I decided long ago never to walk in anyone's shadow

Recently there have been a fair few changes in perspective from me. I do not know whether circumstances or medications (or most likely both) have been the driving force behind this but I definitely feel it to be true nonetheless.

A few deep and meaningfuls with some of my closest friends have revealed a few things to me. First off is that I can't expect them to be able to help me in any capacity if I don't give them the information or tools required to do so. Shouting 'Just understand!' at someone is futile.

This is predicated on them knowing there is even something wrong to begin with. I have an atrocious habit of of appearing to be in control of even the worst things that happen, and that is almost exclusively because I allow it to develop that way. I want people to admire me and, while I acknowledge that there is nothing wrong with anyone asking for help when they need it, I'm not so very good at identifying when that person is actually me.

On a side note on this topic sometimes when you do ask for help people will run away, despite having told you that you can rely on them them for anything. This is genuinely nothing to do with you and as hurtful as it can feel there is FUCK ALL you can do about it so, as hard as this is, you move on. It's not like there won't be a queue of people who really do want to help after all. Some of the most amazing help I have had in recent times has come from the unlikeliest of sources after all. That's what we should embrace - all you good, good people.

Getting back to the point, we each (to a greater or lesser extent) have a little bit of a habit of only highlighting the really positive aspects of our lives and so interested onlookers may just take these edited highlights and extrapolate that to be the full picture. We each know from our own lives that this is nowhere near the truth so why do we take it to be for others? Is it simply borne of laziness on our part?

I don't wish to give myself a pat on the back on this front as I have no doubt let friends down previously when they've needed it because I've been focussed on myself, but I do like to think that I genuinely try to help out in whatever way I can. I empathise where I can and sympathise for the rest. It's never nearly enough but the effort is what matters I feel.

Even re-reading this last little blurb is strange though because even it presents me in my best light when it is not necessarily the truth. Truth is naturally subjective and I am, after all, the hero of my own story, so things will always be skewed a fair bit in my favour. I might actually be an incredibly difficult person to be around because my life centres round certain ailments and (even though nobody may like to admit such a thing) people could be absolutely fed up of hearing about it. For all I think that I just retreat into my shell when things aren't going the best it is just as possible that I am unpleasant to be around at those times. Overall I don't think so but 'Would some pow'r the gift to gie us, tae see ourselves as ithers see us' and all that pish.

What I'm really getting at is there's honesty and there's honesty. I never come out and tell people I'm fine when I'm not but neither do I maybe tell them all the ways in which I am not actually fine. You know, the ways in which they may actually be able to help. I've never really ascertained whether I fear being beholden to them in some way and so try and avoid that - I suppose this may be why I've often gone to the loves of my life in such moments for help (because I know I would never feel that with them) but I know that is asking lot of them, not least because it carries the complicating factor as to whether I am still in love with them. Rest assured I am not but I can understand why it could appear so.

Most of my oldest, closest friends don't read this blog. They don't understand it really I don't think. Intellectually I'm sure the concept hasn't escaped them but it just isn't for them, they don't seem to feel. I can't do anything about that either really so it can, on occasion, feel like relative strangers  may understand my feelings and motives better than they might. This place helps me iterate ideas better though so by the time they do get to my friends then they are at least better formed than they would have been, and I know they are glad of that. It can save me waffling a load of old jobbies.

As they don't read it though my, often oblique, cries for help can go unnoticed and I can feel like there is nobody paying heed to me when I need it most. This isn't actually close to being true obviously but that doesn't stop you feeling it as you hit refresh on your email inbox.

This was all brought into relief on Monday there when I was down in Newcastle for my quarterly session with the post transplant clinic team. Not in any truly dramatic fashion but simply by a particular doctor walking past. I recalled needing her particular brand of help at one point and her offering nothing that was of any use at all. As it happens things improved on that score anyway but that isn't the point. The point is that sometimes being forced to find your own way is the best way. Medically that is obviously true a lot less often but in this instance it was mentally that I needed help and what she was offering wasn't any use and so I worked it out anyway. This moment of clarity about how the answers to your issues may not be forthcoming from medical professionals has been the main change in perspective on my part recently. There are a few medics with whom I trust everything, and that will always be so, but there are some I can't be bothered with and I'm coming to terms with the fact that's it's ok to think that too. They're mot exempt from being feckless idiots after all.

None of which is to say that all advice has parity. For most of the population there is simply too much complexity in my situation for them offer anything over and above what appear to be platitudes and clichés (but aren't) and so there is still a gravity attached to certain peoples' opinions but it still doesn't mean they aren't capable of being quite massively wrong. I mention this because there are simply some at the the outpatient clinic who bother me, and it stems from their arrogance. I know that may well sound rich coming from me but I have nothing on these folks. They start off by assuming you won't understand and then give a half arsed version of events when pushed and then look at you with utter incredulity when you have the temerity to question their logic.To put it bluntly some doctors aren't actually very good doctors. Some aren't even particularly good people if I'm going to be brutal about it.

Where we go from here though is getting the best out of the many good ones I do have taking care of me. They are to be prized, and they very much are.

One other thing I did want to mention, although I haven't got close to getting my head around this yet, is the stuff I have been talking abut previously regarding nostalgia. What used to be absolutely clear memories in my head now often feel like things that have happened to someone else but whose story I have told so often they just 'feel' like mine now. This is odd but it is perhaps just a compartmentalisation of my life to this point and so shouldn't be examined too closely. Not sure on that one really.

Finally, doctors warn you that a year or two post transplant there may well be a mental dip because of the 'What now?' factor. When something has utterly dominated your life and it has gone, admittedly to be replaced with other complications, then you have every right to struggle a bit with the change in things. I am not only aware now that this is a possibility but that it is happening and that it is happening right now that I suppose this might well be my obtuse way of asking for a helping hand. Ta.

These words are not my own, they only come when I'm alone

The past is a foreign country. 

It's one I like to visit though. 

It's a place where I can go when I'm low. 

There is comfort to be found there. 

Of all my friends I am undoubtedly the most nostalgic. I think the following is a decent summation as to my reasons for that. Not my excuses you understand; I am not asking to be excused, but I am hoping to be understood. 

