Sunday 24 June 2012

22. First steps to recovery...

After a night of blissful sleep deprivation, I woke up. It was a Saturday, and the weekend brought a very different feel to the ward. The staff were thinner on the ground, and the flurry of activity brought by elective surgeries was largely absent. It was a relaxed environment, despite a little commotion from the bank of four beds next door, or next door but one.

I think it's worth bringing you up to speed about the ward I was on. This was a ward that dealt with patients who had neurological issues. These varied from brain tumour removals and spinal surgeries to piecing people back together after motorcycle accidents and other traumatic brain injuries. My set of four beds had a real feel of 'One Flew Over The Cuckoo's Nest', not helped by the fact that the people in the beds adjacent to me looked like the Indian and the old guy with glasses. At one stage in the course of the morning, from an adjoining area, I heard a nurse shouting, "Put your trousers back on...stop messing about. I know you're not having a seizure. Just put them back...PUT YOUR TROUSERS BACK ON." I stifled a laugh, and settled for a giggle. I didn't find it funny that there were clearly people on this ward who had much more serious issues than me, but the imagery this outburst conjured up was pretty amusing.

Despite a disturbed night, I felt much livelier. I think my brain was starting to relax, and the effects of the anaesthetic were now all but worn off. I was thinking clearly, and excited about starting my recovery. I was visited by a nurse who wanted to remove my catheter. This was fine by me, as it was the last remaining shackle tethering me to the bed. I had to look away as the process was carried out, as I'm sure any man would. We are talking about a part of the anatomy reserved exclusively for outward movement, and whereas this was going to involve outward movement, it was that of a foreign object which looked far to big to be where it was. This is the one and only time I have had this misfortune of catheterisation, and removal of it was uncomfortable, but no worse.

This was it. My shackles were removed, and I now had the chance to test my feet out. I didn't particularly want to go anywhere, but I knew the time would come where I had to go to the loo, so it seemed as good a time as any. I had slept at the forty-five degrees I had been put at, and it took an unusual amount of effort to get myself up to ninety degrees. I sat for a moment as my body righted itself. I hadn't moved much for a while, so this took a little while as my blood re-distributed itself around my body. I swung my legs carefully round to my left, and they dangled over the edge of the bed. My legs hung heavy, and I weighed up their ability to take my weight after the ordeal of the previous day. What could possibly go wrong?! I had a bed to keel over onto, so took a leap of faith...well, in reality, more of a drop, and lowered my feet to the floor. After a moment of balancing, and another trying to decide if I'd had a foot transplant while in surgery, I was upright and unsupported. It felt good, but it was also a lot of effort. I sat my self down and smiled to myself. That was the first step on the comeback trail.

In the hours that followed, my objection to peeing into a cardboard bottle took over. As my mug of standard issue tea worked its way through my system, it was time to get on my feet again. I could see the toilet from where I was positioned in the ward, and was about twenty yards away. I pressed my buzzer to summon some assistance, and got back on my feet. I'd never experienced mobility issues before, but needed every ounce of assistance the nurse gave me to get to the toilet. She supported me by my arm, and walked with me -every tiny step. I assured her that I would be ok in the cubicle on my own, and she waited patiently for me to do the necessary. I emerged, and was helped back to my bed.

Having got back into bed, I quietly contemplated how much we take for granted. I'd never experienced the inability to walk unaided for twenty yards to use the toilet. My boundaries had always been self-imposed, or imposed by those in positions of authority. I contemplated how much worse this could have turned out, and for the first time, realised just how fortunate I was. I had escaped with my independence intact, I would just have to put some work in to get it back. I had never pondered my own fragility before, nor had I ever realised my own resilience or mental fortitude. My thoughts wandered, and the next question was, how long will it be before I can get out of here?

