Photos – Not pretty!

Aiming for home

I had spent a couple of weeks, maybe a bit more, having to be hoisted out of bed in order to get into a chair. This had started off with nurses needing to lift me bit by bit to get the sling of the hoist underneath me before I could be moved, but had slowly progressed to the stage that I could shuffle myself onto it. I was now ready to sit on the edge of the bed! I know, I was a big boy now!

I dreaded trying, but I knew that I couldn’t go home until I proved that I was capable of walking and safely negotiating stairs. As it turned out, it was easier than I had imagined. It took a bit of bottom shuffling and swivelling into position, but I managed it. Once there, the physiotherapist asked if I wanted to try standing, which I did. This took a lot more careful movement and needed the bed to be lowered so my feet were touching the floor whilst I was still sitting. I needed to be helped into a standing position, but once there I was able to stand independently for a few seconds. Anyone with children will remember seeing their child standing for the first time, all wobbly, uncertain and proud looking; well that was me. I felt the biggest sense of achievement imaginable. 2 to 3 weeks ago I was unable to move or talk, now I could stand up by myself. It was something I had taken for granted for years, yet a period of being unable to do it, or anything, had made me appreciate how precious such basic skills are to us. To some extent it felt like an extreme version of that experiment people do at school where they try and negotiate the corridors safely whilst blindfolded in order to gain an appreciation of the challenges faced by people with visual impairments. It does give that appreciation, but can’t give you the same experiences because you know that you can just remove the blindfold and see perfectly well. I was in the same position; I could experience that feeling of being locked into your own body, unable to do or communicate anything, I knew how it felt to need someone to feed you, wash you, clean up after you have (to put it politely) made a mess. What I can’t pretend to understand is the knowledge that things will always be this way. I knew that I was going to improve, and although at times it was a living hell, I had the future to hold onto and work towards. Not everyone has that blessing.

Eventually, of course, the standing progressed to walking. It was 2-3 steps at first, but became more and more as I worked on it. It all had to be done within the confines of my room because I was still in an MRSA induced isolation, but we worked around this.

During this period I had a fantastic surprise. When Mary brought Kirstin to see me I was expecting the visit, but one day at visiting time the first person through the door was Iain, my eldest son. Mary says that my face just lit up when I saw him, she didn’t need to , I could tell. It remains one of my best memories, because it was so unexpected and I hadn’t seen him for about 5 weeks at this stage. It also made me even more determined to get out of hospital as soon as possible.

I finally got out of HDU and into a general ward. It was the female section of a geriatric ward, but this was only because it was the only place with a spare private room. This was great! I still had my own TV, the bed was much more comfortable and I knew that the next step was home.