It's not uncommon for people to believe that their University years are their best. After all it is the period where you have the most 'fun' and the fewest responsibilities. That mine extended up till I was about 30 is indicative only of the fact that I refused to grow up until I absolutely, positively had to. People do tend to elevate the culture from their own youth in terms of importance, especially the music. This annoyingly means that you can hear songs from that era and it takes you back not only to the time but can also be to a place or a person you were with too. This sort of thing is ripe for some quality misty eyed romanticism. 

It will surprise absolutely nobody that I can pretty much split my life completely. It wasn't actually my Leukaemia diagnosis itself though. At some point in early to mid 2000 there was an event that created a schism in my life. Everything that happened after that has, ultimately, happened because of it. Post hoc, ergo propter hoc if you will. This fact makes me think of the archaic poem 

For want of a nail the shoe was lost

For want of a shoe the horse was lost

For want of a horse the rider was lost

For want of a rider the message was lost

For want of a message the battle was lost

For want of a battle the kingdom was lost

And all for the want of a horseshoe nail

Everything has repercussions. Of course that is a simplistic view of things but it does give us a useful starting point. In my own case a rogue mutation in my DNA led to a single white blood cell taking matters into its own hands and dividing uncontrollably.

That was Cancer.

That led to Cancer treatment.

That treatment led to side effects.

Those side effects led to damage to other organs.

That damage led to the need for further treatment.

And so on

And all because of a single mutation.

It would be reductive to say that everything that has happened in my life has happened because of that but it has dominated massively. I do try not to be bitter about the things I have had to miss in my life that I can relate back to it and I think I am pretty successful at it. I try to remain pragmatic about it but it does get to me at times. I know, for instance, that relationships have broken down as a result of some aspect of life post Cancer. Any time I tell anyone this they do say they understand and that it is perfectly normal to be bitter about such things. Even when telling me it is a rational response though I do sometimes get the feeling that they'd very much rather I was telling it to someone else. I don't ever declare it to be unfair as I don't believe that random genetic mutations have an agenda but other people do tell me that they perceive it to be unfair. That is lovely and I do appreciate that message. If it is sometimes hard to look at the things I have missed out on due to my illnesses then I suppose I do seek solace in the things that I perhaps managed to do in spite of them. This is where nostalgia kicks in.

Most people don't have time for nostalgia(and anyway it's not what it used to be). They're actually too busy keeping up with what life throws at them every day for such an indulgence. Life throws time at me though and so I have to find ways of filling it, and sometimes that involves thinking about the things I have done and how I feel about them. That's not to say I spend masses of time poring over the past; it's all relative. I do spend more time than most looking backwards though. I look at the friendships I have had and the people I have loved and rejoice in the warmth I get from thinking about them. This is most certainly a positive thing as it does remind me that my life has been chock full of happy things - it has not been relentless misery. Not by a long way.

I seek validation I suppose and that, perhaps perversely, seems to come from those I loved (and especially those who have loved me back). That may seem counter-intuitive as the fact they loved me really should be all the validation I require. I worry at times about the person I am now though compared to the one I was before. In many ways I am actually a much more impressive person (if you can conceive of such a thing) by virtue of having walked this particular path but I also recognise that I am a more difficult person to be around because of it. As Leukaemia has defined my life since 2000, and honestly despite my best efforts, I talk about it (and all the related foibles) all the fucking time. Trust me, I hate this as much as anyone but I can't stop it. I talk about it in the way that most people talk about their spouse or their children. I know that is a facile comparison but I cant think of anything else that is as pervasive in your life to use as a comparison. For what it's worth I know that I do make that comparison because of the very obvious fact that I don't actually have a spouse or kids of my own and I am incredibly jealous of those that do. In fact that jealousy gets ramped up a level when it is any ex of mine who is married with kids. There's a part of me that wonders what might have been with them if only I had done something differently (admittedly this is a brief thought but there's no point denying it). I also know the grass isn't actually greener. Looking after nieces, for instance, is a decent reminder that kids are great fun but there is much fun to be had handing them back to their parents who have to deal with ALL OF THAT every single day. For decades. I am digressing somewhat.

I view almost all that I perceive through the retrospectoscope positively. Of course there have been plenty of awful events along the way but my overall stance is that even the bad stuff got me to here so it can be classified as a necessary evil, or something. The only editorial process is one of omission though. The bad stuff gets overlooked in favour of the lovely memories instead. This requires an awful lot of dishonesty obviously and does kind of belie the idea that hindsight is 20:20. If anything it skews things dramatically but I don't really care that much. In lieu of real happiness just now I'll utilise the bits that I've had before. I hope nobody thinks that I'm miserable now as I don't feel I am - I only know that I have been happier and so I am aiming for that again. 

One of the weirdest aspects of looking backwards recently is that my perception of certain events in my life has changed. Where before I used to bracket certain events as being things I had done with a certain person now even I feel like a separate entity in a given event. They are memories of things that happened to someone else but with my as some disconnected voyeur somehow. I know we did these things together but something feels different when I think about them. This has really only arisen in the last while (since the heart issue really) and I don't understand it. I'm sure I'm not explaining it very well either. I just know that my thoughts feel different. 

There have been movements on the medical front over the last bit too but it is all trial and error just now so I will write down a lot more when I have a better idea of what the plan is. The docs are communicating brilliantly, which is a massive relief. The ones I hoped would step up and take over have done exactly that and their chats back and forth have been tremendous - that they are including me is a massive help too. I know I am a massive challenge medically but it is nice to see some docs who see that as a challenge rather than a burden.

Why must we hide emotions? Why must we never break down and cry?

So the virus thing that was hanging around at the end of my last blog turned out not to be viral at all.

Some investigations at the hospital after I turned up feeling not at all well led to us finding out that I have a little bit of a problem with my heart. The previous knowledge that my kidneys were a bit on the dodgy side had made me worried that I was retaining fluid - I had been feeling all puffy and bloated - and was worried that I was maybe breathless because I had some fluid on the lungs. Every test they did suggested that the kidneys and lungs were fine but there was clearly something wrong so they expanded their scope and did indeed find that there was a heart issue and it was by no means a small one.

