediate challenge now however, was getting down to the floor.
For the time being, I was out of Spasm reach. Leaning against the wall and with one leg resting on the side of the bath, there was no pressure at all on my lower back. But to safely lower myself down fully, the resting led would have to move to the floor. There was no avoiding it, or the pain that I would have to volunteer on myself. The only possibility of minimizing it would be to slowly turnaround, bend back in to the bath and lower myself down backwards. (It’s worth remembering at this time, that five months earlier, I was half way through training for another attempt at a marathon. Complete and utter madness).
Twenty minutes later, half of me was finally on the floor of the bathroom. The other half, clinging wildly to the side of the bath. Any movement whatsoever was now triggering almighty, blinding explosions. Not just in my lower back, but down my entire spine, and across every rib. The final drop was only about 6 inches. I knew what was coming but I couldn’t fight it anymore. In an attempt to soften the landing I’d managed to knock some bath towels off the rail and onto the floor underneath me. I took a deep breath, made sure I would land in the softest possible part of the towels, and let go…
I wish I could remember the names of the medical crew, but I can’t. They were like guardian angels. Their names deserved to be remembered. Compassionate, slow and careful. Yet urgent, professional and brutally focused on getting me safely off the bed, and into the ambulance.
Like the quest for freedom from the previous nights bath, getting from bed to stretcher had to involve several moments of savage pain. Mechanically I was completely broken. Unable to walk, or barely move now, even lying down. But there was no other option, I had to be slid as carefully as possible on to the stretcher if I was to get out alive. Emma and Nisha watched on, lachrymose but brave, and willing to help out wherever they could. Ava, my darling, innocent and oblivious, was safely immersed in her imagination at nursery.
It didn’t take long before I was safely strapped in, and slowly floating my way horizontally, out of the villa. The stretcher couldn’t fit through the main corridor, so we routed out through the sliding doors onto the garden, past the outdoor dinning table and back into the lounge through another set of sliders. Even though I could turn my head from side to side, I fixed my gaze sternly to whatever passed over me- white ceiling, deep blue sky, slithers of light dancing through the palm topped barasti, white celling again, more blue sky, and then the cold harsh truth of the ambulance’s inner-roof. I didn’t want to look around on the way out. I didn’t want to see what I was leaving behind. Our things. Our life. Our home. Our chapter. Deep down I knew I wouldn’t be seeing or feeling that place again for along time. Perhaps ever. And I had far fonder memories to hold on to.
The sirens started up (unnecessary, but protocol apparently) and we made our way, my angels and I, to Dubai’s City Hospital. It was about 11am, and another beautiful day. The third, but not the last time the weather provided such an ironic frame to a scene from this story. The crew did their checks and called in my pile-up to their colleagues at A&E. In spite of their sonorous urgency, the wailing sirens and the angry horns beeping from every direction (patient drivers Dubai roads rarely breed), by staring deep in to that blue sky that was teasing through the ambulances miserly window, I somehow managed to find a moment of profound calm on that fateful journey. The Wizard had kicked in to take control of my breathing- deeeeep and looooong – and for a few precious minutes I was gifted a rare moment of winter-like stillness. Quintessential calm, before my private storm.
As we transitioned from Ambulance to A&E however, that moment quickly dissipated and was replaced instead by a rush of that boyhood fear and anxiety over all the pain that might be coming my way. The last time I’d been in an A&E, I was 5. All I had was imagination and whatever subconscious scars, that visit had left in me.
Emma had followed in the Jeep. I felt her hand close around mine as they backed me into a cubicle. Her presence was a visible sign of invisible grace. As they closed the curtain on our torment, my only means of holding on was the light that still shone from her eyes.
I’d woken up that morning almost precisely in the same position as I’d finally fallen asleep. But with significantly less will for life. I was broken. Physically, emotionally, (but never spiritually). Even the most atrocious of hangovers (and there’d been a few) would have felt like a celestial blessing in comparison to what I had to face during the first few minutes of consciousness that morning. I wasn’t in pain, but I knew I was unable to move. I wasn’t dead, but I knew I would be unable to stay alive for much longer. It was, by some margin, the deepest I had fallen. And the loneliest I had ever felt.
