The name of the blog explained

To say that I was a touch apprehensive about the possibility of another operation is an understatement. I was terrified. One thing was for sure, I was not having “routine” keyhole surgery again. Thankfully it wasn’t an option when repairing a 6 inch hole in my abdominal muscle wall; I was going to be opened up. Even so, I was scared. The last operation I had was not a roaring success (although technically it was as my hiatus hernia was fixed) and I really didn’t want to go through that sort of experience again.

I even resorted to a session of hypnotherapy to try to ease my nerves. I’m not sure how effective it was, but I certainly felt relaxed during it. By the time the operation came round, in September 2004, 18 months after the original operation, I felt a little more prepared.

Amazingly enough, it turned out that I had not been tested for MRSA enough to be regarded as clear of it so I was to have a room all to myself again. In the geriatric ward. Again. The women’s section. Again.

I went back to Poole General Hospital, settled into my room and was told that, due to an emergency admission my operation had been put back by 24 hours. Great! Another day to stew over it!

The following morning I was taken down to theatre. My last memory before the anaesthetic was a bit weird. I knew that my massive scar would go, but it was immediately above my belly button, so my last, groggy words were,
“can you ask the surgeon to try and keep the belly button?”

I opened my eyes. The recovery room. Was I on a ventilator? No. I was clearly alive. Either that or the afterlife was not as I expected. I felt terrible, but not in an “I’m about to die” way, more like an “I’ve just had major, but not life threatening, surgery” way. Oh, and there was a very unpleasant looking drain from my stomach.

I flitted in and out of consciousness as I was wheeled back to my room. I slept for about 5 months (a couple of hours, but it felt like an eternity) and woke up, sore, but ok. The pain was being eased by an epidural, so there was limited movement below the waist. I felt rough, but I knew that things were ok.

Over the next couple of days I started to feel brighter. Then a nurse came to change my dressing and clean my wound. The first thing I noticed was the nice, clean scar. It was such a difference and I knew that activities such as swimming wouldn’t be so embarrassing. With the shark-attack scar I felt really exposed if I was in a pool, as if i was being stared at. Now, however, it looked completely norm……

Ah! It was gone! No belly button!

My first feeling was shock. Followed by, “for heaven’s sake, it’s just a belly button! It never did anything for me, it just sat there accumulating fluff. Move on!” And that was it. A lifetime of having an answer to the classic training ice-breaker question of telling everyone something they didn’t know about you had started.

I was in hospital for a week. The only event of any note being the time I was washing myself, sitting on the bed, completely naked, when a very confused old lady walked in and just looked. My hands did the sensible thing and shot downwards, covering my modesty, while a nurse ran in and ushered the poor woman out.

I was off work for three weeks, then back to work. Back to normality with no hernia of any type. No operation to dread. No belly button.

I can live with that.

Home, but a bit lumpy!

I was welcomed back home by a massive firework display at home. Well, maybe not at home, but at Baghdad. And not fireworks, but missiles. Yes, I was home in time to watch endless rolling news reports about the US/UK invasion of Iraq, which went well!

We stayed with Mary’s parents for the first few months as I got adjusted to home life and was still very weak. I could walk with the aid of sticks, but got tired out extremely quickly so I spent most of my time sitting down watching telly. Mary’s dad hired a wheelchair and took me for a walk (well, push) along the seafront, blanket over my knees, too tired to fully respond to people I knew, but it was great to be outside.

As time went by I gained strength and was able to ditch the sticks one at a time. My appetite increased as well. I asked for pizza on my first night back home, but could hardly eat any of it. That eventually changed, though, and I started to put back on some of the weight I’d lost. Then some more. And more still. I like food.

To start with I also needed a nurse to visit me at home to change the dressings on my, still open, stomach wound, as the surgery didn’t want the great unwashed (ok, someone with MRSA) coming in every day. I made it to the stage, though, where I could change the dressings myself and we were just left with all the relevant equipment, and painkillers, along with some very hefty prescription charges. By changing the dressings on the wound I could see that it was getting gradually smaller and started to look forward to not having any dressings at all.