I have what they call Left Ventricular Systolic Dysfunction. For those who aren't so up to speed on physiology here is a little bit of the medicine. Now the heart is not symmetrical. The right side deals with sending unoxygenated blood up to the lungs to get some gas and then it comes back down and the left side pumps it out to the rest of the body via the aorta. My issue is that the left ventricle isn't filling and emptying the way it normally should. It's almost like the heart doesn't have the strength to pump all the blood out and all round the organs that need it to operate well. This means that they all run at a little bit below normal. With me that manifests in lots of ways but the main one is shortness of breath - something I am not all that unfamiliar with. And therein lies an issue.

I had been so used to occasional twinges in the chest and breathlessness due to the lung issues of the previous decade or so that I had spent quite a while ignoring what had been quite powerful alarm bells ringing. I had been exercising on my rowing machine all through a period where the cardiac team had judged me to be suffering from quite pronounced heart failure. I just didn't know. How could I?

They think that this must have been an issue for at least 3 or 4 months, a period in which I had felt that I had been improving markedly. Up until I wasn't obviously. The feeling amongst all docs is that this damage to the heart muscle is directly attributable to the Total Body Irradiation I had pre Bone Marrow Transplant, which isn't a massive surprise really. That course of treatment has really done a number on me but the alternative to it was dying so it feels churlish moaning too much about it. This is a strange presentation of LVSD in that the heart itself is damaged but there doesn't appear on first viewing to be any damage to the arteries and veins involved. This Ischaemic disease would go hand in hand with a conventional presentation of the condition that you would expect in the normal patient (West of Scotland male in their 60's) so the fact I don't have that does stand in my favour.

And so I have now started on medication that will help out the heart, and will hopefully have a knock on effect on the kidneys, although they are also an issue. Again with the damage from TBI they have been a long standing thorn in my side (that's all they'll ever be). Kidney function tests have shown a deterioration over time and the fact I am on cyclosporin to stop me rejecting my lungs isn't helping the cause. We are now looking to the transplant team for ideas about alternatives for my immunosuppression regime, although I am not holding out a massive amount of hope on that front. For such skilled physicians in so many regards they are incredibly inflexible when it comes to moving away from their approved regime. When they do deviate from the norm their first port of call is tacrolimus which I am unfortunately allergic to so I'm not really helping them either if I'm honest. If we can't find an alternative to cyclosporin then we will have to find other ways to be a bit kinder to the kidneys, which will mostly involve looking at my entire repeat prescription and finding alternatives to some of the nastier stuff on there - this will be no small undertaking and will require the co-operation of many different groups of consultants and that isn't something they are well known for. Annoyingly each one tends to feel that they are at the top of the tree and can be quite dismissive of the work of others. This isn't really helpful for the patient, as I'm sure you can imagine. Avoiding yet another transplant is the  order of the game here. The irony of maybe needing a transplant because of anti-rejection drugs hasn't been lost on me by the way.

Even getting them to share information with each other is a test of patience. Recently I had the transplant team moaning to me at clinic that they hadn't been informed of the heart issues. I know they had - I was in the room when the phone call to discuss it took place. That they hadn't yet received a letter explaining it all was their issue but I felt that them moaning because their own staff hadn't bothered to let them know that they had been phoned was a more pressing issue. It is all fine and well with a patient like me that can talk to them about their treatment and can even rebuke them for their own failures, but it really fucking bothers me that there will be patients out there who could well be let down by simple stuff like this.

Anyway, I shall spend the next wee bit trying to make sure that they all effectively communicate with each other while I undergo the masses of investigations to assess what the next steps will be.

Away from all the medical stuff I have been pondering things for a while now. I've written on here before about how it is strange how you can't make any predictions at all about who may step up and really help you when you are in a bit of peril and those who, by doing nothing, seem like they have taken a step backwards and away from you.

On a case by case basis you can examine any number of rationale as to why this happens and so nobody comes across badly from it, but when you look collectively (and this is what you do when in a hospital bed) then you do begin to wonder why your group of friends isn't responding in the way you may have hoped they would. In my instance there is almost a feeling of fatigue about it as far as I can see. If anyone else had heart failure for instance I have no doubts that my friends would rally round in exactly the way you would hope. Unfortunately with me it appears to be true that because I do always get through things and at least appear to do fine then I maybe don't need their help. I am very much a victim of my own success. If you throw in that our approach has always been to minimise how scary these sort of things are then perhaps we shouldn't start behaving differently now. In my mind though there is the worry that my own fatigue is an issue. The very fact I have got through things in the past doesn't mean that I'll be fine this time. The literal and metaphorical scars from previous bouts have left me gradually weaker each time something happens and my luck will run out one day. That notion terrifies me.

As i hinted at above though it really is only when you look at collective behaviour that this is an issue. You can't criticise any one person for things that aren't their doing. You can only judge them for what they actually do, or don't do in many cases.

This morning I woke up from a particularly vivid dream, and I had a proper Damascene moment of clarity based on it. Basically I have been looking at this all wrong. When trying to understand others you should always try walking a mile in their shoes, not least because then they'll be a mile away and you have their shoes. All joking aside though it is staggering that I haven't done this in any honest fashion before now. It has always been me simply trying to understand them but affected by my own critical glance at the outset and so any conclusions are massively skewed towards what I'd like to think I would do rather than what I probably would do.

When I tried simply thinking how I would behave if the situations were reversed then I didn't come out of it in maybe the way I would hope either. I should definitely clarify that. It's not that I wouldn't care or wouldn't try to help - it's more that I would maybe fall short because I would actually be so affected by their plight that I couldn't be more use. Their grief is actually incredibly sophisticated and I've been making the mistake of looking at it like something simple.

All things considered I feel that being the patient, with all my myriad problems, is sometimes easier than being one step removed. Those who are closest to me have an absolutely hellish time of it. I think I have a fairly decent handle on the everyday medical stuff and am not too bad at dealing with the psychological side of things too. It now seems quite clear though that being even just a single step removed can be harder as you aren't just dealing with all that stuff but you're also watching someone you love struggle. What I need to do more than anything is to stop worrying about what others are thinking (or what I assume them to be thinking if we're going to be accurate). It's not fair on them for starters and does end up just taking up too much time. One of the first bits of advice I would dole out to anybody else who is going through a chronic health condition is to read the serenity prayer. Accepting the things that are outwith your control is a massive step towards genuinely good mental health and having the wisdom to identify those things in the first place is hugely important to that end.

