I don't care if it hurts, I wanna have control

I have had a bloody torrid time of it these past few months but things have definitely improved in the last wee bit.

First of all I had a respiratory virus that kicked the absolute shite out of me. Even when the infection had cleared the after effects of it on my body lasted for so much longer. I had friends who are in great health otherwise who struggled badly for ages with it so in reality I had no chance of getting through it unscathed.

While that was going on we were also trying to adjust my pain medication. I wanted off diazepam (which I was taking for muscle pain) as it was fogging my brain up quite badly so we came to the decision that I would stop taking it and instead I would increase my dose of co-codamol. At this point I was vomiting regularly and just put it down to the virus as the first thing my body does when it is struggling for breath is to shut down my digestive system. I was losing too much weight though so couldn't afford to keep going that way. As well as the crippling nausea I was grinding my teeth and feeling altogether more anxious than I normally would and it became apparent that the co-codamol was the problem. I tried messing about with the dose for a while but it seems that anything over the original dose I had been on for years was too much. I reverted back to the original dose and over the course of a week or so everything got back to normal. I could eat again which was a really big deal. There's no getting away from the fact my joints and my muscles ache but to be honest I'd rather deal with that than try anything heavier in terms of pain relief again.

That whole period left me pretty down as I couldn't really do anything and I was sleeping a ridiculous amount. You tell yourself you're sleeping because you need it but the reality is probably more like you're sleeping because there's nothing else to do. I couldn't concentrate on anything and I was getting really infuriated about it all. 

Then just as things were improving I got the horrible news that one of my oldest friends had died in an accident. I had seen him only a few weeks before as he brought his children up to see me and it was by some distance the best I had seen him in a very long long while. He had suffered with assorted mental problems for years and was often delusional but after one visit to here a few years ago he had sought professional help and was definitely improving markedly. He was holding down a job and was the most lucid and entertaining I had seen him in such a long time. I'm absolutely heartbroken by it.

To temper this though I have the good news that I have a new niece, little baby Orla. She is a wee smasher, although I could almost certainly do without her puking all over my bed too regularly. I now have four nieces and two nephews. I expect to see them all today as it is my birthday. Yay!

I hope everyone has a lovely Christmas. I will have more to say come the new year I'm sure.

P

Stare at the world from deep under eider down

Well hasn't it been a while since I spoke to you last?

And why is that then? Well when I last sat to compose my thoughts for your attention I was talking about a few different things. I did go out on a trip to the Kelvingrove Art Gallery with my aunt and uncle, which was tremendous. I hadn't been there since I was at Glasgow Uni (I graduated in '99 so it was seriously overdue) and I had a tremendous time. I was also planning to go out with the extended family for a meal on the Saturday but I didn't make that due to being unwell sadly. That's been pretty much the way of things since. 

The only positive thing I can really say that I have achieved in the last 6 weeks is that I have taken up guitar lessons. I have a tutor who comes in once a week and he has taken to the perhaps unenviable task of trying to correct the many bad habits I picked up from my teaching myself how to play. I figured if I was going to play the new guitar to a decent standard I would better get some actual guidance. The lessons have been brilliant but even they have fallen foul of my fragile health with having to miss a couple due to the latest bout of infection.

I have also missed several clinic appointments, notably the respiratory clinic as I don't feel I should go to a clinic with an upper respiratory tract infection as I would just infect the other patients at it. I have also missed getting my flu vaccination and if I don't improve rapidly over the next few days then I'll also be missing my bone marrow transplant clinic (and my monthly immunoglobulin infusion). I feel so weak that I seriously think that I am better just staying home and sleeping my way through it.

I've also missed a few planned social trips, with people instead having to come by the house to see me instead of the plan of going out and doing something. I had such great intentions too but I suppose that while the spirit is willing, the flesh is indeed weak.

And so to the thing I really want to tell you about, and the biggest let down of all for me.

