And you came along and found the weak spot

I've had a pretty good couple of weeks and I wanted to go over it a little. Having thought of doing so I realise that, in recent times at least, I have been guilty of editorialising. It's not been by design but I realise I have definitely been more inclined to put fingers to keyboard when positive progress has been made than when there has been anything negative to report. It's not dishonest exactly but neither is it completely honest either.

When I was in the midst of the worst transplant related stuff I did try and report on the troughs as well as the peaks, albeit I recognise now how coldly scientific I was in reporting that stuff whereas I allowed myself to be much more emotive when any positive stuff was happening. This is only human nature and I'm not berating myself for it. I just thought it was something worth addressing.

To that end about 3 or 4 weeks ago I had the first real setback in a long while. To that point I had a slow but meaningful upward trajectory in terms of getting stronger and fitter and then, quite suddenly it felt like it was undone. I got a chest infection. Nothing too dramatic for what it's worth (a course of antibiotics eventually did the job) but the first few days I felt as weak as water and then there was a period post infection where I felt like I had taken a massive step backwards. Not only was I not capable of doing anything remotely like my physio but the everyday stuff of just getting about the house was difficult again. Looking back on it now I can rationally identify that it was really no worse or dangerous than if any normal person got a similar chest infection but that it just takes me a little more help and a bit more time to get over. When you consider the winter we have gone through, that I have had this infection and one more mild cold in about December then it really is quite remarkable. 

The main annoying thing for me though was that the timing of it meant that I had to miss the wedding of an old school friend, and I was bloody furious about that. We have only been in touch again for a short while but I was really excited to go to her big do. She, having family that have undergone a lung transplant, understood completely and was simply concerned for me but that only served to bother me more as I wish she didn't have to. That's my problem though. Even though things are so much better in my life now I have to acknowledge that my new normal will still contain these odd times when I have to miss out on things, even when I am desperate to do them. I have to be smart about these things and then not let it bother me when I have made what is actually the right decision.

Anyway, somewhat belatedly getting back to the point, I'm feeling as good as I can remember in a very long while. The timing of this recovery was particularly good considering just how busy a week I had last week. On Tuesday I was in doing some clinical research study work with the respiratory team, on Wednesday and Thursday I was down in Newcastle for my quarterly transplant clinic visit, and on Friday I was in the leafy west end of Glasgow for a trip to the dental hygienist.

I've mentioned before that I try to help in any way with research stuff. I enjoy it massively even if most of the time the things that I'm helping out with are much more likely to help other patients much more than they will me but someone had to have that same thought process decades ago for the treatment I get now so it just feels right helping out. As has been pointed out to me by a few folk 'nobody is completely useless, they can always serve as a bad example'. That idea alone has led to some interesting conversations with doctors about how we only really find out how anything in the human body works when it breaks down. If everything is working fine it's actually quite hard to get a glimpse as to how it operates but if something goes wrong, and you can identify it, then you immediately have a better understanding of how it operates in normal conditions. I have mentioned the study I was in for on Tuesday before - it involves a new piece of equipment which uses electrical impedance to give a detailed, real-time picture of how the lungs are actually functioning. This is the machine that reduced every consultant who came to see it in action to uttering a single word: cool.

And it is. To be able to actually see what is going on visually rather than taking plots and calculating things is not only psychologically a massive step but the quality of information that can be gleaned from it is amazing. The doc could tell me, for instance, that there were obvious indicators that I had indeed recently suffered from an infection and was healing appropriately. It's not exerting at all - it involves having a belt with electrodes (and conductance gel) wrapped around your chest, just at the diaphragm, and you lie and breathe normally and it really does all the work.

Here's a couple of pics of what you get from it

As you can see you do still get the plots (you can see me breathing in and out just from the peaks and troughs on them) that can be used later to calculate all sorts of things but the amazing thing for me is that picture that I have expanded for the second pic. This is what I am talking about with respect to real time pictures of your lungs in action. It shows a remarkable amount of detail if you know what you're looking for, which is admittedly beyond my abilities, but the good docs tell me you can see the part of my right lung that doesn't inflate fully still as well as even being able to tell where the stent that is in my trachea is quite precisely and whether there are any growths around it. The docs are especially interested in what my pics look like pre and post bronchoscopy so have looked at that before but as they only had a short period with the machine this time we didn't have the opportunity to check that out again. 

I am going in for a bronchoscopy in a few weeks again just to see how things are looking inside and the night before I am having a sleep study done. There is a thought that I might suffer from sleep apnoea so this will hopefully show whether this is the case. That both are getting done on consecutive days shows an excellent level of joined up thinking by the team at the hospital.

On the Wednesday my brother and I went down to Newcastle ahead of my trip to clinic first thing on THursday. We have now found a B&B which is right next to the hospital and is also right next to a really nice wee pub that does excellent food too. After we arrived we went out for a bit of food and to meet a few friends who live down there. As well as friends from my time doing teacher training I also try to meet a few of the nursing staff from my time as a patient down there, but that is always dependent on shifts and things.

