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.

Seems like there's a hole in my dreams

Being the younger sibling in a shared room is a fairly thankless affair. His mess is somehow yours as well and nothing in the room actually belongs to you (it's his h-fi, his telly etc) because there's no point in buying two. Just once in a while however being the younger of two brothers sharing a room is a godsend. He buys magazines that you wouldn't normally pick up and buys albums from bands that you wouldn't normally hear from. Our Mark is much more of a metal head than I am but I got influenced towards that type of music for most of my formative years and I still love it. He's no slave to a particular style though which is one of his greatest credits - he will genuinely listen to most things and give an honest appraisal of it. So it was in the Spring of 1989 when he picked up an album that changed the music that I would listen to forever. Mark liked it enough to play it a fair amount but whenever he was out I played it all the time on top of that. The album was the first, epononymously titled, effort from The Stone Roses and it changed my musical tastes completely.

It was the summer between primary school and secondary school for me and everything in my life was changing. The world seemed to get much bigger and I had recently found that I had a voice and was willing to use it. People who know me now will find this hard to believe but at primary school I was an incredibly introverted, bookish type who just kind of got on with things quietly and effectively stayed out of trouble. When I started secondary I saw it as an opportunity to express myself a bit further and I had the perfect tool for it, the Sony Walkman. Armed with an actual bought copy of The Stone Roses I set about getting people with such previously diverse tastes as Irish republican music to outright cheesy pop (you know who you are owners of Jason Donovan and Bros albums) to listen to this new thing and see what they made of it in an attempt to be cool. That cassette got passed around like a prison porn mag. Copies were made and even copies of copies were made. It, in what advertisers these days would no doubt say, went viral. Now I'm not claiming to be the only one who was responsible for this. There were a few others that I could name who were in the same position as me with siblings who had introduced them to it and they, like me were disseminating the album to our year group. There were even some cooler kids who had discovered them off their own back doing the same, albeit with a more detached attitude. 

Anyway, it was out there and gradually it became the most important piece of music to listen to and the hunt was on for other stuff by them. They had released a few singles before the album that didn't fare all that well but are now regarded as classic tracks by fans (my first ever snog for what it's worth was with a girl with an Elephant Stone t-shirt on at the St Lucy's youth club disco) and then copies of live gigs were to follow.

I was too young to go and see them at Glasgow Green in 1990 being only twelve and all. By that time, as often happens, the music becomes entangled with a fashion and fans of the Stone Roses (and the Happy Mondays and many other Madchester oriented bands) developed a style referred to as 'baggy'. You would have your flared jeans and either a band t-shirt or a Joe Bloggs top to be right on top of things fashion wise. They were a band that also united fans of rock music and dance music, which is an incredibly tight balancing act to pull off. It is still the most played album I have in my collection and one of only 3 that I always, and I mean always, play from start through to the finish (The Bends by Radiohead and Funeral by Arcade Fire are the others since you ask). The bass build up to the start of I Wanna be Adored through to the quite frankly mental instrumental at the end of I am the Resurrection just have to be listened to all the way through.

Years and legal wrangles later and eventually we got a second album but I didn't get to see them then either and pretty soon after they split up. Missed my chance, and with the way they were reportedly talking about each other, it looked like that chance was gone for good.

Last year though they reformed and were doing gigs in Heaton Park in Manchester. I was gutted. There was no way I could get to that so I watched as my friends from school and my grown up friends all trooped down and had the most amazing nostalgic experience. Then they announced they were taking it round the country and one of the gigs was to be a reprise of their 1990 Glasgow Green event. This time I was lucky enough thanks to a friend who was lucky enough to get through to the ticket line. I could manage that in the wheelchair and with an oxygen cylinder no problem. 

I'm not so naive as to not realise that this comeback is probably mostly for the sake of money but this band were such an integral part of my youth that I simply don't care. The fact Primal Scream were one of the support acts just made it all the better as their album Screamadelica was another 'must have' back then.