I was contacted by one of the transplant team about 5 weeks ago to ask me if I was willing to be a speaker at a conference they were organising for Wednesday the 22nd of October in London (a small conurbation in the south east of England). He had been put onto me by the transplant co-ordinator in charge of my case as she thought I would be an excellent person to give voice to the thoughts of patients in my position. Apparently Kirstie had told him that I was intelligent and articulate enough to do justice to the topic of patient risk in transplant, and more specifically whether they're given enough information prior to transplant. I've done a few of these kind of talks before for medical staff and I have always got great feedback because I give the medical staff an insight into the state of mind of the patient that no doctor or nurse could really claim to have. Now I reckon I've done well over a hundred presentations and lectures at various stages of my research career prior to this so the notion of standing up (or in recent times sitting down) and delivering those thoughts doesn't worry me in the slightest. I have a confidence in my own opinions that borders on arrogance but that doesn't mean that I don't suffer from anxiety. I knew I could talk with authority on the given subject because I have been consented on two transplants now and so have two discrete experiences to compare and contrast. Where my anxiety stems from is due to the weak flesh I mentioned earlier. 

As I mentioned the conference is down in that London and the fact of the matter is I would have had to go down and back in the same day and I had to come to the conclusion that I'm simply not strong enough to do it any more. I look at my trips to the hospital and how exhausted I am after them and even consider the fact that I had to go to one of the rooms at the hotel for several hours on the day of my sister's wedding then there's no getting away from the fact that I can't do something that would involve that level of exertion now. I wish it weren't so but I really am pretty badly damaged these days. I also wasn't particularly keen on the notion of going down and back in a pressurised tin can with the recycled air of a hundred or so passengers and all the bugs that they carry so I had to knock back the Prof's offer. The fact I was relieved when I told him he'd need to find someone else to do it tells you that I made the right decision. I'm not happy by any means but I recognise the reality in front of me.

For what it's worth my opinion is that if we are to talk about 'informed consent' for patients then you quite simply have to give them access to as much information as is possible. The docs tell me that they've been encountering patients who are choosing not to go for the transplant option because they're quite simply too scared of the risks. While I understand that the doctors could get more people to consent to transplant I don't think that it should be at the expense of the informed part of the consent. When I was consented for the bone marrow transplant I was told 8 times in the half hour meeting that there was a risk of dying associated with going ahead with the transplant. In fact the consultant responsible went out of her way to tell me that 'If you're not scared at this point then you haven't fully understood the risks'. Having said that there may well be room within the consenting procedure for the lung transplant team to get more patients to consent by choosing to give patients access to as much, or as little, as they need to satisfy their own needs. Some patients, like me for instance, want to read at length about all aspects of treatment and recovery but there are those who will fixate on things like statistics when they don't actually mean anything to your own case. The example I give is that I was told (because I asked) that about ten percent of patients die on the surgical table due to unforeseen complications in the surgery itself. Now that's interesting but I know it has absolutely no bearing on what will happen to me so I don't fixate on it. Other patients apparently do fixate on things like that so I would say to the doctors to have an absolute minimum that they have to say to fully consent and only to go further if the patient shows that they are inclined to be the sort who would go out of their way to find things out on their own. 

Obviously I'd stretch that paragraph out a little with other examples or it would be a very short talk indeed. To be honest I'm not sure I've structured even that paragraph as well as I'd have liked but if I spent the time to actually put it into a talk like I would have done if I was giving it then it would have been much better organised and clearer. 

In other news I have changed my pain medication protocol. I was using diazepam as a muscle relaxant to deal with the constant leg pain I've been experiencing through muscle atrophy and the side effect has been to make my mind very fuzzy indeed. Now because I was coming off that it was felt that I would need to increase my co-codamol dose to make up for the diazepam. Annoyingly the dose I was prescribed was far too much for me (it had quadrupled) and it led to me grinding my teeth and having a constant metallic taste in my mouth, so I've gone for a middle ground of having about twice my previous dose which seems to be working much better.

One other thing is that today is the 14th anniversary of diagnosis day (you can read about that by clicking here if you're relatively new here). There's not many doctors who would have bet on me still being around this long post transplant so every day I confound them is a mini victory for me. A lot of those days may well be spent under my bedclothes but while there's life there is indeed hope. 