Saturday 23 June 2012

21. Putting the feelers out...

Now, sleeping on the ward was a challenge to say the least. In fact, it would have served as a good opportunity to run sleep deprivation studies. After the operation, I was on 15-minute checks. This meant that every fifteen minutes, I would be woken up, asked a series of obvious questions (well, obvious to someone who wasn't delirious), and subjected to blood pressure and pulse checks. The machinery used sounded like a portable BBC Radiophonic Workshop. In a group of four beds, with each groggy patient on fifteen minute checks, this meant the equivalent of a non-stop, terrible 80s disco.

On waking up (again), I was feeling uncomfortable. I tried to shuffle in my bed, and realised that my movement was being restricted by my catheter tube being caught. Now I hadn't remembered being fitted with a catheter bag, nor had I remembered drinking the fourteen pints of lager that could have been the only explanation for the enormous amount of fluid in it. I had been nil by mouth for nearly twenty four hours, give or take the cup of water, so was confused by my deposit. "They put about four litres of fluid in you during the surgery." A nurse told me as I untangled my tube, and my attention turned to my neck.

The room was warm, I was warm, but the back of my neck was cold. I investigated what was going on, and felt dampness behind my head. I was in bed, and propped up to about forty-five degrees. I was leaking. This inspired a moment of panic, but I was assured by the nurses that this was totally normal. In light of the fact that I been pumped to the gills with fluid during the operation, it really shouldn't have been surprising that some of it was trying to escape. The nappy-esque wadding that was covering my pillow was changed, and I was comfortable again.

The reality was that my scalp had been opened, and a section taken out of my skull to allow access to the tumour. I have studied the human body, and I know how tissues repair. My head just needed to time to start knitting together, and seal itself up. It was just hours after the surgery, and my body's recovery had to catch up with the miraculous recovery of my brain.

I was desperate to test my ability to stand up, but knew that my body and brain had just undergone the most stressful day of its life. I was still sluggish as a result of a mixture of the anaesthetic, and the trauma suffered by my brain. I was being given steroids to prevent inflammation of my brain, and pain killers (if my memory serves me correctly). I tended to just see off the cocktail of pills I was handed without many questions. I hadn't suffered any pain in particular (apart from when I laughed), but assume that the levels of pain medication I was being given, or had been given was taking care of that. As a nurse took a sample of my blood, I asked what it was for. "We're monitoring your blood for signs of infection." He replied. That was curious...they'd opened my head up, taken out a mass of cells, and closed me up. Surely I was on a potent cocktail of antibiotics? Apparently not. After brain surgery, it seems that the doctors don't like to give you antibiotics, as they can interfere with your normal biological defences. I've never liked relying on medication, and would always try to hold off. This would've been an exception, as I was desperate for everything to go well, but in Mr Ross I trusted.

Despite my urge to get up and about, I tried not to rush myself, and was satisfied by sitting up, and trying not to leak. I had put a request in for a selection of cold juices, as my mouth still felt like I'd been chewing on sand for a week, and let myself drift off to sleep again. I got the feeling that this was the best way of speeding my recovery along, also knowing that my night would be disturbed by the quarter-hourly ward discos.

Friday 22 June 2012

20. King of the ward

The next time I woke up, I was on a ward. I opened my eyes to see Lydia, my Mum, and my Dad. All looked ecstatic to see me opening my eyes. I felt a bit more connected to my brain and body than I had on first waking up, and as I chatted with my family, it dawned on me that the mist that had shrouded my thoughts for so long, had now lifted. A smile spread across my face, followed by a sharp pain on the top of my head. I had no headache as such, but something was causing me discomfort. It only took me a couple of seconds to put two and two together.

The incision made to access my skull had been from above one ear, all the way across the top of my head, to the opposite ear. As I was smiling, the stretching of my skin was tugging at whatever was holding my head together. "What's going on up there?" I asked, raising my eyes towards the top of my head. Lydia stood up, and reported back. I still had my hair, but a number of staples were holding my head in one piece. I asked Lydia to take a photo, so I could see what the score was. She showed me the photos, and I could see a lot of hair, separated by a neat row of two-dozen silver coloured staples, which resembled a zip fastening.