8 hours earlier, I’d passed out on that damp pile of towels on the bathroom floor. The exhaustion and pain of the great bathtub escape had grown too much. Lights out. Naked or not, a decisions was made somewhere between the higher and lower self, that I needed some enforced time-out.
I have little recollection of what happened after, but I must have come-to, dragged myself across the tiles, out of the bathroom and to the edge of the bed. How I then got into bed remains a mystery, although I must have managed it some how. According to Emma, when she came back, I was naked, supine and fast asleep.
The decision to call an ambulance, made itself. A strange veil of calm and quiet had fallen over the villa. All the worrying, second-guessing and frustration had melted away in the wake of our collective realization that I was slowly but surely drifting towards a point of no return. It was black and white now. I’d crossed the threshold. A new place, a new room, a new energy. And it came with a strict no return policy.
It wasn’t the closest I would could to dying over the next few months, but it was close enough to pierce the last membrane. The one that separates and protects us, from the terrifying scent of annihilation.
After recounting the story to several different versions of bemused medical professionals, I was eventually relieved of several test tubes of blood, and wheeled off for a CAT scan. Emma waited in the cubicle, alone and scared. I never took my eyes off her as I was wheeled away. I was in my own pain, but surrounded by people and professionals dedicated to helping me. Emma was in her own pain, arguably worse and harder to assuage, but had no one. It was a heat-breaking image that I’ll never forget.
Clearly the chaps attending to the CAT scan machine hadn’t been briefed on my condition, given the manner in which they dragged me from stretcher to scanner, like a rag doll. In this instance, a screaming, pleading rag doll. Their grasp of English and my grasp of Arabic were clearly not enough to be mutually understood, so it must have been the pitch and volume of my screams that led them to realize they needed to handle me more gently.
After being wheeled back, Emma and I waited together for the verdict, in abject silence. In the adjacent cubicle, an Arabic lady was howling in torment after being told she had an eptopic pregnancy. We weren’t eaves dropping. In fact it was the last thing we wanted to hear at that particular time, but the 2mm sheet separating our tragedy from hers, did little to offer any respect or privacy.
We hung there together for what seemed like hours, unable to pull ourselves out of this poor ladies story. I can hear her cries to this day. What was it about the things we remember in times of trauma? But eventually a Doctor came in to see us, and his presence seemed to instantly mute what was happening next door.
He was wearing pale blue, and had a well rehearsed face that exuded calm and kindness. My heart rate, nevertheless, immediately increased ten-fold. Emma’s hand closed around mine and squeezed in tight for support.
The piece of paper he was holding flapped conspicuously and teasingly in his left hand. I didn’t want to look at it. I wanted time to stop. Just stop. Just for a few minutes longer. Maybe this was all a bad mistake. But I did look at it.
At that moment that was all I was able to see and read.
“Ok” I thought, “good, I’m staying in. They’re gonna’ sort this out”
The doctor introduced himself, and we went back over my story again.
“It’s strange, Mr Burne, because I’ve had a good look at your scan and you have multiple fractures and lesions all over your spine and ribs. And you say you’ve had two lots of MRI’s recently?”
“Yes. And apparently good ones at that!” In my imagination, I had Dr S in a headlock at this point.
He shook his head.
“From what I have seen you have at least 5 very serious fractures in your spine, and your lower ribs also have several tiny fractures and lesions.”
A Doctors pause.
“I’m going to admit you to the hospital today ok, and have passed your records on to one of our Consultants. I need you to sign to this Admittance form. Do you have your insurance details with you?”
It was all happening very quickly. Major fractures. Lesions – what the hell were lesions? I had an MRI yesterday and was told my spine was healthy. What the hell was going on?
“Ok. But, but do you know what’s wrong? Do you know what’s happening back there?” I asked desperately
“We’re not sure the at the moment, Mr Burne, but I’ve passed on all your details to a Mr. Marashi, who will be your Consultant. Would you mind signing here for me?”
My anxiety had started to skyrocket. I was being admitted to hospital. That shouldn’t sound in anyway extraordinary, nor should it come as a surprise given the car crash of the last few weeks. But for some reason, the reality of it slammed me hard in the chest. To make matters worse, when I turned the paper over to sign the admittance sheet, I saw a tick in one of the many boxes spread out across the page. Written next to it, was ‘Oncology’. Yup, I knew what that meant (start running, Jack) but like after having noticed my new, concave spine on Dr S’s x-ray a few weeks earlier, I buried this new observation immediately, and as far from sight and sound as possible. Lest it offer some verisimilitude to the horror of what it might mean.