Saturday was quite simply breathtaking. It was everything I hoped for and more and considering I was stone cold sober for it I have perfect recall of it all. It would be churlish to sit and pick through the set list because it is truly amazing that for a band to have only two albums from two decades ago to sound as fresh as they ever did and barely have a lull in their set. It was just relentless genius from incredibly talented musicians.

One slight grievance was missing out on a chance to speak to an old school friend who spotted me getting wheeled in but she was in the queue for the ladies toilets which were 20 people deep so I completely understand her wanting to protect her position at the front of the queue.

On the topic of me getting wheeled about I have now simply given in with regard to being huffy about it. I'll let anyone push me now without getting all precious and will even smile back at the patronising smiles that come my way from well intentioned but still patronising individuals. So Tim and Claire, my friends for this adventure, took turns pushing. Tim was the much better driver - you need a certain authority to barge your way through a crowd and Claire is quite simply too tentative for that sort of thing. We got to our raised stage with the other 'differently abled' folks and as only one helper is allowed in Claire came in with me and Tim perched himself on the other side of the barrier in front of us and Claire could go and talk to him from time to time. He was making plenty of friends anyway, not least from people offering to sell drugs to him. On the topic of drugs I took plenty pain killers and diazepam to relax my muscles as the chair isn't designed for sitting in for that amount of time so I went well prepared.

As I said the set list was tremendous with probably the best start to any gig I've ever been to. Lead singer Ian Brown, referencing the first Glasgow Green gig commented about having been here before and then the band launched into I Wanna be Adored. That was it, we were off.

The conclusion with the full (and then some) I am the Resurrection was almost like a religious experience for me and then the band came to the front of the stage declaring that the gig was 'The best band in the world in the 2nd best city in the world'. High praise indeed from these proud Mancunians. When I hear that sort of thing at gigs I always wonder how sincere it is and whether they say that sort of thing every night regardless of where they are but something about it rang true. The bassist who said it played for Primal Scream in between stints with the Stone Roses so I believe him sincerely and even Ian Brown who famously doesn't say much on stage was positively chatty between songs. They were clearly an act at the top of their game and really enjoying themselves with it.

Now what happened after the gig was going directly from the sublime to the ridiculous. Two taxi companies accepted our booking and then just plain didn't turn up despite being informed that I was in a wheelchair and with an oxygen cylinder rapidly depleting. So Tim and Claire took turns in pushing me up to the Royal Infirmary (all uphill) where they had oxygen for me if mine were to run out but our third attempt at a taxi (a Cumbernauld firm) came within 25 minutes and I got home on the very last fumes from the oxygen cylinder. Tragedy averted, but only by the heroic efforts of two friends. I had been out for 8 hours and was dead on my feet.

I have since slept for nearly all of Sunday and large portions of Monday and Tuesday due to the overwhelming fatigue from the effort of going out for that long so I've decided that, while I'll still go out from time to time, it won't be to anything as grand as that until I get my new breathing gear sorted. It was a hell of show to bow out on.

The future teaches you to be alone

I am really frustrated with myself today.

Yesterday I was meant to go to a party at a friend's house and I didn't. I had every intention of going and had been really looking forward to it all week, even making sure the lift to her flat was working ahead of going. That was before I had my, now customary, mid afternoon nap. I woke up really breathless (even more so than normal - my oxygen saturation was 85%) and felt generally a bit rubbish so decided that it was probably for the best if I didn't push things too hard by going through the exertions of getting showered and dressed and going into Glasgow and instead opt for a night just staying in my room watching films.

