See there was a time, many months post my brain surgery; the medication I was supposed to be taking for the rest of my life – began to have serious adverse effects on me. The endocrinologist I was seeing at the time admitted me to hospital whilst she played around with my dosage regime in an attempt to mirror what the medical text books told her should be happening.

So here I was, a new arrival in an open ward shared with three other patients in a private hospital.

Hospitals are a place where families converge to show respect to those who are dying or seriously ill. The patients are generally parents or grandparents and each have a life story filled with achievements, milestones and precious memories. 

Each visitor reveals a little more about your ward compatriot

Every time somebody visits, given the lack of privacy, all conversations are public; and overtime build a picture of a persons life before they became incapacitated and a shell of their former selves. You can’t help but listen to the doctors and specialist discussions with family members as each visitor reveals a little more about your ward compatriot.

Diagonally from me was a frail old man, he looked kinda like the Mr Burns character from the Simpsons. When I become aware he was starring at me and whispering something, I concentrated harder and could just make out he was saying “help me”. I thought ‘Jesus’ this doesn’t look right, then he become louder “help me, help me, they’re trying to poison me”. I noticed the pale skin on his arms was stained purple with bruises from a drip line inserted into his arm.

With out hesitation I pressed the nurse call button only to be greeted dismissively from the nurse who appeared to be very familiar with the behaviour. “Mr Erlich, don’t pull these out dear your daughter will be here soon”.

I felt foolish.

Directly opposite me was a guy named David who looked just a couple of years older than myself, but he remained motionless and unresponsive albeit the occasional gurgling sound. His wife arrived and held his hand whilst she spoke to him “Gramme from Blairgowrie says hello, oh the Johnston’s are coming over on Sunday” It seemed in recent times he had a fulfilling life complete with a holiday house and many social interactions. He looked like he was straining to respond but was unable speak or raise an eyebrow.

he’s never been the same since… i should never have agreed

She turned to look at me, I smiled; she then said “he’s got Parkinson’s we had a terrific Christmas he wasn’t like this at all – but one of the doctors recommended he have a colonoscopy and he’s never been the same since… I should never have agreed.” Just then their daughter and her partner arrived, and it became apparent this loving family was struggling to deal with the challenging circumstances.

Adjacent to me was a gentleman who seemed in his seventies, grandfatherly, with a large gash on the side of his head – no doubt from a recent fall, I figured. He got out of bed and approached me “what are you in for son” “complications from a brain tumor” I responded. He looked deeply concerned and caringly grabbed my foot “brain tumor, oh that’s no good – my wife’s not very well and I’ve got to get out of here to see her”. He then walked over to the nurses station and I could hear him say “who’s in charge here, I need to go and see my wife Vera she’s a very sick lady”. The response was firm “John the doctors are saying you need to be here till Thursday so that’s four more days”.

I felt deeply sorry for old John he cared very much for his wife and just wanted to see her.

Each morning at around 6:00 a.m. I would be visited by the endocrinologist – she was around my age, a bit unconventional and incredibly forthright, and not used to being questioned about her expertise. The truth being I was gradually loosing confidence in her and no longer buying into her schtick. Up until this point I had been very trusting and naive with the advice I’d been given, and assumed the medical fraternity would always provide correct information based on the latest research – unfortunately the reality was eventually proven to be different.

She had the results of the latest blood test and I was keen to get a handle on how much my body was able to produce the steroid cortisol on its own. “Well how much we got?” I impatiently queried, “not enough for someone like you” she vaguely responded. “How much is that?” I asked, “225” was the answer. See your cortisol production goes on a rhythm; the peak is approximately 8:00 a.m. and the lowest point around midnight. Blood test are generally taken first thing in the morning to measure your highest reading, the statistical range is between 148 and 750. I’ll take an informed guess that my previous normal prior to the tumor crushing the pituitary gland was mid 500’s. I was to learn down the track 225 was an ok result, and just within normal range and could have been something to build on.

