I don't know what else to say but I think you get it

I am still here, I just have very little to report.

It was my 36th Birthday yesterday and I was having a really good, enjoyable day with all the family till about half five when I suddenly felt drained and weak and had a tickly throat. I've had a chest infection this last week - nothing serious but enough to warrant a course of antibiotics - and I've now got a wee cold on top of it. It meant I had to pass up going out for my birthday meal with a bundle of friends. We've been doing that on my birthday since we left school and it's rare for me to miss one but if I don't feel great there's no point pushing it and then spending Christmas day miserable. I knew this morning that I had made the right decision as I feel a bit worse today. I do hope it passes quickly. I have plans for the weekend that I definitely don't want de-railed.

So in lieu of there being anything to talk about from my life I'm gonna vaguely talk about the more neglected part of my blog title, the love aspect, specifically something that I've noted over the past couple of years. Anyone over a certain age will have gone through a period in your mid 20's to early 30's where there are just weddings everywhere and monotonously regular. Well now, 7 or 8 years later some of these marriages appear to be breaking down. It got to me to wondering if there is such a thing as the 7 year itch. Are some relationships just designed to wear out? Now let me qualify that by saying nearly all my married friends are still happily so but in the last 2 years I can count 8 break ups amongst the married couples I know, and 2 on top of that who called off their wedding very close to the actual day. I hold special admiration for them because it can be the easiest thing to just carry on regardless with the wedding plans and then realise it was the wrong decision at their leisure. It takes real guts to stop a wedding train in motion. From what I see of those two it was the best decision they each ever made as they seem to be thriving having made it.

The reason I'm mentioning any of this at all is that each one of them has shocked me quite badly. They were all relationships that I thought of as absolutely concrete, which just goes to show how little any outsider knows about the inner workings of anyone else's relationships. 

One of them recently told me that they now don't believe that they can prosper in long term relationships. To them I repeated my mantra that you should always 'sing like nobody's listening, dance like nobody's watching and love like you've never had your heart broken' which is a terribly easy thing to say but I truly believe that it might actually be self fulfilling if you have a defeatist attitude. Your relationships wont work because you won't let them.

There are no answers to any of this but it's been fermenting in my brain for weeks so I thought I'd put it down, hopefully without betraying anyone's confidence.

Right, I'm signing off until the New Year so I hope everyone of you have a lovely time over the Christmas festivities. I know I will.

P

Blood, sweat and tears really don't matter...

This Sunday past was the anniversary of my Leukaemia diagnosis, a full 13 years ago now. At that time the prognosis was such that, while the disease was in it's chronic phase, I would have less than 5 years (probably notably less if my white blood cell counts were to be believed) before it went into the acute phase and then the terminal blast phase. That being the case only if none of the treatments they had for Chronic Myeloid Leukaemia were successful. Regular readers will know that I got a bone marrow transplant and even taking into account my current health issues 13 years is actually an impressive stat on it's own.

So, as happens when this time of year rolls round, I get a bit analytical about what has gone on in those intervening years. I've said before on here that I feel I was deprived of a decent chunk of my twenties and while that's perhaps a smidgeon over dramatic in the case of that decade, it is undoubtedly true for my thirties. I did a lot in my twenties, something that I seem to need other people to remind me of before I'll believe it. My thirties started off under a bit of a shadow with the recent death of my father and my career - shot to smithereens by my lack of desire to put the effort of completing my PhD thesis leading to my contract at Queen's University in Belfast coming to an end. That shadow was soon cast aside when I started working as a lab tech in a school to see if I fancied life as a teacher, something I had always fancied for myself but had put off, not just because of my career as a researcher, but because I felt I was too young and wouldn't exude the necessary authority to do it till I was at least in my thirties. 

I can justify not putting the effort in to write the thesis in a thousand ways but the overall truth of it is I just didn't want to put the effort in. My supervisor once told me that if I put in half the work he did I would be his boss. The old adage that hard work beats talent when talent doesn't work hard springs to mind. I would beat myself up about being lazy up until the point where I actually started teaching, whereupon I found something that I really wanted to work towards. I would get by on four hours sleep each night after spending the wee small hours preparing lessons and the early hours of the morning traipsing all over Liverpool to get to the school or college I was placed in. I even took up a position of lecturer for the night time A-Level course at the local college one night a week on top of the work I was doing for the PGCE. I had found something that I really wanted to work towards and wasn't afraid of failing at it. A further bout of honest soul searching has me thinking I was scared that my work in the PhD wasn't up to the required standard and I'd have failed at it. There's no empirical basis for that  in fact I don't think but it doesn't stop it creeping up in my thoughts every once in a while - that I'm not actually as clever as I sometimes think I am.