Clinic went really well again. A few very minor issues arose but nothing terribly marked. The first of which is that I have developed a small hernia right where the scar for my PEJ feeding tube was inserted. It doesn't bother me and isn't painful at all so nobody really wants to bother with it as opening me up to fix it would almost certainly cause more problems that it would fix. I am perfectly happy with that. The second thing is that I have been getting some occasional pain and discomfort in the kidneys. Now my kidneys got damaged not only by the radiotherapy I had for the BMT but also the many, many drugs I take now do a biit of a number on them (especially the immunosuppressant cyclosporin) so we are always doing a bit of a balancing act of giving me enough immunosuppression to avoid rejection but not to damage the kidneys beyond repair. To that end we actually reduced my dose of cyclosporin slightly but we also took a look at my entire repeat prescription to see where else we could lose things that perhaps aren't needed any more. The obvious ones are pain medications, which I have been addressing myself anyway and stopping slowly as most of my pain was muscular anyway and exercise has helped massively on that front. A few other things have been stopped and doses of others have been altered too and even just a week later I can already feel a difference in that there isn't even a slight twinge in the kidneys on either side.

Having mentioned the recent infection the doc said that I now need to take a different approach when I feel such a thing manifesting. I used to keep a store of a specific antibiotic and start it straight away. This was a fine approach pre-transplant but having taken it for a number of years (and therefore risking bacteria being resistant to it) and there now being more concern post transplant I have now to call the transplant team at the slightest hint of an infection. This was perhaps a much needed reminder that we can't fuck about in these instances and I can no longer just self medicate my way through these events but need a proper going over by the team of doctors who really know what they're doing.

Chest X-ray looked much better and breathing tests also showed a marked improvement which I felt myself anyway.

The real thing to take from this visit to clinic though was the nature of the consultation with the doctor. He was one of the docs I saw regularly when I was down there on the ICU ward and was one of the ones I got on best with. With the greatest will in the world there are a few of the doctors in that department who are not blessed with communication skills - possibly a by-product of about half the patients being sedated and even more being unable to communicate with them - so they often huddle at the end of your bed when on rounds and don't talk directly to you at any time. This doc wasn't one of them. In fact he told me that he often sat next to my bed on night shifts worrying that I wasn't going to make it as I was fighting on so many different fronts at once. He kept repeating himself just saying 'You've got some fight in you'. I hear people say things like this all the time and I usually tend towards thinking everyone would fight just as hard if they were in the same situation, but hearing such things from an experienced doctor does give you a little pause for thought that you might actually be a little bit inspirational. In fact when I went up to the ward to say hello and drop in some shortbread that was the word that all the staff there kept using. I've said on here before that I don't get to be the one who decides if I am indeed inspirational. That I don't really feel it doesn't matter - it's what other people perceive in that instance that defines it. Being honest it is actually lovely to hear.

Before heading back up we had a bit of lunch with another couple of the nurses who had looked after me, which was fantastic, and then a lovely wee run up the road. I barely even fell asleep this time.

The journey and the exertions of the clinic meant I slept a little longer on the Thursday night but I had an appointment with the dental hygienist on Friday and it was at an unfortunate time that nobody could drive me so I decided it was time to make a go of public transport. The train drops me just at the hospital but the walk from the station to the hospital itself is further than I have walked in a very long time indeed. I decided it was worth a try and if I was struggling my brother said he would come and bail me out. I made the 400-500 metres or so in about 23 minutes with 3 stops along the way. Those who see me most often see me do very short distances just fine and then recover but this was a bit different. I did manage it though and also managed the return journey. My legs were properly screaming at me and I was out of breath but my recovery each time I did have to stop for a break was very pleasing. The hygienist was amazed I was there on my own, which also felt fantastic to hear. Both her and the dental nurse were so pleased that my progress was so very visible.

I have been back on the rowing machine and am improving on that on a daily basis as well. There's all manner of criteria on the little computer that I can use as a measure for that progress so it's been an absolutely tremendous purchase.

The other day I even picked up a guitar for the first time in forever as I felt like the tremors that have held me back from doing so since transplant are finally subsiding and managed to have a little go at some of my favourite practice songs just to get the fingers moving. It was a struggle, as it would be ffor anyone who hadn't picked their guitar up in nearly two years, but the tremors mean my fingers don't go exactly where I want them to so it is that little bit harder. That I could play something vaguely recognisable felt brilliant - the tremors even give a bit of a vibrato that wasn't present before. I'll take that.

Back to the original subject of editorialising I hope that what anyone takes from this ramble is that, while I can manage a lot more now than I could, there is still a cost to them. I may look much healthier (and I am) and look like I can manage most things that normal people do, I am a very long way from being able to get somewhere near a normal life. That doesn't bother me except at those points where people don't seem to understand just how long this is going to take. I have no idea what my eventual limitations will be or what I will even be able to do with my life just yet so unfortunately it just becomes infuriating when that is one of the first things people ask me. I know it comes from a caring place so it's not the person that bothers me as much as the question, if that makes sense.

Oh aye, just before I went out for the clinical trial stuff last Tuesday my old parish priest chapped the door to see how I was. Despite having not been religious myself for some time I have always loved that those who are take the time to pray for me so for the Monsignor to arrive in was just lovely. That we spent about as much time talking about Celtic as about my health is entirely consistent with how things were back when I was an Altar boy for him. My name is no longer on the sick list on the weekly bulletin. This feels like progress in some way too.

