Yes, I do feel better

They say that self praise is no praise at all and while I largely agree with that sentiment I'm going to indulge a bit in it just now because of something that's aired over the last few weeks on Channel 5. It was a show called The Gift of Life and was 3 hour long episodes set in and around the transplantation unit at the Freeman Hospital, Newcastle that I mentioned in my last post. I was filmed for it but my part wasn't used as they had other stories that they felt were more pertinent to to the tone of the overall show, which was fair enough.

You should still be able to find the shows on the Demand 5 website (here). I will warn you that they are full on tears and snotters affairs even for the medical staff involved. It really is a cruel speciality with which to be involved. It's also a pretty full on show with regards showing you the brutality of the operations themselves so I wouldn't recommend it to everyone.

You may ask where my pride comes in and it stems from this. It is as simple as my ability to not let the period of waiting for the transplant break me. In the show they talk gravely about having to wait in periods of months as being a massive deal, yet here I am well over three years into the waiting list and six years post immediate lung failure. Of course I have my moments, and we are all to bend a little if we are not to break, but I genuinely think I've done a wondrous job of keeping myself from going stark raving bonkers in this time. I know this mostly because people tell me so, often when they have just expressed their surprise at how long it has been. I've explained before about how time passes differently for real people compared to me. All my days are the same so a lot of time can pass without there being a marker to go down yet for people living a normal life there are all sorts of markers to suggest the passage of time so for them it feels somehow longer. Months mostly pass in a flurry for me. Thinking back on the notion of markers dictating just how fast life passes by I have found that the ageing of my nieces and nephews has been a good guide for me, especially the youngest one, who is only just shy of a year old. The differences in her from day to day give me a greater perception of time.

That said I have been trying to get out a lot more and was out last Monday night to tick off a box I've wanted dealt with for a long time. Those who know me at all know that my favourite song ever is called Yes by McAlmont & Butler. I have the poster for the single on my wall and it has been put on every mix tape and CD that I have ever made anybody. It's twenty years old now and still sounds as fresh as the day it was written. Even after thousands of listens it still fills me with unbridled joy to hear it. If you've never heard it here it is

They only sporadically get together as a duo but I love them and the last time they played in Glasgow I had the misfortune to be hospitalised just out of earshot of the gig venue. Anyway I finally went to see them on Monday night and it was every bit as good as I could have hoped. I even got a bit teary eyed as they finished with my favourite song.

The reason I can get out to these sort of things now is because in some ways I am actually relatively strong at the moment. I am the heaviest I've been without being on steroids and this, allied to the immunoglobulins I get once a month, seem to be doing a good job of staving off infections. That's not to say I'm not absolutely exhausted after these affairs (I can be pretty much broken for two days after) but that doesn't mean I shouldn't do them. For too long in these past few years I've erred too much on the side of caution and avoided things. I'm trying not to be so scared.

I justify that to myself because for the three years previous to that I really was very poorly indeed and often had to cancel things at little or no prior warning as I was just too weak at times. I was less than 50kg in weight and getting fed through a tube direct into my stomach for goodness sakes - it's no little wonder I wasn't all that comfortable going out and about. On that topic my transplant threshold is 54kg and I am currently 68 and I feel I have gone a bit too far. I am aiming for about 60-62 so I have enough that, should an infection hit me over the winter (almost inevitable), then I will still have plenty in reserve. I also can't go any higher without the need for a new wardrobe full of clothes.