Another thing that crops up in my musings over these times are the people who I spent them with. I found out yesterday for instance that one of the guys I spent a few years at Aberdeen (and a further period in Belfast) with got married two years ago to one of the girls I worked alongside in Belfast. I had no idea this had happened because I hadn't spoken to either of them in just about 5 years. For some reason I thought I had them on my Facebook friends list but hadn't so I hadn't kept in touch with what each of them were doing. I had kind of been out of the loop firstly because I was so very busy in Liverpool but furthermore because I was subsequently so very sick in Liverpool. The next year saw me perilously close to the blade of the Grim Reaper's scythe so I was kind of preoccupied and I lost touch with a lot of people, these two included obviously. Recently, I decided to throw off the shackles of restraint that hold me back from quite simply begging for visitors as I've found that it's the squeaky door that gets oiled. I've had more visitors in the last month than any single one in the preceding four years. That's nobody's fault - as I've said often on here real life just tends to get in the way. I make a point of telling people on their way out at the end of their visits not to promise to visit more often as we both know that such promises aren't kept as often as they should be. I've got back in touch with so many people through Facebook - if I haven't got to you yet for an update don't fret, I've got nearly 300 people to get through. I'm not particularly methodical about it. I just see someone post something and I think "Oh, I must message them". I really do have to make more effort with people.

In transplant news I had another in my long line of lovely chats with Kirstie, my transplant co-ordinator who was perfectly adept at allaying my fears about something. You see, every four weeks I get a transfusion of a blood product called immmunoglobulins, or the goblins as my friend Claire calls them, and they are essentially the antibodies harvested from donor blood. My worry is that if antibodies can keep you from being a match with a donor set of lungs then surely getting lots of them every month or so just decreases your chances of finding a match. The kicker is that these are the basis of much of my immune system and are, as far as I'm concerned at least, the reason I haven't been hospitalised in four years now so to do without them would put me at risk. So to put my mind at ease Kirstie went through all my previous blood antibody samples and found that I haven't gained any in between samples being taken so it looks like it's safe for me to continue receiving this treatment without affecting my chances of finding a matching set of lungs. Kirstie went so far as to tell me that I actually only have 8 antibodies that they specifically test for in terms of potential rejection risk, which is miniscule apparently. So the fact that I matched 5 out of 8 with that set that became available a month ago is what we, in the scientific community, would call a curious statistical anomaly.

You say you want diamonds on a ring of gold

There's been too much navel gazing bollocks going on in these pages in recent times so I thought it about time that I posted about something happy. That something was my baby sister's wedding this past Friday.

I had been looking forward to this for so long that in the period leading up to it the nieces and nephews, of whom more later, were banned from coming anywhere near me as the little bug magnets have a terrible habit of sharing every little bug that's going with me. I actually found this quarantine quite difficult as I love their company but there was no way I was missing out on the big day.

On the morning I got up nice and early with Janine and waited for the hens to arrive and start their clucking while getting their hair done. All things considered it was a remarkably calm house until it came my turn to get ready. I was wearing full highland regalia. I decided for this occasion to hire the same outfit as the other menfolk in the wedding party even though I have two kilts of my own. I wanted to feel like I was part of the whole affair even in such a small, superficial way. Anyway, I went in to the bathroom and turned the shower on and waited for the boiler to kick in and the hot water to build up. It resolutely remained freezing. Normally resetting the boiler is all that's required, or in some instances a top up of the water pressure through the filling loop, but neither of these had any effect. I need a lot of time to do anything and we were rapidly running out of it but we sent my eldest sister to a neighbour's house to see if I could go there to at least get showered. She was in thankfully and so I got wheeled round and saw the beautiful sight of a stairlift to carry me up. I got showered quickly and thanked Mary for her help in our hour of need. It is perhaps a great irony that it was the boiler that packed in because my dear, departed father was actually a heating engineer and the fecker wasn't around when he was needed the most. The opinion throughout the day was that this was him in fact making his presence known, albeit in his own wicked way. I'm not going to disabuse anyone of that rather amusing notion. I got back and started the slow process of getting the whole lot on and presentable. I am of course biased in saying that I scrub up not bad when I put the effort in but I would go even further and say that I look at my absolute best when I have the full highland gear on (as shown by my choice of profile pic). Here, judge for yourselves:

I, perhaps obviously, am the one on the left with the nasal canula helping him to breathe alongside my brother Mark (who was giving Janine away in the absence of said father) and hiding behind us is my chronically camera shy mother. "Oh would some power, the gift to gie us, to see ourselves as others see us" said philandering, Masonic arsehole Robert Burns and it took seeing these photo's back on my camera screen that made me realise that I don't look quite like me. Not the way I used to look anyway. You see when I had to gain weight to make it onto the transplant list I was also in the position that I was losing muscle mass which is more dense than fat so to account for that I had to put on extra weight, so even though I don't weigh much more than I normally would I am a bit more plump than I'm used to being. Looking in the mirror every day I haven't noticed the gradual change but this is the first photo anyone has taken of me in a few years I think and it was a shock to see someone else's face looking back. 

Anyway, I made it down to the Church, handily located at the bottom of my street, safely pushed down in the wheelchair by my brother in law and we went in and got to our respective places. I had a nice chat with the Priest who was telling me this was to be his last wedding before he retires next month. I was an altar boy for Monsignor Osborne way back from mid primary school all the way through secondary school so have known him a very long time. He has married all my siblings and I'm kind of sad he won't be about should I ever get to this position. Anyway, this isn't all about me so back to the story. I'm not gonna lie, I was crying my eyes out as I saw my baby sister walk down the aisle. She was crying too I noticed - Mark was a great sub but there was a big dad shaped hole in proceedings and I think it got to her a bit. She composed herself quickly though. Here, have another pic of the proceedings:

The bridesmaids are my other two sisters, Clare and Alicia and my niece Maria. Gone are the days it seems where you would make your bridesmaids wear horrible dresses to make the bride look even better. The girls looked absolutely stunning. And now, because you can't really see them face on, here's one of Tony and Janine from outside the Church after the ceremony:

Now I was in my wheelchair but a friend of my mum's had her big estate car with her so she took me and my driver for the day, my brother in law James, to the reception venue. As well as getting me about the place we also had to factor in that gases have a habit of running out so as well as my portable liquid oxygen container, there was an extra gaseous oxygen cylinder being taken to the venue for me. I knew that I would tire quite easily so we organised that I could use one of the rooms on the ground floor (occupied by Tony's brother and his other half) for the hour or so I needed to recharge my batteries. As it was I lasted through the speeches and dinner before heading off for that much needed break. I spend most of my normal days in bed lying down so sitting in an upright position for a long while is actually uncomfortable for me now.

I wasn't required for most of the photographs thankfully but as well as the obligatory one of me with the happy couple: 

I got the ones I wanted the most from the day, that is the ones with the nieces and nephews:

And maybe my favourite, with them all around me:

Alicia's two Daniel and Nicole, Clare's Maria behind me and Mark's two Ewan and Chloe

The food was great, the speeches even better, but the relief I felt when I got to lie down for that while was something else. I had an hours sleep as I was exhausted before Tony himself came to get me. The atmosphere was brilliant. Absolutely everyone was mixing well and having a rare old tear of it. Later the DJ commented that he knew he was in for an easy night when the dancefloor was full from the first dance onwards with everyone absolutely going for it. Obviously I'm in no state to dance and it was with a terrible pang that I heard the first strains of Daniel Boone's 'Beautiful Sunday'. I was missing out on that staple of Scottish weddings, The Slosh. Gutted.

I had been sensible and taken pain medication so that I was in the most comfort I could be, although I did kind of shock a few of the folks at my table when I told them the dose that I had taken on top of the alcohol I was throwing down my neck. Between us my generation of cousins managed to introduce the older one to the wonders of the Jaeger-bomb. Reviews were mixed to say the least. While I did have a few drinks I didn't go mental with it as it's been a good wee while since I indulged but I was pleasantly pished by the time it came to go home. My uncle Billy wasn't drinking and so he took me home at about half ten so I had been out for over ten hours and was really beginning to feel exhaustion setting in. He even wheeled me right to the door and made sure I got upstairs to the safety of my room before heading back for his second taxi run.

