The observant among you will notice a slight change in my blurb at the top of the page.
I am indeed now in 40-50 demographic. Don't feel any different but milestone birthdays do cause you to assess things maybe a bit more than you normally would. My birthday being at the end of the year means I tend to have a bit of a review anyway so that's what I'll be trying to do today, to basically compile my report card for 2017.
I'm going to start by cheating ever so slightly and taking you into the last two days of 2016. I was getting the latest in a long line of bronchoscopies. I already had a stent in place for strengthening the windpipe, but there was a suspicion that there was something else a bit wrong. I had been voicing concerns about this (admittedly through the medium of my sister and my mum as I couldn't speak myself at this point) for ages with little in the way of response. They had found some polyps that were in an unfortunate position and closing the airway a bit so the plan was what they call LASER ablation to burn the polyps off. I knew something had been wrong and nobody really seemed to believe me. It wasn't till they discovered these polyps that they acknowledged that these would explain why I had felt there was something wrong
Anyway, when doing the bronchoscopy, things went a bit awry and the opening to one of my lungs completely closed over, which caused the lung to collapse too. The surgeon, Sasha, said afterwards that they only got the airways open again through 'brute force and ignorance'. He said I was amazingly lucky that I didn't die on the operating table.
I was obviously totally unaware of this happening as I was totally sedated with propofol, which by that point I had become very fond of indeed, but I digress. When I woke up I thought everything had gone fine and I felt pretty good, all things considered. I knew something had happened though as it was obvious my mum had been crying. The nurse Gareth that she had developed a great relationship with in the first few weeks post transplant was walking towards her apparently after he had heard what happened in theatre, and she just knew something had gone wrong. Before even uttering a word he just gave her a much needed hug. That boy is a hero.
In light of all of this happening the docs at the Freeman came to a conclusion. They felt that they had tried their best with their expertise, allied with that of the team across the city at the RVI, and what was needed more than anything else was a fresh set of eyes on the problem, so we started looking at getting me transferred to the home ventilation team at what us punters still refer to as the Southern General in Glasgow. This was great news as it meant my mum would no longer have to stay in the pokey little accommodation down there away from the rest of the family. She could go home and sleep in her own bed and, most importantly of all for me, share the burden. She didn't have to come in every day (not that she wouldn't if you let her) but visiting could be spread out much more evenly. It also meant that my wee sis wouldn't have to do the drive down whilst heavily pregnant with a sick bowl in her lap in case of emergencies.
Of course this would take time and it meant that the docs down there weren't going to try anything new in the meantime, the logic being I could actually just do with a break. I pretty much agreed with that as I was pretty weary by that point, having almost died twice in the previous months. At this point I do want to address something regarding my care. In all the many months I was down there although I received tremendous care in terms of physical issues I felt that the team in ICU had real problems with communication, both with patients and families alike. On rounds every day they would stand in a huddle at the end of your bed and talk about you. If you got any comment from them at all about what the plan was you were very lucky indeed. Normally I'd have been going mental at this but with literally no voice and no real heart for a fight I let it go. One consultant confided in me that he had actually been brought in to the team to try and improve this after complaints to that end. He said it was infuriatingly slow to get them to change their habits even in the slightest. He also told me that another reason why they were keen on transferring me was because only a certain percentage of the beds in the ICU were allocated for transplant patients and, although my issues were much more peripheral now and not really transplant issues, I was still regarded as one. As such I was using up a bed that could be used for someone else as, at that moment they were closed to transplant patients as all beds were being used. Now I hope you don't think ill of this doctor for telling me this. He was the one that was perfectly happy to be frank with me about anything I asked. He was just being honest in saying it would be a relief if they could help someone else, especially as it was clear that they weren't helping me by that stage.
I'd like to make an important distinction here. The nursing staff couldn't have been any better. They were amazing at doing what they could to make things better for me but ultimately the poor folks were pissing in the wind. You could see it was getting to them and I think they were genuinely worried for me. A couple of the doctors could learn an awful lot by paying heed to what these guys and gals actually do.
From the time the decision was made to move me the initial elation very quickly turned to massive bouts of depression. All told I spent 7 weeks from the decision to move me to Glasgow, mostly just waiting on phone calls. I was still doing routine physio and all the normal things to try and minimise any further muscle atrophy but that took up such a small part of the day that I was pretty much left to myself. To say they downed tools is an exaggeration but it just felt so endlessly bleak. Everyone spotted it, and indeed my wee sis commented that it would be kinder to just put a pillow over me and smother me. It's not that I wanted to die, but some part of me wanted it to just be finished, one way or another. One of my friends has told me that, for her anyway, the bleakest part was knowing I couldn't eat anything. That my stomach couldn't digest anything at all was indeed having a terrible effect on me. I was being fed through a tube directly into the jejunum, bypassing the stomach completely. I also had a tube up my nose to let out air that was building up in my utterly useless stomach.
