Hindsight's always 20-20

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

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

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

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

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

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

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

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

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

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

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

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

I like it that way; but then again maybe

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

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

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

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

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

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

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

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

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

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

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