It was an absolutely tremendous day and I'm not going to sully its memory with imponderables like how it could have been so much better if I was stronger. The facts are that I'm just not and I made the best out of the day. In fact the family were all amazed that I lasted as well as I did. So was I if I'm honest. I reckon adrenaline just kept me going for a bit as I couldn't actually get to sleep when I got home even through the exhaustion.

Saturday and Sunday I hurt like hell and slept for large swathes of both days but by Monday I was feeling normal again. It was hard going but I couldn't have hoped for a better time. And to think I almost missed it for a pair of manky lungs. Thank goodness for my rogue antibodies.

You and I can shake off this mortal coil

This post has the potential to be upsetting for many reasons so I'd like to preface it with the notice that I'm OK and that nothing has actually changed for the worse but it has been a pretty mental evening.

Around 11pm the phone went - I assumed it was my younger sister Janine calling with some detail about her upcoming wedding this Friday for my mother to pore over - but my mum came to my room with the phone with a puzzled look on her face and handed it to me. Immediately I recognised the soft Geordie lilt of my transplant co-ordinator Kirstie and immediately the cogs started whirring. Was this THE phone call?

Well in a way it was.

I'll clarify that.

They had a set of lungs that they thought were a match for me but they had to talk me through some mitigating factors about them. Now those of you who have been following this for a long while and have a good memory will know that I signed a consent form that said I would take lungs from pretty much any source going as long as they were a tissue match, especially as it allowed me to use the line that beggars can in fact be choosers (quite proud of that one), so what was different about this set of lungs that merited such a change in protocol? If they had a set of lungs they thought were a match and I had already consented then I should already be in an ambulance on my way down in readiness for the op. Well I have to say that Kirstie really sounded out of her comfort zone and it would soon become obvious why. In her 11 years of doing this sort of thing this was the first time she had ever encountered such an ethical issue.

I won't keep you in suspense any longer. The lungs themselves weren't in great nick as the donor had been an asthmatic who had smoked forty a day and there were signs that there may even be lung disease but, as I've already said, I had pretty much signed off on not being bothered about that as they would still be markedly better than the piece of shit pair of lungs I'm currently hauling around. No, the critical area was the other part of the donor's life that Kirstie could tell me about. She (yes it can be a she) had a rather rich and varied sex life that put her at high risk of certain sexually transmitted diseases. I'm not going to, and please do excuse the tortured pun, beat about the bush here but everything about her history screamed sex worker to me. Now those of you who are fast at thinking might be a few steps ahead of others but some might not have picked up on this so I'll spell it out - there is a chance that the donor could be HIV positive. 

They had already performed a test which came back negative but from my knowledge of testing for HIV that doesn't mean much as it can take about four months to get an absolute all clear. You see the tests for viruses are dependent on whether you have antibodies for a particular virus, they don't look for the virus itself, and when you consider that HIV actually hides within the immune system itself it just adds to the confusion. So, no matter how unlikely, I could theoretically be leaving myself open to HIV if I accepted these lungs, and if it panned out that I was that would kill me. No messing.

It took me half a second to say "I don't care, let's go ahead with it anyway". Now Kirstie, to her immense credit, talked me through it all and got me to explain it back to her to make sure I really did know what I was signing up for but I told her "I'm aware of the risk and still want to go ahead." A series of phone calls back and forth over the next half hour (including one to my wee sister to keep her in the loop as she's my planned partner for when this is going ahead) ensued and I got my stuff together in preparation for the ambulance that would take me down arriving.

Now, fate stepped in. During one of these calls Kirstie noticed an issue with the antibodies in my blood (that I only just supplied them with last week fortuitously) and sought clarification from the tissue typing experts. When they're doing transplants they don't want any more than two matches of antibodies maximum and I had five. Fans of maths can probably work out that this put the entire thing off as there's no way I'd cope with lungs like that without rejecting them almost immediately. So this was my first false alarm, I wasn't to get the transplant tonight after all.

Now my mind set to wondering about a few things. 

Was I upset that I wasn't to get the transplant? 

A little yes but not as much as I expected to be. 

Was this down to relief that I had dodged a bullet with the HIV issue?

Almost certainly.

Was I really so fucking reckless as to put my life on the line like that just because I'm bored?

