Oh goodness, my gracious, I hope it's not contagious

My best friend and one of my great friends from Belfast have, quite independently (they've never even met), come to the same conclusion about me. 

Dave regularly says that "He can't be killed by normal means" whereas Marty phrases it that "Come  the nuclear holocaust it'll just be wee Paolo and the cock-a-roaches"

These testimonies have always amused me because they always remind me in a curious way of Terry Pratchett's definition of flying as the simple matter of 'throwing yourself at the ground and missing'. In evading death thus far this is entirely how I feel I've done it.

I've come close to proving them wrong a few times but so far their proclamations seem to have held true.

Mostly it has been medically where I've come closest, with several doses of pneumonia and other respiratory afflictions getting me perilously close but that isn't what I really want to talk about.

A couple of weeks back now a young woman got separated from her friends in Glasgow while under the influence of a good bevvy. She was last seen walking along the Clyde side and, eventually her body was recovered from the river. This has really got to me, even though I recognise it was probably an unfortunate accident.

About a dozen or so years ago I was on a stag do for a pair of brothers who were getting married within weeks of each other. A good squad of us went to Amsterdam and everything was going pretty well. A bit too well in fact as I seriously over indulged.

In one place we were in I went to the bathroom and decided to jump out and get more money from an ATM. I told nobody where I was going. This is a perfect definition of bad decision making when drunk. Details from this point on are pretty vague but the upshot is that I was mugged. I got hit on the back of the head and down I went. My wallet (empty as I was actually on my way to get money) and phone were taken. I tried to stand up but was clearly concussed and lurched sideways, over a barrier, and into a canal.

Thankfully someone who saw this unfold jumped in after me and got me safe. I was later told in the hospital that the unknown heroic person had told the ambulance crew who arrived that my foot had got caught in a bicycle frame at the bottom of the canal and they had to get me free of it.

I amazingly got away with just a small cut to the head that got glued back together, but if it hadn't been in such a busy area I could easily have died.

My friends all assumed, quite fairly really, that I had just gone home to the hotel to sleep it off. It was only when I arrived back at eight the following morning (dressed only in a paper boiler suit) and had to wake Dave up to pay the taxi driver that any of them found out what happened. Men are really bad for this. Every one of my friends has just disappeared on nights out and we all just assume that they've just had a moment of clarity and called it a night. It's an atrocious assumption.

I have problems equating that to the story of the young woman though. She was deaf and was separated from her friends not by her own volition, but by a couple of bouncers. I wonder if they mistook her attempts to communicate as her being too drunk to get back in to their club. Who knows really? I am just so sad that she had the apparent misfortune to end up in a dangerous stretch of water where nobody was likely to see her and save her.

Oh would some pow'r the gift to gie us....

....tae see irselves as ithers see us.

I have become increasingly aware of something that makes me quite unhappy. More and more I'm feeling defined by my illnesses. This might well be considered perfectly normal for someone that has been really quite ill for 9 out of the last 15 years but I had always hoped to avoid becoming so tunnel visioned about it. I am so much more than just a cancer or transplant patient so why has it become so pervasive?

Partly it is because almost every visitor I have firstly wants to talk about where things are so I spend a good chunk of my time thinking about exactly that and how I am coping. Deep down I know it's not just that though.

I'm forever pointing people to newspaper articles or tv shows that relate to cancer, especially blood cancers, or transplant related stuff. It's with an almost evangelical zeal that I do this. Of course I fully expect the response to be that it's only natural to be like that but it's recently come to my attention that a lot of folks avoid it all because it's a bit too close to home. Even talking to other patients they've said to me that they don't watch anything related to their condition, and even feel a bit off if there's some tangential reference to it in a work of fiction.

It's almost embarrassing to admit but I hadn't even considered that this was possible. I devour everything I can relating to my own condition and hope that others do too in the hope that they might understand things a bit more, or in my own case to feel something positive about shared experience. To learn that there are people who just want to put that period of their life in a box and forget about it hadn't even occurred to me.