What I didn’t know at the time was the impact of the endocrinologists insistence on tripling my hydrocortisone dose, would eventually cause further adrenal gland atrophy, until over time my morning blood test reading only measured 50

It took 18 months of perseverance, disappointments and near death experiences to regain the levels back to where I started post brain surgery.

Every morning like clock work Mr Erlich’s adult daughter would arrive and dutifully set up camp next to his bed. She was a flurry of energy, wore a faux Leopold skin coat, talked loudly whilst running her own families affairs, and ‘got things done’ during the day – she was the quintessential Jewish matriarch. I was impressed at her industrious management of their complex families needs, whilst taking absolute control of her fathers hospital stay.

She said to me “they give to you, you gotta give back – you know how it goes”. Her father was 98 years old, lived independently on his own and only recently retired. He had a housekeeper two hours a day and the daughter would visit him every afternoon. Fiercely independent, successfully self employed for generations, and adverse to hospitals and medications.

I admired this family unit greatly.

But it was when visitors were obliged to leave for the day – the real shenanigans started.

i’ve been held against my will, they’re trying to poison me

The ward was quiet except for the distant chatter of nurses, when I overheard a telephone call frail Mr Erlich was making – I could hear the other person on the line ‘clear as day’. He had rung the police and was saying “I’ve been held against my will, they’re trying to poison me”, for a moment they were taking it seriously until realising the circumstances, “can we talk with one of the nurses please” was the response.

Later that evening after falling asleep, I felt a lurking presence and awoke to find old John sitting next to my bed rifling through my phone; I grabbed it from him as he apologetically said “I’m sorry is this yours?”. See the medication he was taking was making him do weird things. Nonetheless we chatted for hours as he told me about his recent fall, concussion and how he gained the large laceration on his head. He delved into detail about the house he and his wife lived and raised a family in – the location, renovations and the annoying step that led to his tripping over. I enjoyed his company and the time spent with him immensely, as he distracted me from my own medical predicament.

A few hours later in the middle of the night old John started to have a conversation with an imaginary person, it seemed they were scheming to break in to the hospital so he could escape and go see his wife…”We’ll get Ronnie from the back street and the two of you will distract them and then I’ll make a break for it – see Vera’s not a well lady”.

Moments later he sprung out of bed, marched over to the nurses station with his hand shaped like a gun, then in a commanding authoritative voice said “right – you’re all under arrest”. Initially there was a surprised reaction until old John continued with “I’ve got to get out of here and see Vera, can someone call me a taxi – she’s a very sick lady” The answer was a firm “Thursday John, Thursday – now go back to bed dearest”. The incident become the talking point for days amongst the entire hospital wing.

My desire to finally get some sleep was thwarted by David opposite me, despite not moving or talking for days, his bowels would function with regularity. It would take a team of four people to change his continence protection, leaving a lingering stench that wafted through-out the ward. At least his gastro-intestinal system was working well.

I should have twigged something was awry with the endocronologist and there were warning signs, for instance she referred to me as one of her ‘panpit’s’ being short for panhypopituitarism (no pituitary function), which was the condition I was left with after surgery to remove a tumor from the base of my brain. She couldn’t understand why I was feeling so wretched and wasn’t entertaining the notion I could have been over medicated. Alarm bells rang when I asked about a critical test result that measures ACTH, the hormone the pituitary secretes to stimulate the adrenal glands into producing life giving cortisol – her response “can’t tell you, they’ve lost the results”. Looking back in hindsight, I believe she purposefully withheld the data because it was likely to have shown an encouraging number, contradicting her diagnosis to substantially increase my steroid dosage. Incredibly her sense of righteousness and perceived authority was more important than my long term wellbeing.

In some respects I’m thankful because this hospital stay became a turning point whereby I would vow to learn as much as possible about the pituitary and endocrine system’s and take control of my outcomes. I delved in deep unearthing obscure but useful research studies conducted in Soviet Russia to life long patient outcomes in Scandinavia – I ended ended up knowing more about the subject than any specialist I’ve since met, I even had to educate my GP on how the HPA axis works (i.e. the interaction between the hypothalamus, pituitary gland and adrenals).