Now that might seem like a perfectly sensible response to my condition but on reflection this morning I wonder if I was just too scared to push myself. You see the fact I couldn't breathe so well after my nap isn't uncommon. Simply lying down leads to your lungs compressing, and in my case sticking together a bit, so I could fully expect my oxygen sats to be lower than they usually are. They recover over time and I start to feel normal again a wee while after. I did still feel pretty bad but I just can't shake the fact that I should be pushing myself a little bit for as long as I possibly can because not doing things (as per my last post) simply leads to not being able to do do things. I also wonder if the fact it was going to be a night with a lot of strangers in a room with only a few friends affected my decision as having to explain my situation to people has become an incredibly boring aspect of my life now. I'm not sure really but today I really feel like I let myself down by not waiting a while and maybe turning my oxygen up for a while to see if I could recover to go, although if I did turn it up the cylinder wouldn't last as long so it would have meant spending only a short time at the party anyway. I don't really know though because I never tried and that's what really bothers me.

I've got tickets to see The Stone Roses in a fortnight and this is a concert I've been waiting 20 years to see, so I'm not even going to tempt fate and will avoid having my afternoon nap and will take all the painkillers and other drugs I need to make the experience as comfortable as I can. If I can take anything from my failure to push myself last night it's that doing something that you're scared to do is a good way to remind you that you're actually living and not just existing.

I'm just tired and bored with myself

After my last post a few people got in touch and congratulated me on my honesty. Personally speaking I don't think I was any more honest than any other post I have made, just that I let people in a little more on how hard it's actually been for me while my body slowly breaks down. So maybe I have been dishonest by virtue of the omission of certain things. This has always been my way though; I always filter out news from my assorted consultations and tell people what I think they need to know. This differs for everyone as some can handle all the gory details whilst others just want a broader picture, all of which are fine. I'm going to be a bit more honest today again though and talk about my last trip to the Beatson to see my main consultant. I'll get to that later.

Today is Cinco de Mayo, a celebration of something or other in the Spanish speaking world that I don't know anything about. For me the date holds great significance though as it is the day that I walked into a hospital in Liverpool complaining of feeling not quite right. 4 years later and everything has changed. Trying to take stock of just how much it has changed is enough to make your head spin so I'm not going to revel in that too much, except to take note of the fact that 4 years is a sizeable chink out of anybody's life and that is fundamentally quite depressing. What a waste. I had so much to offer at that time as a teacher and lecturer at the local college and I've since spent the bulk of my time staring at the same four walls.

Anyway, on to my consultation with Grant, one of the consultants who's been with me for the 12 years or so since my bone marrow transplant. I had a talk with him about how even though I have put on a healthy amount of weight and am infection free I still feel that I getting weaker on the respiratory front. I feel like over these four years my breathing has got steadily worse and it's an irreversible problem so I feel weaker. He put his hands up and said 'We all know that but we're doing everything we can to, if not stop, slow down the breakdown of your lungs'. Unfortunately any damage from any tiny infection just leads to a decrease in my lung function because my body can't repair itself correctly so gradually over the four years my breathing has got a bit weaker. We then got on to talking about the permanent pain in my muscles and joints. This is actually related to my poor lung function because, and again I quote Grant 'The less you do, the less you can do'. Now while that sounds like a rebuke it isn't, it was merely an acknowledgement that I can't do the exercise to improve my muscle form simply because the flip side of what he said is also true, the less you can do, the less you do. This leads to a vicious circle scenario where you can't exercise so you lose muscle and because you lose muscle you can't exercise. This is where I find myself and it's all down to my lungs not working. The less they do, the less they can do.

I also had a chat with him about the fact that like a baby or an old man, I seem to need a mid afternoon nap every single day now and he simply said that is just another thing I'll have to deal with. My body is basically shutting down because it needs the rest so I've to take it wherever I can get it and not to worry about it.