The stomach was an issue because peristalsis, the contraction of muscles along your gastrointestinal tract is controlled by the same nerve that controls the diaphragm (or didn't in my case). That it was still not functioning was fucking me on two fronts.
After one missed opportunity to get up the road (due to some other person falling dramatically ill) I eventually got the nod to go up to Glasgow. Although it's exactly what I wanted I still felt massively anxious about the trip. I'm not someone prone to anxiety so this was an odd sensation for me. I requested sedation for the trip, which they were happy to oblige me with so, I got knocked out for all but the last 5 minutes of the journey in the ambulance. The nurse who came with me told me when I woke up it was a good thing I had been as it had been pretty hairy due to very high winds and icy roads. He gave me the biggest hug on leaving and made me promise to keep in touch regarding progress. He was another that my mum had developed a great relationship with, and that they still keep in touch now is testament to that.
That first day in Glasgow nothing happened at all except for swabs being taken for fear of infection as technically I was coming from a different country. I would spend that first week in an isolation room for that same reason too. That first night in Glasgow was just a bit weird. The poor nurse looking after me had to stay in the room with me all night with pretty much zero to do. She had to sit in the dark for nearly the whole shift and just watch me sleep, and not doze off herself. The self control of that alone was amazing.
The next morning the whole ICU team came around on rounds and the very first thing I noticed was that instead of huddling at the top of the bed they all stood in a semi circle around it, and I was involved in every discussion that took place. This was different, and I liked it a lot. The consultant explained to me that they have 21 of them operating in rotation and, while I'd see them all, one would be in overall control of the decision making at their weekly meeting about the patients. This was markedly different from Newcastle where I felt a few of the consultants had contempt for the practices of others and would happily bad mouth their colleagues in front of junior doctors and the patient. Again, I liked this change.
I then met the home ventilation team who were ultimately in charge of my care. They were brilliantly honest with me. The consultant Scott said that, after all I had been through, he hoped that (with a bit of luck and a following wind) I would get home only needing the oxygen on overnight and with just a mask rather than the trachae I had in place then. In his mind this was a 6 month project really as weaning me off the ventilator was not going to be easy.
It was by no means immediate, but it was only a few weeks later when things started improving. I want to make clear at this point that this would still have happened in Newcastle too, but the visiting public were convinced it was the move back home that propagated it all.
This feels like a moment for a pic to show you what it was like.
On the topic of the visiting public, I had lifted my embargo on friends visiting. It wasn't so much that I didn't want them to visit me in Newcastle, but I realised early on that a lot of the time down there I was either asleep or getting some sort of procedure or another. I feared that anyone coming down would do so and not actually see me at all. A seven hour round trip for nothing would weigh on my mind so I told them all not to come. I couldn't stop the family obviously but even if I wasn't terribly responsive (if there at all) then they at least got to spend a day with their mum. Very quickly in Glasgow I started getting my friends dropping in to see me and most visits went the same way really. The first wee bit just involved them looking at all the monitors and probes and trying to digest what my new normality was. You just had to leave them to come to their own level of comfort with it all, and it was intimidating seeing all these machines on your friend, so different people took different lengths of time. That was fine though, as everyone is entitled to their own response. Once it's out of the way though it is remarkable how quickly things return to conversational norms and we're back to slagging each other off again.
Having friends visit again also took some more weight off the family. It wasn't without flaws though as most of these folks have got real lives and responsibilities and so would occasionally have to cancel at the last minute. When you've spent your whole day looking forward to seeing someone and they suddenly can't make it it's upsetting, even if you totally understand the reasons why. It took me a long while to realise that it's not like when I was first sick with the leukaemia and we were all priority number one for each other. Now other things take precedence, as they should.
Part of the home ventilation team was the physio Dave and wasn't really bothered by how much physical exercise I was doing at that point, so it was just getting up out of bed to sit for a while and back again, just like Newcastle. What he did do that was different was respiratory physio, which involved pushing certain points in my ribcage to realign them. He was basically moving my ribs around to allow my lungs to function more fully. It sounds mental but, as my ribcage is now basically held together with bits of wire and scaffolding (which makes my chest x-rays look pretty cool I have to say) it's not quite as rigid as it would normally be. So Dave stood at the head of the bed reaching over and basically pushing and pulling at my ribs one at a time and working out what to do with each one, and it was magical. The next time Scott came in I asked him about it and he just said 'None of us really understand what Dave does, but it works so we just leave him to it'.
