This is a true story.
After a series of medical misdiagnoses, Anthony Wright discovered a two inch brain tumour was threatening his vision. He learned from the internet that he was at risk from permanent blindness; operations followed and his sight was saved.
Further operations did not go well; now on the critical list he briefly died on the operating table. A life or death struggle left him comatose and no-one thought he would survive. Crippled, he suffered facial disfigurement and impaired speech, losing his job, identity and his future.
Follow his journey and witness the miracle of the human spirit as it triumphs over adversity.
It took two years to walk, and five years to speak clearly. Despite 101 setbacks, there was always a way. This is a story of responsibility, empowerment and unrelenting hope.
Chapter One: Overture
It was a balmy sunny morning in May, as ordinary as any of the thousand that had passed before. But this day would set off a chain of events that would threaten to blind or kill me; ultimately leaving me crippled, confused and damaged, changing my life forever.
This was the spring of 2002 and I was driving from my home in Reading to Eastleigh. In all my travels to date I had already driven more than a million miles, but this was an easy milk run call just forty miles from home. At the time I was in my early forties and a sales manager with more than two decades of travel behind me. In my current and former roles I had driven extensively throughout the United Kingdom. This included more than two calendar years in hotels in over a hundred towns and cities.
More recently I had been engaged in seeking European business with the large corporate groups based in Paris. This involved frequent day trips by car to the French capital; these were often 3 am starts and often became eighteen hour days. At the time I was working for a Taiwanese manufacturing company, selling home furniture and TV stands. The customers ranged from large retail and TV manufacturing groups in the UK and just latterly in Europe too. But this trip was to the main office of a large retail DIY chain based just outside of Eastleigh near Southampton. It was to be the third or fourth meeting and still very early days in terms of future business.
I was visiting my customer once more at their head office; it was a regular meeting and quite usual for me to stop at a local sports ground to relax beforehand. The area was originally a large sports ground for one of the big (tobacco?) corporations and included football pitches, a few tennis courts plus pavilions and changing facilities. But by now the large corporate was in significant decline and the whole sports facility was near empty one day to the next. On most visits I saw more groundsman than actual players.
I parked the car in the grounds and carefully went through my proposals one more time. This was a standard practice of more than a thousand similar meetings throughout the UK. Nothing could have been more ordinary, just a normal working day. I completed my revision and set off for my walk around the football pitch. I could smell the recently cut grass, the sun was bright and warm, it was a beautiful day. I was enjoying the morning, blissfully unaware of the dark forces now gathering against me; today was not going to be `ordinary`.
I was quietly meandering around the pitch, mulling over the planned meeting. But after about ten minutes I noticed the sound of an approaching train in the distance, not a modern train but a steam train of yesteryear. I actually thought how quaint, you just don’t see or hear those anymore. As Eastleigh is quite close to the sea I thought it was maybe a children`s mini-railway, a holiday fun-fare type attraction. It was a pleasant experience on a warm sunny day, sounding old and familiar, but it was getting louder.
I was surprised that I couldn’t see the steam anywhere. I scanned the horizon to the left and the right – there was no sight of the steam, although I could hear it quite clearly now. I was unaware of the real threat building against me and assumed the train was normal. The train noise grew larger, louder, and closer to me. I just couldn’t see the train anywhere and was quite amazed I couldn’t see the steam. I continued to search, no sight of a train or steam. I began to panic as it was getting louder; I was thinking must be a railway here somewhere, but there was no sign of it.
It was quite absurd; I was in the middle of a football pitch and could see the goal posts at each end, so how on earth could I be on a railway track? It made no sense at all. The train was now roaring and thundering down on me; fear and panic began to take over. I quickly turned my head from left to right desperately searching for the railway tracks, but there was still no sign. At this point the world began to spin and the train noise seemed to roar through my head; it felt like my head would explode. My legs buckled and now spinning I fell to the ground and the train seemed to roar straight over me.