At the end of May, Mary saw a job advertised in the local branch of Barclays Bank. It was a little less pay than I was on at the time, but it was walkable from home and the job paid more than 3 weeks sick pay before fobbing you off with SSP. I went for it, probably before I was really strong enough, but found myself getting an interview. I went to Dorchester for the interview and, much to my surprise (especially as I still had an open wound on my stomach which, to put it bluntly, smelled quite badly) I got the job. I started on July 15th, 2 weeks before a 30th birthday which for a while it didn’t look like I was going to see.

So, normal service was resumed. I was back in my own house, back at work and had a scar on my stomach which could pass for the result of a shark attack. I mean, it was massive! I had now, however, noticed something very odd. Moving lumps around the scar, especially around an hour after I’d eaten. I knew what it was, but needed to see a doctor to confirm it. An incisional hernia.

What had happened was this: Because the wound had been left to heal naturally and not stitched back up, the abdominal muscle wall had also not healed properly. What I could see was my intestine and the movement was it digesting dinner. Lovely! And strangely interesting as well. It couldn’t stay like it, though, which meant one thing. Another operation.

Homeward bound

To say I had made a quicker recovery than expected was an understatement. 5 weeks after being admitted to A&E I was up on a general ward and working harder than ever at my walking. I was able to take more visitors and my youngest son, Jamie, who was only 2 at the time, came to see me for the first time.

For my physio sessions I would be wheeled down to the hospital gym and I would practice walking with sticks on flat ground, eventually progressing to a small set of wooden steps, which felt like climbing Everest at first. I would also get the chance to sit on an exercise bike, which I found a lot easier as I wasn’t supporting my whole weight on my legs, but enabled me to add some strength to them. I could feel myself getting stronger through the day.

On this ward I saw something which totally shocked me. As I have said, I was in isolation due to the MRSA (unclean! unclean!). Every day the cleaner would come round with a mop and bucket, open the door, drag the mop through the door, mopping as she went, mopped the floor in my room and mopped her way back out. What was the point of the isolation? Don’t get me wrong, I liked the privacy, but really! You wonder how hospitals can be cleaned every day, yet bugs like MRSA can still spread, there’s your answer.

Although I couldn’t leave the room, I enjoyed having the ability to get myself out of bed and walk around it whenever I wanted. It still left me incredibly tired just making a few steps, but it felt great. What wasn’t so great was the fact that I still had a whacking great open wound on my abdomen, left open to avoid any abscesses, which needed cleaning every day. This wasn’t a nice gentle wash, but the cutting out of dirty wound tissue. As this would have been very painful, I was allowed that staple of the maternity ward, gas and air. I don’t know what the street value of this stuff would be, but I reckon it would be rather high. I felt amazing as my abdomen was hacked at by pink elephants and sparkly unicorns.

After a couple of weeks I was ready to attempt…… THE STAIRS!!!!! (Dun dun dunnnnnn!) OK, slight over dramatisation there, but this was big. There were three flights and I was to try one to start with, which I did with surprising ease and speed. What I didn’t do was stop. I immediately went for the next flight, then the next one. I had made it to the top, first go. The challenge was to get back down safely, which I did with equal ease/determination. I knew what this meant. Within a couple of days, and a couple of check ups, I was finally given the ok to go home. It had been 7 weeks, some days looked like the only way I was leaving was in a box, but I was actually going home. On 19th March 2003 I had everything packed and was finally discharged from inpatient care. I went out via ITU, to visit the nurses there who I owe my life to and give then some flowers and chocolates, but nothing could do justice to what I felt about the work that they do. Then I walked out of the doors of th hospital, still using 2 sticks, got into the passenger seat of my father-in-law’s Chrysler Voyager, and made the journey from Poole to Swanage I had been aiming for.

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.