By this stage we had been slowly reducing the settings on the ventilator and I was coping just fine with that. One slight issue with the big ventilator that we could never resolve was that it kept alarming thinking I had stopped breathing because I didn't take enough breaths per minute for its liking, so the sleep apnoea alarm would go off all the time. Thankfully it wasn't long before they thought it was worth trying the portable ventilator that I would eventually have to use when I got home. It is a considerably more basic piece of kit but that lack of sensitivity meant that I wasn't getting this alarm going off all the time. I did have to go back on the main machine briefly when I got an infection but as soon as that cleared I was on to the portable again.
As well as that I was trying periods where I was just on humidified oxygen, which meant that it was all up to me to do the breathing rather than the ventilator doing it for me. This started just when I decided I was going to try some food again, as if my stomach was starting to work then the theory goes that the diaphragm would follow as it is the same nerve that controls them. They couldn't directly look at the diaphragm before this as the ultrasound scope they use is affected by the ventilator, but you could tell by just looking at me at that point that every breath was coming from using the intercostal muscles. They are there for a bit of extra help, but are in no way strong enough for normal breathing alone, so it really shows that you're having to work hard for every breath. Scott had by this time noticed that I wasn't having to exert myself quite so much that he was beginning to suspect that I was indeed using my diaphragm again. I started off proving this by eating tomato soup for a week or so then slowly thickening things up until the point where I could try solid foods and keep them down. At this point we decided it was time to take the cuff of the tracheostomy down for short periods to see how I could cope. The cuff sits above the vocal cords and makes your respiratory system sealed so you get all the benefits of the oxygen getting pumped in. When it's down some of it escapes up the way so you have to work a but harder. What it does mean though is that eating is easier and you can talk when it's down. That was massive for me.
From a starting point of just doing 10 minutes a few times a day to building up to doing hours and hours of it, we very quickly managed to improve things and the next stage was reducing the size of the tracheostomy itself. There were a few mishaps along the way but essentially I was recovering quicker from these mishaps than I had done before, which was all to do with getting stronger and stronger too.
Between the periods with the cuff down and being just on the oxygen I was improving in such a way that there was simply no doubt that my diaphragm was working again as there was simply no way the intercostal muscles could conceivably do this much work on their own. It's too tedious to go into all the details of the steady improvement at this stage but the physio team in ICU were getting me to do exercises as well and, exhausting though they were, there was a strange euphoria to managing them too. Don't get me wrong, some days I couldn't do them at all because I was so fatigued, but the team mostly recognised that it was a case of couldn't rather than wouldn't. At least the experienced ones could assess that. The younger ones weren't quite so good at that but that's not really their fault. That will come with time doing the job.
One day I had decided that I was going to try 24 hours off the portable ventilator. It was a Friday. I stayed off it over that whole weekend until the Monday, when we decided that, while that was amazing, it was best if we gave me a rest again before doing it all over again. We kept reducing the size of the trachae and in fact kept on reducing pretty much everything else too.
Eventually, after A LOT of hard work, the doctors were happy to move me next door from ICU to HDU. In the first few days there I had a fight with a physio and then another one with a nurse. As it happens I was in the right both times. The physio was fine about it as it had been a breakdown in communications but the nurse hated me for it. I had basically told her she didn't know her job and her ignorance was dangerous. My mum was sitting with me at this point and she had this curious mix of horror and pride on her face as I laid into this woman for being so wrong that it beggared belief. One of the doctors came over and agreed with me about it (it was all to do with IV drugs vs tablets) and she was really just being lazy because she couldn't be bothered with the hassle of giving me the drugs intravenously.
Anyway, all this improving had to lead somewhere. At first it led to me having me first shower in something like 276 days. It was amazing. Getting a bed bath every day is not actually that much fun, not least of all because you never feel like you're properly rinsed off, so this shower felt like it was getting the months and months of soap off me. It was like getting sandblasted really.