I was fortunate because the tumor left a slither of viable pituitary tissue which had the potential to partially or fully restore function, dependant on surrounding structures remaining undamaged. It was enough hope to embark on a determined quest to be steroid free, because taking no action meant I remained a cardiovascular time bomb with a limited life expectancy. See the steroids were leaching calcium out of my bones and depositing it through-out the tissues, magnesium markers dropped dangerously and despite spending time in the sun; my vitamin D levels plummeted. I suffered from induced high blood pressure and was in a constant state of hyperinsulinemia which meant I was gaining weight uncontrollably. Moreover corticosteroids leave you immunocompromised and defenceless against the ravages of influenza or worse.

Coming off the steroids was against conventional medical advice for my condition and for good reason – you can die. Over a period of two years somehow I managed to achieve the goal and survive… but only just.

Thursday came around and old John was excited to be leaving when his son arrived to pick him up. There was some final paperwork for him to resolve at the nurses station which gave me a chance to talk with his son. “Boy he sure is keen to go see Vera, she’s sick right?” he paused, pursed his lips and slightly shook his head – enough said. “And the house where he tripped over?” – turned out he had been living in aged care after his wife passed away years ago.

A day or so latter it was my turn to leave the ward, as I was gathering my things frail Mr Erlich’s matriarchal daughter came over to me and wished me well and hoped I would get better soon – I felt comforted by her kind heartedness. Just then David lying opposite’s wife arrived and took her usual position seated next to her ailing husband, when he inexplicably said “hello” this was remarkable as he hadn’t uttered a word all week. It was such a positive note to be leaving the ward on. We shared our goodbyes and you could see the renewed optimism in her eyes.

I would like to believe he eventually got back on his feet and had some semblance of a life.

I often think about old John, and hope that when his time comes; he will be reunited with the love of his life Vera.

And who wouldn’t want to live to the ripe old age of 98.

Behind the hospital gowns and the failing bodies are real people who’ve been in their prime, previously created a life supported by family; and will one day be remembered by fond memories of who they once were.

.

Despite the medical trauma happening to me – in my mind, I had already gone to a better place.

See there was a time when I owned an old trawler style boat based in the Hawkesbury/Pittwater waterways – she was a real classic, solid, the type with a sliding door next the helm, with a mast and boom…pretty as a picture. However the doctors voices continually interrupted these pleasant visuals.

“Nope, no good, his heart beat is over 210, geez blood pressure over 180, hang on he’s going into SVT”. The emergency lead was a mature aged woman, very much in control, kinda motherly.

However I particularly noticed this junior doctor, Asian, much more empathetic, who seemed to be on his game.

i knew in my heart i was dying

I knew in my heart I was dying, I figured my out-of-control heartbeat, and abnormal rhythm was going to end with a fatal cardiac arrest, stroke or clot in the lung – sooner or later.

There was sweat dripping off me, I was pale, cold and clammy… well, I was more or less running a marathon, whilst lying paralysed on a hospital trolly. The doctors faces gave it away, they were measured but panicked nonetheless.

“We’re going again – charging – stand back – clear!” WAAACK.

Did I tell you about the woodwork? They don’t build them like that any more, teak parquetry flooring, lacquered wood everywhere. The steering wheel was like something from an old sailing ship, I’d have one hand on the wheel, one foot standing out the door, she just chugged along forever. 

“Hows he looking?”, “OK we’re now down to 130, wait a sec – WHOA! back up again – hang on! He’s gone into afib”.  “Oh crap!”

I never anticipated being back in hospital, it was just like any other evening, my partner had gone to a yoga class that bans mobile phones, whilst my teenage daughter and myself relaxed at home.

When out of the blue – it struck. At first a noticeable palpitation in the chest, then a pounding, followed by a throbbing in the neck. My legs suddenly buckled from underneath me and I found it difficult to breath, somehow I managed to crawl onto the bed. There I would wait for a minute or two hoping it would go, but it didn’t – Jesus Christ here we go again!

My daughter remained stoically calm as she called emergency services, I could hear them relay instructions to her; not long after the haunting wail of the ambulance’s siren would disturb the neighbourhood once again.