Now is where the honesty comes in. I am in pretty much constant pain because of the muscle wastage. It has led to pain not only in the muscles but also in the joints as some joints (the patella for example) need muscle either side of them to stop bone grinding against bone or cartilage. I take painkillers and muscle relaxants to help but they don't totally eradicate the pain and I often find myself counting down the minutes till I can take another dose to ease the pain and discomfort. There is of course the option of taking stronger pain medication but I believe my brain is in enough of a state of fuzziness as it is without adding to it with serious pain medication so I have to just grin and bear it with the pain. I thought it was about time I shared it with you that I am actually in pain as well as struggling to breathe. For some time I've also planned for when people are coming to visit so I take a dose of painkillers just before they arrive and they don't see how much discomfort I can actually be in. I always want people to see me at the best I can possibly put forward partly due to my own vanity, but it's not just that. It's really stupid I know but I always try to make visits from people as mildly traumatic as is possible for their sake. I know deep down that people know my health is in a terribly perilous state so this facade is probably unnecessary for them but I'll keep doing it because it makes me feel more comfortable both physically and mentally. It's good to have my mental faculties about me when people visit, although I do find myself apologising a lot as sometimes my mind can just go blank and I'll totally lose my point, sometimes midway through a sentence. If these blog posts come across as eloquent at all it's because I've taken very great care over writing them and have gone over them a lot before hitting the publish button. I'm nowhere near as eloquent in a normal conversation I have to admit. 

On the topic of this blog, it has just had its 10,000th view which is pretty mindblowing. That's a lot of people reading my musings. If anyone has taken anything at all from it then I would be very pleased indeed but like I say at the top it's primarily for me to ramble on and it's been great for that. Here's to another 10,000.

I get slandered, libeled....

The head coach of UK cycling Dave Brailsford has a central dogma to his training methodology. To improve as an athlete in your given discipline there should be an aggregation of marginal gains. That is to say if you have a natural talent then to optimise it you don't need to radically change anything, instead you take each variable and optimise that and they will add up to a marked improvement overall. You might wonder why I mention this in relation to myself but it is because if you take that central dogma to be true then you might be inclined to say that the reverse is true as well. To wit, no great big thing need necessarily go wrong for there to be a marked decrease in ability, just lots and lots of small things. I hope he would spare me the tortured paraphrasing but I'm calling it my degradation and small pains. 

In a couple of weeks it will have been four years since this journey of mine towards transplant began and while there have been events of varying degrees of seriousness, it is the small everyday breakdown of my abilities that is getting to me. A couple of years ago I found it markedly easier to get out and about so I have to acknowledge that there has indeed been some decrease in my state of health. That said, every visitor I get in tells me I look healthier and they're kind of right and that's down to staying infection free and keeping weight on. I look better but I don't necessarily feel it. I feel weak and that is down to muscles just wasting away. That's the degradation. The small pains have the same source - my muscles and bones ache almost constantly and whilst medication does give me temporary respite I don't want to up the doses of the medications any higher than they already are.

My year breaks down into definable blocks. Aside from the weekly sports I watch I can basically see where I am in the progress of the year by what sporting tournament I'm watching at any given time. Last week it was the Augusta Masters, this week (and the week and a half after) it's the World Snooker Championships. After that it's the French Open Tennis and the assorted football cup finals before we reach into the summer and we have Wimbledon and the Tour de France and on and on it goes. It is one of the few benefits of having all this time off and a low attention span. Sport is something that I can just passively absorb. And I do. Lots of it.

Man! I Feel Like a Woman

I had two appointments this past week at the hospital, one being heart and one for lungs. The heart one was to check lipoproteins (cholesterol and triglycerides). Since I went on the liquid fat diet my cholesterol level leapt up to over 8 so has to be controlled through the use of a statin drug, which is working very effectively. I was waiting an age in the reception area because the consultant wanted to see me personally. When I was last there we talked about my family's rather colourful cardiac history with the previous generation having had assorted heart attacks and triple and quadruple bypasses and the likes, so we were keen to see if there is a genetic predisposition in the family towards cardiac problems. The genetic marker that can tell you about this predisposition is only found in men so we took a blood sample and sent it away for the test. If you have spotted a flaw in this you're a better person than either myself or the doc. It seems he got a rather sniffy letter back from the testing facility telling him he must have mixed up a blood sample as they were unable to test the blood as it was XX rather than XY. In other words they couldn't test it because it was female blood, which they assumed had just been mixed up rather than the actual reason that I do in fact have female blood. After my bone marrow transplant I have my sister's blood. Why we never thought of this I don't know but it gave us a right laugh. So we don't know if there is a genetic predisposition to heart problems and can't find out unless my brother gets a blood test and the chances of that are probably slim. My big bro is not particularly fond of needles. And anyway as long as we control my cholesterol level while I'm on a deliberately fatty diet and monitor it when I get back to a normal one then we shouldn't have any problems in that area.