Of course, there is the difference that I am still living it and you could argue that it's perfectly understandable that I would immerse myself in things that resonate with my own experience. That I choose to share all this stuff with others comes mostly from the noble place that if I can get more awareness of transplants of all types then I have done some good. Again though, I have to admit that's not the whole story, I don't think.

I've been out and about with friends a lot more recently because I've been well and I've caught myself basically listening to them only waiting for an opportunity to pivot the conversation back to me. I hate myself for it but I can't seem to stop it. I've always maintained that I want to hear about my visitors' lives more than talk about my own because 'real' life is far more interesting and up until recently that's genuinely been true. I even used to have a little speech about where we were at a given point regarding the lung transplant that I could rattle off in about ten minutes so that we could then talk about other stuff. Something's changed though and I'm not quite sure yet what it is.

Before I go trying to work that out though I have an admission to make. I think that my Leukaemia and subsequent lung failure make me a much more interesting person. Now that's not to say that I don't have any other strings to my bow, as I'm sure any number of people who knew me before those diseases (or even in between them) could ratify, but they have certainly made my life the road less travelled and there is a part of me that thinks that surviving it all is incredibly impressive. This is the sort of thing my closest friends and I would joke about, like how I can't actually be killed by conventional means. This has though had the side effect of me lauding it to others like it's the thing I'm most proud of. It worries me that that's kind of true though. Whilst I don't seek admiration for how I've coped I certainly love getting it.

Another thing that I've been poring over is that it's genuinely embarrassing to think how little time it takes before I'm introduced to someone before they know my whole life story.

That, of course, is triggered by curiosity because of my oxygen tubes in my nose and the wheelchair. People are just intrigued to know what has led me to this position. It's something I can explain relatively quickly, like when I needed to explain to the tattooists how none of my back story would be a reason for them not to tattoo me (like if I was immunosuppressed for example) but just because I can do it doesn't mean I always do. I can be guilty of really holding court when it comes to talking about myself and it's definitely not an admirable trait.

What I was saying about loving admiration for the way I've reacted to my condition, while true, is partly because people are so quick to offer it. I do always tell people though that if they were in a similar condition they'd cope better than they think they would, which always seems to be their starting point. Few seem to believe that they'd cope well with being ill. I was always more worried about those closest to me to worry about myself but something has definitely changed there, and this is perhaps the crux of why I'm beating myself up.

The passage of time I feel is getting to me. 7 years without a decent breath and 4 years staring at a phone will eventually break even the strongest of wills. Now, I'm not falling apart. On most days I am still just the smug arsehole that I've always been but I guess the point of this whole ramble is that I'm asking people to consider that there might be days now where I'm not coping as well as I have done previously.

To say it's asking permission to feel sorry for myself isn't quite right but neither is it that far off the mark either.

Having written that I suddenly realise that everyone will understand that because I am surrounded by an absolutely incredible support network. I don't know either way whether my response to my initial diagnosis set the tone for how my team are around me reacted or whether it was their almost total irreverence that allowed me to only take it as seriously as I needed to. I'm personally a lot more reverent when it comes to my situation now because it is, as I've mentioned in previous posts, a progressive condition. That scares me and it's not something I'm very familiar with as a feeling.

So, if you have been in my company recently and ever thought that, even by Paul's standards, he's talking about himself a lot I think it's because I'm scared that the call won't come; that this will be my legacy.

OK, it's just a little pin prick

Yes, I've used a lyric from the same song as my last post but you'll perhaps understand why.

In the year 2000 I was living in Cardiff and wanted to get a tattoo that was representative of my time there. What felt obvious to me was that, as a Scot living in Wales, something Celtic would be perfectly appropriate. I spent months agonising over whether it would be a band, or a knot or something else entirely until I found a design of a cross I liked in a tattooists that came with the recommendation that it was the one the Welsh rugby team used. I wouldn't normally pick a tattoo from the wall of a tattoo parlour as I usually want something much more personal but this was just right.