A tattoo, or two

If you mention bed baths to anyone who has never been in hospital you get a fairly predictable response about how it must be brilliant. It's really not, and for any number of reasons. FIrst off it's not quite as glamorous as people imagine especially when it's being provided by an 18 stone man called Dave (even if he actually does a fine job).

The main problem I had with them is that they just don't actually make you feel clean. A slight washing down with hot soapy water is grand and all but unless you actually rinse the soap off well then it feels like you have a layer of the stuff building up and building up over time. Not being able to articulate this admittedly minor annoyance would eventually bother me greatly. I'm sure I'm not alone on that front.

By this stage dignity wasn't a concern for me but I did like how how much effort the nursing staff went to in making sure that you weren't uncomfortable, although I did find the massive range of euphemisms for your groin utterly baffling. I preferred it when they were just matter of fact about it and didn't make a big deal out of the fact they were giving your genitals a scrub. In fact most would ask if you wanted to do it yourself, which was a nice touch (if you'll excuse the turn of phrase), but I was of the opinion that they could see everything and reach everything without pulling at tubes and wires so would just leave them to it.

At the point immediately post operation I was particularly bad at laying on either side, especially the right side. For some reason doing so would lead to my oxygen saturation plummeting and I would start really struggling for breath, which would freak me out completely. After a while we realised if I had to roll for any reason then I would get an oxygen boost prior to even starting off. At first this was definitely a physiological response but I've often wondered if it then became psychological.

Anyway, the point of all this chat is to highlight that a lot of the time I was rolled over to have my back cleaned it would evoke some comment about the tattoos on my back. Apparently I don't look like someone who would have any never mind the massive ones that cover my back. I can't say I understand fully what that means. I don't know what someone that has tattoos looks like, if you know what I mean.

I have quite a few of them now and they are very personal. Even the couple that are just about visible are pretty discreet. I like to think they tell a story about the person I am and I've decided I'm going to share that with you. Now thi may well be as tedious as hearing about someone else's dreams so don't feel you have to read on from this point but don't say I didn't give you ample warning about the oncoming stream of bollocks.

I can't quite explain why I wanted my first one; only that I knew that I did want one. I decided early on that if I came up with an idea I would keep that idea for about 6 months and then if I still liked it I would go ahead and get it done. I was reading my favourite comic strip when it finally leapt out at me and I thought it was perfect. It was my favourite frame from my favourite Sunday strip of Calvin and Hobbes. It's actually Calvin and Hobbes dancing to classical music at 78 rpm. I love the whole strip (all 21 pnels of it) but this one alone was just perfect. and so right in the middle of my final exams for Uni I tooko a break from studying and went to a tattoo parlour just off Byres Road in Glasgow and got my first tattoo on my left thigh, where I wouldn't have to explain it away to my parents. As acts of rebellion go it was quite meek really.

It's been there nearly 20 years now and I kind of forget it's there and then I'll be sitting in the shower and spot it and it still makes me laugh. I'm sure it seems utterly frivolous and ridiculous to most but I love it still. In all my time in Newcastle only 3 people recognised what it actually was (most thought it was Tigger) but my favourite of the doctors actually has them as his avatar on Facebook so recognised it straight away. Little things like this pleased me immensely.

The second one I had done when living in Cardiff under the notion that as a Scot living in Wales something Celtic would be perfect so I went for a cross in the middle of my back. I took my time choosing which particular one I wanted. It was originally black with blue colouring but after radiotherapy had made it fade dramatically I got it totally redone and had the colour changed to green. The guy who done this told me that it had distended because of my rapid weight gain and loss from my steroid regime and so he tried putting a shadow on it to make it look better but it was never quite right and so I let it annoy me for years before finally deciding to do something about it, more of which later.

It genuinely was brilliant when it was first done - it was done at the tattoo parlour that all the Welsh rugby team got theirs done (I moved down there the very month the Rugby World Cup was held there) - it was only messed up by ridiculous swings in weight pulling at my skin. It was probably never really even that bad but it was enough to niggle at me apparently.

The next one I got was just above it, across my shoulders. I wanted something in red because I was living in Aberdeen (that being the football team colours) and to vaguely represent a Phoenix as I felt my new life up there post bone marrow transplant was enough of a second chance to merit the use of such an idea. I truly hd risen from the flames, in my head at least. It takes a bit of imagination as it looks like a normal tribal piece really but to me it looked like an abstract idea of a phoenix. I would later find out my cousin Stephen has almost the exact same tattoo, except in black. That's what can happen when you get one done from an existing design on a wall of a parlour I suppose.

It was another few years before I got another one and it was actually prompted by my friend in Belfast Celine wanting to get one as memory of her time there. She wanted a Celtic band round her wrist with a claddagh in the centre of it. I got thinking to what I would  want to memorialise my time there and the thing I came up with was something that I had kind of wanted to get for a while anyway but seemed appropriate for a place where the police are held with such mistrust.