The other appointment was across the hallway the next day in respiratory and I have never had as quick an appointment at that clinic ever before. From arrival to leaving was 25 minutes. It was amazing. They just wanted to check that I was coping ok with the nebuliser and the flutter tool that I use to try and break up the nasty stuff in my lungs that normal people can deal with just with a strong breath in and out. I am getting on very well with it but I'll arrange to go and see the respiratory physio again in a few months to get some replacement kit for the nebuliser and to get it checked.

Not the most interesting of updates really but just wanted to keep people updated.

A life less ordinary

A journalist friend of mine once spoke of the way I write as being littered with tautologies and having spent time over the last week reading back over this blog from the beginning I can see his point. When I have made a point well that doesn't seem to be enough and I remake the same point over and over to hammer it home. There's even been one occasion where I talk about the film Contagion where basically the whole first paragraph of two posts are the exact same, even down to the analogy I make. It seems I've come up with the same point totally independently on two separate occasions because I certainly couldn't remember having made the first post. I put that down to my memory not being as good as it normally is and that my brain is a little bit fuzzy a lot of the time.

I made what I consider to be a positive step on Friday just past. I went out in the wheelchair. It was my mate Mikey's wedding reception and had it been any normal night out I would probably have given it a miss as I was feeling a bit wheezy all day but I simply had to get formal verification that Mikey had actually tied the knot, so I bit the bullet and went but took the chair and allowed myself to be pushed about in it. You may not remember but I've always felt really self conscious in the chair and didn't like the way people stare at you when you're in it but I rationalised it by the fact that if I can't get over that in a room full of most of my favourite people then it's my own problem not theirs. Everyone treated me in exactly the way I would expect of them and I had an absolutely wonderful time, although I only lasted 4 hours before a bit of pain and discomfort allied to the wheeziness led to me going home a little before the actual end of the night.

It was a slightly bittersweet affair for me as it did serve to remind me that time is marching on and more and more of my friends are getting married and having kids and I'm almost at risk of my life becoming infantilised. It's all down to mitigating circumstances clearly but listening to everyone else talking about their lives has brought into sharp focus that I am a 35 year old man that has never been married, doesn't have any kids, never had a mortgage, never had a car (and in fact can't even drive). To put it simply I haven't done most of the things that you would maybe consider the actions of a grown up. Some might say that it's actually impressive that I've managed this and they may well have a point too. I've never needed a car or a mortgage or any of the other trivial things that mark you out as a grown up (like a career for instance) so why they seem so interesting to me now is an utter mystery. It's probably only because I don't have them - the graass isn't always greener after all. To be honest though things have changed the longer I've been stranded at home with my life in limbo. I used to quote the line from the Aztec Camera song Oblivious 'They call us lonely when we're really just alone' to describe my situation but more and more lately I've found that I do actually feel a bit lonely even though I'm never short of people to talk to. I've stopped badgering people to visit and, with it being the winter months, many of them are staying well clear of me anyway for fear of infecting me with something one of their kids have brought home with them. Much though I miss the company I'm glad they're all aware enough of my situation to stay away in those circumstances.