There was no taking it away from me...I was happy, comfortable (as long as I didn't smile too much), able bodied, almost fully thatched, and could think clearly for the first time in a long time. We made small talk for some time before Ryan stopped by. The surgery had taken seven-and-a-half hours, as opposed to the four hours expected, and I can only imagine how my family had felt as they waited for news. Ryan explained that the surgery had gone well, and they felt that to a couple of cells, they had got the lot, and there had been no complications. My experience was that surgeons close ranks when you try and get any real detail about the surgery. It appeared that what happens behind the theatre doors remains there, but saying that, I doubt many people are quite so demanding of all the gritty details.

I asked Ryan if he had managed to get any photos, and was surprised when he reached for his pocket. A short rummage later, he produced what on first glance looked like an iPhone. "I got one of the nurses to take some photos with my iPhone", he replied. It was his iPhone. He handed me his phone, to reveal two photos. They were grim, but at the same time, fascinating. He pointed out the various tissues, and most importantly, Ivan. "So what does my brain do now?" I asked. "It'll fill the space." He answered. It was that simple. My brain had accommodated this mass of tissue until it had no more space...that was when the problems started. Your brain is supposed to be surrounded by fluid to help absorb the shocks sustained in day-to-day life. My brain had been forced to fill this space as Ivan moved in, and then the symptoms had started. Like babies fleeing the nest, my brain now had untold space to live the life of a normal brain, and was revelling in the opportunity.

My thoughts were clear, my word selection back. The fog had gone, and the headaches had hopefully followed. As I looked around the ward to take in my surroundings, I was surrounded by three extremely groggy, disoriented people, and felt on top of the world...certainly far better off than my ward-mates. I was also extremely tired again. The experience had taken its toll on all of us, and I felt my eyes closing. I told my assembled crowd that I was going to have to go to sleep, despite my overwhelming urge to enjoy my new-found clear cognitive processes. I gave in, and drifted off again, safe in the knowledge that my loved ones had seen the fruits of the surgeons' labour.

Happy snaps...

Now if this was a book, I would make it have a glossy middle section with colour pictures. At least one of those would be a picture of me enjoying myself as a child, one at my graduation, and of course, these two delights from my first MRI - Me and Ivan. When will Doctors learn that leaving me in a room with their computers switched on is a terrible idea. I have painstakingly removed all traces of red-eye.

This might help you understand my reaction when I first walked into Dr Wihl's office...



Wednesday 20 June 2012

19. Where am I???

I regained consciousness...my eyes seemingly sealed shut, my mouth dry, my body heavy. I slowly opened my eyes, but where was I? I hadn't seen this room before, and didn't recognise the people who swarmed around me. I moved my head from side to side...it was a large room, with harsh fluorescent lighting dotted at frequent intervals across the ceiling. The walls were blank, and painted in a colour I would associate with a dentist's waiting room. There was an ambience...purposeful chatter, but I couldn't tune in to what was being said. People hovered over me, fussing around me. What had happened? My brain computed what I was seeing...I was at the gym, and the way people were fussing, I must've passed out or had a seizure or something.

"It's ok", I said. "I've recently had brain surgery...I think I've had a seizure." How embarrassing...my fears coming true. I'd not only had a seizure, but in front of a room of strangers. How must they have felt? Did I do anything weird?

"Peter", a voice said. "You're at LGI, and we've just brought you out of your anaesthetic".

I felt relief...and confusion. Despite the aforementioned absence of thought or feeling, my first instinct was that I'd had a seizure. Why had my brain taken me there? My brain quickly tuned in to the moment. I was alive. My brain seemed to be functioning. What about the rest of me? I took a moment to focus on my surroundings properly, and was in the presence of two nurses. This was the recovery room. I was surrounded by a series of wipe-clean surfaces and open spaces for the staff to bring me round, and to deal with whatever faced them.