There is hope in honest error....

....none in the icy perfection of the mere stylist.

Well, quite.

Those of you who have followed this from the process of me getting on to the lung transplant list may remember that the final hurdle I had to clear was to prove that my kidneys were not only in good enough to deal with the immediate drug regime post op but also for a lifetime of immunosuppressant drugs, which can cause a bit of damage to them. This was a real struggle as I had a fair bit of damage to all my organs from the radiotherapy I had to kill my bone marrow off back in 2001. After several attempts at what they call the glomerular filtration rate test the team finally said I could go on the list, but it didnt remove the worry about the kidneys.

Now a few weeks back I went for an appointment with a rheumatologist as being on steroids for life can also lead to osteoporosis. A bone density scan suggested I do indeed have a bit of an issue on that front, but it turns out it isn't related to steroids at all but they suspect it is someyhing called kidney bone disease. Turns out the long term effects of the damage to my kidneys (and throwing the dtug cyclosporin into the mix too) has caused enough damagr that my kidneys aren't excreting things properly and this has led to an imbalance of calcium and phosphates and so bones aren't forming correctly. The parathyroid glands that control the balance between these two things may well be malfunctioning too so I have to get a series of blood tests to sort out what is going on.

Also on the topic of long term radiotherapy damage it appears that my eyes have finally fallen foul of it and I am now in what appears to be a fairly rapid onset of cataracts. Just in the last 6 weeks I seem to have gone from almost notmal eyesight to being incredibly light sensitive and having a cloudy halo in front of everything. It is more than a little bit shite  I can barely read anything now. You wouldn't believe how long it has taken to compose this, for instance. 

I always knew that these things would happen eventually. They do warn you before you get total body irradiation that It's in the post for you but 17 years later I just wasn't expecting it to manifest like this.

The sight thing can be dealt with by having relatively minor surgery I believe (although it will never be approaching what I had) and once we get the full blood tests back we'll know the approach to take for the kidneys but there is no getting away from the fact that these are actual setbacks and it has knocked me a bit.

I've also had a viral thing hanging about for weeks now, which is pissing me off. 

Hanging on to hope, when there is no hope to speak of

There will come a time when anniversaries of things that have happened in my ridiculous medical history will pass without me even thinking about them I'm sure, but that time is not yet now. Today marks a year sine the last time I almost died and that I feel is still worth acknowledging, not least because now I can tell the whole story of how it all unfolded.

Everything had been going really well. I had finally been moved from ICU into HDU, which felt like a massive step towards the exit door. The previous week had been pretty great on lots of fronts actually. I had a veritable revolving door of visitors - I had a few old friends in one evening and laughed more in that one night than I had in years, especially when taking to the task of seeing just how far I could push my pal Kev with details about the surgery (he was going quite an impressive colour when hearing about it). I also managed my first shower after 266 days of bed baths, which was amazing. It felt like somebody sandblasted a layer of skin off me and I finally felt properly clean. Even the night before I had a visit from two great friends, one of whom is still the other part of the longest relationship I have managed in my life. It was a truly wonderful evening, although in retrospect us joking about how the very next day I was to get the tracheostomy out and that my best friend (who was arriving the next day after that from Slovakia) might not believe I had ever had one in at all, may have been foolhardy. Having had these visits as well as those from family and just everything really had left me so upbeat it was ridiculous. I had proper hope coursing through me as to how my future was going to pan out. At this point the feeling was that while I would get home, I still had to learn to walk and talk and breathe properly again, which was going to take time obviously, but at least I didn't need to be in the critical care unit and could do all of the recovery in a conventional ward. The odds were that I would still have to use a portable ventilator overnight but considering what I had gone through to that point I was absolutely amazed at even that possibility.

I had a long standing deal with the staff in critical care that when the trachaeostomy came out that I would put normal clothes on instead of the gowns I had been wearing since my admission. Many of them had asked if I had wanted to change into civilian clothes before that but I had always maintained that I didn't want to destroy my own clothes as having a gaping hole in your neck isn't always the cleanest of situations. Anyway, I was always quite comfortable in the gown and the idea of pulling a t-shirt over my head was somehow quite daunting but if the tube was out and the hole covered I thought I would give it a go.

And so, on the morning itself I was quite giddy. 257 days of having the tracheostomy in had passed and it had taken a slow and methodical process to get to the point where everyone felt we could take it out and any oxygen needs could be met with nasal prongs or a mask. The team came by on rounds and said the plan was indeed to carry on with the plan we had talked about with one of the consultants coming round once they were done going round everyone and we would take the tube out. The process we had gone through in the weeks and months beforehand in reducing the size of the trachae tube itself had let me know that it was a strange sensation getting it removed but it wasn't in the slightest bit painful so I wasn't worried at all.

When the doc came round and actually removed the thing it was so incredibly low key that it beggared belief. It was such a massive deal but it was done in such a cursory way that I couldn't quite believe that it was as straightforward somehow.

And so, just like I had promised, I decided to try putting some clothes on. I (very slowly indeed) got my shorts and t-shirt out and placed them on the bed and set about trying to get properly dressed just before lunch was due to come around. I managed the t-shirt and a pair of kecks and had my shorts at my knees and was just about to hitch them up over my arse when something felt very, very wrong very quickly. I still had a few monitors on and the one that was suggesting that something was awry was my blood oxygen saturation level (sats). I had almost instantly gone from 95% oxygen down to just over 60%, which was a new record for me. I have learned since that if you drop below 60% there is an immediate threat that your heart could just stop. I didn't know that at the time and it wouldn't even have mattered anyway as the more pressing concern was that I couldn't get any sort of breath into me at all. Everything was operating still on what I already had in my body and that wasn't going to last long. I was sitting in an upright position when it happened and had to stay that way. It was absolutely agonising as my back was arching so much with my body's futile attempts to suck some oxygen in. Even with high flow oxygen pumps operating on trying to force some of the good stuff into me it was barely making a dent. Something had clearly gone wrong structurally and the oxygen just simply wasn't getting into me to help. It was so rapid and dramatic that it wasn't jut a case of my lips going blue - my whole body did.

