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.