You see my favourite full on comic book (as compared to a comic strip) is called the Watchmen by Alan Moore. At the very last page of the book it simply says Quis custodiet ipsos custodes, which is Latin for 'Who watches the watchmen?', a line taken from Juvenal's satires. Should you care about such things the answer is that it is actually us, the people, who are meant to keep the aforementioned watchmen in check - not the coastguard as Homer Simpson would maybe suggest.

Here they both are immediately after they got done - mine being the pasty coloured skin obviously. Here's the writing in a bit more detail.

Now I know that Latin techinically doesn't need the question mark but I thought it looked better so it went on as I thought otherwise it wouldn't be obvious where it begins and ends.

Having had one done in Glasgow, Cardiff, Aberdeen and Belfast I was considering what I would get to mark my time in Liverpool when real life got a bit in the way and my hospitalisation and eventual move home meant that I wasn't nearly well enough to even consider getting another one done. Then a couple of years ago I caught sight of the cross on my back in the mirror and it just annoyed me one time too many. I sought out a tattooist who could come up with an idea for either covering it up or lasering it off. What we came up with was something approaching compromise as the position and size of it meant that completely covering it would be difficult so I had a series of laser sessions to get it to fade again and then we'd work on top of it. This time instead of being abstract I wanted a proper phoenix, and it was going to be pretty big. It took quite a few sessions but this is what we ended up with.

Now the cross is just about visible still underneath the head of the bird but the real focus I hope is on the main event itself. It is the work of Tim Sandys, whose conversations while he is sticking needles into my skin have been as important to me as the work he's doing. You know you're in pretty capable hands when the person tattooing you also teaches at the Art School. I love it obviously but this is the one that garners the most comments from nursing staff, as they quite simply don't expect to see that on my back when they roll me over.

Just when we were doing that I had a further notion of something I wanted done. There is a line of Nietzschean philosophy that seemed to be appearing in almost everything I was reading for a time. One of the things I had read it in was my old mate from my time in Aberdeen Gavin's degree dissertation, when he asked me (and my then girlfriend Katherine - his best pal) to proofread it for him. It comes from the book Beyond Good and Evil and it is something I've always absolutely loved so I thought I'd get it done in memory of him - the  poor fella died a few years previously. I'm sure it will be familiar to you when you read it. Or at least the latter part will.

Without wanting to sound too pompous I have always held great stock in the first line, especially when I was fighting various diseases at different times. To not let myself yield to becoming bitter about the experience was massively important to me, and I think I've just about achieved that. I've also gazed into the abyss a few times and found out quite a lot about myself as a person in the process.

The back pieces were finished just in time for me getting the call for the lung transplant (in fact I missed my final appointment to check to see if any touch up work was needed on the Phoenix) so obviously nothing got done for a wee while but while lying in my bed my mind was racing with ideas as to how I wanted to mark this massive event in my life in tattoo form. 

I had a lot of scar tissue that I was particularly keen on covering up as well as I could as the chest drains were generally thrust in without much care for aesthetics. There isn't much I can do about the main clam shell scar, and nor would I want to really, but these smaller ones were just annoying and so just had to go.

I knew fairly on that I wanted something relating to a Chimera, the creature from Greek mythology that was made up of 3 animals, specifically because I now had 3 types of DNA that make up me now. In the original idea the Chimera has teh body of a lion, with an extra head of a goat and its tail being a snake. I knew I didn't want some graphic realisation of that and I stumbled across an idea that finally led to a crest with 3 heads. They're not exactly lion, goat and snake but are certainly close to that theme. Both Tim and I felt that when you're dealing with mythology you don't need to be absolutely exact anyway. And so this is what came of it

I didn't just want one moob to have a tattoo on it and so was thinking about what else to have on my left side to balance things out. I wanted to continue on the DNA theme but felt like the double helix was perhaps a bit on the obvious side, especially as I already have that on the ring that I bought a couple of years ago. A bit of lateral thinking took me back to my original degree and the x-ray crystallography image that allowed Rosalind Franklin to work out the structure of DNA in the first place. As Nobel prizes aren't awarded posthumously Franklin is often overlooked for her role in things in favour of Watson and Crick because she went and bloody died before the prize was awarded in recognition for the work in elucidating the structure. That I got it done on International Women's Day was also pretty perfect.

And finally, we get to a little bit of history. When Charles I was being held in the Tower of London awaiting execution he was going through the collected works of Shakespeare and embedded within one of the pages is the Latin phrase 'Dum Spiro Spero', which roughly translates as 'While I breathe, I hope'. Now if ever there was a motto that completely captures my life it is that, and so I thought that having a pair of Latin wrists would be just tremendous. I got this done yesterday just after a morning when I was in the hospital getting SPIROmetry tests done, so the universe was just aligning as far as I'm concerned.

 

Obviously this is a much shorter piece of text so I let Tim just put a wee embellishment to join the two parts together.

So there you go. A cartoon strip mixed in with some German philosophy, some Greek mythology and a bunch of Latin thrown in for good measure. High art and low art for all that such things matter.

That lots of my friends don't really understand my having them has never really bothered me. That they make sense to me genuinely is all that matters and that each time I see them I really do get joy from not only the pieces themselves but the memory of getting them done and where I was at the relevant point in my life. And even more than that recently, I have been getting them done by someone who has really got my brain motoring at a time when it wasn't necessarily functioning at its best. Cheers for that Tim.

