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.