Then there was silence; it was quiet, nothing, the train had gone. I was lying on the ground, alone in the middle of the playing field. At that point I heard a child’s voice say “That’s it then, Daddy,” and I thought, You are right, that really might be `IT`. I looked around but there was no-one there. I really did think I was dying; I was utterly bewildered, had I been shot?
There was no pain, no blood, but I was on the ground and once again it was a pleasant, sunny spring day. I simply could not understand what was happening, there seemed to be no cause for the fall and the train had now gone. I had been felled by a blow that would have been a credit to Mike Tyson but somehow there was no evidence to show for it.
I had no pain at all. I checked my chest, my head and body for signs of injury. I was expecting bits of bone and flesh jutting out, or maybe heavy bleeding. But there was nothing. I felt quite nauseous but otherwise all was well. Basically, there was no reason why I should be on the floor at all. I was uncomprehending, trying to work out how it was possible to die so quickly, out of nowhere, with no pain and without so much as a mark to show for it. Was it really possible to die like this – with no apparent cause or symptoms?
As I lay there for a moment the only issue now was that I felt slightly sick. Once again I could smell the recently cut grass and feel the hot sun on my body. There was a surreal feeling about it all; from a sunny day to my unexplained nightmare, then back to the English countryside in less than three minutes.
I got up carefully, removing the dust and bits of grass from my clothes. I glanced around but there were no witnesses to the drama, I was alone. The events were beyond my comprehension; something must have happened but there was no hint of what that might be. Beyond this I was also struggling with the notion that a steam train from a hundred years ago was seeking to attack me. Why should a 20th century steam train try to run me over, especially when there were no tracks? Mystified, I quietly dusted off the grass and went back to the car and on to the meeting.
At the time I thought no more of it – it was a strange series of events but life goes on and I didn’t seem to be hurt. But in reality a storm was gathering against me and would seek to overwhelm me in ways that I could not possibly imagine. This was the start of a life or death struggle that would take me to the edge of my stamina, reserves and sanity.
I returned to the family home that night and things seemed to be as normal. We had been married for more than twenty years and now had a five year old son. There was a strange but almost predictable routine that occurred when I returned from work. Despite journeys involving hundreds of miles and arrival times that varied by five hours, everyone always seemed to know when I might turn up.
Somehow, my son and the cat always seemed to work out that I was close to home around ten minutes before my arrival; it was as if they had their own SAT NAV tracker system and traffic reports. Each would take up their respective reception positions near the front door. The cat was usually hoping for food and my son for his evening game session. The little one was looking for assistance with the PlayStation. In those far off days he couldn’t operate the game on his own so we would share control of various racing and tank games. He would wait patiently by the front door with a games controller in one hand and a pair of cushions under his arms. This was a domestic bliss that had been on-going for a couple of years. But at the time none of us had any concept of just how quickly things were going to change.
Later that night my sleep was rudely and suddenly disturbed by a car alarm going off at full blast. The noise was so loud it nearly lifted me clean out of the bed. I hastily threw on a dressing gown and rushed to the windows at the front of the house. Usually a car alarm is linked to the head lights and will set off the most incredible light show if the car was tampered with.
I looked down to my drive expecting to see my car lit up like a flashing Christmas tree, but all was quiet. I looked to the drive next door but no flashing lights there either. I looked from left to right but there was no indication anywhere that there was anything strange going on at all.
My wife appeared, asking what the problem was, and I explained about the car alarm. But she had not heard any unusual noise at all, it was only my movement that had disturbed her. I was left disbelieving as the noise from the car alarm had been loud, quite terrifying. The source had to be within 20-30 feet of the house to be that loud. But there was nothing, no alarm, no flashing lights and apparently no attempted robbery. My wife doubted it had happened at all as there had been no loud noises to disturb her.
I returned to my bed quite mystified – was it just a dream? Do you really hear noises at that volume when you are asleep? I settled down and surprisingly was able to return to sleep. I was uncomprehending the deadly symptoms I was now experiencing, but it was another piece in the puzzle.