The previous couple of times I had almost died I had been totally unaware of because I was unconscious for almost all of it but this time I was fucking wide awake and all too aware of what was happening. I genuinely thought that I was on my way out.  It's maybe worth mentioning at this point that by that stage things had improved so much in my recuperation that if you paged the home ventilation consultant he would maybe amble down about 45 minutes later to see what was happening. That he arrived within 3 minutes of all of this hullabaloo starting I didn't take as the greatest sign. This was a proper crash like you would see on telly. The number of doctors and nurses around me by this stage was phenomenal. To say that it was terrifying is as big an understatement as I've ever made but I was frightened out of my wits. It was also so sore by this stage that I was pleading as much as I could for them to just knock me out. Unfortunately for some of the checks they had to do they had to keep me awake so I had about 15 minutes of barely being able to get any breath in and being in agony before they finally got the propofol into me and I got the relief borne of unconsciousness.

When I woke again I was back in ICU and my mum and my sister were at my bedside. Again I thought this wasn't a sign that things were in any way ok. I could feel that a replacement trachae tube had been put in and the cuff was inflated again so I couldn't speak. It was all a huge step backwards and I just felt like crying. This isn't a conventional reaction from me at all as I am generally just very stoic about things but right at that moment I just thought of what my chances of ever being rid of machinery to help to breathe were.

After I spent a bit of time with lots of the family, who had descended after getting either emergency phone calls or having someone else turn up at their work to get them, then the docs came round and explained what they felt had happened. After having had a piece of plastic holding my trachea together for so long removing it led to it collapsing, even though there was a stent in there that should have held it at least a little bit open. The cartilage that keeps it rigid had just wasted away and my moving around had just caused it to fail. The insertion of another trachesotomy had eventually sorted this but it had obviously been a bit dangerous. As well as this one of my lungs had decided to completely collapse, which nobody could quite explain at the time. By all accounts the before and after x-rays of my chest looked like they could have come from different patients when they got the lung re-inflated. One of the doctors that I had become quite close to confided in me later that day that it was one of only about 3 times as a doctor that he had been properly terrified when it was all happening. He was so apologetic about having to keep me awake when it was obvious as to what level of distress I was in. In his previous rotation he had worked with one of my sisters and I think the thought of having to tell her was in his mind as much as the other stuff.

I calmed down slowly over the next few hours and even managed to put out a post on Facebook to let as many people know as I could what had happened, and that I was OK. I had indeed nearly died (again) but the really crucial thing was that I hadn't. The docs in fact were (I felt at least) fairly inappropriately upbeat when talking about my prognosis. They all seemed to be of the opinion that this was a setback that would only hold me back weeks rather than months in terms of recovery. This was amazing to hear, even if I doubted it right then.

All this meant that when my best friend Dave did arrive in to see me a day or so later I couldn't actually speak. I had so much I had wanted to tell him and I could barely get even the most rudimentary point across. Everyone's first attempt at lip reading goes badly and then, over time and a few visits, they just tune into it. We never had that opportunity as he wasn't back in the country for long enough so the time he spend with me was torturous for us both. It did at least get a little bit comical when I told him to get a bag from behind my bed. In it was my gift for his new born daughter's christening. He quite simply didn't understand that was what it was and each attempt I made to explain to him that it was for her just wasn't getting across and we were each getting more and more frustrated. Finally, after getting as close to shouting at someone as you can when you have no air going across your voicebox, you cold literally see the penny drop and he replied 'Oh, cheers mate'. Fecking idiot that he is.

As well as coming over to see me it was also Scottish Cup Final weekend (I'll leave it to you to decide which of these was Dave's greatest priority btw) and Celtic were going for the treble. The last time they had achieved this was the very season I had got my bone marrow transplant. Never let it be said that I don't go to extreme lengths for my team to win things. From the incident on the Wednesday I had a couple of repeat showings, albeit much less dangerous than that one because I had the trachae back in, where my sats just plummeted and I had to get the rapid oxygen supply on to get me back on an even keel. The same day that Dave had been in the team of consultants decided amongst them that I needed surgery to basically rebuild the whole structure of my windpipe and to do a bit of repair work on the lung that had collapsed. For this they would require to assemble a team that would comprise the respiratory surgeon and an ENT variety to do below and above the voicebox accordingly. To get that team together would take until the next Wednesday, especially as they had to get a special drug brought in to treat the scar tissue that was, at the very least, partially responsible for the lung collapsing. The episodes where my sats were dropping were an inconvenience, but everyone thought I was going to be ok to last until the Wednesday. I watched the football and the last minute winner made me feel amazing for about ten minutes, and then another plummet in sats led to me just dropping out of consciousness for most of the Saturday night. Things were not very good - I knew that.

On the Sunday morning my own nurse was helping out at the bed next to me with a patient who was properly sedated and I jokingly said to her that I wanted some propofol just for a wee break from her patter. Almost immediately my sats dropped again and the consultant in charge that day called the ENT surgeon who came to see me and within 30 seconds of him arriving and sticking his scope down for a nosey he had decreed that "Paul, you've gone and fucked up my Sunday as you're going to surgery, and soon". Very shortly after my respiratory consultant arrived in shorts and t-short (apparently I had somewhat interfered with barbecue plans) and then a specialist anaesthetist arrived in to talk me through what they were going to do. Obviously they couldn't do the full surgery as the full team couldn't get in at such short notice on a Sunday so they were going to do the repair work above the voicebox as well as what they could do below it. The anaesthetist explained that what seemed to be happening from a look at the scans they had rapidly performed was that there was one rogue piece of skin that was flapping over the entry into my lung and occasionally blocking it. In her words it was like someone was periodically sticking a peanut right on the entry to my lung and that's why it was only every now and again that things were going wrong. What was immediately clear though was that it needed sorted because quite simply I wasn't making it to Wednesday if it wasn't. I instantly joked with my nurse that I'd be getting that propofol after all.