You see I was a brain tumor survivor with a long history of complications, and had regularly found myself in the back of an ambulance for one reason or another. However I figured I had beaten the tumor, and had even successfully weaned myself off the recommended steroid replacement therapy. But I remained weakened and depleted, so any niggle or ailment was amplified disproportionately.

The paramedic ask me why there was a tear rolling down my face. I told her ‘I was sick of this’ and ‘I’d had enough’, but I was really upset that my daughter was subjected to another traumatic event that she didn’t need to experience.

Holey smokes this was bad

In the emergency room I’d been blasted by the defibrillator twice to no avail, when the Asian guy reassuringly held my hand “I’ve checked the results: there’s no evidence of a heart attack and we can’t see any clots, but your electrolytes are all over the place – hang in there”. The emergency lead interrupted “look nothing’s working, we’re going to stop your heart and restart it – OK?” At that point my partner was ushered out of the bay, things were going to get ugly… they’ve decided to kill me. “Here we go, are you ready? I want you to take a deep breath… one, two, three” HOLY SMOKES! this was bad – everything started to fade and turn sepia like an old western movie and my lifeless body ached everywhere… is this what it’s like to die? – Bloody hell.

You know one of the most enjoyable parts of cruising around Broken Bay is an area just outside the entrance to the Pittwater. Sheltered but susceptible to gentle ocean swells, it’s a very gratifying experience gliding over each rolling swell, one after another; so therapeutic.

“Good, he’s back with us… 80 bmp, 100, 160, yeah nope 220, aargh” she was pissed! “load it up again and increase the dose” I could only muster a meek protest ‘oh fuck no’ but quickly apologised for my profanity. “ Yes fuck, I know. Are you ready… one, two, three”

I kept my boat at Halvorsen’s historic boat shed, up the end of Cowan Creek nestled in a beautiful National park. The place was interactive history, though partially derelict, shipwright workshops, upholsters, slipways, nothing had changed for 60 years. Old Mr Halvorsen would arrive every day in his classic Rolls Royce just before lunch to pick up the mail. There was even a vintage factory whistle sitting above a clock. I was privileged to have experienced my time there.

“OK this is a problem I need 250 ml hydrocortisone STAT” My heart kept dangerously racing despite every attempt to bring it under control. So now they were bringing out the big guns – steroids. I understood their damaging side effects by hard won experience, and tried desperately to intervene; explaining it would take a month for my adrenal system to get back to normal after such a massive dose. Less than impressed the lead Doctor laid down the law “Look! you’re in an emergency room and I’m here trying to save you – alright?

There’s something about diesel displacement boats I just love, the harmonic hum of the engine, the slow pace, you can tow a dingy behind without bother, and take in the scenery. And around the waters of the Ku-ring-gai Chase its a natural fit. But its the faint whoosh you can hear each time the propellor turns that’s subtly mesmerising – whoosh, whoosh, whoosh, whoosh…

“Tim…Tim,TIM!” the Asian doctor gently stirred me from my fixed ceiling gaze, only then realising I had completely lost track of time. “You’re doing alright, your heart rates down to 130, your blood pressure is dropping too, but your heart rhythm remains in atrial fibrillation”. This guy had a comforting manner and you could tell he’s was going be somebody important someday. “You weren’t looking too good back there, but there’s some colour in your face and you’re no longer critical. I’ve spoken to cardiology and they’re going to admit you, but we have to monitor you for a while yet”.

We would take our toddler son on wondrous adventures, cruising in and out of the fjord like inlets shrouded by bushland.The Kookaburras would cheekily sit on the boat rail, as we ventured ashore to explore sandy beaches, waterfalls and enjoy a picnic or too – oh, but watch out for the goanna’s they’re huge, and will boldly steal your lunch. Our son would endlessly splash around the shallows, and protest when it was time to go back on board. And when the sun was setting, we would be perched on the flybridge with a cold drink in hand, smooth teak deck under our bare feet – the slight burble of the generator breaking the stillness of the twilight. Such is this magical place.