Drying up in conversation you'll be the one who cannot talk

I've been putting this off for long enough because I haven't really got my head around it as a subject on the whole but I think we know each other well enough now that you'll cut me a little slack if I start wittering on.

I'm going back to the immediate period post transplant you see and things back then were a bit of a muddle in my mind. I was still hallucinating at times but there weren't quite as many horrific nights alone with my thoughts and staring at the ceiling counting the minutes through the medium of a pulsing ventilator. Retaining sanity through that period is actually one of the greatest accomplishments of all my time in hospital.

I mentioned in the last post about this period about the tracheostomy going in to help me but I never went into the specifics. The hole in your throat is a little under the voice box and there is a cuff that is inflated in the windpipe that effectively creates a seal there, meaning the oxygen from the ventilator all goes to the lungs and none escapes up the way and out. This cuff being below the voicebox means that no air goes over your vocal chords and so you cannot speak. Such a seal also meant that I couldn't take anything to eat or drink as it couldn't (theoretically at least) get past the cuff. This meant the insertion of a naso-gastric (NG) tube to feed me. Being fed this liquid fat directly into your stomach does give you the adequate nutritional cover but I would learn to seriously miss eating and drinking. Initially I was fine with all this though as I was sure it would only be a very short term measure until we could wean me off the ventilator. By this stage though I knew that our worries about me being a difficult patient were starting to come to pass.

Most patients only spend a very short time in Intensive Care before being moved up to the transplant ward and they progress from there. Complication after complication for me meant that I was stuck in ICU for as long as I was on the ventilator. The chronology of this is a bit on the difficult side to pin down in my head and the same applies for the family as it was a whole lot of stuff happening in a short time so recalling it now, even with Janine's updates as prompts, is difficult. I think I've got this little bit sorted in my head though. The first mishap that required a proper intervention was that one of my lungs was herniating slightly and pushing through gaps in the ribs. Prior to transplant you have to match all sorts of things and there is a slight tendency to overlook just how important the size and shape of the donor lungs and chest cavity of the recipient are in relation to each other. Now I have an unusually large chest cavity for such a short arse but even then inflammation of the donor lungs was causing them to literally push through my ribs so this required a trip back to the operating theatre. All things considered it isn't the biggest deal but it definitely needed addressing and unfortunately fixing that led to an issue that would dominate the next few weeks. Despite fixing that issue I came back from theatre and rapidly started showing signs of what they call surgical emphysema. I had the trademark crackling sensation on my chest when even the slightest compressions were made. My chest actually inflated by quite a considerable distance in that period. It was really weird to look down and see it so puffed out. This meant more medication that I can't really remember allied to more chest drains to try and clear it up. This, as I said, was not a rapid process.

While it was clearing though we could very slowly, and without any massive steps, start to reduce the settings on the ventilator. We actually at that point, with obvious hope in our hearts, changed the type of ventilator to one that was a bit more portable and would allow me to start doing more than just moving from bed to chair and back. We were thinking about a few paces at some point in the future. 

By this stage I had spent about 7 years with only the ability to walk short distances thanks to muscle atrophy (hence the extensive, and progressive use of the wheelchair in that period) so the idea that I was going to start on the road to recovery on that front was simply thrilling. I knew it wasn't going to be easy but the journey of a thousand miles begins with a solitary step and all that.

I've mentioned me getting from the bed to the chair as being my main physio on any given day but I haven't gone into what an undertaking that actually was. The logistics of it were incredible just in terms of the number of lines and bits of tubing that I was dependent on. making sure that these could reach their designated connections at all points during the transfer was a proper two person job. Thankfully in ICU you have the one on one nursing and the physio to try and do it all but if it weren't so important to make sure it all stays in the correct place it would actually be quite comical to watch. And all that for the sake of an hour because I had a plug up my hole and would need back into bed where we would do it all again, only backwards. The only bit I used to get a bit worried by was the very short time they would disconnect the ventilator so they could switch sides to make the tubing reach. That was nerve wracking for a little while. I only had to use the ceiling hoist to move me once before moving onto a contraption, which I think was called an R-Jo (or something like that) to help me stand up  and move. From there I quickly moved onto just using a zimmer frame for getting up and moving across. I knew walking was still a bit off from just how wobbly I was at this stage. Simply standing in one position even with the help of the zimmer was utterly exhausting.