Yes, it seems I was. .

I like to think now that I've had a few hours digesting all of this that I would have pulled out at some point but when I think of how crystal clear my thoughts were when I was talking it through with Kirstie I honestly can't be sure I would have done. I really think I might have gone ahead with it anyway and let the dice fall as they may. That thought frightens me now.

I don't have a bad life, not by any stretch. I even have my sister's wedding to look forward to on Friday. When talking to her about potentially missing it she said it wouldn't matter as it would be the best present she could hope for. 

I am however growing increasingly frustrated at my inability to join in with what people would call a normal life. I can feel in myself that I'm getting weaker and this thought pervades my thinking. How much longer will I be stable? Nobody can answer that as neither my haematology doctors or the transplant team have seen anything really akin to me before. I never wished for life to be boring but I didn't want it to be quite as special as it's turned out. As the old Chinese proverb/insult goes "May you live in interesting times". Well this has been more interesting than I ever bargained for. So is this why I was so willing to go ahead with something so downright dangerous? Fear that I might not make it through the winter months unscathed and not get another chance like this again? Probably.

Kirstie got the final word in by telling me she hopes for a much more viable set of lungs to become available for me after all I've been through. She says I deserve them. In my darker moments where I genuinely can't see positively I hope for some poor, unwitting twenty year old to wrap their car around a tree. I'm not proud of thinking things like that. All I ask of you, dear reader, is that you understand the desperation that would make someone think something as heinous as that and relate it to the desperation required to think that potentially HIV infected lungs are a good idea.

This crystal ball ain't so crystal clear

So I have not long returned from my monthly visit to the Beatson where I had a nice wee chat with my consultant about how happy they are with how I'm getting on in staying relatively infection free and with a stable weight meaning they only need to see me every two months at the clinic (where all the people with bugs are in fact) and in the intervening month just to go straight to the treatment room for my immune system boost of immunoglobulins. This suits me just fine as, to be honest, there's not much going on that I need to report to the doctors for at this point in time. From their point of view the less they see of me the better as it means I'm not ill. It's very much a state of limbo waiting for the call to come for the transplant and you can almost feel it from the haematology team that they're desperate for things to get moving on that front too as I am ploughing a bit of a new furrow here. They've never had a patient like me before so not only do they want it for my sake, there's a lot of clinical information they can glean from me whenever it happens.

I'm in a kind of self imposed exile at the moment where my friends are concerned as I fear that they may well be unwittingly carrying bugs and with my baby sister's wedding coming at the end of next week I want to limit the chances of me catching anything to as low as possible. Whilst I have my own kilt and full highland regalia I chose to go with what the team of participants are wearing so I went to the shop to get measured for the whole kilt and caboodle last week, which was a remarkably straightforward procedure. I haven't worn my own kilt in a few years and I couldn't quite remember how high it sits on the waist so was concerned that it might sit right on the site of the PEG tube into my stomach. No such worries though as there's a few inches of clearance. As it's a hire kilt though I'll make extra sure that the site of the tube doesn't leak at all, which it can sometimes (albeit occasionally) do.

Apart from that there isn't really a whole lot to report except for the fact that my two closest friends came to see me in August. Owen was only here for a long weekend so I only saw him for a day but Dave was back for pretty much the whole of August so I saw him at least twice a week. It was great catching up with them both. When Owen was here we had a chat about his dissertation for his studies in the field of film and television editing, which was a genuinely interesting read. I've counted them up now and 12 different people have given me dissertations to proof read for them on subjects as diverse as model fire development to philosophy. I'm incredibly pedantic about grammar so I'm a pretty decent set of eyes to go over things and to make sure what they're saying actually makes sense even if, like in most cases, I'm a total stranger to the subject. As well as the dissertations I've done I was often the go to guy in my research group to do the same thing for our end of year reports although that was more due to the fact that most of those were written in the respective author's second language. There's something about your own work that blinds you to the faults in it because it makes sense in your own head, so proof reading is very important indeed. It fills me with quite a bit of pride that, even with a slightly fuzzy brain, people still trust that I can still go through a document and pick out the slight flaws in it and help them out.