“Mr Buchanan, Mr Buchanan” one of the nurses broke my daydream “well done – you’re back in sinus rhythm, and your heart rates back to normal… I’m taking you up to the ward now”. 

As I was wheeled away, I nodded my head toward the emergency lead doctor in gratitude, she briefly smiled, but was busily trying to save someone else’s life.

And so began a new chapter, another set of challenges and obstacles to overcome and defeat.

But who I’m I to complain? 

And… should you ever get a chance to cruise the extensive waterways just north of Sydney harbour, take your time and saviour the experience.

For I promise you – it will stay in your heart forever.

months to learn to walk again

You see I’m a brain tumor survivor that was left with a damaged pituitary, but still managed to wean myself off hormone replacement therapy. However it was the corticosteroid – hydrocortisone that was the most difficult to discontinue. It nearly cost me life on numerous occasions. I would end up in an emergency department frequently with various symptoms related to adrenal insufficiency. But after each hospital stint, it would take me weeks if not months to learn to walk again.

For most people getting off steroids, the process is careful dose reduction over time under supervision of a medical practitioner. Let me explain: the adrenal glands are positioned over the kidneys and produce cortisol, which is the stress hormone utilised through out every cell in your body. Without adequate levels you become fatigued, nauseated and can deteriorate to a life threatening condition known as an Addisonian crisis – believe me you don’t won’t to go there. The pituitary gland situated on the base of the brain regulates the adrenal glands by producing a hormone – it’s a complex feedback loop that can be easily disrupted.

If any gland in your body is not being used frequently, then it begins to waste away and lose its abilities. So you can imagine what happens when you take steroid replacement for any length of time – it’s impossible for the adrenals to instantly bounce back into producing sufficient cortisol and can take many years to recover. In my situation after trying for eighteen months, I finally reduced my steroid dose to zero with the help of a specialist prepared to work with me, but my adrenals and the pituitary had a further period of two years regeneration to get back to normal.

During this time people around you, including physicians, can be unsympathetic and dismissive. To the observer you appear well and healthy, yet internally you feel terrible, lack strength, are constantly tired, and inconsistent in your capabilities from day to day.

I became increasingly isolated, unable to work, socialise or do anything constructive. Weather extremes were a nightmare, and I was paranoid of contracting an illness, as my body lacked the ability to mount a proper defensive if I become sick. But I persisted because the side effects of steroids are considerably worse.

I knew the only way to recover was to exercise and would try a little bit each day – too much and I’d be back on the couch for days. There were times I couldn’t walk a hundred metres, but could build that up to five kilometres over a number of weeks, experience a medical episode, and then have to start all over again. But don’t for a second feel sorry for me – I’m totally undeserving.

noticed a young girl in a motorised wheel chair

See there was an occasion when I was scheduled for an appointment with a neurologist located within an inner Melbourne private hospital. The reception area was more refined then I’d been use to – modern decor and plush chairs around a couple of low tables. My partner dropped me off before parking the car, because I was in a phase of barely managing to shuffle a few steps. I flopped into a chair and felt ashamed of my limited mobility, when I looked up and noticed a young girl in a motorised wheel chair. She had striking long brown hair, but her hands lay motionless across a communication board she was slumped over. I could see her pretty face, but her eyes were closed fast, and her mouth pursed down-turned. I understood this expression, no doubt frustrated at the end of another round of pointless and humiliating tests. She seemed a beautiful young girl cruelly denied an ordinary life.

It really hit me hard, because being parent you are often sympathetic to the plight of others, in particular innocent youth. I felt compelled to try reassure her and brighten her day in some small way. When I noticed she had a carer seated behind her tapping away on her phone, then a male colleague joined the group; he was well dressed sporting a fine knit jumper and flashing perfect white teeth. Like normal young people they chatted and flirted with one another, whilst leaving the girl out of the conversation – I wanted to intervene but questioned the appropriateness, when all too quickly my partner returned and helped me out of the chair. I turned around and the group had gone, and had missed the moment to talk with her. Since then, a day hasn’t gone by not regretting to reach out in some way.