When speaking to someone who had been in bed for three weeks after a compound fracture he told me he had to pretty much learn to walk again as his muscles had totally gone in even that short a period. I think it's safe to say my baseline was even lower than his so it was always going to be a long process for me. I had to prepare mentally for that, and this is where the physio team were especially good. They place demands on you for sure, but they are always realistic ones. I don't know if I just got lucky but the relationships I had with the physio team I had at that stage were just magic, especially Suzanne, who quite outrageously ripped the pish out of me on any given number of fronts. This I loved. In fact the same was true of most of the nursing staff too. You'd be forgiven for assuming that ICU is an incredibly serious and morose. With the amount of patients that don't make it allied to the number that are sedated or delirious then it's a fair assumption but the reality is far from that. Of course when the situation merits it then the staff at all levels are all business but there can be a lot of stuff happening on any given day that genuinely does lighten the mood of the place a bit for those that are aware enough to notice, and this is massively important. The camaraderie between the team that exists is so important to it functioning not just as a facility to get you ready enough for transfer to a ward but for you to stay sane in the meantime, I think at least. It occurred to me early on that these teams don't get nearly enough credit for the job they do as, like A&E specialists too for that matter, they are often viewed simply as the ones who keep patients alive long enough for the actual medics to come in and fix the real problem. Of course that's tangibly bollocks but because the patients they get in are often in such a bad way that death becomes such a reality of life in there that I just feel that they're not given the respect they deserve just because they have such a specialist range of skills that maybe wouldn't transfer to a ward job. I appear to be ranting.

I was really struggling to communicate by this point. The trachae being in obviously ruled out talking (although I'm told that there was the slightest whisper you could just about hear over the beeps and pumps of all the machines around me if it was important) but I had my phone where I could type things out if necessary and a card with the alphabet on it to tap things out, although that was incredibly infuriating. For reasons that nobody has ever actually clarified I had tremors that were uncontrollable. This meant the typing out of messages was difficult and trying to point to the correct letter on my card was difficult too. Even the slightest message was an exercise in patience for me and the person trying to decode it. Some days the tremors were so bad it was.

This did result in the most brutal haircut I ever had as I could only really specify a number two with the clippers but couldn't explain that was just for the back and sides so she just battered in and took the lot off. I thought it was funny right enough.

Oh, for the sake of momentum I've allowed my fears to get larger than life

Now, anyone can choose to take what I am about to write with as big a pinch of salt as they feel necessary but it is how I view myself.

I feel that declaring myself as a feminist is not only unnecessary but idiotic too. To feel that you have to state that you value approximately half of the human race is just pointless. I have always felt this, even before I became at least part female for what it's worth. You simply don't come from a family like mine where, for myriad reasons, the women in your life play just as important a role in making you the person you are as the men do. The people of both sexes that you choose to have in your life as you wander through it have just as big a role for that matter. The first consideration isn't ever what chromosomes they've got when you look closely enough.

Before it sounds like I am overstating the case here, or I am in danger of virtue signalling or whatever it is that fucking idiots call it these days, it is nothing to do with their inherent feminine nature that makes me admire (or indeed not admire) certain people. There are just as many women that I despise with every fibre of my being than there are men - I genuinely like to think I am an example of equality in that regard. 

Having said so it just happens that a couple of the people that I do seriously admire from my life have been at the forefront of my mind in the last wee bit are female, and the ONLY reason I mention their sexuality at all is because I was in relationships with them. Brief ones in both cases but, in their own discrete ways, incredibly important ones to me.

I am happiest in life when being challenged in some way. That my life has provided ample opportunity on that front hasn't escaped me by the way, but that I actively seek it out in relationships I think paints me in a mostly good light. Not always admittedly because I have sometimes cut relationships ridiculously short without giving the woman in question much of a chance. You could argue that this is an exercise in not wasting both of our time but the reality is probably much more like the fact I can be just a wee bit of a superior arsehole at times.

Somewhere back near the point it probably hasn't escaped your notice that my own body ticking past the point where I am now a chap in his forties has been quite prominent in my thoughts recently. It also means that many of my peers have also reached this particular point too. There's actually been quite the wee cluster of them in the last few weeks, which has resulted in a good few parties where I have shown off my massively improved health by venturing out sans wheelchair (and on Saturday night just past actually walking a few blocks worth of Glasgow city centre to get to the pub) and coping just about OK with it. As a slight aside on Saturday I was with some of my oldest friends and it was absolutely incredible just how complimentary these folks were about not only the old version of me that they knew when we were all growing up together, but the one they find themselves face to face with nowadays too. It was quite humbling actually.

I've digressed a bit again. This happens when I get an opportunity to talk about how great I am.

Seriously, back to the point this time, Friday was the birthday of a particular ex girlfriend that I have mentioned on here before. Laurie was my girlfriend for a brief period in between my being diagnosed with CML and having the Bone Marrow Transplant, which got rid of it. I have said before that her breaking up with me was one of the most courageous things that I've ever seen anyone do. I know most don't understand that but I do and that really is all that matters. Her status as one of the most courageous people I know won't be getting shifted any time but it does get added to somewhat over time. 

You're going to have to stick with me for a bit here as I do know that I'm waffling.

Way back when I qualified with my degree in Medicinal Chemistry from Glasgow Uni I was offered two choices for further study. I could go to Trinity College in Dublin and study anti-Leukaemia drugs or change discipline completely and study industrial heterogeneous catalysis systems at Cardiff University. I chose the latter ultimately because of my family history with blood cancers - my cousin had been diagnosed with ALL when we were 15 and my paternal grandfather had also had Aplastic Anaemia (that I would then be diagnosed with CML a year after making that move is kind of hard to get your head around - 3 members of the same family having some form of blood cancer is quite the curious statistical anomaly, but they are totally different conditions and need to be regarded as such as hard as that is to sometimes do). I obviously knew far more about the former as a subject but I honestly couldn't trust myself to be dispassionate enough to be a good enough scientist to study drugs for a disease that was so important to me. I genuinely feared that I would be too prone to confirmation bias and would just make bad decisions off the back of that.