This is one area where I'm not entirely content with the way things are. I can't control my weight it seems. I am going up and down dependent on whether or not I take a medication to help me gain it. Without it the weight seems to fall off too easily and with it it goes on a bit too easily too. Even messing around with the dose isn't helping - I'm on the lowest dose now and still gaining weight. I've always been very thin but proportionate to my frame and I'm not now and am very self conscious about it. I know I shouldn't be and it's not a big deal but I'm looking at someone else's face in the mirror and I'm fairly sure I don't like it. Only a month or so ago I had a visitor in saying I was looking the best I had in years (I would have been about 60kg then) but I just can't get the balance right. This is, of course, a vanity on my part but I can't help myself with it. The other thing bothering me is I appear to have what they call Roseacea on my face which manifests in angry, red patches. I've been using a cream to try and treat it but it's not changing anything yet. I've mentioned it to the bone marrow docs in case they thought it might be a manifestation of Graft vs Host Disease again but we're all comfortable that it's not that thankfully. I just look like a borderline alcoholic with prominent veins on my cheeks. Overall for someone with my ego it's infuriating. I'm genuinely much prettier than this.

On the subject of rejection, and getting us back to the Gift of Life shows, I know I'll be in immunosuppression for the rest of my life post transplant, yet somehow I never came to the conclusion that this is because my body will never accept the new lungs as mine. After all my new bone marrow finally accepted that my organs, internal and external, were my own after a few years battling. I came off immunosuppressants then after about 5 years. I guess I just never gave it too much thought but thinking about it now I know that things will never go back to normal for me. I'll never be able to teach at a school again - the risk of infection will just be too much. This doesn't rule out further education teaching but does limit my choices markedly. I think I always favoured further education anyway but it's the not having the choice that is infuriating.

So, all in all, things are positive but I'm thinking of calling my transplant co-ordinator to try and make sure I stay that way. I'm not beyond admitting I might need help and while I've done great to this point a little bit of help from people who know this stuff inside out might not be the worst idea ever.

Look around you all you see are sympathetic eyes

It's anniversary time again. Today marks the 15th anniversary of my diagnosis of Chronic Myeloid Leukaemia. That diagnosis, dependent on how early it is caught, gives a prognosis of about 4-5 years. The fact I'm here still typing away shows that, with the right treatment, you can beat that limit substantially. Regular readers will know that the aforementioned right treatment does come with costs though and I've been perhaps unfortunate on that front with rejection based issues but surely living a decade longer than you were expected to is considerable cause for celebration. I can say that even though much of that decade has seen me dangerously ill but it's still better than the alternative. 

In more up to date news tomorrow night there is a show airing on Channel 5 called the gift of life that centres on the transplant team (my team) at the Freeman Hospital, Newcastle. There are three hour long episodes which will go into far greater depth than any of the other shows that have aired recently on the topic have had the scope to do. Hundreds of hours of footage were filmed and so it has had to be edited down fiercely, which sadly means the afternoon they spent with me has fallen foul of the editors blade. I have to be honest and tell you that because it does have that greater scope it might not be the right show for everybody to watch. It will include graphic pictures of surgery and it will almost certainly have cases where patients don't make it. My main hope is that people take away something from the show about what it is like to be in a position like mine but it's not just about the patients. I want people to be able to see what the transplant team go through too.

I've said before that I often tailor my message to the person that is visiting based on what I think they can handle. This is based on years of seeing people struggle to come to terms with how delicately balanced my life is and whether it is worth it upsetting them more. It's a little bit of a patronising conceit but I don't always want to be the one consoling people when it is me that's actually poorly. At first I didn't mind it as I realise that I'm not the only person suffering under my condition but it wears you down after a while.

The thing that's happening the most at the moment isn't really consoling people though as nearly everyone is, for want of a better term, comfortable with my situation but it's much more like dealing with their frustration and anger that the whole process is taking so long. It seems I have to remind everyone of how the odds are stacked against me in the pursuit of a fresh set of breathing gear. They can understand the individual aspects of the difficulty involved in pairing off a patient with the right lungs but can't seem to handle the statistical analysis that reduces my chances when looking at them collectively. It is literally like looking at a lottery. Your chances diminish with each factor you have to take into account. I have to match ALL 5, and that is why I've had to wait over 3 years now.

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.

What did you learn from your time in the solitary cell of your mind?

A couple of weeks ago it passed the 6th anniversary of my falling rather dramatically ill with the fungal pneumonia that ultimately led to my complete respiratory breakdown. As is common, for me at least, when these sort of dates swoosh past I find myself musing about what has happened in that time. 