The MIssissipi delta is shining like a national guitar

In my pursuit of a bit of a more normal life and pushing myself  I went out on a night out to the pub a couple of weeks ago that would prove to be a much more expensive night than first expected. First off we went down to Barrowlands Park which is next to the Barrowlands ballroom, which is, as far as I'm concerned at least, the premier gig venue in Glasgow. It being an old ballroom from generations previous it has a sprung floor so when you say the concert was bouncing you meaning literally so. Anyway this park has horizontal line after line of a bands name and the date of the gig that was played. I managed a measly 6 (I've been to more but they weren't represented) whereas Claire had something like 17. I felt very impressed.

Anyway, geography dictated that the easiest way for us to get to our pub of choice was to back along Argyle St and up Glassford Street as they are main roads with wide paths for the chair and avoided cobbles. Now even though this was the easiest route Claire did mention that it wasn't very easy on her shoulders, the same complaint that our friend Tim made when he had to push me a fair distance before. So I began to think about things. We had only accepted that wheelchair as a gift because we didn't think we'd be using it for long and so buying a new one seemed excessive. Well now I've come to terms with the fact that things aren't moving so quickly I thought that buying a new chair would not only make it a more pleasurable experience for me (the old stainless steel one was an uncomfortable beast) but also for the person pushing it and having to put it in their car. The stainless steel one was a heavy brute which only folded up and required a big boot.

So the following Saturday when Claire was visiting me at home I set her the task of finding me a decent set of wheels as she seems to have the knack of finding bargains and she came up trumps with this beauty in the sale at Careco

As well as the normal chair I got an extra gel padded seat which is amazing for the comfort stakes. Also in terms of comfort the arms and foot rests are adjustable to get exactly the right position for you. The big wheels have a quick release and so the whole thing has a much smaller footprint and, because it's a lightweight chair I reckon anyone could get it into their car with little effort. I really am so happy with it it beggars belief. It's been out to the hospital already and my Uncle Stephen says that the difference is night and day. I really should have done it ages ago but you just don't think of these things. I'm going out again in a couple of days to Kelvingrove Museum with my Aunt and Uncle so we'll get a full report of how it handles then as that will involve a lot of pushing around. You may note that I have finally got over myself and will now happily accept anyone pushing me.

The expense doesn't end there though. People with a knowledge of that part of Glasgow will know that the route we took goes past the biggest guitar shop in the country and I spied something I've always wanted but never had the money to buy, a steel guitar with resonator. You know the one I mean, the one from the cover of Dire Straits' album Brothers in Arms. Mind you, that was a classic 1938 National guitar which would cost the guts of two grand. For someone with my abilities a copy will do just as fine, especially as that was £500 as it is. The one I picked (see below) is also a semi acoustic so that now means I have an electric, an acoustic and a semi acoustic, so I've got all the boxes ticked. 

Look, isn't she a beauty. Yes, it's a she. Of course she is. Nothing with curves like that that can make me swoon could possibly be male.

Now I haven't picked up a guitar in well over 4 years thanks to the discomfort of the PEG tube so I've forgotten all I knew so I'm starting from scratch with online lessons so I don't pick up some of the bad habits I did from teaching myself from the complete Beatles songbook. At my best I am an average guitarist but I am enthusiastically so, which is all that really matters isn't it? I'm starting with the electric as the strings I have on it are a thinner gauge than on either of the acoustics as I need to build the calluses on my fingers again.

Now even though all this spending was embarked upon before we knew this, it has been totally vindicated by the very sad news of the death of my Uncle John, who lived in Perth, Australia. 'There's no pockets on a shroud son' as my wee Granny would say so every time I pick up the guitar I'll think of John.