Now, the aforementioned Laurie came to Glasgow to study anti cancer drugs for her PhD but, if memory serves me (apologies if any of this is wrong love but it was a while ago and I am still taking some pretty strong drugs), she was studying copper complexes in the treatment of hypoxic tumours. This was real silver bullet territory as the idea was that these complexes would cause apoptosis (cell death) within the tumours only as they were only active within the reduced state. As soon as they were exposed to the more oxygen rich environment of the surrounding, normal tissue these complexes would oxidise into a benign form. If you haven't followed any of that do not worry as it means you are a normal human being but the crux is that it would mean a drug that that can kill the cancer but not any of the normal cells and so wouldn't have any of the usual side effects of chemotherapy, most of which crudely acts by attacking cells that divide rapidly. I've often joked about traditional chemotherapies as being like carpet bombing, whereas this stuff is a laser guided surgical bloody strike of an idea.

Nowadays though one of her fields of study is actually in the treatment of the myeloid leukaemias, like the one I had. We've never actually discussed this in any great depth somehow, which I suppose I am kind of addressing here in my own peculiar way, but the fact she is researching treatments for a disease that her one time boyfriend had is partly why I admire her as much as I do. Like I said I didn't trust myself to be a good enough scientist to do such work and not let my own hopes somehow skew the work but she does it and I find that incredible. For her birthday she requested that if they felt that a present was indeed necessary that people make donations to the American Cancer Society, which is also a mark of the person she is.  The team in her research group defied that a little bit by getting her this gift

OK, so it might look a bit weird, but it is actually a model of the binding of the drug Imatinib (known to some as Gleevec - or if you go back as far as I do with it STI-571) as part of its mode of action in treating CML. As far as geek chic goes this is about as elegant and beautiful a present as I think anyone could have conceived for the Prof. 

As I hope I made clear earlier we actually have managed to not really ever talk about her research in this area so it is possible I am being incredibly presumptuous in thinking I was even a consideration in her doing this work but I bloody well hope I was. 😉

Right, that's plenty adulation for her.

The other woman I have in mind this morning has been incredibly important to me in recent times as one of my foremost cheerleaders. That hardly anybody knows this is because it is done very privately, and I reckon she may well indeed be mortified by my even mentioning it now, and so I won't even name her but her input over the last wee while has been absolutely invaluable for my sanity. This is my way of making sure that she knows just how much I appreciate (and she hopefully gets why I use this exact term) every word that she says to me. That she gets a simple, single paragraph compared to the screeds I wrote earlier in this post is in no way indicative of her worth to me - it is simply that while it is a similar level mutual appreciation society, it's one that is just that bit more private.

In other news it would be incredibly remiss of me not to mention my Uncle Stephen this week. He has been so important to me over the last decade and this week he needs a wee bit more attention than he is probably happy about but I hope he knows how much he will be at the forefront of my thoughts.

A lot like you, but an awful lot like me

When I consider the four L's of the blog title I think of them like this. Life obviously covers everything like a big circle round it all, but within that there is something akin to a colour chart where the other three overlap in certain ways (some of which I understand and some I clearly don't - there's even moments where they all come together and illuminate). 

Today I want to talk about the most difficult one for me to be absolutely open about, which is love. Now I know I have spoken about my love life on here before but it has been an editorialised version, mostly because they're not just my stories to tell and I feel just rude sharing too much of that, and anyway that's not really what I want to go into. I'm more interested in talking (again) about the more Platonic kind. Anyway, the actual love life can be summarised quite quickly when you boil it down - self sabotage and a some bad luck. The other stuff is probably more interesting.

This last week I went to the transplant clinic down in the Freeman in Newcastle and, after going through the whole rigmarole of the testing procedures to make sure that things are going ok as far as they're concerned, the reception I got from the doc at the clinic when I walked in to his office was amazing - he was so very thrilled to see that I was not only doing well but compared to when he last saw me, when they were mostly convinced that I was either going to shuffle off this mortal coil or at the very least still be utterly dependent on oxygen, that he positively beamed. It was every bit as boring a clinic as I had hoped and had only very small changes to make to my drug regime. This pleased me massively. Such a quick exit allowed me to get up to the ICU ward and to see my friends before lunch when everything goes a bit crazy. As fate would have it the first two docs that I saw were the ones who had been most pessimistic in my time down there and I grew to heartily dislike them, but to their enormous credit they were absolutely bloody thrilled that I walked in to their ward unaided.

Then I got to see my people. The ones who not only cared for me in a medical sense but properly cared for me. It's a bloody good thing I enjoy a good hug as I was getting plenty of them and the chance to talk to so many of these people whom only a few had even heard me speak was just fantastic. Doctors and nurses and physios came over for a chat. They even phoned Suzanne, who had been my physio from day one but was now working across town at the RVI, for a brief chat. It was just amazing. Some of these people have become genuine friends and it was especially good to see Nikita, who is the first nurse I remember looking after me and Johnny, who spent a lot of time with me and even came on the transfer up to Glasgow with me. The doc who woke me up on the day I was under anaesthetic for my trachae insertion just to tell me the score in the Celtic game against 'them', Kevin, was also on shift so made a point of stopping by. The whole thing was just magical.