I was doing much more physio now, which involved walking up and down the corridor just next to my bed and seeing how far I could manage. As you'd expect that got farther each day and, perhaps more importantly, my recovery between these exertions was improving too. I was getting a lot of visitors at this time and two nights in particular stand out. One night three of my friends came in and I laughed just about as much as I had in years. One of their faces after he made the mistake of asking about the main surgery itself will stay with me for a long time. He looked proper horrified when I was explaining the clam shell incision. One of the others brought me in a box of tampons for sticking in the trachae site, which we were just going to try and take out the next week. The cheeky bastard. The next visitors were my ex Sam and one of my friends from school and University, Alaine. It was another fabulous night but one where I didn't so much tempt fate as much as downright goad it. My best friend was arriving in the country the next day and we were going to take the trachae out that day too and I joked with them that Dave would never believe that I even had the breathing tubes in at all.
That Wednesday started off with a promise. The nursing staff had been on at me for ages to maybe put on my own clothes for comfort but I didn't want to because it would just get in the way of the trachae and, to be honest, I didn't see the point in wrecking my own clothes when I was actually perfectly comfortable in the gowns they provided. I said to them though that when the trachae came out I would put civilian clothes on. It had become a proper marker of progress in my head.
When it came to it, it was pretty low key. One consultant and one senior nurse came and literally pulled this piece of plastic from my throat and waited to see what happened. Nothing happened. I was ok. I was still on oxygen at this point, incidentally. And so I decided to fulfil my promise and put normal clothes on. I slowly put a t- shirt on followed by a pair of kecks. I was just pulling my shorts on; I had got them to my knees when everything went wrong. It was full on crash wrong. I could not get a single breath at all wrong. Very suddenly I had pretty much the full team working around me. Even though my oxygen sats had dropped from the mid 90's to 61% I was still awake and aware enough to notice that not only was the ICU consultant there with his whole team but Scott, the man in overall charge, had arrived. Normally if you paged him he would be down in about half an hour. Then it was less than 3 minutes, which I didn't take as the best of signs really. They had to keep me awake for some of the tests they had to do, which was horrific in ways that I can't begin to explain, but as soon as they could they knocked me out. I woke up a few hours later back in ICU with my family all around the bed. Again, not a good sign.
It turns out that hat had happened was that, as I had spent about 9 months with this piece of plastic holding my airway open, all the muscles and tendons and things just weren't strong enough to keep it open on their own, so my windpipe collapsed completely and my right lung collapsed too for good measure. They had to put a trachae back in and I was back on the ventilator. I just felt like crying.
The docs came to explain what had happened and reassured me that this, for all it was shocking and I nearly bloody died again, was a setback that was only going to be weeks rather than months. I was strong enough on all other fronts to eventually get the tube out successfully. One doc would tell me afterwards that it was only about the 3rd time in all his years as a doctor that he had been properly scared. My lips hadn't just gone blue through lack of oxygen, my whole body had and it had done so rapidly.
What this meant though was that when Dave came to see me I couldn't talk to him and we were back to lip reading. He was, by some distance, just the worst at it and it was so infuriating for us both. I had a present for his new baby daughter's christening and when I managed to finally communicate with him to get it out the bag it was he looked at it, said it was lovely and then went to put it away again. I was basically silently screaming at him that it was for his daughter but he was just not getting it. Eventually he got the point and simply went 'Oh, right. Cheers mate'. Looking back on it I can laugh but at the time it was torture. I think he would probably admit that he found that visit horrendous. I had been looking forward to it for so long and it was just so difficult on us both.
After the collapse of the windpipe though there was still obviously something wrong as I was periodically desaturating. My airway was held by the trachae tube they had reinserted now but for some reason something was blocking things. The docs had collectively decided to perform surgery on me the following week to fix the airway completely. This needed two surgeons operating above and below the voice box to basically strengthen everything and also to apply a paste to the scarring in my lung that was causing it to occasionally collapse. Getting these two on the same day as well as having the drug they were going to apply is why there was a wait required. Unfortunately these desaturation events were now happening so regularly that the ICU consultant asked the ENT surgeon who would be doing the top bit of the operation around the voicebox to just have a look down with a scope to see what was going on. Within about 5 seconds he said 'Well Paul you've just gone and ruined my Sunday as we're going to have to take you to surgery straight away'. Turns out I wouldn't have made it to the Wednesday. The other surgeon (Respiratory) got called in too, in shorts and t-shirt just to highlight it was a Sunday off, and everything was prepared for enough of an intervention that would keep me safe until they could do the full job on the Wednesday.