Now John was my dad's older brother and they were similar in many, many ways. Not all of them were what you could conceivably regard as positives but strangely they made them the men they were. If you could conceive of such a thing John was even more gregarious than Frank (or dad as we occasionally called him) and was never done telling stories, often stealing the limelight and leaving his audience in hysterics. The other thing I'll remember of him was that he was so manic, borne of about forty years of living in Australia and having to get everything out in a quick phone call, so what you would get was this amazing stream-of-consciousness garble with the occasional pause for you to say something, if you were quick enough.

My younger sister Janine is heartbroken. She had gone to Australia a good few years ago to stay with John and Anne and they have been regular correspondents ever since. Even talking about all his genuine good points led to the tears coming when I spoke with her about him. My dad's remaining siblings seem to be very practically going about things as far as I can see but I know they're utterly devastated. Stephen said to me that he doesn't have any big brothers any more which was hard to hear. I'll see how Aunt Bernadette is on Thursday on our trip to Kelvingrove and she can fill me in on how Geraldine is and I'll see how wee Aunt Patsy is on Saturday when one of my cousins wants us to meet at her house to release balloons in John's memory as that is what his grandchildren in Australia are doing. We are then going for a meal which fits in with my getting out more program too.

RIP John - I wish I'd known you more than I did.

I'll stick around, but just a promise, nothing binding

I suppose I have to start with an apology to those who I scared a bit with my last post because of the title (The reaper he reaches and touches my hand - from Wake Up by Arcade Fire). My intention was to imply that while death has had his grubby paws on me he didn't get a firm enough grip to shake me loose of this mortal coil. Apparently quite a few people took it a bit literally and thought I was actually in dire straits already. I can only say I'm sorry for scaring the bejesus out of you, but I'll be around for a good wee while yet, all things being equal. What I write down I have discovered doesn't always read the same way and that's my fault as the author. I know I've done it again with this one's title by the way but it is pure ironical and that.

"Perhaps there is only one cardinal sin, impatience" or so says Franz Kafka. 

That being the case I'm doomed for the fiery pit as I am growing tired of waiting for the late night phone call that would herald the dash to Newcastle for the start of a new life. I know averages are nothing to go by but I was kind of hoping not to be an outlier on the graph of waiting time thank you very much.

My level of impatience though pales significantly with that of my family and friends, especially the latter. My family deal with me regularly obviously so they see the gradual changes and can accommodate the fact that I am stronger in some ways (fighting infection for instance) yet weaker in others (pretty much everything else) and so, while I am sure they fret about my health, they get constant reassurances from yours truly that I am ok and my time will come. I have two friends who also see me about as regularly as family and we've got to the stage where we barely talk about my illness any more but that it's fine to talk about their lives too. I treasure them dearly.

Most of my friends however only see me every few months and as I have said on here before I hold no ill will against them for that as I know that real life genuinely gets in the way sometimes. What they see are more dramatic changes in me and not always positive ones. They see that I don't even get about the house as easily as I used to or that I won't even get up out of bed to give them a hug goodbye. That can just be a case of bad fortune on getting me on a bad day for what it's worth - those days are few and far between still. In fact I've (under guidance from the two friends mentioned earlier) tried to push myself and get out a few times outwith my hospital visits to bring some sort of normality to my life. So I have been to visit my aunt and uncle at their place for dinner and a good long chat, the cinema on three occasions (would have been 4 but for unforeseen car issues) and to one of the aforementioned friend's house just for an afternoon of sitting around doing nothing. It was the most fun I've had doing nothing in ages. 

The film that I missed incidentally was the final cinema screening of the adaptation of the best selling book The Fault in our Stars, which about half a dozen people were on at me to read as it deals with teenage cancer. I read it in two days which is no mean feat with my current attention deficit. Now I know I was in my early 20's when I was diagnosed but I was an immature guy for my age and this book about teenage cancer sufferers resonated more with me than anything I've ever read on the topic, which is a lot. I would urge everyone to read it as it is wonderfully well written and breaks the sanctity of cancer in allowing the reader to laugh at aspects of the whole thing. Ever since my diagnosis I've sought out the humour in the condition which isn't easy as you can imagine but it is there if you look hard enough. The author, John Green, makes a point of saying at the beginning and end of the book that it is a work of fiction but he has clearly done his homework on the topic. He references the other book that I'm reading at the moment (I like to have one hard and one easy book going at any given time) The Emperor of all Maladies by Siddhartha Mukherjee and makes one beautifully oblique reference to it in the narrative. It is a Pulitzer prize winning self styled biography of Cancer and is wonderful reading, if a little hard going at times. I mentioned it to my main consultant and, perhaps unsurprisingly for an Oncologist, she loved it too. Anne loves our consultations because I'm one of her success stories because even after all I've been through I'm still plodding along fairly content considering my lot. We get to talking about long term effects of the treatments they've put me through because, being blunt about it, patients don't always last as long as I have so long term effects aren't well known or understood.