The nurses removed the cannulas from my feet, and from one of my arms. I saw the the extraordinary length of the device that had been in my arm. "What did that one do?" I asked. "That was in case we needed to administer drugs directly to your heart." The nurse replied. I was barely conscious, but the reality of needing drugs fed directly into my heart hammered home the seriousness of what I had undergone.

Next, it was my arms and legs' turn. I flexed my arms at their elbows, and lifted them from the bed as I wriggled my fingers. Everything felt heavy, but it all worked. My right arm felt like I had slept on it for about a week, and it ached to bend it, but that didn't matter. It bent without assistance. I lifted both my legs from the bed, and tried to wiggle my toes. Success. My arms and legs, irrespective of weakness, we're working. I had remembered a friend at school who had undergone an operation, and suffered nerve damage in her leg, so was heartened to see that all of my limbs were functioning. The worst case scenario was 'limb weakness', as it'd been phrased on the consent form. If this was the case, bring on the physio.

My brain seemed to be operating ok, and my body was too. I raised my head and between my feet, could see a cold water dispenser. This was torture. My mouth was drier than ever before, and I couldn't get up to fill a cup.

The torture was about to get worse. "Can I have some water please?" I asked. The nurse replied, "Oh, we're not supposed to give you water so soon. Your stomach might not be able to take it yet." After a few minutes of banter, and light criticism of torture on the NHS, she gave in. I was provided with what felt like the holy grail. Picture the films of days gone by, where a disheveled man, clothes in tatters, crawls through the desert with more sand in his mouth than saliva. That was how I felt. Could I sip this water? No. I drank the water quickly, savouring the feeling of cold liquid passing my lips. I suffered no ill effects of the water, but the activity had exhausted me. I was suffering no pain, and was clearly under the influence of either the anaesthetic, or pain medication. I could move, speak, think, and smile - I'd made it, and I felt good. I drifted off into sleep or unconsciousness...I don't know which.

18. Under the knife...

The pre-op ward was quiet, and the staff knew that the key to their role was keeping the patients relaxed, and happy. I had slept as well as I had for some time - in part, I think, because I knew my wait was at an end. I woke up headache-free, but quite early, and restless. I was told that the running order for the operations was to be sorted when the surgeons started work, and that an anaesthesiologist would see me shortly. I had no appetite, and thankfully so as I was 'nil by mouth'. Lydia arrived at the hospital to see me, and visiting hours were no longer an issue. I was invited to slip on a standard issue surgical gown - I like to think I made this look good, despite the slightly off putting feel of a breeze across my bum. I guess I know how the Scottish feel now.

Nerves had struck, but I was still feeling remarkably good for a man about to undergo brain surgery. I know I was nervous by the frequent urge to go to the loo, and the feeling of adrenaline buzzing around my body. I have been known to confuse nerves and excitement, but there was no misunderstanding here. I felt I had a good handle on what was about to come, and I had no doubts about going under the knife. My thoughts flitted briefly to organ donation - I wasn't thinking negatively, but had considered all the possible outcomes, and was well aware that as an otherwise healthy guy, in the event of my own misfortune, I might be able to help someone else. This didn't go down well with Lydia. As a nurse passed, I asked the question, "Excuse me, do you have any donor cards?" "Err, I think we have some somewhere...I'll have a look", she replied. Lydia was upset by this, and didn't need to say anything to give this away. I was well aware that she had been nervous up to this point...perhaps more nervous than me if her face was anything to go by. It dawned on me that in light of this, asking about donor cards wasn't the most sensitive thing to do. I tried to explain to Lydia that I just thought it was a good idea, but moved on quickly, and she relaxed a little. The donor card never arrived.