I need to get onto some more people and remind them that I'm here and looking desperately for fresh company as, like I've said on here many times before, real life just gets in the way of people coming to visit. While I've not been short of company, I would like some fresh faces and new chat. When I talked to Dave about how long it had been since assorted people had been to visit he was positively apoplectic. I don't have the energy for that level of anger about it but he is right - some people really do just need to try a bit harder to come and visit. The thing is, they know it too because whenever they do come they always part by saying it won't be so long until the next time. I tell them never to say that if their actions can't follow the words.

Overheard at the Beatson

At the clinic and in the treatment room at the Beatson Oncology Centre there is a certain camaraderie between the patients where old treatment stories are swapped, especially with regard to how long it had been since their diagnosis. The terminology is always the same with people saying 'I've got x years'. In the treatment room in particular you can strike up a good rapport with the patients that you see regularly and reassure each other that whatever they're going through is, for want of a better phrase, normal. That was put to one side on my last visit when I overheard a pair of older fellows chatting away (one had 5 years, the other 3) and one started talking about something that even I at nearly 13 years had never heard of except myself. 

The guy with 3 years was talking about the time he fired a nail through one of his fingers with a nail gun. Now if you had asked me to draw a Venn diagram of people that have done that and also had a bone marrow transplant it would have involved two massive circles overlapping at one tiny point marking me. Alone. Now this guy was a bit different from me in that he was using smooth nails so got a pair of pliers to pull his nail out, leaving only the tiny sliver of metal that joins the nails together in his finger. Apparently after his chemotherapy sessions the little sliver eked its way out of his finger after having lay there for years. It apparently just poked through his skin and then just fell onto the floor with a clink.

Now when I did it I nailed two fingers together in the now almost universal signal for 'fuck off' (or if you're of a certain generation Churchill's victory sign) but I had used barbed nails - the barbs are designed to make sure you can't pull the nail out - and I, being hard as, well nails, decided to pull it out with my teeth. I soon found out that it wasn't for shifting and, more than that, it was rubbing against the bone in my finger which was very sore indeed. When I got to the hospital the doctor treating me so was so thrilled with the X-Ray that he got an extra copy for his own file of interesting cases and took a photo of it before the first attempts to remove it was made. It had to be cut at the top and dragged through rather than out backwards. An incision into the second finger allowed it to be pulled back out of that one. If you're wondering at this point just how you put a nail through your finger in the first place in both cases it was a knot in a piece of wood that the nail bounced against and ricocheted away and into (and in my case through two) fingers. I never got the chance to speak to the man directly as he got his blood results and allowed to go home before I could interject so I never got to ask him if he had ever had an altercation with a circular saw as well. In the same job at the timber yard where I nailed the fingers together I also cut the top off my right thumb with a circular saw. I am immensely proud of the fact that I finished my shift and cycled the seven miles home before my mother demanded I go to the hospital to get it seen to. the thumb got dressed and eventually had to be cauterised after it got infected. I also broke 3 metatarsals in my right foot in my time there (before David Beckham made them famous). It was a happy day when I got moved in to the office at the timber yard. 

Anyway, it's a weird time as not very much is happening in my own life. There are things that concern me going on in some of my friends lives and I'd love to try and crystallise my thoughts on those matters by trying to put them into words here but that would be a terrible breach of trust so I'll keep my own counsel for once.

What I can tell you is a sweet wee story from my Sunday just past. I've spoken before about how I can't clear the mucous from my lungs that normal people can get rid of with an ordinary cough, so for weeks it can build up and leads to a constriction in my windpipe until it eventually loosens itself and it moves and I cough up a large lump and can breathe a bit better again. Now on Sunday one of my three nieces Chloe (3 years old) was sitting talking to me when all of a sudden a plug that had been building moved but I couldn't cough it up. It got stuck in my throat and I was choking and I had to make the (really disgusting) decision to swallow it back rather than asphxyiate. I was genuinely in a bad way but she sat patiently until I got my breath back. Just then her brother Ewan who is four and a half (half years very important at that age) years her senior came in the room where he was given short shrift by Chloe who proclaimed "Uncle Paul's sick Ewan, go away". So she made sure I was ok before going downstairs and asking her granny, who was making me a coffee "Is that for Uncle Paul, he's feeling sick?". So I suspect there might well be another nurse in this next generation of the family. She just sat there unflustered and then when I had my coffee she helped me count out my morning's medication. Bless her, it didn't half make something a bit scary pass without freaking me out.