I wanted it done on my spine with enough space above and below for anything else I wanted added later (which you will see I did indeed add in the guise of a tribal piece across my shoulders). When the tattooist asked me to check by looking into the mirror to see if I was happy with the transfer for positioning I thought it looked a tiny bit off but put that down to me twisting to see it. As it turns out I should have trusted my judgement as it was a bit out (as you'll see shortly) but I didn't actually find this out for 5 years because every time I looked at it I was still twisting to see it in the mirror. It wasn't till I got it re-done after it faded post-radiotherapy that the tattooist mentioned it was a bit off. It had also slightly distended, apparently possibly from getting very fat and then very thin rapidly from a course of steroids. So not only was it slightly off centre but it was unsymmetrical now too.

So, knowing that it was a bit wrong annoyed me a little but I figured there was nothing I could do about it. The show Tattoo Fixers changed all that. Seeing how they could remodel a bad tattoo into something so much better got me thinking, so I went into a tattoo parlour called Tribe, that had an excellent reputation, on my way back from hospital one day just to have a chat about what could be done with it. The placement and the darkness of the ink made it difficult for them but not impossible. We needed to come up with a design I liked and while they took that idea and tried to see what they could do to cover up as much of the cross as possible I would start getting it lightened with laser treatment. As a slight aside I knew from the first few minutes that I was in Tribe that it was going to be OK because two men came in off the street, one of whom wanted a tattoo of a wolf. He seemed to think he could just come in and get it that day but he was sent away with quite a lot of homework about what style he wanted and all sorts of variables. These were people who take their craft seriously. I digress. So here is what it looked like after five laser treatments.

As you can see it has already faded a lot and would continue to fade throughout the tattooing process. The lasering works by splitting the bulk colour of the original tattoo into smaller globules that the immune system can then recognise as foreign and get rid of. It also vapourises the water in your skin which stings a bit. In fact I'd have to say it stung more than the tattooing itself in my opinion. You'll also see there is a green line that marks my spine and confirms that the tattoo is off line and unsymmetrical. Maybe it's not much off as I said but it was enough to annoy a pedant like me.

The next thing was to take the original idea for a design and customise it for my more symmetrical tastes, which took this Phoenix idea

and made it into this basic design

The eagle eyed among you will see that the cross isn't completely covered but, with the ongoing fading of it allied to the notions of colour detailing going on after the main blocks of colour, there shouldn't be much of it left showing afterwards. The first session just did the outline and a wee block at the tail.

Having decided that it would be a slow process thanks to the nature of my skin the second session would then concentrate on the main body leading to this.

Another couple of weeks later, we added the wings

Another few weeks later we started on the colour detailing between the wings.

It was at this point that the tattooist, Tim, mentioned that having made the tail so much shorter than in the original drawing that there was plenty space if I did want to add something below while the other stuff healed. That got me thinking to something I had been considering for years but due to assorted health crises getting in the way I never actually acted on. I already have one (admittedly a bit wanky) philosophical quote on me - Quis custodiet ipsos custodes? (Who watches the watchmen?) is written round my right wrist - but I've always loved another quote and I had considered where I could get it done. The line goes 'Battle not with monsters, lest ye become a monster, and if you gaze into the abyss, the abyss gazes also into you' and the space under the Phoenix would be perfect for it. Now, like the man who came in for his wolf tattoo, I got some homework. I had to decide if I wanted the full quote or just the first part of it, and I had to find a font I thought would be right too. That is a much harder task than you'd think, with the thousands there are to choose from. I finally stumbled across a gothic font (appropriate for the author) called Stonehenge, which allowed us all in the tattoo parlour to do Spinal Tap gags, but it also just looked perfect. 