For the next hour or so, it all seemed to play out from somewhere else. Behind me, to the left, right, over there or out in front. But never above. That was mine. Straight up, and not a millimeter either side. That was mine.
The word Oncology had imprinted itself on the inside of my mind and initiated an abrupt withdrawal from everything that was happening around me. What had happened. And what was going to happen. Like a scuba diver sometimes uses the position of the sun to navigate during a dive, I’d attached my existence to whatever was appearing above me, as points-of-reference to guide my descent. My inevitable retreat, down into The Other Room. A new, deeper, and safer inner-sanctum, inside of which I would now be alone for many months to come. Not cut-off. Nor isolated. Just alone, with the pieces of myself that were about to be torn apart, and that would need to be put back together. With my fears, my regrets and my shame. My longing, vulnerability and boyish innocence. That private realm, known only to the cruelly wounded and unfairly exposed. A place to brood, hope, stare and prey.
Gaze fixed upwards, Emma close by, the various ceilings of the City Hospital floated past as I began triaging the thoughts and emotions raging in my head. In response to both the Oncology observation, as well as my immediate change of abode. Frantically trying to second-guess the future and get out in front of what was already set in stone. It’s astonishing how we can simultaneously be so optimistic and self-destructive under the weight of such vulnerability. One minute I had it al figured out. Nothing to worry about; it has to be that, just a precaution. The next; doomsday. The end. Panic. Trembling. And so the dance went; back and forth, dark and light, now and tomorrow. And the hospital blurred on by.
I don’t remember how or when we got there, but we eventually arrived in Room 428. It looked familiar. Clean, quiet and forgiving. With what little head movement I had, I looked around anxiously. The ornate, decorative iron cladding over the window. TV placed on the far wall. The neutral but slightly feminine wallpaper. The grey, cubist sofa bed. And that gentle, ubiquitous hum of medical technology in the air. So familiar.
I squinted hard to find the connection and it eventually came to me. Ava. My daughter, Ava had been born in an almost identical room just over 2 years earlier, 1 or 2 floors down. The exact floor I couldn’t recall, but nevertheless the memory laced the occasion with an impossible moment of warmth and light.
“They were blessed enough to bring you into the world, my darling. They’ll bring me back to it to. I promise!”
Suddenly, everything stopped playing out from somewhere else. My straight up had been invaded by a gang of urgent, smiling nurses, hell bent on moving me from stretcher to bed, as quickly as possible. Clearly underestimating the severity of my situation. I didn’t have much bravery left in the tank on that late November afternoon, and duly let my enthusiastic care-team know, through a series of groans, bleats and howls. They quickly dialed it down and adopted a more newborn type approach to the maneuver. Coasting me deftly and slowly onto the bed, quickly sliding up the protective barriers on either side, to hem me in. Other than the odd glance towards Emma for a dose of love and support, my gaze never left the straight-up. It would be a ceiling I would come to know very well, indeed.
Cannulas were quickly squeezed into either arm, one of which started sucking down fluid immediately, from the IV machine that stood like sentinel over the my right shoulder. Bleeping with the consistency of a maestro, every time it needed something. The other, awaited for a more sinister bag of truth.
The flurry of activity quickly evaporated to somewhere else again, as I sank back down into my new Room. The noise and urgency receded. The reality of it all, loosening its grip on my sensibilities. Emma’s hand had crept through the barrier to my left, and gently taken hold of mine. We were both trembling.
I glanced briefly up at my wife, who was dramatically silhouetted against the softening hues of the fast approaching dusk outside. Nothing was said, but everything was accepted between us. Whatever was on its way up the corridor towards us, wasn’t going to be pleasant. Privately, I had an inkling as to just how unpleasant that might be. And somehow, I think she did to.
Mr Marashi came in a few minutes later, flanked by his attending nurse. He wore the deportment of a man who cared as much about his patients, as he did about the science he used to treat them. He was extremely calm and composed, yet still gave off he energy of one who bore bad tidings (sorry doc, wounded spiritual seeker on high alert, you couldn’t hide it from me). He introduced himself politely, and confirmed that he was the Hospital’s resident Haematology Consultant.