There have been some tremendous dramas. I'm thinking mostly of the times when I've really scared people, mostly but not exclusively my poor wee mammy and my younger sister who have witnessed the worst bits. Those were the couple of occasions where I collapsed at home and needed to get taken to hospital. Both these occasions were well after the pneumonia and even after the swine flu/viral meningitis period. Those times scared everyone plenty but I was still fairly strong when fighting those off. These collapsing incidents were when I was placed on a massive dose of steroids to hopefully shock my body into not attacking my lungs any more. They never worked, and you could in fact argue that they made things worse as they moved forward the time when I needed 24 hour oxygen therapy. The steroids had affected my diaphragm in some way and I was struggling to force air into my lungs.

The first time I collapsed I just felt so terribly weak and knew even on the walk to the bathroom that I wasn't going to make it and I collapsed on the tiles just at the door. My mum ran out her own room to find me completely sparkled on the floor. It was so upsetting for us both. The second time I collapsed was in its own ways quite impressive as I managed it from a sitting position. I knew I wasn't feeling right after another dose of steroids (these 'shock' doses were ten times the dose I had been on post Bone Marrow Transplant) and had phoned the hospital to say I was coming in as I couldn't breathe correctly. Before going in I wanted to have a shower though as the steam of a shower often helps me breathe a little better. I was sitting in the bath letting the shower run over me and all of a sudden I couldn't get any sort of breath at all. I managed to turn the shower off but I was still gasping and I could hear my mum and my sister on the stairs outside so I just battered on the side of the bath to get their attention. My sister ran in and got the towels and wrapped them round me and talked me into taking long, slow breaths till it passed and I could catch something resembling a breath again. I was absolutely fucking terrified. I figure that's what a panic attack must feel like. 

Both these instances were about the worst I've felt in these past six years as, if I'm entirely honest, I did wonder if I would ever recover from it, especially as I was frighteningly underweight at the time too. I was only 41kg, which is ridiculous and I was scared I didn't have great reserves of strength needed for the fight. 

When I let people know of my situation back then, and how grave it was, they all flocked to see me. I think the fact I was terrified had shone through in my correspondence with people as everyone was quite sombre when they came in. I really was in a very bad way. The first step to getting better and improving my chances of being put on to the donor list was taken then and the very next day we got the PEG tube fitted into my stomach so I could get fed even when I didn't particularly feel like eating. I'm genuinely not being dramatic when I say that little piece of plastic tubing saved my life. I couldn't have fought off another infection at that time so putting some weight on was absolutely the priority.

From that point it took another two years before I was heavy enough and strong enough to be considered for transplant. It took lots of serious investigation into all my internal organs  which were essential for making sure my health was otherwise good. Back then it was a busy time with lots of hospital trips to get assessed for one thing or another so I always felt like I was pushing towards something. It's actually the time since I made it on to the active transplant list that has been the more challenging as you wonder every single day whether this is going to be the day you are going to get the call.

These past few months have been hard on that front. I have been getting so frustrated that things aren't moving forward and it has definitely affected my mood. I think I may have a mild case of depression as I often feel completely apathetic to the notion of doing anything. And so days can go past without me doing anything of note at all, and then I give myself a hard time for not doing things, especially when I know I always feel better when I have done something, no matter how trivial. It's a shite state of affairs and no mistake but everyone I've told seems to have the same response. They have all said something along the lines of 'Of course you have, you wouldn't be human if you didn't have at least a little bit of it'. That makes me feel a little better.

When I think about my life as a grown up it does make me kind of sad at times though. When you consider the last fifteen years of my life I have been seriously ill for over eight of them. That's devastating but I console myself that I did a lot in the other years to make up for it. Hopefully a successful transplant will give me another serious run at a normal life. There's no reason it wouldn't but reading other patients' stories sometimes leads to worry about the post transplant life as some of them are still massively dependent on their doctors for everyday life. I have to factor in that these are almost all Cystic Fibrosis patients though and so are, in many ways, more complicated than my own story. 