I understand now it was just pure luck that permitted me to gain my mobility back. The same random probability that gave me the tumor in the first place. Fate the surgeon was successful in leaving enough residual tissue to enable the pituitary to regrow. And a streak of luck I survived a multitude of near death hospital experiences.

will remain eternally humbled

But sometimes I feel I’ve taken good fortune away from those who need it most, and therefor will remain eternally humbled for the gift I’ve been given. 

Even so, recovering from a life threatening condition or disability, needs to be placed in perspective – you have only bought yourself a window of time. Because no matter how hard you try to hold it back, the rest of your life will eventually catch up with you.

In the meantime you should to be grateful, productive and give back to those who supported you during your period of intermission. 

And to those readers experiencing similar conditions, my heart goes out to you, and I’m sending you every ounce of positive energy I can muster. I wish you all the best

You want your surgeon to be eccentric and totally immersed in their profession, anyone else too suave could only be concerned with their self image – I rationalised to my self. 

Brain surgery requires a neurosurgeon with experience, precision, and the patience to peck away at tumors for hours.

‘Lock me in – you’re my man’ I needed this guy and wanted to secure him before someone else did.

But how did I get in this predicament in the first place?

I had an awareness for months, moreover years my health was in decline. Compensating, adapting and denying had become the new normal. In the few weeks before diagnosis, I would email my partner the smallest of changes to a script I was writing – subconsciously thinking it would be the last thing I’d be remembered by.

My body ached allover, I could barely drag myself up the stairs, walked with a distinctive shuffle, staggered into doorways, and had little strength. My skin was an inflamed mess, and I had chronic irritable bowel so serve, I needed a nutritional powdered supplement. Constantly felt cold and frequently endured headaches behind the eyes. But it was the seizures and blurred vision that worried me the most.

truth being i was just inches away from death

The truth being I was just inches away from death, but somehow remained convinced my condition was reversible with diet, exercise and drawing on some inner strength.

Yeah well that was certainly wrong.

I was always active throughout my life – I’d run the odd half marathon, scuba dive, bike ride and go to gym with strict regularity. I held a vision of building a media business, and over twenty five tumultuous years of working my guts out – I somehow managed to achieve it, on a global scale. Before his death, my father was immensely proud of the accomplishment, but I kept from him my real plight. I was on a plane somewhere every week, and just like most other high flying entrepreneurs, my head was in the clouds and I was swimming in debt.

In the early days, I had the self assured confidence to tackle any situation, and the foresight to anticipate my next move. Dealing with people was a breeze, I would accept them for their shortcomings and encourage them to be their best. When someone walked into my office I could immediately tell what their problems was before they could speak, and would have a solution readily at hand. I had challenged a conservative, insular advertising industry and disrupted the establishment with a new way of thinking. I was invincible – at least for the time being.

Then symptoms started to emerge innocuously, bouts of anxiety here and there, culminating in full blown panic attacks. What I couldn’t have know was my pituitaries role in producing the stress hormone cortisol was gradually being diminished, and similarly undiagnosed lower testosterone levels were extinguishing my drive.

I set out to sell my business believing I’d reached a point of burnout and stress overload. One of the most disappointing aspects of human behaviour is ungratefulness and greed. Unfortunately some of those around me whom I had empowered and enriched with wealth, sensed my weakened state and returned the gratitude… by having a ‘hand in my wallet’ and placing a ‘finger up my arse’. Harsh? Just ask anyone who’s sold a business.

The entire process took three years and literally drained the life out of me – even further.

on a hunch my gp checked my thyroid status

On a hunch, my GP checked my thyroid status – the results showed my pituitary wasn’t secreting sufficient hormone to stimulate the thyroid to function normally. ‘Christ that’s got to be a tumor?’ I had little knowledge of the pituitary gland, but I recalled reading how it regulated most of the bodies important systems – without a working one you’re toast. I was told not to over react and an appointment was made with a local endocrinologist in about three weeks to sort things out.

A night or two later I had one of those vivid dreams whereby you feel you are dying. I woke up very cold, and my partner suggested I stay in bed for a while whilst she ran some errands. I decided to take a shower anyway to warm up, then noticing my head was wobbling uncontrollably, I needed to brace myself against the tiles to prevent from falling flat on my face; as a horrid realisation sank in – holy shit… I was about to go!