At this point I want to highlight something. It is the update my sister Janine put up for this time last year. Not only should we think about what can happen in a year but what actually happened in 6 months as it was nearly 6 months to the day that I exited hospital and I haven't been in as a proper patient since. I know these dates so precisely because of the arrival of my niece Mia btw.

"It has taken me a while to figure out how to write this post....... we have known for a wee while now that things have not gone as well as we would have expected with Paul. There have been many ups and downs with his post transplant recovery. The positive things are that there is no apparent signs of lung rejection and after the issues with the narrowing airway, the stent seems to be doing its job effectively. 

One of the main problems is the fact that he still requires to be ventilated via tracheostomy and there have been issues getting him off the ventilator. The main problem is that there has been damage to his diaphragm which affects his ability to breath on his own without assistance. The consultants between the freeman and the rvi have had many meetings regarding the best care required for Paul and the forward plan is that he will remain at the freeman and continue with his rehabilitation until they can liase with ventilation service in Glasgow and get him moved back closer to home. We are still unsure of when this is going to happen but hopefully sooner rather than later. There is a possibility that Paul will not get off the ventilator at all because of the damage to his diaphragm so he may be on home ventilation permanently. This is a long way down the road and the main focus at the moment is getting paul under the care of the ventilation service in Glasgow and take it a day at a time with his rehabilitation getting him fitter and as healthy as possible to get him home whatever it takes. Paul, and us all, are understandably gutted by this but he still feels that having the transplant was the best option as at least we would not still be thinking 'what if?' And he has had the opportunity many people do not get. I want to thank everybody again for their continued support through all of this, when Paul gets back to Glasgow he will definitely be looking for some visitors and think he needs some better chat than ours!!!!!! I will still be doing updates on here but I feel that I have been a bit repetitive as things have slowed down so won't be doing it every night now so please don't worry if you have not heard from me in a few days. Night all x"

As you can see things weren't going so well. I was destroyed by this stage, mentally and physically. The break they gave me to try and strengthen me up before moving to Glasgow served only to lead me into the hardest period of the whole time. Feeling like nothing was progressing in any way just led me to some dark places and even the family commented that putting a pillow over my and smothering me would have been a relief. I was suffering, and so were they.

That things turned in my favour after my move is no slight on the team in Newcastle. It was a matter of my body utilising time to recover after the serious trauma of the original surgery. The failed attempts previously to get off the ventilator were doomed to that end because the nerves just weren't firing to get the correct muscles operating. That I was frustrated with some of the doctors was only in what I perceived to be a defeatist attitude rather than anything else. In some way it felt they regarded me as an inconvenience, especially on ward rounds. They were not great at communicating what I understand now to be their own frustrations that they couldn't fix things.

What has this all to do with my opening ramble? It is true that the physical stuff needed time and it would have probably happened just the same in Newcastle or Glasgow but in Glasgow I had more access to friends and family that I didn't have in Newcastle. As I have suggested from my visit to clinic last week the folks down there became my friends but I needed the fully formed team that I had essentially banned from coming down to see me when down there. As I've explained before I found the notion of any of them spending a whole day in transit only to just maybe see me awake for a matter of minutes at most to be too upsetting for me to allow it. It was entirely selfishness on my part but I was fine with it as a decision. Mostly.

When back home I was happier to allow them in as time was less of a constraint and they could take some time with me and hopefully get something out of it. This panned out to be true, not least because it wasn't that long before I did start getting better. Improving physically gave me something to talk about for the first time in a long while and that was a massive deal. Chatting about progress, no matter how small, was incredible.

At this point I had no shortage of offers of visitors, which was great, but often they didn't materialise. People had good intentions, of that I have zero doubt, but that is what the road to hell is paved with. What I needed were actual shows and they were a bit thinner on the ground. At the time, and for many, many months after I was very bitter about this (and I'm sure it's a subject I will re-visit with specifics) but if anything, my 40th birthday party showed the lengths that some will go to to come and see me when the opportunity presents itself, and I have made the decision that I need to focus on that than to look at the fact that the odd person didn't make it. There's been enough negative stuff in the last little bit of my life without inventing some to throw on top of it. Even considering the ones that didn't make it there were more than enough decent reasons - it was two days before Christmas after all.

I have loads of things lined up with some very old friends and have decided it's about time I organised things with friends from the various places I've lived all around the country too. The support I had from them when things were bad deserves repaying too. I've even reached out to people that I perhaps wasn'tso  friendly with when I was younger on the premise that none of us are the people we were when we were younger. You can never have too many friends in my opinion. Of course the flip side of that may turn out to be true and people I did like when I was younger may turn out to not be the people I want to spend time with but let's give them that opportunity first.

I want to make sure in amongst all this that the main topic of conversation isn't me. I know that it's unavoidable in some ways but let's not let it dictate absolutely everything. Even I get bored talking about me eventually after all.

It won't take much for me to show my life ain't over yet

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.