Quite by chance I had an appointment with the local hospital for the following day. I had originally been referred some six months earlier to this hospital because I had unexplained hearing loss. Over a six month period they had checked and rechecked my hearing four or five times and the only conclusion so far was that my hearing levels were down. However, it was getting marginally worse each time they checked.
At the time there was no diagnosis or explanation as to why this might be, except that they thought they detected the signs of a sinus infection. Whatever treatments they offered seemed to make very little difference to my condition and overall I was, if anything, less well rather than getting better. Their appointments system was poor with many delays; I was not seen once within an hour of the time they had specified.
Over the weeks I had tried every which way to defeat the excessively long and pointless wait at the hospital, but whatever I did I was never seen within the hour of the appointed time. Sometimes it was nearer two hours after the scheduled time before I was seen. One time I turned up just after 8:30 in the morning when the clinic opened at 9:00 am – but there was already a sign up advising a one hour delay before the clinic had even opened.
This time, unfortunately, I also experienced a two-hour wait after the appointment time, so I was not in a good mood. I remember looking around the waiting area; as per usual it was packed and looked more like the Dunkirk evacuation than a hospital. This was not because of some catastrophic viral outbreak, but the day to day normality in the department. My eyes glanced from the noticeboard to the posters, announcing the hospital’s disapproval of patients who did not keep their appointments. I sat in the waiting area, quietly unaware of the dark clouds gathering around me.
I was sitting still when suddenly things started to change and my world began to spin out of control. I was aware of an approaching train just as the day before. I could clearly hear a steam train in the distance but I was still seated in the waiting room. I could hear its increasing pants and they were getting louder. I was bewildered and looked around the room checking for a TV or radio that might be making the strange sounds. But there was nothing there to explain it and nobody else seemed to be disturbed in any way at all. There was a growing feeling in my head that something was very wrong indeed.
Then there was a strange experience like a massive wave of thick warm water pounding over me. This was followed by a thundering roar of a steam train which seemed to roll straight over me. I felt a strange spinning sensation as if I was falling. If I had been standing up at this point I would have fallen, but I was sitting and so did not really move at all. My hearing seemed to go quite numb and I was hardly aware of any sounds from the immediate environment. It was like being underwater, the sensation of pressure all around and somehow moving in slow motion. I thought my head was going to explode – was I having a heart attack or a stroke? Then it passed and I sat there in stunned silence. It was as if I had been lifted out of reality for about sixty seconds and now was gradually drifting back.
Suddenly I could hear the hubbub of the waiting room and was aware that a just few moments ago these sounds had gone. I tried to make sense of the events around me; the immediate environment was quiet, normal, unhurried. Everybody else in the room seemed to be just quietly getting on with their lives, unaware of any trauma on my part. My mind flashed back to the events just the day before; all the noises and the nausea were exactly the same. I hadn’t fallen this time, but of course this time I was already sitting down as the tidal wave overwhelmed me.
The approach of the train could mean only one of two things; either Thomas the Tank Engine was now re-routed forty miles north to the Reading hospital, which I thought unlikely, or the roaring train was actually inside my head. It was one of those `Eureka` moments, a blinding flash and a sickening reality all rolled into one. Gradually the realization dawned on me; even if there had been a train at Eastleigh there was no possibility it could have followed me all the way to the Reading hospital. I started to feel quite unwell.
There wasn’t a train at all; not today or the day before. The only common denominator in the two events was me, and whatever was happening was somehow going on inside my head. I sat there quietly mulling over the situation. I must be very seriously ill indeed – not a hearing problem, not a sinus issue but something inside my brain.
All the noises, the falls, the nausea, were some kind of brain disturbance. The pieces of the puzzle were now coming together and it did not look good. In short, I was not very well at all. This was a potentially a life threating situation.
I sat there in stunned silence, barely comprehending the implications. I had gone from maybe having a minor ailment to some kind of serious neurological issue. This had all happened while under the care of the local hospital. More to the point, they still had no clue what was going on and showing very little sign that they ever would.