Highly Dependant

To be honest, at first HDU felt no different to Intensive Care. I still had a room of my own thanks to MRSA, I still couldn’t do anything for myself, including roll onto my side in bed, and communication was still really difficult. I had a telly in the room, still, and that really helped to alleviate the crushing boredom and total frustration of being totally helpless.
The night time was the worst part, as it had been since I started to become more aware of my surroundings. I couldn’t sleep (after all, I’d just had a 2 week long kip), but had absolutely nothing to occupy myself. I couldn’t have the telly on because it would disturb other patients, I couldn’t get up and go due a wander. I couldn’t even move myself, I had to press a button to summon a nurse who then had to guess what I wanted, much like when a baby cries.
One night, about 3-4 days after I had moved over, there was a power cut. Normally this wouldn’t worry me, but I was hooked up to a ventilator. Those 5-10 seconds of forcing my own breath in and out felt like an hour, finally relieved by the emergency generator kicking in. At least I knew I could breathe by myself, but I’m not sure I could have managed for too long.
I started to spend longer periods of time sitting in a chair, preceded by what felt like hours of moving tubes and wires into position to get me into the ‘hoist of no dignity’. Sitting was still really tough and I hated it, but it felt a little easier each time and was obviously helping my recovery.
I also lost a lot of bulk. I had major water retention which caused my while body to puff up like a contestant on The Biggest Loser. This went in less than a day and really highlighted how much weight I’d lost in such a short time. In about 4 weeks I lost at least 3 stones, and I was not looking better for it. The pictures of me at that time (which I will post later) are startling. I looked as frail and weak as I felt.
Whilst I still had a tube in my neck I couldn’t talk. Unfortunately, no one could lip read me very accurately either. This changed when Mary took my daughter, Kirstin, to see me. Mary had really done a great job if sheltering our 3 children from what was going on and I hadn’t seen any of them since I went in for the original op. Eventually it was decided that Kirstin, as the oldest, could visit. She seemed totally unphased by all the wires and machines. More than that, though, she seemed to understand what I was trying to say. It was the first time in over 4 weeks that had happened to that extent and it felt amazing.
I had 2 regular, non family, visitors now. One was a phlebotomist (Latin for – Nasty lady with needles who wants your blood) and the other was a physiotherapist. Physio, at this stage, was just trying to lift an arm or leg, squeeze a ball or move my head. Simple, but it always left me feeling like I’d spent 3 hours in a gym. It was definitely working, though, as my movement became easier (in so much as scratching my nose was possible) and I was obviously stronger.
I was eventually strong enough for two of my least favourite tubes to be removed. First was the catheter (as the Soup Dragons would have sung “I pee, whenever I want, any old time”). Not fun to have it come out, but great once it was done. The other, finally, was the tracheotomy. It felt strange coming out, especially when I was left with just a hole, but the nurse put a plaster on the hole and, suddenly, I could speak. I had spoken already using a valve on the CPAP, but it was too difficult to breathe and I sounded like a Speak and Spell. This was my voice, for the first time in weeks!
Within a couple of days I had no machines attached to me at all and felt more human. This meant that the physiotherapist could wield her biggest torture device. Teaching me to walk again.

Moving home!

Two weeks. Two weeks aware of nothing but the sedative and painkiller induced dreams in my head while my family watched me doing nothing but worry the living daylights out of them. They watched as my blood pressure, temperature, potassium levels, oxygen absorption etc. went up and down to dangerously high or low levels with alarming regularity. I’ve been told what it was like, and it must have been horrendous (coupled with rather tedious at times), but it’s really difficult for me to communicate it to anyone because I wasn’t there. I mean.. I was, but only really in body, not in mind. My eyes occasionally flickered open and little bits of conversation would filter through, but I was oblivious to everything around me, including the experiences of my family.

I was starting to wake up now, but really I was still oblivious to everything except myself. This was for two reasons. Firstly, the medication was still playing havoc with my mind (conversations with Homer Simpson being amongst the oddest). Secondly, and more immediately, I realised the state I was in. When you’ve been in bed for two weeks with no voluntary movement at all your muscles start to waste at quite a rate. I wasn’t quite paralysed, but I was only capable of the smallest movement and that took a lot out of me. The diary I have relied on to write much of this has several accounts of me apparently being asleep and suddenly waking with the smallest stimulus or sometimes appearing to be unresponsive. On many of those occasions I was awake, but too weak to even open my eyes, or I was responding, but in such a small way (which felt a big way to me) that it went unnoticed. Frustrating doesn’t cut it. My family, on occasion, felt that I didn’t want them to be there, but I did. I craved company more than anything, I was just physically incapable of communicating this or anything else to anybody. Horrible for them to think I didn’t want to see them and horrible for me that I couldn’t tell them how much I did.

There was now a telly in my room, which had Sky News constantly telling me that Shane Warne had failed a drugs test and David Beckham had got in the way of a boot kicked by Alex Ferguson during a defeat by Arsenal. Over and over and over and over and over…….. Still, it gave me something to watch and probably helped me to focus on the real world as opposed to the imagined one.

My temperature was still fluctuating, but was the only sign of any infection. A CT scan showed nothing of any concern, which was a relief, and by Thursday 20th February I was starting to communicate better. I had my glasses back on (for those who know me, but only for a couple of years, I now wear contact lenses) and was able to focus much more on what was going on around me. Movement was still nigh on impossible for more than a couple of seconds, and only a small amount at that. That night I got out of bed. No, not a miracle, but a hoist which lifted me up and into a chair so that I could watch a UEFA Cup tie between Liverpool and Auxerre (1-0 to the Mighty Reds after a Sami Hyypia goal). It was massively uncomfortable to be sitting up. The strain on my abdomen and lungs felt like it was suffocating me and even a Liverpool victory couldn’t make it anything less than an awful experience, but it was a step in the right direction.