As promised the ENT doc did all his work there and then and so wouldn't be needed on the Wednesday and I was stabilised enough to mean that I could wait until the rest of the team was assembled (along with the arrival of the necessary drugs) before doing the proper repair job. That was when the most incredible thing happened. During that main surgery the team noticed that, because of assorted structural failings) I had basically been trying to breathe through a hole the size of a straw. The surgeon, Chris, decided to widen this substantially and the effects were remarkable. Within days of that surgery it was not only possible to remove the tracheostomy tube without fear of the windpipe collapsing again but we also tried taking me off the ventilator. I could breathe normal air.

When I arrived in Glasgow from Newcastle my diaphragm wasn't working and so I couldn't breathe at all without the ventilator and the home ventilation team told me that only with good luck and a following wind would I get home without having to use the ventilator for at least part of any day. In their opinion it would probably take 6 months to get to that point too. That was their best case scenario. 

Now I was sitting up and able to breathe on my own with no extra oxygen, and it all stemmed from the doc finding a structural flaw that he wouldn't have found if my windpipe hadn't collapsed when we took the trachae tube out the first time. I can't quite say that I'm thankful that it happened as it is, by some distance, the most traumatic thing to ever happen to me but the result is incredible. I got out considerably earlier than the home ventilation team had even conceived possible and did so without any of the machines they expected to send me home with.

Now, a year later, I will be heading into Glasgow on the train to go to the Dental surgery at Gartneavel on my own. It is still ridiculously difficult and takes all my energy to manage it and the recovery after is a struggle too but that I've come this far in that time is miraculous.

I've been locked out, and I've been locked in

I'm not massively sure what I want to write about other than that I want to write about something. It's the anniversary of my walking into the hospital in Liverpool and it feels like I should address that somehow. The 9 years in between times have been pretty hrd going but it feels now like there's progress being made; the type of which I genuinely didn't think was feasible this time last year.

There's too much to really say about all that so let's just go back to the immediate time post trasnplant and what was happening. Prior to the operation there was all sorts of chat about how things tend to go for patients afterwards. As I've mentioned before the complexity of my case always left me feeling that it was going to be somehow more complicated than that, and so it panned out. Quite simply not being able to get enough wind in my pipes was such a concern that the dedcision to give me a tracheostomy and put my on a ventilator was made fairly early on and I subscribed to that fully. I knew I was in a bad way so it was an easy decision to make. In the immediate aftermath of that there was improvement and I was even making a bit of progress in getting out of my bed and into the chair next toit from time to time. It's amazing how your oxygen saturation in your blood rockets when you do that just from sitting in a much more upright position, where your lungs can fully inflate. I could only do it for a certain length of time due to the tube up my arse but it was still worth doing.

Anyway, it was a real day to day battle to see if I could slowly be weaned off the ventilator. On some days dropping the settings so I was less reliant on it worked exactly as intended and on others it went wrong and there was no great, obvious explanation for why most of the time. This was confusing the team of doctors almost relentlessly so every day required tinkering of some sort.

Aside from the deliberate movement to the chair and back, which was getting easier, everything seemed geared towards making sure I stayed as still as I possibly could as any movement resulted in pain of some sort. While it's in my mind the transfer between the bed and the chair was actually quite scary to begin with as it involved moving a lot of tubes and wires, and even the brief disconnection of the trachae tube, so it was not an experience I was always terribly thrilled about undertaking. The pain was well controlled broadly speaking at this point but sudden stupid movements on my part could still cause unbelievably sharp pains. Forgetting your predicament and reaching for something automatically is the greatest source of these events.

Other pain arose when things did go wrong on a slightly bigger scale. A few things took me back quite dramatically. On occasion they even took me back to the operating theatre. At the merest sign of anything going wrong in ICU you get a chest x-ray it seems but you're glad of that level of scrutiny when it reveals something like a pneumothorax. That generally requires a chest drain insertion, of which I was to have many over my time in there. On one occasion though there was something obviously much more wrong than that so it was proper CT scan time, which revealed that my new lung had herniated and was pushing through my ribcage. This was rather painful actually, although I thought it was just the general pain of a chest infection or something. I don't have much frame of reference for my lungs poking through my ribs after all. And so back to get a small procedure to fix that and all was well. Briefly anyway as that resulted in surgincal emphysema. My chest seriously swelled and had the giveaway sign of having a crackling feeling when pressed upon. My whole chest had been a sensory minefield for a good while anyway as immediately post transplant there was an epidural making everything in that whole area feel numb (which was tested regularly with ice poles to see if I could feel anything there) and then when I did get what they laughably called normal feeling back there was just a weird numb feeling across the whole chest that would take well over a year to start to resolve. I suppose massive surgery on that are will have that kind of effect.

Anyway, that emphysema issue, along with the pneumothorax took a while to resolve. Indeed it was a bit of a bone of contention between some of the doctors as to what point they had actually considered it resolved, which is fine for them as an academic exercise but a bit shite for the person in their bed worrying as to whether things can start to improve.

Round about this point I decided that I was taking a stand. By this point I could tell my mother was exhausted and needed a break. As fate would have it she had booked  a cruise with my younger sister's family way, way before I got called in and she kept insisting that 'we will see' any time I pushed to see whether she was going. In the end I insisted that she go as it became very obvious to me that I wasn't going anywhere anytime soon and she really needed the respite. I know that it's obviously hard on the patient but you wouldn't believe the draining nature of this sort of experience has on the close family. One of the things that I found hardest in that period especially was my own lack of ability to communicate. Getting your thoughts across to the medical staff is bad enough but when you're trying to have a conversation with your mother about how you feel she needs a break from it all it is incredibly frustrating if there is even the slightest misunderstanding of your meaning. Anyway, I got my way in the end and the mother was sent packing for a well earned rest. In the meantime I would have my uncle down for a bit and my eldest sister down for a good wee while too.