I was hoping to go out last night too as lots of my friends that were home for the wedding are only back for the weekend but when I woke up yesterday I just knew I was going nowhere. I was just too exhausted. I'm still wheezy today but there's no actual sign of infection, I just seem to be going through a period where my wee lungs are struggling a bit.

In other news my middle sister is in hospital having had a non-functioning kidney removed on Tuesday and she is struggling a wee bit. She's got a post op infection so is generally just a bit miserable and the irony of a renal nurse having a non functioning kidney has led to a situation where she knows just a bit too much about what her situation is. Nurses and doctors really do make terrible patients. It looks like she'll be in hospital still for a good few days yet which will be no fun at all for her. I can't go in to visit for fear of catching something in the big long ward she's in but I spoke to her on the phone this morning and while she made little sense thanks to the pain meds she's on I'm glad I spoke to her.

15 minutes

So the interview I gave the lovely woman from STV news aired last week as part of the ITV From the Heart campaign. It being a section on the news I never really expected it to be more than a tiny wee section of the 45 minutes we had chatting. My part in the feature was to explain what it's like to be waiting for the phone call. Here, watch it for your self and make your own mind up

http://youtu.be/Xv_OWIhoLgs

Personally I'd have preferred it if we had longer so all the bits where I spoke about how important it is to let your family know your feelings about being an organ donor or where I talked about how I find things so much easier being the patient than I sometimes think my family find it because they can't always help were what got aired but those points were covered tremendously well elsewhere in the campaign. I can't really complain about my wee slot except now the viewers have a vision of me struggling to get showered that they could probably have done without. Having said that context is king and in the context of that wee segment what you didn't hear was me explaining why it is such a difficult process. I have to turn my oxygen up for a while pre shower to get ready for the exertion involved. I have to undress slowly because even that tires me out and I then have to just sit on the toilet seat with my head down at my knees gulping for breath. It's only when I feel fully ready that I swing myself round to my board across the bath and slowly proceed with cleaning myself and, not that you would know it from the video, that's when I usually shave. It is a long slow shower and the process of getting dried is no less strenuous than getting undressed is. The oxygen remains at a higher level than it normally would until I am fully dressed and breathing easy again. Everything is done slowly, that's why I said it's like a military operation. Everything is meticulously organised.

Now I don't tell you that because I want you to feel sorry for me. I want people to understand how difficult things are for me but I don't want pity. Sympathy yes, but pity no. I'm not sure I can adequately explain what I mean by that but there is a clear distinction in my head. Someone who pities you would (and do) patronise you in ways that they don't even understand they're actually doing but someone who sympathises simply says "That's a shite state of affairs" and gets on with talking to you as normal. I've spoken before about how grateful I was post bone marrow transplant to meet an old school friend's mum and for her to just ask straight out how things were going and not to talk to me in any way differently from how she normally would. That is sympathising but not pitying. I find it more difficult to describe the other way round but I know it when I meet it. I've seen it in the eyes of people I've met who ask about the nasal canula that supply me with oxygen and you can see the cogs turning in their head thinking "Poor bastard, I'm glad it's not me". And that I feel is probably the difference. Someone who sympathises with your plight does so from a place of caring for you, not from selfishly thinking that they're just glad it's not them. Aye, maybe that's it - with sympathy it's about you, with pity it's about them. That's not to say they're bad people - they're really not. I just don't need to be around them. Thankfully, due to the amazing friends I have, a rarely have to be.

