“You’ve got a brain tumor right there” as he splayed his fingers apart and placed them on my forehead. He had the vacant stare of an amazon sloth and the slow precise movements to match. ”It’s completely crushed your pituitary gland – I do one of these a week”.
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.