The anaesthesiologist came to my bed side, and explained that I would be collected shortly, and pointed out the risks of general anaesthesia. These didn't worry me, as people are subject of general anaesthetic every day, and anaesthesiologists are well paid to keep those people alive. I was in the zone, and didn't have time for any negative thought. Not now. The hour was nigh. My parents were there, and Lydia was there - all of them doing their best to keep a brave face, and keep me chipper. When I look back, I think it's fair to say that I was the one person there who didn't need keeping chipper. I had approached this day in my own style - this operation was just another obstacle to overcome. A necessary procedure that would allow me to continue with my life. I wasn't prepared for what was coming next.

The time had come. A nurse arrived at my bedside, followed by a couple of porters. I had a genuine smile on my face, as this was the key to my health being restored. My parents and Lydia were staying positive, but I could see the panic in their eyes. They were scared, and I was just too stubborn to let that emotion overcome me. I was wheeled from the ward on the trolley, and laid back. The nurse walked alongside me, but I quickly lost track of what she was saying. I watched as strip light after strip light passed over my head as we negotiated the corridors. The words from the consent form flashed into my consciousness.

Paralysis. Bleeding. Death.

Was I about to close my eyes for the last time? Would I see my family again. Would I ever get the chance to have a family of my own?

The wave of emotion that was passing through my body was overwhelming. I was thirty years old...was it all about to come to an end? I still had the same faith in the people about to operate on me, but I felt vulnerable. My future was in their hands. There was no sign of my life flashing before my eyes, just the past few months from diagnosis to the present. What had felt like a prolonged period of illness was in perspective. This was it.

I didn't have enough time to dwell on things, as I arrived in the anaesthetic room moments later. The small room was a hive of activity, and before I knew it, I was having cannulas inserted into every limb...literally. I desperately tried to cling on to the moment, and exchanged jokes with the nurses and Doctors that surrounded me. It was all happening too fast - the busier they got, the faster time seemed to pass, and all I wanted was for it to feel as if it was slowing down. Resistance was futile - I was whipped up into the frenzy of activity. Before I knew it, I was told that I would feel a strange sensation (that being the anaesthetic) and within seconds I was unconscious.

You don't feel the passage of time when you're anaesthetised. You don't even register the darkness when your eyes close. When you wake up from sleep, you can usually tell that time has passed. You dream...you stir...you drift in and out of cycles of sleep.

I felt nothing.

Tuesday 19 June 2012

17. Reality bites...hard

My surgery had been scheduled for a Friday morning, which I had quietly prayed would not mean the last one before a round of golf, or a big lunch for the surgeons. I arrived at Leeds General Infirmary the evening before, and made my way to the ward. I was showed to a bed which would be my home for one night - a ward specifically for pre-op people. Visiting hours meant that I was going to be on my own for most of the evening, with only the stretched nursing staff for company. I made myself at home (as much as I could), and was allowed to use my phone and laptop. I had taken an internet dongle with me, and was connected to Facebook for most of the evening to pass the time. I received many messages of support, and despite most of the communication being to do with the forthcoming operation, I was able to keep my mind off the event that was rapidly darkening my door.

During the evening, I was visited by one of Mr Ross' registrars - Ryan. He was a confident, well spoken younger man, probably in the twilight of his twenties. He seemed positive, and for the want of a better expression, 'well up' for the surgery ahead. I had the feeling I was in for a long night, and was happy to see someone who was going to be in on my op who could answer my lingering questions, and allay my fears about the prospect of my head being shaved (a look that many of you will know, does not suit me, although I had bought a hat in case of the worst case scenario). "Will any pictures be taken of the inside of my head?" I asked. Ryan told me that the microscope they would use to see what they were doing would take photographs as it went. My response, "Can I get copies?" Ryan was a little taken aback by the prospect of providing me with photos...as any normal person should be. If anything, this man was accommodating. "Well, the photos are difficult to get off the hard drive, but I'm sure I can get something sorted", he replied. Think of me what you will, but if someone else was getting a look inside my skull, I wanted in too. They say that curiosity killed the cat...I say, I'm not a cat. I wanted to see it, so I could see what I was getting rid of. My tumour had taken on a persona, and people had become quite passionate about giving its demise, so I wanted to see the enemy.