I decided to go for the full quote instead of just the first line as I knew there was space and I think it just means more. The reason I chose this particular bit of text is because it features in some of my favourite works of literature (some very heavy like the actual source material Beyond Good and Evil by Nietzsche and some very light indeed like Not the End of the World by Christopher Brookmyre) but also because it was something that I held to be very important when I was getting treated for my Leukaemia. I know most people like to talk about fighting Cancer but, as I have said many times before on here, I rail against such terms. To talk about somebody as being a fighter in a Cancer scenario seems redundant to me and is, to my mind at least, very much for the person saying it to make themselves feel better about the situation than for the patient. Don't get me wrong I know others who completely subscribe to the idea that you have to fight with every fibre of your being against it, and I'm not going to tell them they're wrong, but that just isn't me. I chose not to battle the monster that is Cancer for fear it would make me an embittered man. It has been commented on in fact that it had quite the opposite effect on me, and made me a nicer, more humble person. I think there's an element of truth to that. Anyway, I appear to have digressed again. Finally, it is a quote that reminds me of my mate Gav. His is not my story to share so I'll have to remain cryptic on that front I'm afraid. 

Here's how it turned out in context

and a close up version to see the font better

Now I have to say it is a good thing I am a pedant as it was only just as the final transfer was being prepared that I noticed that the text was missing the word also from the final line. Now they had cut and pasted it from my email so it was my own error and I'm just glad that I caught it in time before it was put on to me permanently.

Now that the rest of my skin had healed we could do the final little bits of colouring in that would complete the job and that led to this

It's very subtle under the bright lights of the studio but the green colour going up through the main body of the Phoenix not only adds to the beauty of the piece itself but also minimises the amout of lasering that will need to be done to remove the last vestiges of the cross. It'll be a much more surgical affair than the heavy duty laser job of the first 5 sessions.

This is the pic I got taken in my room a few hours later of the whole thing because I forgot to get one of the lot done in the studio. It's not the greatest pic because of the lighting but it'll do until I go back in a few months after a decent healing time to get the lasering done.

As I said about my first visit to Tribe, I felt comfortable with the staff on all fronts and, as it has taken nearly 9 months of lasering and tattooing and all the healing time in between, I got to know the staff very well indeed. Perhaps obviously I got to know my tattooist Tim the best as we spent hours and hours together chatting about any number of topics. He is a fiercely intelligent man who gave me insights into my own condition that were so perceptive it was brilliant for me but I would also hope that he got something from talking to me as well. All the folks in there were so friendly to the assorted members of family who came with me on all my trips too - I genuinely couldn't be more thankful to them for it.

Now, this may be the end for me in terms of body art as post transplant I'll be on anti-rejection drugs for life and I may not be able to get any more tattoos done, which I am sure will make my mother happy but if in 6 months time or so I still haven't got the call for transplant I've got an idea for one to cover up some ugly scar tissue on my chest from the bone marrow transplant time. Just an idea mind.

I have become comfortably numb

My subconscious has been playing tricks on me.

Recently I have taken to listening to one of my favourite albums over and over, Pink Floyd's The Wall. It never occurred to me until I stumbled across a documentary about the album, and subsequent stage show and film, that some of the themes of the album are actually terribly familiar.

The notion of building a wall around yourself as a protective measure against what the world has to disappoint you with is something I can definitely relate to and the catharsis of tearing down that wall can be tremendous. More of which later.

The reason I chose the lyric I did for this post isn't just because it comes from one of my favourite songs but because it too reflects how I feel about my current situation. I have been medicated heavily for over seven years now and I wonder sometimes whether that as much as my own celebrated stoicism is responsible for my (mostly) tremendous outlook on my condition.

I have often made a joke about how marijuana is a gateway drug only in that it is a gateway to Pink Floyd and The Doors. I hold that to be a truism but in my current medicated state I have become the butt of my own joke in that I am finding meaning in the album that maybe the teenage occasional dabbler in drugs never even saw. It's also got some really, really good fucking guitar on it for what it's worth.