The anaesthetist that came to see me explained that what was happening was that the opening to my lung was closing over 'as if someone has placed a nut over it' and then it was clearing itself, but the unpredictable nature of that was obviously not good enough so they went down to fix it. As it turned out this whole affair was actually going to benefit me massively in the long run. They did the rolling repairs on the Sunday (in fact the ENT doc did his whole job and so wasn't needed on the Wednesday) but Chris, the respiratory consultant noticed that there was actually more that he could do when he was going to go in again. It turns out that as well as this periodic problem of the airway closing, that when it was open it wasn't open very much. He said it was like I had been trying to breathe through a straw for months. He planned to fix that, and he bloody well did.
When I came round on the Wednesday not only was I not on the ventilator but I was on pretty minimal oxygen. As well as the work on the scarring in the lungs he had significantly widened the airways and within hours I came off the oxygen altogether and was breathing normal air, with no aids whatsoever for pretty much the first time in 8 years. It was incredible.. Now again I felt like crying, but for very different reasons.
Within a week of this happening I got the trachae out with no problems at all this time and was on my way to a normal ward. They didn't even bother with the step to HDU. It was straight to the ward. When I arrived in Glasgow nobody, and I genuinely mean nobody, thought this was possible. The notion was I would get discharged direct from ICU to home but with all manner of machines to help me breathe. Now I was breathing and doing physio and only using the oxygen for recovery. It was at this point that I had to change consultant as I suddenly didn't need the home ventilation team any more as I no longer needed ventilation at home. The surgeon who operated on me from the respiratory side of things took over. This was both sad and amazing at the same time. These people had worked wonders getting me to this point. Scott and the head nurse Allison who had looked after me came in for quite an emotional send off.
When I got to the ward the physio Dave came to see me to come up with a regime for me. He said it would take about 8 weeks for me to get home from then. My sister was due her baby in just over 6 weeks from then and so I set about destroying his predictions too. Being in a room on the ward was very weird. I had gone from a completely open ward with masses of machinery beeping constantly at one thing or another to a room on my own with nothing hooked up to me and complete silence. That I actually had to get up to use the bathroom was a bit wobbly at first but I could literally feel my strength coming back. Just like the weaning plan to get me off the ventilator the physio regime was designed to help me slowly improve muscle strength and it was important that I do it correctly as doing too much can do as much damage as doing nothing. Having said that I was improving at such a rate that we just kept moving the goalposts.
Here I am at the start of it all when we were using the oxygen still. I was simply marching on the spot for a minute or so before recovering and going again. The zimmer frame is there to stop me wasting energy wobbling from side to side, which was still a struggle.
After a few weeks of this I went outside, and it was amazing.
Things were accelerating. It seemed like miracles were just following other miracles. After a wee while I even managed a walk. This was a massive deal.
If you're thinking the tracksuit is a bit 'Thriller video' then rest assured that joke has been made many times but I don't care. In a very short time indeed I had:
Learned to talk again
Learned to breathe again
Learned to walk again.
The 8 week plan had been thrown out completely and Dave, who trusted me so much that he very rarely actually came in to see me do the physio. He only really came when we were trying something new. Very early on I actually requested that we didn't use the oxygen mask even for recovery as, even though it is giving you more oxygen, you can't take big, deep breaths well with it on. In fact it can feel quite suffocating. The docs had nothing but good things to say at this point and I was only really being used by them as a guinea pig again for teaching junior doctors. They were happy to discharge me as long as Dave said I was strong enough to cope at home. We came to an agreement that I would stay past the point where I could just about cope at home to a point where I could cope fairly easily, which involved stairs and such things. I think I managed to prove I was strong enough during a couple of visits. Two friends from Uni came in with their kids to see me and because I mentioned that I could walk a bit now their daughter just grabbed my hand and took me for a wander down the corridor. Secondly, one of my closest friends (and the love of my life when I was 16) came in and got the shock of her life when I just got up out of bed and gave her a hug. This was a truly happy moment for both of us as should be clear from this
As fortune would have it all this progress resulted in me getting home on my sister's birthday (two and a half weeks ahead of schedule by the way). She knew that was the plan but her daughter, who I hadn't seen in 11 months and who still used to check and see if I was in my room any time she was at Granny's house, didn't know and it was just amazing surprising her by appearing like that. The wee soul was all confused and grabbed on to her mum and said 'but uncle Paul's in hospital'. After a few minutes she totally came round and I got this
In case it isn't obvious I was crying by this point, just like I am now recanting it. Just three days later my wee sis had another baby girl. You can see why I was so keen to get home that week.