The main purpose for the registrars visit was to mark me up for surgery, and to complete the administrative aspects of the surgery. He had come armed with a purple marker, and seem a bit too happy about drawing a big arrow on my left temple. Strangely, this all seemed to make it more real. This was happening, and if the rest of my body was going to allow me to forget this, my stomach wasn't.

Ryan produced a bundle of self-carbonating paper from his file. He explained that I needed to sign a consent form, and he proceeded to take me through the contents...

"Name of proposed procedure: Interhemispheric approach for excision of left frontal parafalcine meningioma", it read.

"That sounds serious", I thought to myself, as my stomach wobbled again.

"Significant, unavoidable or frequently occurring risks: Bleeding, infection, stroke, seizures, paralysis, limb weakness / numbness, incomplete excision, recurrence, death, general anaesthetic risks", it continued.

My vocabulary failed me, "Shit", I said to myself. If I had managed to avoid any negative thoughts up until this point, this document fuelled my biggest and longest standing fear. My greatest fear had never been death, it had been disability. I have always taken such pride in my ability to function physically, the thought of having this taken away is my worst nightmare. Even now, when I see the words written down, the feeling of panic is mimicked.

"Can I get a signature here, please", Ryan uttered. I was dwelling on the text, and it barely registered.

I had pondered the thought of seizures and epilepsy, as I was well aware of the pitfalls of tampering with the delicate tissues of the brain, but the other outcomes of the surgery hadn't registered. Unavoidable. Frequent. These were not words I wanted to see, and they successfully put a dent in my positivity. A significant one at that.

The registrar left, and my one-man mission to amuse myself had been seriously affected. I had prepared myself physically for the surgery, and had prepared myself mentally up until this point. I had to get myself back to this point if I was going to have any chance of getting the sleep that I needed. I have long been able to think myself into a positive mood, and this was one occasion where I desperately didn't want to let myself down. I read the pink carbonated copy of the consent form over and over. Each time, trying to rationalise one of the risks. I took myself back to the echoing words, "Technically brilliant". I couldn't let this piece of paper affect me - not having come this far, and told myself that they wouldn't happen to me. I was young, fit, healthy. Mr Ross was an expert. I repeated this to myself again and again. It did the trick, or I bored myself to sleep...in either case, I was able to drift into sleep.

Thursday 14 June 2012

16. Countdown...

In the three or four weeks that followed, I had a lot of time to reflect, and a lot of time to speak with friends. I had come to terms quickly with what was happening to me, and more importantly, the operation I was about to undergo. I had good days and bad days...the headaches increased in frequency, and in intensity, but I learned to manage them, and got better at foreseeing them. If I put myself to bed at the first sign of trouble, I could generally side-step the bulk of them. Not always though. The headaches were a timely, and completely unnecessary reminder of what was to come. They signalled the magnitude of what was happening inside my head, and the fragility of the tissues the tumour interfered with. Having done my research, I was painfully aware of the potential pitfalls: epilepsy and stroke, but to name a couple. I tried not to dwell on the side-effects. I wanted to focus on the main-effect - getting my life back. I spent a lot of my time thinking about the future. I won't lie and say that on occasion, my thoughts weren't dark...they were. I was however, fortunate to be able to focus mainly on the more positive aspects of my future. What possibilities lay ahead? What would my release from this dungeon of frustration allow me to do? Could I change my career path? I mused about business ideas with friends...this wasn't an area I had really thought about before, but considering them felt liberating. I was in good spirits, and knew that if I could keep this going, my recovery would be massively assisted.