I looked around at all the staff in the waiting room, everyone frantically busy with bits of paper and telephones, oblivious to the real life drama being acted out in front of their eyes. I was forlorn. These people were carers whose job it was to provide healing. Yet six months into my treatment and they had no clue what was wrong. Clearly, I was in trouble. It seemed to me as if I was dying, but somehow it seemed as if they just didn’t care.
I had to do something fast; it was two attacks in two days, whatever was happening it was now moving quite quickly. The next one possibly would be the last. I was quietly mulling my options at this point, thinking that it might be time to wake a few people from their slumber. In truth, I was plotting my next move.
At that point a nurse approached and said, “It is time for your hearing test,” and I thought Okay, it`s reality time, I will show you a hearing test. The world was about to change in a way I could not possibly have foreseen.
I was led into the small room designed to test your hearing; overall it was more like a large cupboard than a room. It had one chair but otherwise was almost bare of furniture and the walls had some kind of padding on them, designed primarily to make the room as quiet as possible. The test was simplicity itself. I was given a set of headphones and a cable with a button to press. Basically, if I thought I heard something I was to press the button to indicate to the controller I could hear and they would then record the result.
I was still very worried and bewildered from the earlier events as I sat there waiting for the test to start; I was still committed to some act of revolt. Then it occurred to me there was no way they could really know if I did hear something or didn’t. If I decided deliberately to falsify the answers there was no way they would ever know. It was at that point I worked out what I was going to do. I resolved I would do my absolute best to make a complete nonsense of the test.
The test started and I could clearly hear the calibration tones coming through the headphones, but rather than press the button I chose to ignore them. As far as the operator was concerned I simply had not heard the sound. The truth was, of course, that I had heard it, I just decided not to tell anyone. The test continued and if I had not pressed the button for a while I now pressed it at random, even though I couldn’t actually hear anything. In short, any test results they obtained were false and bore no relation to my hearing capability or any recent changes.
The test finished and I met the doctor twenty minutes later for the full test report, but by now I had calmed down a bit. I was concerned that I might be in trouble over the botched test. I was sure they would spot the obvious petulance on my part. But that was not how things were going to pan out and the world would change in a way that I had not expected.
The consultation started in the normal way with no apparent alarms and the doctor picked up the test results to review them. The world suddenly went into hyperspace. As the doctor saw my results his eyes went wide with shock and his chin fell so fast it nearly broke the desk. His hands were shaking as he filled out the forms for an emergency MRI scan. I was tempted to jump up and down shouting `APRIL FOOL` but I decided to shut up and await events. At this point I wasn’t worried at all, because I knew it was all totally false. The normal wait for a non-emergency scan is about six months but this one was for the next day; effectively I had scammed the system and jumped the normal queue. I make the point that the only reason for the scan at all was because of a rather doubtful test result.
The hospital had at least four of my earlier hearing test results to compare with the recent test. But of course they would be dramatically different, because the earlier ones were accurate and the latest bore no relation to reality.
I was unaware at the time, but there are in medical circles two major causes for alarm on hearing test results. Firstly, if a test result is very different from an earlier test it is an indication that something might be wrong. This is significantly more alarming if the time-span between the tests is just a couple of months, which mine was.
The second major warning sign is called a `shark’s tooth` graph. Basically, if the hearing test graph appears as jagged lines zig-zagging across the paper (hence sharks tooth) there really might be something badly wrong. In all the messing with the hearing test I had unknowingly created the `sharks tooth`, and with the dramatic changes from earlier tests these now warranted immediate further investigation. The paradox was that the results were fraudulent and bore no relation to my actual hearing capability at the time. The hospital was now seeking the cause of a problem that according to the actual facts didn’t technically exist.
The MRI scan was the following day at the same hospital. Unknowingly, I had shortened any potential wait by six months. These machines are small, noisy, and claustrophobic but necessary. You lie very still in a small chamber that makes strange buzzing and humming noises; it sounds a bit like a poor techno rock band. Afterwards I was still in a light hearted mood and wanted to go into the machine control room to check the results. The room looked like a cross between a starship and a recording studio, it was irresistible and I felt compelled to tinker.