The ambulance paramedics were nonplussed, nevertheless transporting me to a large public hospital. The response in the emergency department was similarly half baked – until my partner stepped in, took control and gave them ‘what for’. It’s amazing how one little action can determine your fate, as I was almost agreeing to going home and wait to see the specialist. Shortly after, a blood test astonishingly revealed no detectable traces of cortisol in my body… which meant I was in a gravely critical condition, and realistically should have already died! 

Pure luck or was someone looking out for me? 

Five days of exhaustive testing later an entourage of doctors and surgeons were making their way through the ward. Ahead of the pack pranced a younger doctor with a leather bag strapped over his shoulder “have they told you about your brain tumor? You’ve got a craniopharyngioma” this guy had jumped the gun and seemed to delight in being the first to deliver the bad news. ‘Is it cancerous?’ I blurted, he rolled his eyes as if I should have known better “a glioma is cancerous not a gioma – its pressing on your optic nerve, frontal lobe, hypothalamus and compressed the pituitary – they’re recommending surgery” I was half listening because I was still googling craniopharyngioma on my phone. “you’re going to need medication for the rest of your life”… boy,  he enjoyed that one. “Do you think you’ll be wanting to have any children? We can freeze your sperm, cause you need testosterone replacement, thyroid replacement, oh and you’ve got no human growth hormone, but that’s only available for adolescents anyway. But most importantly you must take hydrocortisone twice a day, and if you miss a dose, you’ll need to come into hospital within three hours – or you will go into a coma! OK? Look I’m running late for my next patient”.

As he walked away I was trying to comprehend the information onslaught… ‘wait – what do I have to do again for the rest of my life?’

The surgeon and his team eventually caught up, I took a liking to his off beat yet grounded demeanour, there were no pretences as he outlined the substantial risks bluntly. The other doctors wanted to undertake surgery that afternoon, but he assessed I needed to stabilise and would be best to wait a few weeks. The operation was to be conducted through my nose into the base of the brain – there were no guarantees and the surgeon had concerns.

As could be expected I lay awake that night pondering my mortality. It was around 3:00 a.m. when the weeks proceedings began to weigh heavily. Dr. Google searches had scared the bejesus out of me with alarming prognoses – emotions took over. I wasn’t afraid of dying, in fact it would have been a welcomed escape from the pain and humiliation experienced… but that would have been selfish.

Moreover I felt deeply ashamed – I had let my family down.

i’d broken a promise to build a life together

I would be imposing on my partner further trauma, and could be leaving her to sort out the mess on her own. I’d broken a promise to build a life together and provide guidance and support for our teenage children. This sense of loss is greater than any threat of physical disability or death. 

Very much alone except for distant moaning, and the snorts of adjacent patients, I suddenly felt a slight shiver through my neck, then my whole body quivered with a cold sensation running down my spine. It was my fathers spirit, and I knew for certain it was him.

It was just like he said “son sit up straight and take hold of yourself – get on with it”

It’s what I needed, I clenched my fists and thought ‘I’ll give this my best shot and tackle what ever comes my way’ – I can do this!

Being a hospital patient is about statistics and data, you are reduced to a set of numbers and percentage outcomes based on the volumes of people who suffered before you. But what can’t be measured is how in our darkest moments we are given strength by the spiritual connection we maintain with those who have passed.

And, you’ll never know when this experience may one day… come to help you.

So… there it is, I was about to embark on journey into the world of brain surgery, the most feared type of operation; with the poorest of outcomes. What happened? Well that’s another story.

Don’t get me wrong, I was extremely grateful to have survived the adrenal crisis the led to the diagnosis of the tumor. And was filled with optimism I could potentially get some normality back into my life, but its not like having an operation on your toe – brain surgery is inherently risky.

I was fortunate to be a suitable candidate for a technique called transsphenoidal endoscopic surgery, using the nose as a route to gain access to the base of the brain. I was thankful they weren’t considering the old fashioned method of removing a piece of skull and diving in that way.