Anyway, the previous post to this was all about my search for help and it has been forthcoming on a few fronts. I will soon be seeing a transplant psychologist but I feel that the situation I found myself in when looking for such help has eased off incredibly since admitting I needed help in the first place. My friends and family have been utterly tremendous and they deserve the utmost credit in hearing me out whilst venting my spleen (not really but I like a bit of hyperbole) about how I was feeling. I talked before about the conversational clichés of my chats with friends especially; how I would always try and say when they asked about the wait for transplant that 'You never know, they could call tonight'. I've now added to that the, perhaps much more startling revelation to many of them, that I could also get a bug of some sort that would not only rule me out of transplant for the moment but rule me out for good if it damages my lungs too much. I have, for reasons that aren't really clear right now, kept back from them for a very long time that my condition is progressive and that every tiny little infection that hits me does a little bit more damage to my already bedraggled lungs and one day there may well be a tipping point where an infection kills me. 

I was so confident with the bone marrow transplant that I would get through it relatively unscathed because I was 23 and in very good physical condition, cancer notwithstanding, and also because it took 3 months to go from diagnosis to cure. I didn't have time for my disease to weaken me before the heavy treatment. This week marks 7 years since the fungal pneumonia that triggered the final decline of my breathing gear and I can see a gradual but definite decline in my ability to do things. Having said that the last few months I have been out and done so much more than I had been able to do before and I put that down to the decision to just go out and try and if I feel shattered the next day then so be it. That attitude, in concert with some cunning little physiotherapy, has left me feeling much stronger in some ways. Everyone I see says that I'm looking stronger and I can't tell them they're wrong. Superficially I am looking stronger although a lot of that is down to weight gain (I now look like my dad which is a shock to the system I can tell you). The comparison between someone 10 stone 8 pounds to someone that was once 6 stone 6 pounds is a stark reminder just how close I came to dying before really.

So where are we?

My friends are now much more keenly aware that I could die waiting for matching lungs and that is the weight off my back; the catharsis; the tearing down of a wall that I spoke of at the start of this post. They all seem thankful that I've told them too as it only occurred to a few of them off their own backs. There's been the odd tears and snotters session but everyone has the right to react in their own way. I would never deign to tell someone they can't cry over the notion of them losing someone they love.

I remain resolute in the position that I have always taken - that I am actually a very lucky person. Yes, this has been a rather untrod path that my life has taken but I have never found it to be a solitary walk and I feel overpoweringly humble about that.

Like corporation buses this post will be followed late on Wednesday night with another showing the results of the tattoo project, complete with photographs of the whole procedure from beginning to end. It has been interesting to say the least.

I had this awful feeling, that I needed help

The novelty factor of being on the waiting list has long since worn out. We are currently at the three and a half years on the active list point and that succeeds another three years just trying to get on the list. Of course no actual 'list' exists but it is a useful tool for helping explain what is happening to people. Currently there are 349 people in the UK  waiting for a double lung transplant. I am but one of them and deciding which one gets any given set of viable lungs doesn't come down to some single chart with people shuffling up and down in terms of priority. 

The reality is that they start with absolutely everyone in mind and go through the criteria for a match. Regular readers will know that this is a five point match process where blood type, tissue type, size, shape and antibody screen are taken into account. The tissue type criteria can be subdivided further, as can the blood and antibody factors so when it comes down to it there may only be a couple of patients who actually are viable for the transplant of this given set of lungs. Then I suppose you could argue that a priority list exists where the transplant team would have to make a balanced decision on which patient needs them the most urgently.

I am acutely aware that I am difficult to pair up because I have O- blood which is great if you're wanting to donate blood as anybody can receive it but not so good for me if I want to receive anything in return. I account for only about 7% of the population and when you consider that only about 25% of the lungs harvested are actually viable for use due to disease and lifetimes of unwitting misuse then you start to understand why I haven't been called yet. 7% of 25% isn't a very impressive chance of a match. Mercifully one of the other factors, the antibodies, I have mercifully few that would cause a conflict so it is very much swings and roundabouts on the statistical front. Having mentioned that it is the antibodies where I have come up short a couple of times when I got close to being considered for transplant.