The following morning was amazing! The feeding tube which went up my nose and down into my stomach was removed (no, not pleasant, but not as bad as when, a few days later, the catheter was removed) and I was allowed to eat and drink small amounts. It had been 3 weeks since I had tasted anything, now a few sips of sweet tea and a couple of small spoons of yoghurt and strawberry ice cream were the most incredible things I had ever tasted. They still are, I can still taste them when I think about it and I still get that feeling of joy I had when I had them. I was winched out into the chair again for a while, again it was horrible, but neccessary.

Then, the following day, the first day of the 2003 Cheltenham National Hunt Festival which was on the telly at the time, my breathing was strong enough to be put on a different form of ventilator called a CPAP. This assisted my breathing rather than drove it. I was breathing, almost, for myself, which meant I was strong enough to finally, after over 3 weeks, leave Intensive Care and go to the High Dependancy Unit (HDU). It was a big step towards my main goal, going home.

Getting there, slowly.

There’s a scene in an episode of The Simpson’s where Homer’s boss, Mr Burns, has a medical and it’s discovered that he has every disease known to man plus a few which haven’t been discovered yet. Well, I was starting to look a bit like that, only without the sycophantic assistant, money and megalomaniacal tendencies.

As a result of the MRSA I had to be put into a private room, in isolation from all the other vibrant, active patients in ICU. Mary decided to bring a CD player in as the music would help me and not disturb any other patients. I an apparent effort to make the entire nursing staff question my sexuality she chose CD’s by Queen, Elton John and Will Young (yes, I like them all. No, I’m not!)

The following day it was decided to give me a tracheotomy due to the length of time I would still need to be ventilated. So, tube out of the mouth and now directly into my neck. Even more attractive!

After a fairly uneventful couple of days, on the Sunday, after 9 days of total unconsciousness, I actually opened my eyes. A bit. For a split second. There was no real consciousness during this time, mostly hallucinations of being somewhere else; I had no concept of where I was or what was happening to me. On occasion I would imagine being in hospital, but not really in the circumstances I was actually in (once, whilst having my sheets changed, I imagined being thrown down a laundry chute. Fun). This started to be accompanied by some almost inhuman, but agonised facial expression. I may not have known what I was going through, but I was still was going through it. The eye opening was very fleeting and rare, though, not really waking in any sense of the word.

My blood pressure and temperature were still fluctuating between high and dangerously high. I ended up in a loincloth with several fans on me trying to regulate my temperature and occasionally blowing the loincloth out of its desired position. The fact that I had a catheter in just meant that even this, not usually exposed, part of my body wasn’t really looking its best.

On the Tuesday, 11 days after I was admitted, I had a CT scan which found…… you guessed it! Another hole! Yes, my stomach had all the fluid retention ability of a colander, which at least went some way to explaining the fact that my condition didn’t seem to be improving. I was taken back down to theatre for this new hole to be fixed and an abscess, which had developed at the site of the first hole, to be drained.

What it appears happened was this – During the original op a surgical implement called a diathermy was used to cauterise some veins, I believe between my stomach and liver. The hat from the diathermy caused damage to my stomach resulting in 2 holes, one appearing very quickly, the other taking a bit longer. The doctors were now confident that no more holes would appear. Fingers crossed!

For the next few days I still had a high temperature and would occasionally open my eyes and even respond a little to some things. The high spot was probably on the Wednesday night when, due to heavy sedation, I slept through England getting beaten at football. By Australia! So I didn’t have to endure that rubbish. Every cloud, eh?

Then things started happening again. Ridiculously high blood pressure, high potassium levels (which caused concern for my kidneys again) and a drop in haemoglobin levels meant another operation, really to clean me out more than anything. My blood pressure dropped again, but the potassium levels stayed high, suggesting kidney failure. All the other signs , however, pointed to my kidneys improving. One doctor described me as a “confusing kind of guy”.