I belong anywhere but inbetween

Often the days segue effortlessly into one another with nothing to denote their passing but the sport I'm watching on any given day. Then you get periods where lots of things are going on. Mostly I hear very little from the transplant team in Newcastle but, like corporation buses, when you do hear from them you do so in little clusters. And so it was last week when I got a phone call from them asking to get a blood sample taken to check for any changes in the antibodies in my blood. This is routine so I was expecting it but what I wasn't expecting was the chat with the transplant co-ordinator Kirstie. We have a great relationship so she was asking how I'm coping with the wait and if I'm staying infection free (the main point really) and she then told me that they're getting plenty of offers of lungs that would have suited me in tissue and blood type wise but were the wrong size and shape for my chest cavity. Now back up a bit here, shape? I had always known that as well as tissue and blood type that lung size is important because the new ones have to fit in the gap that the old ones left but I also know that, even though I'm a short arse, I have a chest cavity and lungs the size of an average sized man. I never knew that lung shape deviated so much for it to be an issue but when you stop and think about it logically then of course it makes a difference. It was just a bit of a shock to hear it said aloud.

Still the main point is that even though these lungs weren't suitable for me, Kirstie is as confident as you can be about such things that it is simply a matter of time before they get a full match for me and that the lungs will be viable. While I don't have quite the same level of peril that a Cystic Fibrosis patient has in this situation of lungs that are deteriorating rapidly I do still have some deterioration, albeit mild, so I should be able to last as long as it takes to find a match without any dramas.

The other thing the team were in touch about was the clinical trial that I'm on. I'll briefly go over it for those who have forgotten about it. The trial is on a process called Ex-vivo Lung Perfusion where they take harvested lungs and, using a modified heart-lung bypass machine flood the lungs with oxygen and electrolyte solutions to not only identify more clearly which lungs are actually genuinely viable, but to increase the numbers of them which are good for transplant. Lungs are notoriously difficult to gauge and so the number of them that make it through from harvest to transplant was, up until this trial started, a paltry 20%. So only 1 in 5 were of use. With the EvLP technique that number is now approaching 60%, trebling the number of lungs that can be used. This increases everybody's chances of a match but, perhaps more importantly, gives the doctors a much better understanding of what constitutes a viable set of lungs in the first place. Now the team behind the trial were in contact with new consent forms for me to sign as the trial, which is now a worldwide team effort, has changed in such ways that they legally need me to sign off as still being willing to participate. The news that instead of using the modified bypass machine a bespoke instrument is now being used for the procedure I see as a great leap forward and can find no reason at all to not remain on the list. I might get a set of lungs that's been through it and I might get a conventional set, I don't care really, except the science nerd in me wants to have been part of something groundbreaking. A particularly idiotic thought bearing in mind just how amazing simply having a conventional transplant really is if you stop and think of the logistics of it all.

So there we are, things are looking good and at a year past my being placed on the transplant list I'm still well within the average time it takes to reach transplant so I'm relatively happy. I'd be happier if I could get out more but that hasn't been an issue of late as lots of people have come to see me. The main one being my best friend Dave, who currently lives in America. He's been all over the place for the last 6 or 7 years so when he is home he does seem to spend a lot of time here. In his week and a half at home I had three sessions; two of about four hours with other friends present and one seven hour session just us watching the tennis. This harked back to my time post bone marrow transplant when Dave and another mate Owen would give up their Friday nights out in town to come and sit with me, and they'd get drunk and eat Haribo sweets while we watched the wrestling and they eventually fell asleep sometime in the small hours before getting poured into a taxi home. Dave worked his way through 11 bottles of beer and a bottle of wine (and a bag of Haribo sweets) during those seven hours for which I can only praise him. He's a machine - he was getting through a bottle of beer nearly every other game at one point it was so tense. It was the Murray - Verdasco match where Murray came from two sets down to win so it was perhaps understandable.

So he's away back again but he's back in August to deal with selling his flat in Glasgow and it'll be great to see him again. I really do miss him terribly. In reality him and Owen have always been the two friends who would visit the most often as well as rallying others to visit too and now they've gone and moved to different countries like the self centred bastards they are. 

Dave's got all sorts of plans for the two of us once I'm well enough to execute them. I think thoughts like that keep him going to be honest so I'm never going to disabuse him of the notion that I'll be in anything other than full health again post transplant. He deserves the hope.