All things considered I think I'm just about handling life on the transplant list well. I get plenty of positive comments to that end anyway and I trust the people that tell me so aren't just saying that as they're not the type to sugar coat things. I simply hope I won't have to cope with it all for much longer though.

These are the days of miracle and wonder

For reasons that will hopefully become obvious in time I have had reason recently to think back through the time I've spent as a chronically ill man and assess my psychological state at the various points along the way. While writing a blog does need a certain amount of retrospective navel gazing I don't think I've ever had to so intently analyse how well (or otherwise) I have reacted to the various things I've had to contend with in the intervening years.

The thing I had to address mostly was whether or not I'm bitter about the way things have panned out since my bone marrow transplant. That is to say, am I bitter about the fact that the treatments I had back then are pretty much directly responsible for the situation I find myself in now? I've addressed this before in my musings on here. I don't think I am bitter about the way things turned out because I feel we made the best decision with the best information we had at that time. That's the important thing. Of course I knew that there were possible complications to the course of treatment I opted for - remember I was getting radiotherapy that amounted to 105,000 chest x-rays so there was bound to be some tissue damage - but I reconciled that with the idea that this was the only way I could regard myself as cured. That was a massive point at the time. I could deal with the side effects later, I just wanted rid of the cancer. I considered myself incredibly fortunate that I lived in a time when something as dramatic as cancer of the blood could even be cured so I took the aggressive option.

All of which is terribly sensible and zen and that but it doesn't really answer the question. Am I bitter about the fact that I was the unlucky one that developed chronic Graft vs Host Disease after the transplant and am I bitter about the way it has dominated my life ever since?

Well that's another thing isn't it?

If I'm brutally honest with myself I probably am a bit. I do find myself looking at people who have lived a more conventional life with a certain amount of jealousy from time to time. There's no doubting I have had an incredibly interesting life but I could certainly have done with a few years more of the straightforward life before I succumbed to the lung problems. I think that's an important distinction to make. I don't feel I'm in any way bitter about the cancer. That's just a sad fact of life. I also don't think I'm really that bitter about the way things have panned out with the lung failure. My issue is with the time in between those massive events in my life. I REALLY wish I had more time in between to just live a normal life, undominated by the diseases that have punctuated my life as a grown up.

Part of this is because I can feel a bit lonely at times. Curiously this tends to happen when I am surrounded by people and not when I am alone in my room. I am a natural at spending time on my own it seems and that never really bothers me but when I'm in a large group of people it can really highlight the ways in which my life is limited by what I can't do. That can be kind of crushing.

Now I've been over this in my head a few times. I'd love there to be someone by my side for all of this, sharing the load somehow, but I also know that my nature dictates that I'd feel bad for them and try to protect them from the worst of it, as idiotic as that clearly is. I think I regard the times when I have had long term relationships as the times when I've been happiest in my life. I think having someone to put ahead of myself makes me a nicer person in some ways. That's why I wish the period between illnesses was longer. I needed that time to settle down with someone I feel. If I had gone into this illness with someone already by my side I think I wouldn't have been so full of the need to protect them the way I have with the few relationships I have had since then. I would have been more comfortable with the idea that they were capable of coping with it all. And here is the crux of my own idiocy - I assume that nobody can deal with all of this but if someone is inclined to go out with me in the first place they're almost certainly the sort of person who can deal with it. Why can I not just let them? I honestly don't know.

Away from all of self assessment I have been relatively well. The almost endless cycle of bugs that dominated the winter months seem to have passed and the last month or so has been as good as it really could be for the last wee while. I am enjoying doing a few things away from home under the notion of 'making hay while the sun shines'. I even went out to a concert a few weeks ago and it was one of the best gigs of my whole life - Paul Simon and Sting. I have always loved Paul Simon so was really looking forward to it and I thought I could tolerate Sting for one evening if I could see him. Paul Simon was tremendous, as expected, but I also really loved Sting. He was such a surprise.Of course I knew the songs but I had no idea he was such a good performer. I thoroughly enjoyed myself even though, thanks to the mental parking facilities, I made it home with an empty oxygen cylinder. It's no big deal really - I can go some time without it before anything really untoward happens but it doesn't half freak out those who are with me.