It's at times like that where I consider an episode of the American TV show The West Wing where the president's chief of staff is trying to convince the president of the merits of a new missile defence system and the test goes wrong. When asked how much the missile misses by the president is told 137 to which he replies that 137 feet is quite impressive only to be told that it was actually 137 miles. It is at this point that he is reminded that once you miss a missile that is headed your way it doesn't really matter how close you got to stopping it.

You see, you have to understand that there's no point in trying to force the issue and maybe pushing through a transplant where the matching antibodies are on the cusp of being in the wrong because, although the transplant itself may go perfectly fine, you'd reject the lungs. This is where I learn to remain patient. It doesn't always come easy and I get as frustrated as all those people whom I have to tell that I am still waiting for the call and they tell me that my time is coming. It's a conversational cliché that we just have to use because addressing the utter despair of  how difficult it is is just too hard for both me and them.

This is how I avoid misery and, ultimately, depression. But it is on that front that I have an admission to make. After my last blog post about how proud I was about how well I have been coping with the wait I'm all of a sudden struggling somewhat with the whole patience thing. As you have just seen I can still explain fairly coherently why my wait for a set of lungs is simply down to statistical likelihood and not at all down to the universe conspiring against me. Each month that passes though leads to a tiny advance of the bronchiolitis, and that is my main issue. It's a progressive condition so I need to get a set of lungs before the disease advances so far that I become too sick that I wouldn't be strong enough for the surgery. This is beginning to upset me and is starting to affect my life in ways I never imagined it could. I have times where I can be genuinely mean spirited about the happiness of others. Now don't get me wrong, it's not overwhelming bitterness but deep within the genuine happiness I have for the people in my life when something good happens to them there is a tiny kernel saying 'Why not me?'. The day I recognised that I was doing this, filled with shame, I called the transplant co-ordinator to ask her what to do regarding my mental state prior to transplant. She said that to be seen by their psychiatrists I would have to go down there which is just not practical so we decided that at my next clinic appointment with my bone marrow team that I would ask them what their protocol is for those patients waiting transplant. I have no prior experience of that, considering from diagnosis to transplant was only about three months for me the last time. 

In the meantime I have opened up to a few friends about just how much of a struggle it has been recently, both mentally and physically. The physical side is just a matter of getting through the winter unscathed and with my weight being almost as high as at any point in my life, including when on steroids, I am strong enough immunologically to fight off infections much easier than in previous years, which is fantastic. The only other physical thing that is an issue is just how long I have to sleep every day. I guess it is my body telling me that it needs rest but it is very infuriating and even when I am awake I don't have the physical strength to do a lot of the things I would wish to do. That's not to say I am completely housebound or anything and actually stopping to think about it I've done more in the past 6 months than any other comparable period since first taking ill but that's the thing. The more I do, the more I want to do and then when I can't do something I had planned it just frustrates me even more than it would if I hadn't planned it. 

For what it's worth the friends I have spoken with about my condition have all been quick to point out that my responses are natural and that it is actually to my credit that it has taken till now for me to see what they have long perceived to be the great injustice of control of my life being wrenched away from me. It seems everyone else has been getting furious on my behalf about it all, which is incredibly sweet.

One of the things I have been doing is repairing something that has annoyed me for quite some time. I have a tattoo of a Celtic cross on my back and much though it is a reminder of my time in Cardiff, it wasn't done as symmetrically or as perfectly centrally as someone as pedantic as me would like. So I've silently let it annoy me every time I catch sight of it in the mirror. The TV show Tattoo Fixers prompted the idea of getting someone to have a look and see what we could do with it so I have now had 5 laser sessions to fade the existing tattoo in preparation for a cover up. The following pic is the starting point I gave my tattooist and last Saturday he presented me with his drawings of what he has in mind. It'll cover a pretty large section of my back to give you some sense of scale and the colours are getting a total reworking as well as it being a more symmetrical affair but here is the starting point

Yes, of course it's a Phoenix. What else would suit me more?