Graffiti with punctuation

I watched the film Contagion a few nights ago. It's a very good and realistic film about what it would be like if there was a global pandemic of an unknown virus. It looks at the everyday stuff like how it would be passed on all the way up to governmental attempts to control it. In light of the fact I was one of the unfortunate souls who actually contracted swine flu in the last of the lower level one of these things I found it incredibly interesting just how much it reflected the response from the broader population about any of the last few of these things (SARS, avian flu, swine flu) but the bit that really got me was that in it there was a blogger who wrote about how some alternative therapy actually carried the cure. When talking to a scientist who is working on it, the scientist pithily remarks that "Blogging isn't writing, it's graffiti with punctuation.". Now this obviously borrows heavily from Truman Capote's famous line about Jack Kerouac's book On the Road. To whit, "That's not writing, it's typing." but it is still an incredibly important point. There is no need for a blogger to provide provenance for what they say as it's purely opinion based and not subject to the same scrutiny as 'print' journalism. The blogger in the film got better but whether it was based on the special, herbal cure he was promoting (and making money from ) or whether he was just one of those people who could just fight off the infection is never made clear but he, as a scientist would put it, regresses to the norm, so there's no way to know.

It's important to mention the media this week, seeing as I'm graduating from my position of graffiti artist to the relatively lofty heights of an interviewee on the Scottish National News with my opinions on transplants, notably what it's like to have one but even more so what it's like to be on the waiting list for one. I'm in a relatively small group of people who have had one and am in need of another so a person from NHSBT/got in touch to see if I would be interested in being one of their people all over the country taking part in a week long push to promote blood and organ donation in their regional news programmes. So I'll be on the STV news on Tuesday the 12th hopefully getting my point across without making too  much of a fool of myself. I know I'll cringe seeing and hearing myself on the telly but it really is important to highlight the need for more people to sign up for organ donation (and blood and bone marrow donation for that matter) but also to reinforce the point that everyone should let their family know what their feelings are on the subject. There are a lot of organs that never get harvested because, even though the person who has died wished for their organs to be used for donation, their family objects because they don't want that and they don't get used. I sympathise completely with any family's wishes on that front but are we really to take their opinion over that of the person who put themselves forward for donation in the first place? I'm not so sure. From a purely selfish point of view I would like us to adopt an opt out system where it is assumed that everyone that can be used as a donor will be unless there is an objection from the family. I feel in a very short time people would become used to this and it would rapidly become completely accepted as the norm so why don't we try it?

It will only be a couple of minutes on the news but it's an incredibly important message so if you're at all keen to see me in action tune into the STV news at 6 o'clock on Tuesday. For those outwith the STV region I'll try and get a youtube video of it up as soon as I can. I spoke with the lovely interviewer for about 45 minutes so all the very best to her in her attempts to edit it down to something useable.

It was actually my second interview last week as on Monday I had undergone a very similar interview about what it's like to be a patient waiting on the phone call from the transplant people. This time it was the team from the University of Newcastle who are carrying out the clinical trial study on Ex-Vivo Lung Perfusion, the procedure where they take previously unusable lungs and put them in a modified heart lung bypass machine and put them through a process with oxygen saturation and perfusion of solutions that make many more lungs viable for transplant. The Dr who interviewed me started by saying that it'll only take about half an hour of my time. Obviously not knowing me very well she was somewhat taken aback when we were still chatting nearly an hour later. Still, it's all useful information for the team who are using this cutting edge technology.

As I've said before I often get sought out for these sort of quality of life questionnaires as I tend to be a lot more expansive than the average patient. I've also given a couple of lectures to teams of docs and nurses which they've been incredibly positive about because it's far too easy for them to see their patients just as puzzles for them to solve so to engage with one as a real person who can actually teach them something is an important lesson for them. All too often I get used when I'm on the ward too as the registrars like to send the medical students in to me as they know I'll put them through their paces in a kind way. I get a hell of a buzz from it I have to admit. I suppose it appeals to the teacher in me.

The prospectoscope

If December was a great time to look back on what had been an 'interesting' year then January should allow me time to wistfully muse on what the year ahead has in store for me.

One thing utterly dominates obviously - whether I receive the call for the lung transplant. The average waiting time for this is between 12 and 18 months and I've already been waiting 6 so if the law of averages does its thing then it should in fact be this year that I get the call. This was the opinion of most of my friends I met throughout the holidays too and while that is borne out of hope rather than rational analysis the idea appeals to me. I don't want to go through another full year of waiting. I'm 35 now after all and I'd like to get back to something approaching a more normal life. I know that my life will never be 'normal' but something approaching it would be nice.