Eventually the potassium levels started to drop. I was becoming more and more responsive and conscious of my surroundings, although still prone to sedative induced hallucinations. The strangest to these came whilst some tests were being done and “Countdown” was on the telly. I imagined that I needed to go to a hospital in Sydney for these tests. To get there we just needed the hospital to be turned upside down. Obviously! Getting back involved , well, the reverse. All this was done whilst trying to solve numbers and letters games. On the whole, though, I was becoming more aware, but this just meant an awareness of the difficulties I faced.

Sweet dreams are made of this..

One of the side effects of being sedated for as long as I was is weird dreams and hallucinations. I had many of these, but unfortunately (or fortunately in some cases) my memory of them has become quite clouded. As a result I can only remember certain dreams and only sketchy bits of information from them. What I have never been able to do is to ascertain whether some particular ones are dreams from my period of sleeping in or hallucinations from after waking.

What I’m going to do here is to write what I can remember, which will look a little surreal at times and completely nonsensical at others, but I feel I should.

My first dream, and I am sure it was, saw me in a hospital (oddly enough). I was a medical student, I think, and as a form of bullying I had been handcuffed naked to a radiator in a darkened room, unable to move or cry out for help. It was cold, very frightening and probably summed up what my body was going through at the time. It seemed to last for hours until, for no apparent reason, I was transported to a nightclub. I was still naked and chained to a radiator, but now I was in a cage suspended above the dance floor in full view of everyone. Despite the captivity and total loss of dignity, the most distressing part was the awful early 90’s Euro-beat dance music playing (think Technotronic, Culture Beat and Ace of Base and you get the idea). The lighting was predominantly red, there were other cages with people dancing in them and I could see the DJ a few feet away from me knowing that, if I could only get out of the cage, his slow, painful death could easily be achieved and would be fully deserved for playing this tripe.

One dream, most of the detail completely escapes me now, involved chasing a prison van carrying a random old man and being driven by Ant and Dec. A lot of my dreams I can relate to what was happening to me at the time. This, however, appears to be mental, random rubbish.

On one occasion I found myself at a public school with two friends, a boy and a girl, and we were taking part in a very unusual game of cricket. From memory, the object of the game was to hit the ball as hard as you can and then race the ball round the school building. I won (which is probably the least believable part of the draw).

I was also involved in an investigation into the theft of a petty cash box from a small bingo hall on the Isle of Wight. I’m not sure how I became involved, but I spent a lot of time driving round in a post van visiting pubs, but not having a drink. The whole thing appeared in my head like a cross between a detective show and a local TV news report. I can’t remember if I ever solved the case.

The most vivid dream was the last one (you’ll see how I know it was the last one in a moment). I was a newspaper war reporter on the front line of an extremely violent battle. I was being accompanied by a squaddie on the Army’s transport of choice, a Space Hopper. Despite it’s obvious drawbacks (no speed, difficult manuverability, easily burst and , most importantly, very hard to fit two people onto whilst negotiating a war zone) we managed to dodge trouble until we were on our way back to base and took a direct hit (I’m not sure what from, but judging by the Space Hopper I would guess it was a Nerf dart) and I found myself being rushed to a field hospital. As I was waiting to be operated on, the field hospital came under sustained attack and an evacuation took place. As the least injured person in the hospital (so it probably was a Nerf dart) I was last to be evacuated. I lay on a gurney as the electrics went, the building shook, ceiling tiles fell around me and I could hear explosions outside. Eventually I was taken to a large military aircraft and flown back to good old Blighty. They took me to a civilian hospital and wheeled me into a private room. As we came crashing through the double doors to the room, like the original title sequence to Casualty, I closed my eyes. I didn’t open them again until all was quiet. As I did, I looked around and could make out some family pictures, my radio from home and some get well cards. I know this was my last dream because, as far as I can tell, this was the moment I woke up.

I will, in the next post, get back to what was happening in the real world, but I wanted to share what was happening in my head as I was unconscious. As I have said, I can’t remember everything, but this does give a bit of a snapshot into what it’s like to sleep for 2 weeks.