While she was away there was a bit of a change in tack with my treatment. As efforts to get me off the ventilator were not going as hoped we thought we'd try what they call an augmenting regime as a strategy. Upon first hearing this  I actually misunderstood and thought they were referring to an augmentin (a type of antibiotic) regime, which I didn't understand at all but I was so drained by this point that I just let it be. What it actually involved was a massive dose of steroids over 3 days to shock my system into re-setting and let me recover fully. It looked like it was working as well as after my time in isolation - massive doses of steroids completely buckle your immune system so you need to be in a side room - I was actually walking short but increasing distances. Then one Sunday I hit a brick wall. Not only could I not get up to walk but I couldn't even get out of bed and the ventilator settings had to be ramped back up again. Nobody understood why. It was round then that I had my first unfortunate experience with the team of doctors as they weren't always the best at communicating with you. During rounds they would stand in a circle at the end of your bed and discuss your case but wouldn't always deign to share their discussions with you. This led to one doctor let slip in passing that they had already began to wonder if I would ever get off the ventilator. Nobody had even suggested this so it was incredibly upsetting. When it got addressed the next time there was rounds the chat turned to the idea of me being shipped across yown to the Royal Victoria Infirmary to a specialist in getting people off ventilators so some good came of it but it still wasn't the right way to go about it.

While my mum was away a few other things happened that are worth mentioning. Obviously communication is an issue that I've mentioned a few times but then I not only couldn't speak but I developed tremors that were so bad that I couldn't write and struggled to type things on my phone ao I was genuinely restricted to lip reading. Some were better at that than others I have to say and it was incredibly infuriating for both parties if you couldn't get your thoughts across. The thing I hated most though was when someone who clearly hadn't understood you pretended they had - that really is no use to anyone but it's amazing how many did it. The tremors I mentioned also meant that I couldn't do things as rudimentary as putting my eye drops in myself. I have to use them so often too that it became annoying having to ask the staff. They also never seemed to understand that they weren't single use ones that got thrown away immediately after use. These were special ones that I had to get from home and could be re-used but trying to get this fact across to some of the nurses was an almost thankless task.The fact that I had to get them brought down from home meant that I was keen on preserving them so anyone just throwing them away just pissed me off. Just before I finish off I will mention that I had an NG tube in for feeding at this point but I was having lots of problems with them. That issue deserves a whole post of its own though so I'll get back to you.

And you came along and found the weak spot

I've had a pretty good couple of weeks and I wanted to go over it a little. Having thought of doing so I realise that, in recent times at least, I have been guilty of editorialising. It's not been by design but I realise I have definitely been more inclined to put fingers to keyboard when positive progress has been made than when there has been anything negative to report. It's not dishonest exactly but neither is it completely honest either.

When I was in the midst of the worst transplant related stuff I did try and report on the troughs as well as the peaks, albeit I recognise now how coldly scientific I was in reporting that stuff whereas I allowed myself to be much more emotive when any positive stuff was happening. This is only human nature and I'm not berating myself for it. I just thought it was something worth addressing.

To that end about 3 or 4 weeks ago I had the first real setback in a long while. To that point I had a slow but meaningful upward trajectory in terms of getting stronger and fitter and then, quite suddenly it felt like it was undone. I got a chest infection. Nothing too dramatic for what it's worth (a course of antibiotics eventually did the job) but the first few days I felt as weak as water and then there was a period post infection where I felt like I had taken a massive step backwards. Not only was I not capable of doing anything remotely like my physio but the everyday stuff of just getting about the house was difficult again. Looking back on it now I can rationally identify that it was really no worse or dangerous than if any normal person got a similar chest infection but that it just takes me a little more help and a bit more time to get over. When you consider the winter we have gone through, that I have had this infection and one more mild cold in about December then it really is quite remarkable. 

The main annoying thing for me though was that the timing of it meant that I had to miss the wedding of an old school friend, and I was bloody furious about that. We have only been in touch again for a short while but I was really excited to go to her big do. She, having family that have undergone a lung transplant, understood completely and was simply concerned for me but that only served to bother me more as I wish she didn't have to. That's my problem though. Even though things are so much better in my life now I have to acknowledge that my new normal will still contain these odd times when I have to miss out on things, even when I am desperate to do them. I have to be smart about these things and then not let it bother me when I have made what is actually the right decision.

Anyway, somewhat belatedly getting back to the point, I'm feeling as good as I can remember in a very long while. The timing of this recovery was particularly good considering just how busy a week I had last week. On Tuesday I was in doing some clinical research study work with the respiratory team, on Wednesday and Thursday I was down in Newcastle for my quarterly transplant clinic visit, and on Friday I was in the leafy west end of Glasgow for a trip to the dental hygienist.

I've mentioned before that I try to help in any way with research stuff. I enjoy it massively even if most of the time the things that I'm helping out with are much more likely to help other patients much more than they will me but someone had to have that same thought process decades ago for the treatment I get now so it just feels right helping out. As has been pointed out to me by a few folk 'nobody is completely useless, they can always serve as a bad example'. That idea alone has led to some interesting conversations with doctors about how we only really find out how anything in the human body works when it breaks down. If everything is working fine it's actually quite hard to get a glimpse as to how it operates but if something goes wrong, and you can identify it, then you immediately have a better understanding of how it operates in normal conditions. I have mentioned the study I was in for on Tuesday before - it involves a new piece of equipment which uses electrical impedance to give a detailed, real-time picture of how the lungs are actually functioning. This is the machine that reduced every consultant who came to see it in action to uttering a single word: cool.

And it is. To be able to actually see what is going on visually rather than taking plots and calculating things is not only psychologically a massive step but the quality of information that can be gleaned from it is amazing. The doc could tell me, for instance, that there were obvious indicators that I had indeed recently suffered from an infection and was healing appropriately. It's not exerting at all - it involves having a belt with electrodes (and conductance gel) wrapped around your chest, just at the diaphragm, and you lie and breathe normally and it really does all the work.

Here's a couple of pics of what you get from it

As you can see you do still get the plots (you can see me breathing in and out just from the peaks and troughs on them) that can be used later to calculate all sorts of things but the amazing thing for me is that picture that I have expanded for the second pic. This is what I am talking about with respect to real time pictures of your lungs in action. It shows a remarkable amount of detail if you know what you're looking for, which is admittedly beyond my abilities, but the good docs tell me you can see the part of my right lung that doesn't inflate fully still as well as even being able to tell where the stent that is in my trachea is quite precisely and whether there are any growths around it. The docs are especially interested in what my pics look like pre and post bronchoscopy so have looked at that before but as they only had a short period with the machine this time we didn't have the opportunity to check that out again. 