One afternoon, and friend of mine who is a GP asked to pop round. She had thought about my diagnosis, and clearly tried to put herself in my own GP's shoes. She was aware that my diagnosis should have produced certain visible symptoms, and was keen to see if she could spot them. Apparently, many brain tumours are brought to the attention of the sufferer during eye examinations by opticians. I had never had problems with my eyesight, and hadn't had cause to visit one (although interestingly, it had been on my to do list when I started suffering headaches). My friend sat me down in a darkened room and produced an instrument to look into my eyes. She did this for some time without success. She told me that with the increased pressure behind my eye, a disc at the back of my eye should have gone from a sharp edge, to a rough one, but that she hadn't been able to see it. I looked at her and could see by her face that this troubled her. She told me that if I had attended her surgery, that she probably would have sent me away with medication for my headaches, and that would have been the end of it. I felt fortunate that I had presented my case to my GP in a way that led to a quick diagnosis, and that she had been open (if a little reluctant) to further explorations. GP's get a rough trot sometimes, in my opinion, when in reality, they are confronted regularly with minor issues that are easily treated, they are under immense pressure to see many patients, and then are expected to diagnose complex and rare conditions under the same conditions. People often refer to Jack of all trades, when in reality, GPs are expected to be masters of all.

I carried on biding my time until the date of the operation, and in truth, was counting down the days, hours and seconds.

15. Decision time...

I received a letter within a couple of weeks of my Neurology consultation, advising me of the next step. My appointment was with a consultant by the unassumingly named Mr Ross. When thinking about brain surgeons, My first thought is always of an old advert I remember, where a full-on punk wearing a lab coat screams the words, "I wanna be a braaaaiiin surgeon". Mr Ross was never going to live up to this. I asked a friend who I knew had relatives on a par with Mr Ross in the local medical community, what the word was on Mr Ross. The answer came just shortly after. "He's supposed to be technically brilliant. Don't know about him personally though".

So - technically brilliant. There is no negative way of perceiving that. People have good and bad days, but someone regarding as such must have that reputation for a reason...even if he came in with a stinking hangover! I realised that I must've fallen lucky. Other people had told me that the whole neuro-surgery set-up at Leeds General Infirmary was highly thought of, and whereas my friend couldn't vouch for his personality, I was about to be seen by someone whose professional reputation preceded him. On the day of the appointment, we stepped across the threshold of Leeds General Infirmary for the first time. It was an untidy mixture of architecture, and had the appearance of a patchwork quilt. The classic public owned building look of extension on extension on extension. Inside, the building showed its age, but seemed clean, and dare I say it, quite grand (in an ugly way). We made our way to Mr Ross' office, and we're greeted by one of his registrars. I learnt later that opportunities to actually see the main man would be limited. It mattered not. As long as he was exerting his influence when it mattered, I was happy. The registrar had what seemed like a strange mix of accents, with more than a hint of the trans-Atlantic about it. She was switched on, and a good communicator - I wanted and needed both, as I had a string of questions which I had been noting down for some time. There was a suggestion that I was being given an option as to whether I went under the knife or not, but when the 'not' option involved increasingly painful headaches, more cognitive problems, irreparable damage to my optical nerves, it didn't really seem like an option. I probably don't need to remind you that all I wanted was for this thing to be out. I expressed my preference, and talk turned to the operation. The registrar was clear, concise, and relayed this well. It was deemed that this was the tumour to have, and mine was presented in a way that was relatively straightforward to get out. When I use the word straightforward, I use it advisedly. The suggestion was that this would be a four-and-a-half hour operation, and it involved an incision across the top of my head, opening my skull, and tampering with my brain with an ultrasonic device, to systematically disintegrate the tumour that had become the bane of my life. The imagery this conjured was quite appealing...not least because I was told that it needn't involve my head being shaved. My head is not appealing when shaved. I look like I belong in an orphanage in Eastern Europe. Add this to the inevitable scar / stitches / staples, and it wasn't going to be a pretty sight. "Technically brilliant...technically brilliant", I repeated to myself.

