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.

Hindsight's always 20-20

Hmmm, not sure if I agree on that one. More on which later.

I've been really well for months now. The odd day where sleep wins out but largely speaking this is the strongest and best I've felt in a long while. So I've been trying to go out a lot more, with great success. This pleases me massively while I'm actually doing it but it always comes with a sting in the tail. I always wish I could do even more. Perhaps that's greedy but it's how I feel. I'm extremely jealous of how others can do things on a whim - I used to love days out where I could just go and see where the mood takes me.

I've also been thinking a lot about how this period of convalescence has affected my vision of myself. People tend to grow in confidence as they age, being more comfortable in their own skin and they build relationships around that version of themselves. I'm not short of great relationships but I'm beginning to feel like my growth as a person is stalling. Looking through the prism of the retrospectoscope is always a tricky affair I think. People will tell you (as the song lyric in the post title says) that hindsight is always 20-20 and I don't think that stands up to even mild scrutiny. When we look back at the past we mostly editorialise things, and not always judiciously. If I, for instance, split my life into decades we can examine how I view them. I am doing this mostly because, with so much time on my side, I've been reflecting on a lot of things recently, not least of which is my legacy. I worry that my best years were when I was much younger and that I have just been coasting for a while now, for obvious reasons.

I'm going to talk, possibly at length, about my whole life and my perspective on it thus far.

Up till the age of ten I was, generally speaking, a quiet, bookish type who just kind of got on with things. Never craving attention but often having it bestowed upon me anyway, mostly in the field of public speaking or singing. I'm the 4th out of 5 kids so I've always felt that I could disappear if the mood took me (being short has its advantages at times). I was almost always happy and the times I wasn't were pretty transient I think. I don't think I can really trust my memory that far back so I feel that my brain has simply chosen to remember the good stuff.

My teens were where I developed a voice that I could use for more than just reading the musings of St Paul to the people of bloody Corinth. I had a mind where I could expound on just what it was I had to say on a given topic. Following the religious theme I once asked our parish priest if we were made in God's image or he were made in ours. He called me precocious but never did actually answer the question. School dominated my life and looking back I always think that I loved it. The fact I still have so many friends from my time there would also suggest that's true and it largely is. I mostly coasted through school in such a laid back fashion that it beggars belief. Or so I tell myself. Closer inspection reminds me that I had some periods where friends were hard to come by. I had moved apart from the friends I had from my really early years, mostly through academic reasons (not by my choice I should point out), but had yet to really find a group with whom I felt really comfortable. I straddled the more popular groups and the more nerdy ones but never felt like a member of either. I was really quite lonely at a particularly vulnerable time. It wasn't long before the various groups of friends that I did have managed to somehow coalesce into one tight knit group of friends that are still my closest friends to this day though. 

One thing that rang true all through school though was that I was nearly unnaturally confident. Many would argue that I was arrogant, and perhaps with good reason, but I just always had the courage to make my beliefs felt, even when they went against the grain. This got me in trouble from time to time but nothing that any other teenage boy wouldn't get into.

So my point about reflection holds true. If you look back quickly it can all appear lovely, but if you focus a bit more you can see the flaws in that. A lens that allows you to focus on one part effectively knocks everything else out of clarity. That is where you need to be careful when reminiscing.