With a not-quite-grown-up boyish enthusiasm I asked to go into the control room but the machine operator refused and blocked my path to the room. She was desperately trying not to give anything away but I was not convinced. There was something in her vocal tone and body language that told me all was not well.
In theory, my next hospital appointment was a month away, so if I was recalled in less than twenty-four hours something had to be wrong. By lunch time the following day nothing had happened and I was starting to think all might be well after all. But the call from the hospital came in five minutes later, just sixteen hours after the scan, so I knew there was something wrong.
I remember the incoming call from the hospital very well indeed. Initially, the caller would not give any results over the phone but only would offer a follow-up appointment for the next week. This was quite strange as there already was an ongoing appointment in the pipeline. I pressed again for the results of the test, but they hid behind their procedures and would reveal nothing. I pointed out I already had a follow-up appointment on the system in four weeks’ time, so the slot next week was actually unnecessary. But they were most insistent that I attend the revised appointment. It became quite clear that the earlier slot was by far the most important and they wanted me to attend.
My conclusion was that there really had been something on the MRI scan and pressed the caller one more time. Once again it was all bland denials, but by now I had worked out the answer. One thing was very clear from the phone call – they very definitely had seen something on the MRI scan, even if they weren’t keen to discuss it over the phone.
That night, I resumed my internet searches, carefully entering all my symptoms. In the past I had searched ` Sinus infection` trying to link it with all my strange experiences and had failed. There was no apparent link between the diagnosis and the symptoms I was experiencing. This time I added in expressions like `MRI confirmation` or `as shown on MRI` and this proved to be a game changer in terms of the likely causes; suddenly it was no longer a mystery illness.
There were, in fact, three `most likely` outcomes which collectively covered over one hundred pages of information. From what I could tell, the second most likely cause was an acoustic Neuroma (A.N.) or if you prefer, a non-cancerous type of brain tumour. Suddenly the consultation next week took on a whole new meaning, but even then I had only understood the half of it.
I attended the meeting with the senior consultant with my wife on the appointed day. We were led into a small quiet office and the consultant presented his open laptop which was displaying a large black and white picture. It was not good news; the world seemed to spin one more time as the consultant showed me the pictures of my scans.
“That is a very big tumour,” he said.
It’s very strange looking at X rays and MRI scans of your own body, maybe scary even. It’s all the more scary when you see a large white mass which is identified as a tumour.
My God, there was a big white mass on the scans. It was a brain tumour the size of a golf ball (4.5 cm in size). I was dazed and now felt quite sick. I didn’t hear the consultant much after this point; he did use the expression `benign tumour`, but in my stunned shock I didn’t hear it – I thought I had brain cancer. I heard a strange voice in my head which sounded a bit like the bloke in charge of a public boating lake. It said in a low key monotone, `Come in number 32 your time is up. `
It was a sickening feeling. I was confused, almost detached from the events going on around me and uncomprehending of what might follow. It’s a strange feeling to describe. I have been through it so many times yet it still happens each time such news reaches me. It’s uncomfortable, unpleasant, almost sickening, as if somehow reality is suspended for five minutes.
Somehow your world has changed, and all the parameters and realities no longer apply. It is, to say the least, a very muddled state. You begin to understand what you did yesterday hardly matters and changes nothing, what you are doing now almost has no consequence. It is important during this period to focus on what you really want to happen and how to ensure the best possible outcome.
The tumour was identified as an Acoustic Neuroma and as such was benign. This would need the attentions of a dedicated neuro hospital to deal with, but because of its benign status it would not normally be considered an emergency admission. It’s not unusual for the initial procedures around these tumours to be `watch and wait, ` i.e. no action is taken until there is definite confirmation that the tumour is actually growing. This watch and wait process might go on for many years.