I got a little bit of an infection over Christmas but it seems that I can recover from such things much easier than any point in recent memory, which is great. If I could go through the whole year with only these mild infections I would be a very happy man indeed.

One new thing that has come up is that I responded to an appeal from the press office of the transplant authorities to send them your story of transplants. Having had one and being in a holding pattern for another I felt my story might be worth telling, so I sent a brief synopsis (not easy for me) to the press officer who has got back to me and said that they would love to use my story in some way, whether that be in the media raising awareness of transplant donor lists and all that encompasses, or working in unison with the Scottish Parliament to do the same. I'd be thrilled to get to do this although logistically I'd need help with the oxygen for whatever they may require me for. 

I've always been keen on sharing my experience, as this blog alone shows, but it's not the only way I use my experience to aid others. I've given lectures to medical staff before about what it's actually like to be in the patient's bed throughout the whole process of diagnosis to treatment to post treatment care with very enthusiastic responses. I also get used any time I'm a patient in the wards for some reason. Registrars are always keen to use me to help train the medical students as I am very relaxed with them and usually put them at ease. I can even prompt them in the right direction should the situation arise that they need a helping hand. Once, in Liverpool after the registrar in charge had half a dozen students go through their paces with me, one of them broke off after the session to have a much more informal chat about my history and what I was going through at the time as they had never seen anything like that before and it was refreshing to have someone so comfortable talking about what they had gone through in terms of medical procedures as much as what they went through emotionally. It turns out that as soon as something is over a lot of patients choose to forget as much as they can about the grim things they've endured. I'm not like that apparently. It seems I'm too interested in the whole process to forget anything really, even with my somewhat fuzzy brain.

I was thinking about my fuzzy brain the other day. Your brain uses 20% of the oxygen your body takes in just to keep going. Whilst I only have 16% of my lungs functioning fully I still manage to get over 90% oxygen into my bloodstream, but even then I feel that I'm not working at full capacity. Not even close. I've said before that my body is working in an oxygen debt situation not that much different from altitude sickness. In that situation the first thing that shuts down (to preserve oxygen for your brain) is your stomach which is why mountaineers are sick above a certain altitude with low oxygen. After that they start to feel disorientated and that I feel is what I suffer from. Of course I've been that way for three and a half years now and my body is so used to the oxygen debt that I'm no longer sick all the time but I can't get away from the fact that I feel confused some of the time and will often lose my stream of consciousness midway through a sentence. For someone who holds great stock in his ability to try and get a point across it's a truly awful affliction. There's nothing I can do about it till I get new breathing gear though so I try to not get too tetchy about it.

There was a program on BBC1 Scotland last night about what are referred to as orphan drugs, which are highly specialised drugs for very specific cases that have different guidelines for use (and therefore cost) than normal, everyday medications. One of those mentioned was Imatinib (or Gleevec) which is the drug of choice to treat CML, the form of Leukaemia I had. It essentially renders CML a condition that you just live your life with, constantly treating it as you go (like type I diabetes for instance). This is a real point of contention for me as I think drug companies should be searching for cures rather than making customers for life with their incredibly expensive products. It brought to mind a conversation I had with two of my sisters (both nurses) the night before about how much has been spent on keeping me alive so far. In all honesty if the transplant team in Newcastle had told me "Sorry, you've had enough spent on trying to keep you alive already" I honestly couldn't have argued against them. Thankfully for my sake that's not how they do it but I know that I've already been incredibly lucky to have had the treatments I've already gone through as they are mind bogglingly expensive. I'll never be able to pay it back in tax and national insurance in my lifetime but that's the greatest thing about this country, we have a cradle to grave health service that helps those the most in need. It's not perfect; far from it, but from this patient's point of view it is absolutely peerless.