I am going in for a bronchoscopy in a few weeks again just to see how things are looking inside and the night before I am having a sleep study done. There is a thought that I might suffer from sleep apnoea so this will hopefully show whether this is the case. That both are getting done on consecutive days shows an excellent level of joined up thinking by the team at the hospital.

On the Wednesday my brother and I went down to Newcastle ahead of my trip to clinic first thing on THursday. We have now found a B&B which is right next to the hospital and is also right next to a really nice wee pub that does excellent food too. After we arrived we went out for a bit of food and to meet a few friends who live down there. As well as friends from my time doing teacher training I also try to meet a few of the nursing staff from my time as a patient down there, but that is always dependent on shifts and things.

Clinic went really well again. A few very minor issues arose but nothing terribly marked. The first of which is that I have developed a small hernia right where the scar for my PEJ feeding tube was inserted. It doesn't bother me and isn't painful at all so nobody really wants to bother with it as opening me up to fix it would almost certainly cause more problems that it would fix. I am perfectly happy with that. The second thing is that I have been getting some occasional pain and discomfort in the kidneys. Now my kidneys got damaged not only by the radiotherapy I had for the BMT but also the many, many drugs I take now do a biit of a number on them (especially the immunosuppressant cyclosporin) so we are always doing a bit of a balancing act of giving me enough immunosuppression to avoid rejection but not to damage the kidneys beyond repair. To that end we actually reduced my dose of cyclosporin slightly but we also took a look at my entire repeat prescription to see where else we could lose things that perhaps aren't needed any more. The obvious ones are pain medications, which I have been addressing myself anyway and stopping slowly as most of my pain was muscular anyway and exercise has helped massively on that front. A few other things have been stopped and doses of others have been altered too and even just a week later I can already feel a difference in that there isn't even a slight twinge in the kidneys on either side.

Having mentioned the recent infection the doc said that I now need to take a different approach when I feel such a thing manifesting. I used to keep a store of a specific antibiotic and start it straight away. This was a fine approach pre-transplant but having taken it for a number of years (and therefore risking bacteria being resistant to it) and there now being more concern post transplant I have now to call the transplant team at the slightest hint of an infection. This was perhaps a much needed reminder that we can't fuck about in these instances and I can no longer just self medicate my way through these events but need a proper going over by the team of doctors who really know what they're doing.

Chest X-ray looked much better and breathing tests also showed a marked improvement which I felt myself anyway.

The real thing to take from this visit to clinic though was the nature of the consultation with the doctor. He was one of the docs I saw regularly when I was down there on the ICU ward and was one of the ones I got on best with. With the greatest will in the world there are a few of the doctors in that department who are not blessed with communication skills - possibly a by-product of about half the patients being sedated and even more being unable to communicate with them - so they often huddle at the end of your bed when on rounds and don't talk directly to you at any time. This doc wasn't one of them. In fact he told me that he often sat next to my bed on night shifts worrying that I wasn't going to make it as I was fighting on so many different fronts at once. He kept repeating himself just saying 'You've got some fight in you'. I hear people say things like this all the time and I usually tend towards thinking everyone would fight just as hard if they were in the same situation, but hearing such things from an experienced doctor does give you a little pause for thought that you might actually be a little bit inspirational. In fact when I went up to the ward to say hello and drop in some shortbread that was the word that all the staff there kept using. I've said on here before that I don't get to be the one who decides if I am indeed inspirational. That I don't really feel it doesn't matter - it's what other people perceive in that instance that defines it. Being honest it is actually lovely to hear.

Before heading back up we had a bit of lunch with another couple of the nurses who had looked after me, which was fantastic, and then a lovely wee run up the road. I barely even fell asleep this time.

The journey and the exertions of the clinic meant I slept a little longer on the Thursday night but I had an appointment with the dental hygienist on Friday and it was at an unfortunate time that nobody could drive me so I decided it was time to make a go of public transport. The train drops me just at the hospital but the walk from the station to the hospital itself is further than I have walked in a very long time indeed. I decided it was worth a try and if I was struggling my brother said he would come and bail me out. I made the 400-500 metres or so in about 23 minutes with 3 stops along the way. Those who see me most often see me do very short distances just fine and then recover but this was a bit different. I did manage it though and also managed the return journey. My legs were properly screaming at me and I was out of breath but my recovery each time I did have to stop for a break was very pleasing. The hygienist was amazed I was there on my own, which also felt fantastic to hear. Both her and the dental nurse were so pleased that my progress was so very visible.

I have been back on the rowing machine and am improving on that on a daily basis as well. There's all manner of criteria on the little computer that I can use as a measure for that progress so it's been an absolutely tremendous purchase.

The other day I even picked up a guitar for the first time in forever as I felt like the tremors that have held me back from doing so since transplant are finally subsiding and managed to have a little go at some of my favourite practice songs just to get the fingers moving. It was a struggle, as it would be ffor anyone who hadn't picked their guitar up in nearly two years, but the tremors mean my fingers don't go exactly where I want them to so it is that little bit harder. That I could play something vaguely recognisable felt brilliant - the tremors even give a bit of a vibrato that wasn't present before. I'll take that.

Back to the original subject of editorialising I hope that what anyone takes from this ramble is that, while I can manage a lot more now than I could, there is still a cost to them. I may look much healthier (and I am) and look like I can manage most things that normal people do, I am a very long way from being able to get somewhere near a normal life. That doesn't bother me except at those points where people don't seem to understand just how long this is going to take. I have no idea what my eventual limitations will be or what I will even be able to do with my life just yet so unfortunately it just becomes infuriating when that is one of the first things people ask me. I know it comes from a caring place so it's not the person that bothers me as much as the question, if that makes sense.

Oh aye, just before I went out for the clinical trial stuff last Tuesday my old parish priest chapped the door to see how I was. Despite having not been religious myself for some time I have always loved that those who are take the time to pray for me so for the Monsignor to arrive in was just lovely. That we spent about as much time talking about Celtic as about my health is entirely consistent with how things were back when I was an Altar boy for him. My name is no longer on the sick list on the weekly bulletin. This feels like progress in some way too.