“Hang on, Haematology, that’s blood. Isn’t it? That’s not Oncology. That’s Haematology. Blood. Fucking blood. YES! I was right. The big ‘O’ was just a precaution, I was right”. The relief was like a piñada exploding with a million laughing Buddhas.
Sadly, not even wise, learned Haematology Consultants can read the inner dialogues of their desperately optimistic patients. As my inner-party got into full swing, Mr Marashi came straight to the point;
“Christian, I’ve had a look at your scans and your blood results, and I’m sorry to say that everything is consistent with the characteristics of advanced Multiple Myeloma.”
The room fell deftly silent. Both Doctor and Nurse sensitively pausing to allow Emma and I to take in the news. The trouble was, neither of us had any idea what the news actually meant. Or how to take it.
“S-sorry”, I replied, “what’s Multiple Myeloma, we don’t…”
“It’s a form of cancer of the bone marrow….”
…he went on. But I never made it past the word cancer.
Emma, speechless but brave, leaned into embrace me.
“Shit, honey” was all I could whisper. “I’ve got cancer.”
Name : Christian Ogilvie Houlihan-Burne
PIN : 20179175
D.O.B : 25/02/1973
Date of Admission: 27 Nov 2013
Christian is a 40-year-old British national, who was presented to Mediclinic City Hospital on 27/11/2013 with severe low back pain of three weeks’ duration. He was unable to walk in the two weeks prior to presentation. He had no weakness in the legs and there was no bowel or bladder disturbance. MRI done at another hospital was reported to be normal. He was diagnosed with an anxiety state by the doctor looking after him. Just before his presentation this hospital, a CT scan of the spine was done and was suggestive of myeloma, showing lytic lesions and collapse of T3 and L1 vertebrae. He also started to develop bilateral chest pain. There was no past history of significance and there was no family history of myeloma.
Clinical examination revealed him to be in severe pain, unable to turn in bed. Examination of head and neck was normal. Cardiovascular examination was normal. Chest was clear. He had tenderness over the ribs bilaterally. Abdominal examination revealed soft abdomen with no organomegaly. Neurological examination revealed no neurological deficit. There was tenderness over multiple areas of the dorsal and lumbosacral spine.
At admission, he was found to have high calcium of 3.37 mmol/l with elevated creatinine of 380 and elevated urea of 20.5. IgG was done and was very high at 81 g/L. CRP was normal at 1.6 mg/L. LDH was also normal at 137 U/L (125-220). LFT was normal apart from albumin of 30 g/L. Globulin was elevated at 125 g/L and protein electrophoresis showed monoclonal band with M-spike of 6.1 g/dL. Bone marrow examination revealed the presence of plasma cell infiltration. Morphology varied from normal mature plasma cells to less mature forms, some with nucleoli. Cytogenetics showed absence of metaphyses in all cultures performed.
He received immediately after admission IV dexamethasone 40 mg daily, IV fluids at 125 ml/hour in addition to oral fluids, allopurinol and renal adjusted dose of enoxaparin.
Everything had quickly receded again to somewhere else, as I returned to frantically triaging a fresh stream of maniacal emotions and questions:
“Am I going to die? When am I going to die? Will I Iose my eyebrows? I’ll look ridiculous! Why did it hurt my back? Can I go home or do I have to stay? I miss Ava, what about Ava? Oh Christ I won’t see her grow up. NO! How will I pay my credit cards? What about my business? Shit, the car needs petrol! The cats will have to go. Why have I attracted this? What’s on the TV this evening? Why me? I need to tell Humph, he’s not going believe this. Shit, I need to tell my Dad. Mum’s gonna go crazy! Am I the one in four (the things they teach you in school)? Shouldn’t I feel much worse than this? What next? How long have I got? Will I ever get to see Chelsea play again? Hang on, aren’t they playing tonight? Is this all going to hurt? Am I going to be sick…..?”
On so on, and so on. It came at lightening speed, and at an impossible level of randomness. I suspect it wasn’t untypical for someone on the receiving end of such a dark and challenging news flash. In the background Mr Marashi was dutifully relaying the details of what the next few days, weeks and months of my life were to look like. With the nurse dutifully supporting him with a compassionate harmony of; “it’s going to be fine, you’ll be fine, don’t worry.”