So school was largely great and logical progression took me to university which really was just more of the same, albeit with much more fun. My life then is the happiest I can ever remember being. I had wonderful friends, a wonderful life and a great relationship to boot. My late teens and early twenties were magnificent fun and this is where I get a bit analytical again. I wonder were they as much fun as I reflect on them as being or am I just viewing them as a peak before all the health trouble started? My old girlfriend from the time, Sam, used to regularly give me into trouble for not just enjoying things as they were and analysing them to death. This has always been a problem for me and I don't think it's something I've ever gotten rid of, as this post probably shows. I didn't do as well academically as I'd have hoped but I put this largely down to the fact that I could always find something that I'd rather be doing than what I should be doing. In my first year at uni Sam was my lab partner in Chemistry and I used to provide a thought for the week for her. One of the earliest ones was 'Procrastination is the thief of time'. How very, very appropriate for me. That relative lack of success as an undergrad didn't stop me from pursuing a postgrad career as a couple of universities wanted me to study for a PhD with them. Both would have involved moving away, either to Cardiff or Dublin. I chose the former as the topic in Dublin was anti-Leukaemia drugs, which I felt was a a bit close to home with my family history of such diseases, somewhat ironically. And this perhaps is where the memory plays the biggest tricks. I've often felt that if I hadn't moved away then I wouldn't have split up from that relationship with Sam. This is a logical fallacy known as a post hoc ergo propter hoc argument. That is to say 'after, therefore because of.' There were a million variables in that decision and we both made it with them all in mind. And this brings me to my point about hindsight, it doesn't really take regret into account. You see, I don't have regrets about the decisions I made because 'at that time' I made the correct decision according to the information I had at hand at the time. It was what I wanted. You can't regret what you wanted, not even if hindsight sometimes makes you forget those variables and you look back all misty eyed. You see back then  might stand out as the happiest period of my life to date, and I would give anything to be that happy again but that's for the future not for pining about it like I have been. I should clarify not pining for Sam as such (that would be mega creepy), but a relationship worthy of the name.

Now why am I telling you this? It's because just a few months after that period I had to make another decision; this time about what course of treatment to take for my leukaemia. Again, there were a million variables and I made the best choice I could at the time. I still don't have regrets but on reflection because, like with my love life, it was made in good faith, I am perhaps a bit bitter about how my life changed afterwards. Nobody gets out of cancer without some long term damage really but finding even the happiest subsequent periods of my life tempered by an inability to do the things you want with the people you love, most notably all the things I wanted to do with Katherine and couldn't is tough going. I'm talking about sports and hill walking and the likes filth merchants. Get your minds out the gutter. My twenties were very up and down but they appear like a beacon of light compared to my thirties. From 31 onwards I have struggled to keep it all together. I am very good in my own company but even I'm tiring a little of the wait to get life going again. I have had too much life where nothing's happened and want a bit more of the eventful stuff again.

I've been here for 6 years now and this time I have to be more aware of the good things that my hindsight is blocking out. I've witnessed my nieces and nephews growing up, which I never would have if I'd still been well enough to live away from home, and I've rekindled long lost friendships from my youth too, which has been magnificent. 

I need to be more thankful but it is proving hard. I'm not unhappy as such, I'm just not terribly happy.

I like it that way; but then again maybe

I've not written anything in a good wee while, mostly because there hasn't really been a lot going on health-wise. Whilst waiting on a transplant things are in such a state of limbo that it's hard to find anything to say that genuinely constitutes an update.

After a particularly torrid winter period I have had a relatively stable period where I have had little in the way of respiratory distress thankfully. It makes such a massive difference to my life when I remain free of such infections as it means I can plan things with the confidence of knowing I'll be well enough to actually do them. This mostly consists of either going to the pub or going out for meals with friends and family. This sort of thing breaks up my weeks brilliantly.

The flip side of these little doses of normality is that when you do get them you want more of them and it, perhaps curiously, hurts a bit more when you can't make one. It's such a frustrating aspect of things. 

If I am finding it hard to find aspects of my life to update people on you may be able to understand why my peers are finding things a bit of a struggle too. Only a few of them seem to be completely at ease with the idea that my transplant will come only when every single criteria for it is met, which could be today or it could be never. Most of the visitors I get in can't believe that I haven't been taken yet as I've been on the list for 3 years now and was waiting to get on it for 3 years before that. It's been a long time coming and lots of people are finding that tough - too tough in fact to express their frustrations at it. I get bitter about it too, partly because it feels like a massive portion of my life has ran away from me - a portion that I had fully expected to be more about settling down and enjoying my life as a teacher. Perhaps even meeting someone with whom I'd like to share all my life. None of that is possible right now and that grates a lot. I don't like not being in control of my own destiny.