Yes, I do feel better

They say that self praise is no praise at all and while I largely agree with that sentiment I'm going to indulge a bit in it just now because of something that's aired over the last few weeks on Channel 5. It was a show called The Gift of Life and was 3 hour long episodes set in and around the transplantation unit at the Freeman Hospital, Newcastle that I mentioned in my last post. I was filmed for it but my part wasn't used as they had other stories that they felt were more pertinent to to the tone of the overall show, which was fair enough.

You should still be able to find the shows on the Demand 5 website (here). I will warn you that they are full on tears and snotters affairs even for the medical staff involved. It really is a cruel speciality with which to be involved. It's also a pretty full on show with regards showing you the brutality of the operations themselves so I wouldn't recommend it to everyone.

You may ask where my pride comes in and it stems from this. It is as simple as my ability to not let the period of waiting for the transplant break me. In the show they talk gravely about having to wait in periods of months as being a massive deal, yet here I am well over three years into the waiting list and six years post immediate lung failure. Of course I have my moments, and we are all to bend a little if we are not to break, but I genuinely think I've done a wondrous job of keeping myself from going stark raving bonkers in this time. I know this mostly because people tell me so, often when they have just expressed their surprise at how long it has been. I've explained before about how time passes differently for real people compared to me. All my days are the same so a lot of time can pass without there being a marker to go down yet for people living a normal life there are all sorts of markers to suggest the passage of time so for them it feels somehow longer. Months mostly pass in a flurry for me. Thinking back on the notion of markers dictating just how fast life passes by I have found that the ageing of my nieces and nephews has been a good guide for me, especially the youngest one, who is only just shy of a year old. The differences in her from day to day give me a greater perception of time.

That said I have been trying to get out a lot more and was out last Monday night to tick off a box I've wanted dealt with for a long time. Those who know me at all know that my favourite song ever is called Yes by McAlmont & Butler. I have the poster for the single on my wall and it has been put on every mix tape and CD that I have ever made anybody. It's twenty years old now and still sounds as fresh as the day it was written. Even after thousands of listens it still fills me with unbridled joy to hear it. If you've never heard it here it is

They only sporadically get together as a duo but I love them and the last time they played in Glasgow I had the misfortune to be hospitalised just out of earshot of the gig venue. Anyway I finally went to see them on Monday night and it was every bit as good as I could have hoped. I even got a bit teary eyed as they finished with my favourite song.

The reason I can get out to these sort of things now is because in some ways I am actually relatively strong at the moment. I am the heaviest I've been without being on steroids and this, allied to the immunoglobulins I get once a month, seem to be doing a good job of staving off infections. That's not to say I'm not absolutely exhausted after these affairs (I can be pretty much broken for two days after) but that doesn't mean I shouldn't do them. For too long in these past few years I've erred too much on the side of caution and avoided things. I'm trying not to be so scared.

I justify that to myself because for the three years previous to that I really was very poorly indeed and often had to cancel things at little or no prior warning as I was just too weak at times. I was less than 50kg in weight and getting fed through a tube direct into my stomach for goodness sakes - it's no little wonder I wasn't all that comfortable going out and about. On that topic my transplant threshold is 54kg and I am currently 68 and I feel I have gone a bit too far. I am aiming for about 60-62 so I have enough that, should an infection hit me over the winter (almost inevitable), then I will still have plenty in reserve. I also can't go any higher without the need for a new wardrobe full of clothes.