Immortality in culture

We are all of us going to have to deal with Cancer in our lives in one way or another. There are many ways of finding out about the subject at large and vast swathes of information on the net about the specifics of any given variety of it. What there is a marked lack of is something that actually tells you what it's like to be the patient.

I had my Bone Marrow Transplant in 2001 and you've read about a lot of it in the pages of this very journal, but at round about the same time as I was going through that the film maker Mike Nichols took a play by Margaret Edson and made a movie about the patient's eye view. It is called Wit and it stars Emma Thompson as an academic who is diagnosed with stage 4 Ovarian Cancer. As I think of myself as quite a clever sort of fellow (although a million miles below the towering intellect of the protagonist) I was really drawn into this film but I would implore that anyone who has to deal with this most pernicious of diseases to watch this film to gain a bit of an understanding of what someone goes through. I'm not going to pretend it isn't difficult viewing but I would honestly make absolutely everyone watch it.

It isn't available on DVD in region 2 annoyingly but it is available in full on YouTube, and you can find it by clicking here

Do it.

I always thought of you as my reward

It is unbelievable how much better I've felt over the past few weeks. Compared to the months (and months) before that I feel like an entirely new person. Such things are subjective right enough and I still get tired after exerting myself but the fact that I can actually do things that merit exertion is proof positive that things are so much better for me now.

With the notion of making hay while the sun shines in the back of my head I've been going out with friends, visiting others for dinner with their families and arranging for others to visit me here. I've also made it out for my newest niece's Christening and am recommencing my guitar lessons.

My only gripe about the day of the Christening is one that I may be repeating from before but it is just a sad fact of being in the chair. It's hard to just mingle at any event I'm at in the chair because I really am just tethered to the one spot and I have to rely on getting the attention of everyone I want to speak to and to get them to come over to me for a chat. I managed to get some time with pretty much everyone I wanted to but it would be so much easier if I could just get up and walk over to them and instigate a chat.

My abilities, or lack thereof, came to mind on Sunday just past when an old school friend came to visit for a while and she was getting me to explain just what my tolerance levels and thresholds are before I start struggling. She was also getting me to explain how it feels when I do start to struggle too, which was really nice in its own weird way because there are very few people who genuinely want to understand my situation over and above their own concept of breathlessness. It reminded me somewhat of back when I was first let out of hospital after the bone marrow transplant and I went to mass still completely bald and with a feeding tube up my nose. It was there that I bumped into this same friend's mum and dad and they were pretty much the same - they asked genuine questions about how I was getting on and how I was feeling. I can see where she gets her compassion from. I was also talking to her about how, even though it's nearly 6 years that have passed since I first walked into the hospital in Liverpool, that the time has passed quite swiftly in my head. I hadn't thought of it this way before but just through the passage of our conversation it occurred to me that this quick passing of time is actually down to the fact that my days are all fairly similar whereas normal people have many more individual events to punctuate their time and so can easily create a chronology of events when looking backwards. For me looking backwards my days of being in bed are only given individuality by what TV programme I'm obsessively watching at a given time and those days are punctuated by the odd important hospital visit.

I'm trying to get more people to visit just now and I'll be badgering some other friends to maybe take me out places as well seeing as we have a bit more daylight now and the weather isn't quite as awful as it has been. In retrospect I have to say this winter has been the toughest one on me in years. Like I said in previous posts it's been down to infections and meddling with medicine this year but I do worry about winter every year as there are just so many infections about that it terrifies me. Not just from the point of view that it's dangerous for me but that it would be horrific if they finally found a match for a new set of lungs and I couldn't receive them because of some poxy little infection.