I got a letter through recently from the transplant team which further crystallised my thoughts on my place on the list. It reminded me that of the donor lungs harvested, somewhere between 75-80% are rejected instantly  That means I'm looking at an even smaller number of viable organs. From there you have to match tissue type and blood type. I am O- blood type which is only 7% of the population. So 7% of about 20% just from looking at those two factors and you're looking at an increasingly unlikely number. Then you have to figure in size and shape and finally you have to look at antibody conflicts, which are another factor for possible rejection. When you look at these numbers altogether the chance of finding a match for me is actually very slim. A press release for the NHS Blood Transfusion and Transplant office highlighted in this last week also that they are getting fewer viable organs for transplant simply because people aren't dying quite as often in the correct manner to be able to use their organs. To put it in another, more blunt, way, not enough young people are dying in road traffic accidents or the likes.

The point I'm making is that I understand why I've had to wait so long. Very few others do. It aggravates them. I get asked often if I know where I am on the list and I then have to disabuse people of the notion that there is some great big preferential order of patients all of whom are against each other, or that you move up and down this list on any given day. The reality is that I'm only in contention with people who have the exact same criteria as I have (blood type, tissue type...) and so if a set that matches my criteria comes up the docs then look at who has the better shot with the set that has become available and also who has the greatest need at that moment. I worry sometimes if my relative good health may work against me on that front, then I remember that my chances of surviving the operation are much better which helps my case. It really is swings and roundabouts with this stuff.

There have been two programmes on the BBC recently about transplants which have been fairly educational  The first one was about all types of transplants and was interesting to see how similar they are and also to see the contrasts. Lungs are considered the toughest for what it's worth.

The second show was part two of a series about Great Ormond Street, and so was particularly about children waiting on a lung transplant. As you can imagine from my previous posts on this topic most of them were Cystic Fibrosis patients. This was much more familiar to my own experience and so was a bit tougher to watch but I always try to entice my friends and family to watch these things as it might answer questions they don't necessarily want to ask me. I'm very open with everyone and try to give them as much reality as possible but with some people I need to assess just how much they can handle and tailor my story accordingly. Back on the programme, it was interesting to see the actual surgery taking place and they certainly didn't hold back on showing how utterly wrecked the patients were post operation.

On the topic of TV shows, I was filmed a couple of months back for another of these transplant type shows, although this time it's for Channel 5. I spent a whole afternoon being interviewed on all aspects of my treatment, reaching all the way back to my bone marrow transplant and how it eventually led us here. It was an incredibly tough day with me having to think a lot about many things that I haven't thought about in a long time. It was therefore quite sad when the producers phoned to say that, despite it being very good material (mostly because it was different from the CF patients) they wouldn't be using my piece as two of the other patients they had interviewed had actually been transplanted and they figured it was more important to tell those stories all the way through than to show someone who was still waiting as it would alter the tone of the show. I can't argue with that at all, but I am disappointed in it. The show will be on in early October and I expect it to be brilliant for the likes of me and my peers because it is precisely about patients like me and it will go through the whole process, including surgery and post op recovery.

I was at clinic this week and they are very happy with how well I am keeping, although there is a slight issue with the skin on my face. I have red patches on either cheek that to most would look like a case of roseacea, but which the doctors worry is possibly another bout of graft versus host disease, the chronic condition of my immune system (Our Clare's technically) that refuses to acknowledge that my skin is indeed mine. It doesn't bother me so much except the little hit to the ego of looking a bit older, but I don't want to start using steroid creams on my face just for that so I'm just going to tolerate it for now unless it gets worse in colour or in size.

After nearly a year of trying out different pain medications for my aching limbs and joints we have gone back to square one with some co-codamol and diazepam. The former being for the straightforward pain relief needed in my knees and muscles and the latter as a muscle relaxant. Over the last few weeks I have been in agony with my calf muscles and knee joints in particular so to finally get this sorted will be great. I've tried lots of variations and was happy with none of them. Granted I know the diazepam has the side effect of leaving me feeling a little bit dopey but I reckon that's a small price to pay for comfort. When you consider the other painkillers I tried were leaving me feeling pretty bad too it made little sense to stay on any of them.