This is one area where I'm not entirely content with the way things are. I can't control my weight it seems. I am going up and down dependent on whether or not I take a medication to help me gain it. Without it the weight seems to fall off too easily and with it it goes on a bit too easily too. Even messing around with the dose isn't helping - I'm on the lowest dose now and still gaining weight. I've always been very thin but proportionate to my frame and I'm not now and am very self conscious about it. I know I shouldn't be and it's not a big deal but I'm looking at someone else's face in the mirror and I'm fairly sure I don't like it. Only a month or so ago I had a visitor in saying I was looking the best I had in years (I would have been about 60kg then) but I just can't get the balance right. This is, of course, a vanity on my part but I can't help myself with it. The other thing bothering me is I appear to have what they call Roseacea on my face which manifests in angry, red patches. I've been using a cream to try and treat it but it's not changing anything yet. I've mentioned it to the bone marrow docs in case they thought it might be a manifestation of Graft vs Host Disease again but we're all comfortable that it's not that thankfully. I just look like a borderline alcoholic with prominent veins on my cheeks. Overall for someone with my ego it's infuriating. I'm genuinely much prettier than this.

On the subject of rejection, and getting us back to the Gift of Life shows, I know I'll be in immunosuppression for the rest of my life post transplant, yet somehow I never came to the conclusion that this is because my body will never accept the new lungs as mine. After all my new bone marrow finally accepted that my organs, internal and external, were my own after a few years battling. I came off immunosuppressants then after about 5 years. I guess I just never gave it too much thought but thinking about it now I know that things will never go back to normal for me. I'll never be able to teach at a school again - the risk of infection will just be too much. This doesn't rule out further education teaching but does limit my choices markedly. I think I always favoured further education anyway but it's the not having the choice that is infuriating.

So, all in all, things are positive but I'm thinking of calling my transplant co-ordinator to try and make sure I stay that way. I'm not beyond admitting I might need help and while I've done great to this point a little bit of help from people who know this stuff inside out might not be the worst idea ever.

Look around you all you see are sympathetic eyes

It's anniversary time again. Today marks the 15th anniversary of my diagnosis of Chronic Myeloid Leukaemia. That diagnosis, dependent on how early it is caught, gives a prognosis of about 4-5 years. The fact I'm here still typing away shows that, with the right treatment, you can beat that limit substantially. Regular readers will know that the aforementioned right treatment does come with costs though and I've been perhaps unfortunate on that front with rejection based issues but surely living a decade longer than you were expected to is considerable cause for celebration. I can say that even though much of that decade has seen me dangerously ill but it's still better than the alternative. 

In more up to date news tomorrow night there is a show airing on Channel 5 called the gift of life that centres on the transplant team (my team) at the Freeman Hospital, Newcastle. There are three hour long episodes which will go into far greater depth than any of the other shows that have aired recently on the topic have had the scope to do. Hundreds of hours of footage were filmed and so it has had to be edited down fiercely, which sadly means the afternoon they spent with me has fallen foul of the editors blade. I have to be honest and tell you that because it does have that greater scope it might not be the right show for everybody to watch. It will include graphic pictures of surgery and it will almost certainly have cases where patients don't make it. My main hope is that people take away something from the show about what it is like to be in a position like mine but it's not just about the patients. I want people to be able to see what the transplant team go through too.

I've said before that I often tailor my message to the person that is visiting based on what I think they can handle. This is based on years of seeing people struggle to come to terms with how delicately balanced my life is and whether it is worth it upsetting them more. It's a little bit of a patronising conceit but I don't always want to be the one consoling people when it is me that's actually poorly. At first I didn't mind it as I realise that I'm not the only person suffering under my condition but it wears you down after a while.

The thing that's happening the most at the moment isn't really consoling people though as nearly everyone is, for want of a better term, comfortable with my situation but it's much more like dealing with their frustration and anger that the whole process is taking so long. It seems I have to remind everyone of how the odds are stacked against me in the pursuit of a fresh set of breathing gear. They can understand the individual aspects of the difficulty involved in pairing off a patient with the right lungs but can't seem to handle the statistical analysis that reduces my chances when looking at them collectively. It is literally like looking at a lottery. Your chances diminish with each factor you have to take into account. I have to match ALL 5, and that is why I've had to wait over 3 years now.