The day after this I went in to Glasgow for the afternoon for a small get together for a home stag do for my best friend Dave. That I got to speak to him this time was so good for both of us. One of the other people there that day was the aforementioned mate who had got a bit queasy when I had talked to him about the transplant operation and how they open you up, and even in the fifteen minutes or so we spoke I got so much from chatting to him that it was brilliant. He helped me realise that it was OK to feel what I was feeling on a number of fronts.
Physically I was improving daily and when I went to see physio Dave at the end of August he said he simply didn't need to see me anymore as I was clearly doing the work required without prompting.
Round about this time I got a bit of mental whiplash. All the physical things that had improved at such a startling rate meant that I hadn't really had time to process each individual part of it and my brain just couldn't cope with it. Throw in the predicted depression that most transplant patients get surrounding the 'OK, now what?' question and even further on top of that, I was missing my best friend's wedding due to it being in Slovakia and that was still way beyond my capabilities. I was meant to be best man too. Round about then I was waking in the middle of the night, often in an awful state. When this happened I would regularly try and write down what was bothering me to crystallise it in my head. I would send these messages off to a few old friends who had been particularly helpful previously when I was struggling in some way, unwittingly or not, and I think I freaked them out a bit. It was too much to offload on people, which I can see in retrospect, but wasn't all that clear to me at half two in the morning when I couldn't sleep. I've written about this in previous posts so I'll not labour the point any more.
This issue was massively helped by the fact that Dave had a wedding reception do in Glasgow for all the people who couldn't make it over to Slovakia and I got to deliver my best man's speech after all. After I had finished the maid of honour came over for a chat and asked if she could be blunt with me. I said of course she could and she explained that she had heard bits and pieces about me from both Dave and her husband but not enough to really understand. So I told her the bullet points version of getting from leukaemia to here. When this was over it just happened to be time for the married couple to have their first dance. Said maid of honour asked me if I wanted to try and join them with her. So she took me by the hand and for 25 seconds or so I felt normal. Turns out I even made some people cry. It was exhausting and, truth be told, it felt like I was just hanging on while she moved around but it was just fucking brilliant.
The bulk of the rest of the year has been me slowly getting better and better, with me taking as many people as I can out for dinner so we can catch up properly on what's going on in their lives as well as mine. I had one trip to the transplant clinic back down in Newcastle too and it went tremendously well. Everyone is amazed at my progress, not least the doctors who it certainly appears now didn't think I was getting out of hospital at all. I didn't do it to prove them wrong or anything but their surprise definitely added a little something. I'd be a liar if I pretended otherwise.
Most of my care is looked after by the respiratory team up here and I have a wonderful relationship with them. I have to get occasional bronchoscopies still but I don't mind that so much as I've had so many by this point. Chris jokes with me about this saying I'm not only the record holder but I'm going to start lapping people at this rate. I had my latest one just a week or so ago and everyone is happy with how things are looking under the bonnet.
As quite a few people have phrased it I am the luckiest unlucky person on the planet. It's really hard to argue against that.
Being me I wanted to mark everything that has happened by, well, literally marking myself. I gave my tattooist an idea of what I wanted and he came up with something pretty much perfect for what I wanted. The Chimera is a creature from Greek mythology that is composed of three animals (traditionally the body and head of a lion, an extra head of a goat and the tail of a snake) and, because I now have three types of DNA, I felt that was appropriate so I now have a tattoo of something representative of that on my chest. We didn't fixate on the actual animals as it's a myth after all so let's not get too hung up on details and this is what I now have on the right side of my chest. Cheers Tim.
As fortune would have it this year it was my 40th birthday and the old cliché about how that being when life begins was sitting in my mind (the fact this is my third chance at it means I really have to do something with it I suppose) so I decided that I needed to make a big deal of this one and organise a party. Having had such a crappy birthday the year before it just seemed important. Having organised it and sent out the word to all manner of family and friends I then began to worry about who would and wouldn't turn up. It was two days before Christmas after all so quite a few people couldn't make it but an awful lot did and it was just fantastic. The last week has been pretty much perfect in fact and it's a very nice way indeed to conclude what has been an interesting year.
I know I've said on here before about the Chinese curse 'May you live in interesting times', well I could use a little boredom for a while if that's ok.
I know I still have a long, long way to go (I still have to use the wheelchair for long distances for instance) but at least I am heading into this year improving rapidly rather than the previous 8 where I was always declining.
I will leave you with a couple of videos from my party. I think they just about explain themselves.
Just as a final thought, a special mention must go to my mate Andy who has been on to see me almost every week even when it was clear that it was horrific for him. He's been a total hero.