The strange thing was, I had researched the sinus condition maybe a dozen times or more. At no time did the on-going symptoms I seemed to have link in any relation to the diagnosis so far. It was only after I had definite confirmation that there was something on the MRI scan that things seem to make any sense. When I put all my symptoms into the search and linked it with an MRI, suddenly Acoustic Neuroma (brain tumour) or Meniere’s disease appeared quite frequently.
In one sense this was a good call on my part, but equally the tumour was quite possibly ten years old and had been interfering with my life for some considerable time. A tumour of this nature grows very slowly and so the effects tend to be subtle in the early days. But gradually as it moves from the open spaces in the skull it starts to compress key areas of the brain. Then the world begins to change. It was only afterwards, looking back, that I understood the issues I had often had with mood swings and general psychological balance.
I had been showing signs similar to bipolar disorder for many years with both the frequent elation and depression associated with this condition. In those days I used to park my car near West Acton tube station on the way to work. I remember describing my condition as `West Acton Syndrome`. Basically, I would park the car and then not want to go to work. But later, on the return trip from the office, I did not really want to go home either. Often I would sit in the car for half an hour on either leg of the journey, stuck in West Acton, a place I did not want to be in at all (Hence West Action Syndrome. Stuck in a place you don`t want to be because you don`t want to go anywhere else either). I had also been on anti-depressants at one point, but at the time I had put it all down to excessive work/life stress. I was often struggling to keep jobs down and vulnerable to fatigue. It might sound crazy now but at the time I just put it down to stress.
I was duly referred to another hospital and awaited the new appointment, but at this time there was no sense of urgency or panic. A few weeks passed with no letters or calls, but meanwhile my health started to slip. The omens were there; the train attacks were now more frequent, headaches were common and my food started to taste very strange. The tempest against me was gathering strength and I started telephoning the new hospital to push things on.
In the beginning, my sense of taste seemed only to be marginally changed, with just one or two items seeming to be very odd indeed. Initially, it was just coffee that tasted quite strange and no combination of milk or sugar could make it drinkable. But unfortunately it did not stop there, and increasingly more and more foods/drinks became unpalatable. It was very strange – you might see a food that you liked and had enjoyed for years, but suddenly the taste was not as you remembered it. The problem was the food very often tasted as if it had gone off and was well past any sell by date. There is some program deep within the human brain that goes back to evolution. Your brain will resist any attempts to eat food that might inflict harm on you, so you will naturally recoil from eating any food that seems strange or tainted. You might try to eat the food but the body’s reaction is to become quite sick and not want to swallow the food at all.
The decline of my taste function took some believing. White wine now tasted like apple juice that had gone off, red wine tasted like rusty water. All meat, dairy and cereal products were off the menu. Ultimately, there were only two or three food types that I could eat at all. Strangely, the eastern spicy foods, Chinese or Indian, were the only tastes I could stand. It was one of the few times in my life when I seemed to be hungry twenty-four hours of the day but could do nothing about it. It was a sort of involuntary enforced crash diet. Towards the end I couldn’t even stomach standing in the kitchen when food was being cooked, just the smell made me nauseous.
On one occasion my wife cooked a full Sunday roast lunch and the family sat down at the main dining table to eat it. I looked at the food and suddenly didn’t feel very well at all. The only way I could eat the glorious Sunday dinner was to cover it was some kind of sweet chilli sauce. I was carefully adding the sauce to my food when I looked up at my wife. There were tears streaming down her face; she did not really understand the issues and was now convinced I was on the edge of insanity.
In truth, the failing taste function was a side effect of the tumour; there was massive compression building in my skull. This was another condition with serious and potentially life changing consequences.
Meanwhile, once again we were back in delay mode; a week became a month, then six weeks and then eight. During this time my health started to really deteriorate and with some very strange effects. Most mornings I woke up to a blinding headache and the vision flickering was happening more often; it often took three or four painkillers before the sensations would clear. My vision lost some definition in the more marginal peripheral areas; events were moving at their own relentless pace.