I couldn’t register most of what was being said. However my terrified, cowering subconscious couldn’t help but filter out several key phrases on my behalf. Such as ‘bone marrow sample’, ‘chemotherapy’, ‘back brace’, ‘stem cell transplant’ and ‘kyphoplasty’. It was all complete and utter madness. 40 years on the planet with only a few stitches and a blood test to my name, and suddenly I was about to face arguably the most harrowing array of medical procedures known to man.
Never in our wildest nightmares. Cancer. And a rare one at that. One with no known cure, and according to research, significantly more likely to be found in people who are well into their sixties. Typical. Nice one, Christian. No wonder it went undiagnosed for so long.
For the record, my diseases was (and remains) a cancer formed by malignant plasma cells in the bone marrow. No known cause. ‘A complex interaction of both genetic and environmental factors’ is the official explanation. But nothing concrete. The truth, as far as I have come to believe, was that this was stresses ultimate victory. In the presence of chronic physical stress, the immune system, which typically keeps cancer at bay in most, is severely comprised. Mine, had been down and out. Beyond mercy.
What seems to happen is that the plasma cells produced in the marrow become abnormal, multiply uncontrollably and release only one type of antibody known as paraprotein, which has no useful function. And unlike many cancers, myeloma doesn’t show up as a lump or tumour, which is why it often goes undetected for so long.
Most of its symptoms and complications are caused by this build-up of the abnormal plasma cells, and the presence of that paraprotein in the blood and in the urine. The most common of these symptoms and complications includes, of course, bone pain. Something terribly unfortunate happens that results in the bones being weakened and softened by lesions, often resulting in severe fractures. I didn’t know yet but two of my vertebrae had completely collapsed, relieving me of over 3 inches of height. And as for those razor blade Spams? Well, those were quite simply, tiny tears opening up across my pelvis and lower-back. At the time of admittance, I had the bone density of a withering ninety-year-old man.
As for the change curvature of my spine, well that gift is called kyphosis. The compression fractures in the upper back had caused the curve of my spine to deform into what I had seen in DR S’s consultation room. In fairness he’d never seen my spine pre-MRI stair fall, so wouldn’t have noticed the dramatic change.
Other complications include recurring infections (ahh, pneumonia), fatigue (there’s the zero-clutch), and kidney damage. According to Mr Marashi, my kidneys were on their last legs. Perhaps even hours away from packing in completely. Helped, in no uncertain terms, by the industrial strength NSAID’s (ibuprofen basically) I’d been taking. Unknown to me at the time non-steroidal anti-inflammatory drugs (NSAIDs) are capable of inducing a variety of serious renal issues.
A few months earlier, I was stood on that platform at Naxjo station with my little girl in my arms. Her hand gently patting me on the back of my shoulder as if to communicate; “It’s ok Daddy. It’s ok”. As the chaos ensued around me that evening in room 428, I wrapped my entire being in that moment, and I took it down with me. Deep and safe, far away into The Other Room. I took Emma with me, to. Her smile, her love and her bravery. And I took something else; something so profound and unexpected, that to this day I still have difficulty explaining it. It was neither memory nor imagination. More an instinctual, sacrament of knowing. A warm, existential energy, imbued with a rich texture of certainty and decisiveness.
“I know”; it seemed to conduct in me “I know. I know, I’m going be ok.”
Somehow, my mind, body and soul seemed to have made a definitive and immovable decision that the work could now begin, because their healing was already done.
The tragedy, is that despite trying, I have never understood the formula behind that moment. The pain and suffering it might relieve I could.
Tears would still stream. Hands would be held tight. Lives would be turned upside down. And hearts would still break. Cancer is one of nature’s most appalling narratives. At the center of its howling vortex spin the most acute brands of human pain, anxiety, vulnerability and loneliness. Patients, wives, husbands, daughters, sons, mothers, fathers; no-one escapes. Everyone is made to suffer in their own way. Yet as I continued my gentle descent down into the sanctity of The Other Room, I knew I had been blessed in someway. Come what may – oh, and it was ‘all’ coming – I knew, I just knew, that I would be ok.