The transplant team were in contact just over a week or so ago, which is a rare thing indeed. They normally only contact you if they have a potential match, but my co-ordinator was on to tell me that they had Channel 5 in the ward making a TV show about the trials and tribulations of a lung transplant and they were looking for a patient's view of proceedings and so, as happens when things like this arise, she instantly thought of me so I have to expect a phone call sometime soon from the producers of the show to see if I am indeed what they're looking for. I might not be simply because my case is so different from the norm for patients undergoing this surgery. Remember the patients in the same boat as me are mostly Cystic Fibrosis patients so it might come to pass that they want one of them to represent the patients, which would be fair enough.

That was the good part of the phone call. Sadly the co-ordinator told me how frustrated they've been getting trying to find a match for me. Now on the surface that sounds really good as they're always keeping me in mind but I found it a little upsetting. You see, it doesn't matter if you get close, you still can't get them. You'd be as well as not matching any of the variable factors than just missing out on one. It's just so frustrating to hear things like that. Having said that one of the great things about this search for new breathing gear for me is that no set arrives knowing what has come before so fer every set of lungs that is donated my chances of being a match are just the same as they always were, so it really is just a matter of staying healthy and eventually a match will be found.

Get sick, get well, hang around an ink well

So the last few times I've sat down to compose my thoughts it's been amidst a struggle to keep things together. On looking through the retrospectoscope it appears that I was somewhere amidst a perfect storm created by the effects of a few differing infections, those of removing certain medications from my daily routine and also the addition of others. I suppose we should have tried to do this in a much more managed way, with more scientific rigour really, by changing only one variable at a time but nobody thought that these medicinal changes could have such a profound effect.

The worst part of it all was the fact that the infections were making me quite violently sick, and my pain medication protocol at the time was doing the same so it was hard to tell which was causing the problem at any given time. Now I am infection free and we have a new protocol in place I am feeling as good as I have in a very long time indeed. During that period of feeling unwell though there were masses of issues to deal with, not least the obviuos one that not eating, or puking up what you do manage to eat, has a terrible effect on your weight. At my heaviest I was just over 64kg and when I was weighed in early January I was down to 56kg, leaving me a tiny amount of leeway to the 54kg threshold I have to be above for the transplant team. If I'm honest the two weeks after that weigh in I continues to lose weight and was almost certainly under the threshold. At moments like that I'm meant to contact the transplant team and be temporarily removed from the list but I took the risk that I would rapidly improve, which I have. I was weighed at the clinic a few days ago and I was 57.3kg and I am putting away food at an alarming rate just now so I plan on getting to round about 60-62kg and staying roundabout there as long as I can. That's enough of a buffer should any other infection arise I think.

The reason that you vomit when fighting an infection, in my case at least, is because the first thing my body shuts down when it's not getting enough oxygen to the internal organs is the stomach. I've made the comparison before that it's like altitude sickness where mountaineers start to vomit over a certain altitude. One of the unforeseen aspects of all this vomiting is that it badly affected my teeth. I was feeling so very nauseous that not only was the acidic remnants of my stomach affecting my teeth (bulemics often have dreadful teeth because of this) but, because I have such a hair-trigger of a gag reflex, any time I tried to brush my teeth I was gagging and occasionally being sick again. I had to deal just with mouthwashes in the time being, which isn't ideal. I mentioned this to my dentist yesterday and she understood but I'm going to see the dental hygienist on Friday and fully expect to be on the end of a serious lecture on the topic. Not in a heavy way - we have a really good relationship - but she'll make sure I know that she expects much more of me.

So now that I am feeling as well as I have in a while I'm trying to organise a lot more things to do, whether it be harassing people into coming to visit here or to actually go out and do something with them in the big, bad, scary outside world. When I was at the clinic last Thursday I walked a little about the hospital wards and yesterday walked from the car along the path to my house, which I haven't done in months. Granted the muscles that haven't been used in some time hurt but it's a good pain if you know what I mean.