One of the challenges of our Health Service is that once you drop off the radar you are seemingly invisible, effectively (to quote Douglas Adams) it is `Somebody Else’s Problem`. This can be a very dangerous place to be, as the administrative process moves at its own pace almost regardless of your condition. You might be in trouble, in pain or dying, but since they are not checking they don`t know. By the time they find out that there is a problem, you just might be on the critical list.
It was clear to me by now that my health was deteriorating. I resolved to do something about it. At the time I was still at work and had no choice but to make the calls to the hospital from the head office in Luton. I was not looking forward to the conversation as the earlier calls had been less than productive, but this time the world would change in a way I could not possibly imagine.
The Luton office at the time was a small ‘70s warehouse industrial unit with a few offices upstairs, on a rather grim trading estate a couple of miles from the town centre. I was fortunate to be able to make the call when there was nobody else within earshot. I called the Oxford Hospital and was put through to the unit that was handling my case; once again there was no indication for the all-important appointment. A credible sounding reason was offered as to why this would be the case – and would I like to call next week.
I sat alone in silence, quietly reflecting on the once more unhelpful reply and inevitable delay, but suddenly the light came on in my world which would set off a chain reaction that would save my life. The administrator had offered the same excuse twice, even though nearly two weeks had elapsed between the two calls. Despite the time lapse between the two I spotted immediately that someone was being a little less than honest. I replied quite quickly, `Yes, you told me that two weeks ago.`
There was a rising panic at the other end of the phone as very quickly a new excuse was offered. I think it was my grandmother who told me, `People who tell lies always have to remember exactly what they’ve said.` Clearly, our hospital administrator had never met my grandmother because she now went through a sequence of five different excuses explaining the delays. The problem was, she had already used each and every excuse at least once before on previous calls with me. As each excuse was offered I replied, “Yes you said that last week; the week before, or when I first called.” The hospital was rapidly running out of both excuses and any kind of credibility.
In the tension of the moment, the administrator replied offering more details over the phone (strictly speaking something that they’re not supposed to do). Compared with the earlier rather glib excuses, suddenly we had both credibility and detail. Looking back, the news was probably not good but fate was smiling that day.
She said, “Here, I have it now – you have been referred to another department.”
I was incredulous and with rising disbelief replied, “How can they refer me when they haven’t actually seen me?”
She replied, “Oh – they have spotted something else on the scans and another unit (Neuro) will have to deal with it.”
This was all news to me. I asked, “What could they possibly have seen?”
But I then got the reply I was not expecting; just the one word – “Hydrocephalus.”
I sat alone in silent crestfallen shock as once again the true reality unfolded in front of me. I just about managed to ask for help to spell the word correctly. In theory the hospital, by offering this information, had broken all the rules. But the mistake by the administrator would turn out to be one of the luckiest days of my life.
I had a condition called hydrocephalus, quite literally `water on the brain` something that you might spot from an MRI scan. Earlier departments had missed it because they were not really specialists in this field. But the Oxford hospital was a specialist neuro unit and as normal procedure had rechecked my MRI scans. It is quite possible to diagnose hydrocephalus simply from the scans without even meeting the patient, but only if you really know what to look for.
In any medical sense I now found myself out of my depth. I didn’t enjoy biology and was quite useless at the subject. The last eight weeks had been a very steep learning curve with lots of new and unpleasant words. Up to this point in my life I had never heard the word `hydrocephalus` before and couldn’t even spell it. I resolved to check out the details online later when I returned home.
In the normal order of things, I would now await notification of the new referral appointment with the neuro department, but once again this might take several weeks. It might seem strange now looking back, but in the normal course of events I would not be considered as an emergency case.
Unfortunately, the Oxford hospital had misunderstood that the MRI scans they were checking were already two months old and were unaware of any recent changes to my health. However bad the situation was at the time of the original scan, the condition was now at least eight weeks further advanced. The challenge was, I might already have been waiting for a consultation for a month or more but I was now at the back of a new queue. The situation was significantly worse than anyone could have imagined and a crisis was now approaching.