I reeled off my questions, and felt like my understanding was increasing second by second. My brain works in quite a scientific manner. I'm rarely scared of what I understand, and I was starting to get what I was about to go through. I'm sure that if I'd been fully functional at the time, I would have had more questions, but I was tired, and the Registrar, no doubt, had more people to see. We came away from the appointment, knowing that they were looking at a turnaround in weeks rather than months.

Monday 4 June 2012

14. Idle hands...

Over the coming weeks, prior to my initial neuro-surgical consultation, I occupied my new found spare time with a select group of activities. I joined a gym, I walked, I researched, and I started a campaign. I was about to undergo an operation which could drastically change my life. Maybe better (in light of the previous months), maybe worse. No-one could pre-judge which way it would go. Having studied many aspects of the human body during my degree, I knew that the fitter I was, the better and speedier my recovery would be. I joined the gym close to my house, negotiating a contract that meant I could exit my contract in the event of operation disaster, and set about improving my blood pressure and overall fitness. I researched exactly what the tumour was, how it interacted with the rest of my brain, and what it meant. I had been told that the headaches and symptoms were probably a result of the added mass in my brain. Aside from reducing blood pressure, I couldn't do anything about that...that was for the surgeons to worry about.

I researched the DVLA website to give me clues as to how long I might be off the road, how I had to inform them, and how best to deal with it so I could get back on the road at the earliest opportunity. I learnt that if I surrendered my licence, they were obliged to give me it back at the end of my enforced period. If they revoked it, I would have to wait for one of the most over-burdened government agencies to complete their medical enquiries before I could have it back. "Err...no thanks", I thought. I completed the documents, and waved goodbye to my automotive independence...my beloved automotive independence.

By this point in time, I had become incredibly protective of my head. I hadn't realised it, but I had become more reluctant when getting into scrapes at work. I was shirking challenges in football which had once characterised my play. I considered getting my bike out to get about, but didn't trust myself. It felt strange as I was a confident cyclist, and had previously been fearless...now, I was weary of the road. So, In my feet I would trust. I cancelled my insurance policy on the vintage BMW (old banger), and used the proceeds to buy a shiny new pair of trainers. There were going to be a serious number of miles put in over the coming months. The car itself went on eBay, where it had once been found.

Over the days that followed my absence from work, I realised how quickly the story of my tumour had travelled, and was bombarded with polite queries about my welfare. The messages were heart-warming, and I was incredibly grateful, but I was tired, and words were not coming easily to me. How could I tell those who didn't know, and keep those who did up to date? Easy...Facebook.

The idea of a Facebook group about a brain tumour seemed morose, dark, and unpleasant. It was also too good to be true. As a member of Facebook, I had a large number of contacts, and a way of communicating with everyone who cared. I was also connected to a number of people who wouldn't care, so thought a group gave people the choice to decide whether or not they wanted to know about my progress, without ramming it in everyone's face. But what to call it? Jokingly, I had referred to my tumour as 'Ivan' on account of everyone referring to my news as 'terrible'. I had intended the group to be informative, and upbeat, as I was tackling this thing, not suffering it or submitting to it. Something defiant...'Get Ivan Out: Help me get the benign meningioma out of my brain'. Jackpot. I won't dwell too much on the Facebook capers, but people took it in the spirit it had been intended. People fed off my chirpy updates, and sensed the humour within, replying with banter, support, and ideas (both serious and nonsense). It gave me pleasure, it gave me laughs, and it gave me the opportunity to communicate in writing, where speech had become ever more difficult. In hindsight, I feel that this group helped me retain my sanity. I craved human contact, needed people's help to stay upbeat, but couldn't repeat the gory details to everyone who wanted or needed to know. Nor did I want to have to be reminded of the grave nature of the situation through the look in people's eyes when they learned of the diagnosis, and what I was about to endure. I was connected, and this way I had an element of control about how people were able to respond - I needed to feel like I was winning this battle, not wading through a mire of self-pity.