At least my good looks were to remain intact!

The day had finally arrived faster than I really wanted it too, as I sat patiently waiting in the admissions department of large outer suburban Melbourne public hospital. The place was a throng of activity as immigrants, refugees and everyone or anyone sort medical attention. I’d spent the last few weeks diligently avoiding colds or infections in order not to jeopardise the pending surgery – but now I become paranoid of inhaling tuberculosis – so I shallow breathed to compensate.

I noticed he wasn’t using words

I was distracted by a family group that joined the waiting area, in particular an energetic youth in a wheel chair. He had a short cropped crew cut and firmly clutched a computer tablet, his mother gave the impression of being single and doing it hard, but stoically fussed over him endlessly. His sister, adorned in typical teenage fashions was similarly attentive to his needs.

It became clear firm boundaries had been established to control him, as he tried to wriggle out of the chair. I could just see the tablet contained pictures of family members as he scrolled through with soothing delight. He looked just like any teenage boy – until I noticed he wasn’t using words but uttering a series of ‘bop’ sounds – my heart sunk deep. He appeared to have a range of tones to give meaning to the bops. No doubt he was unfairly burdened with a language development impediment, and had some how found a way to communicate. He was a very likeable and endearing young man, and it appeared the whole family had worked hard to adapt and compensate for his disability. 

When you’re waiting for surgery, time exacerbates fear – hours elapsed until we progressed to another holding area, until finally my time had come.

There were two surgeons necessary to conduct the procedure, one to drill into the base of my skull via the nasal cavity. The other to delicately remove the tumour without causing a stroke, or nicking the optic nerve, and preserving the already damaged pituitary gland and surrounding structures as much as possible.

I had previously met the neurosurgeon and was persuaded by his slow motion like movements and fixed stare – exactly the traits you’d want from a brain surgeon.

However this was the first time I was introduced to the ENT surgeon – I was nonetheless impressed, she reminded me of Sigourney Weaver. This could be handy if the thing inside my head turns out to be an alien bug, and escapes during surgery – she’d nuke it. Well, maybe not, but she was reassuringly confident.

I made some pathetic remark about being ready for the surgery, but my life lay in both their hands and out of my control. I convinced myself that dying during surgery would be an easy way to depart… as you would have no cognisance of the proceedings.

like the feeling of being led to the gallows

I bid a farewell to my partner believing I would never see her again… as I was wheeled away on a hospital bed. It’s weird how you experience a different perspective laying down as I was pushed through opening doors into a restricted access zone – this rarefied no-mans land was the connecting corridor to the operating theatres. The reality of the situation began to set in, as the clinical sterility of the pale blue walls and benign wall art, triggered the onset of a cold sweat and pure fear… like the feeling of being led to the gallows.

When, the icy air was broken with a soothing ‘bop’ tone that filled the space – It was that boy, he was in the same corridor going into another theatre for surgery. And then another bop sound, he was relaxed and handling the circumstances with ease. I smiled as he continued to make make various sounds. He gave me strength to take a grip… I’m going to survive this after all.

If took forever for the anaesthetist to find a suitable vein to insert the cannula into, when I commented ‘why’s it so cold in here’, he replied “yeah the surgeons like it to be freezing, as we could be here for hours upon hours, and they don’t want any one getting sleepy”. The room was full of people decked out in surgical garb, instruments covered in clear plastic, monitors everywhere, but the surgeons were yet to make their entrance. When I was asked to slide across onto the operating table – it was like lying on top of a long skate board whilst my head tilted back, tightly braced into a metal cradle – I felt very uncomfortable.

euphoria then a icky blackness like no other

Finally that moment whereby you phase out of consciousness – euphoria then a icky blackness like no other, you lose all sense of time and awareness

It’s amazing how when you are placed in a highly stressful situation you tend to become much more observant – the people around you, small details… perhaps its a way our senses have evolved to become heightened when threatened, giving you an advantage to survive.

Did the surgeon successfully remove the tumor? Was I left permanently disabled?

Well that’s another story.