At the time, my computer was in the small bedroom (almost a box room) upstairs at the front of the house. Technically a fourth bedroom, it had been used as an office for a decade or more. There were files and papers everywhere and a series of planners and notices on the wall.
I sat down at the desk and resolved to find out what on earth could be going on. I simply couldn’t comprehend the need for any further delay or diversion. It was a strange world; somehow I had to learn new words just to survive. Once again fate was going to intervene on my behalf in ways that were beyond my comprehension.
I decided that however scary things might be it was probably best to understand more about any threat. I started my internet search for hydrocephalus but at exactly the point when the correct page appeared, the vertical hold on my computer monitor went haywire. The whole picture started to jump up and down. I was furious; computers are wonderful, they only ever really fail when you need them. I said some rude words about Microsoft, Windows, and Bill Gates et al. I was no longer in a good mood. I was now getting motion sickness and starting to feel quite ill from all the screen movement.
I looked away from the screen to the bedroom wall to reduce the motion effect. But this did not help; the whole wall now seemed to be jumping up and down. It was a crazy strobe effect; you had a split second to focus on the image and then it jumped two feet into the air. But moments later it would then shift back to the original position. In my rage I had concluded that the computer was faulty, but now a solid wall was jumping like a kangaroo on steroids.
In those few moments it dawned on me that there was something quite seriously wrong; walls do not normally jump unless there is a major earthquake. Then I realized it was not the monitor, the computer or Bill Gates. It was me. My eyesight had now lost its vertical hold… I was in trouble. After a minute or so my vision returned to normal and I could read the screen again. I felt numbed and slightly nauseous, but there was no pain. There was a full page on the hydrocephalus condition and half way down it started to describe the complications. This was another piece in the puzzle and it was not good news at all. There it was in black and white in front of me.
“Vision disturbances, always treat as emergency as permanent blindness can result.”
You might guess I was in some shock. I had been under treatment for six months or more and now finally we had the answer.
As I sat looking at the computer monitor it became clear to me that some kind of pattern was emerging. At this time I had a flashback to a game of golf we had played just a few weeks back. During one particular part of the game I lost the ball under a bush and bent over to retrieve it. As I stood back up to my full height there were some very strange effects on my vision. More or less as I stood upright my vision in both eyes immediately broke up.
It became pixilated with sort of digitised black and white images. I could not see anything much beyond a series of flickering grey squares in front of my eyes. The whole process only lasted for about ten seconds and at the time I had thought no more about it. There had been earlier minor vision disturbances which I had put down to stress or simply driving too fast.
But the reality was, the simple disturbances had started about four weeks ago and the more general grey outs had followed a couple of weeks later. The description of the condition from the web page exactly fitted my own experiences so far. In my case, the condition had already progressed from mild to serious.
From this point, if untreated it would move to severe, then to crisis. I was very sick and would maybe become permanently blind soon. I would like to tell you how brave I was, how the stiff upper lip came into play etc. But it wasn’t like that at all.
Maybe ex-service veterans would be able to explain it; somehow you become detached from reality around you. It was a strange experience with no emotion, no feelings, just nothing. There was complete and utter silence. I gradually came back to reality. I was numb and disbelieving.
I was six months into a treatment pathway yet even now the medical services had no idea what the implications might be. I had jumped their normal MRI waiting list by six months, they knew I had a tumour, yet somehow I was still in trouble. All the pieces of the puzzle came together; there was no mystery now and it was not good news. The advanced hydrocephalus diagnosis explained all my vision issues, the black outs, the headaches and the failed taste function. The compression in my skull was building to critical levels and even now might lead to permanent vision damage. I had the answer to the riddle but I was running out of time.
I went down the stairs and told my wife, “I am not very well and will be in hospital soon.”
Authors note: People often ask me “Why Overture?” My reply – “This really was just chapter one, there were nine more after this and then it did get a bit scary; but that as they say is another story…….