Of the other visitors I've had recently, and on the aforementioned trip to the aunt and uncles, my least favoured four letter word beginning with f has been getting used, fair. To be honest with you I see the word fair as being massively egotistical. I have often trotted out the mantra in this blog about how 'The rain falls on the just and unjust alike' so to suggest something as being fair or unfair is to put yourself at the centre of something where you're really nought but a collection of cells that the universe has put together temporarily flying in the face of entropy. There's no fairness to it because it really could happen to any one of us. Even my well massaged ego knows that I'm not being picked upon by the universe.

I've already got the DVD of The Fault in our Stars on pre-order for my friend and I to watch when it comes out in a month or so by the way. 

The reaper he reaches and touches my hand

It's taken me a few days to get my head around what I think of last Thursday's trip to the clinic at the Beatson Oncology Centre. It's my 'home' clinic, if you will and the first place I call when there's something wrong. It's completely random which doctor you'll get as the docs will just take the file from the top of a pile but this week I got the boss, who has been looking after me for thirteen and a half years now. Those with an astonishing memory of my case may remember me telling of how when my case first got referred to Glasgow from Cardiff I had a half hour consultation with Anne whereupon she told me on eight separate occasions about how the treatment I had opted for (Bone Marrow Transplant) could kill me. She is nothing if not frank about the topic at hand and I've always been extremely thankful for her forthright approach to patient relations.

This Thursday as I walked in we exchanged pleasantries and I threw a line in about how there's much more of me than since she saw me last, to which she replied she was thinking of a polite way of saying the self same thing without sounding like she was calling me fat. We concluded that my being a little overweight but steady with it was no mean feat and I should just continue along those lines unless anything changes. It was then she kind of floored me. She said "It's actually great to see there being so much of you because there was a time not so long ago when there was nothing to you (41kg fact fans) and being honest I wasn't convinced you were going to make it. None of us were. You were just too poorly from constantly fighting infection after infection."

It was at this point that I interjected with my standard line about how everybody would be the same under the same circumstances. You just keep on going knowing that tomorrow it'll be better. You just do.

She then said  "Don't kid yourself on Paul, you're far from being a normal patient. A normal patient would have died years ago after what you've been through. You are genuinely one of a kind, and not just from a medical point of view with the BMT and the need for new lungs, but with the manner you have handled it. You're a very special patient."

As I've said I tend to rail against this sort of chat, even when it comes from my best friends who appear to be of the opinion that come the nuclear holocaust it will be me and the cockroaches left, but when a consultant of some twenty years experience in the field tells you that you are indeed a bit special you begin to take a bit of notice and even a wee bit of pride. Pride, of course, comes before a fall and I had barely given myself the opportunity to revel in my stature of super patient before my inquisitive nature got the better of me in the consultation. I mentioned to Anne that a guy Patrick I know from my time at Glasgow Uni is doing some amazing research work on the more resilient forms of Chronic Myeloid Leukaemia (CML), the type that I had. She told me that in her field CML is regarded as a bit of an outsider as it has a pathology as a disease that is quite unlike any other. It is caused by a very specific genetic mutation (the Philadelphia chromosome). This makes it very special and gives much greater scope for a targeted treatment which minimises side effects of the drugs. This is a good thing, clearly.

I am well aware of how lucky I was to be born in a time when there was any treatment available for CML, brutal though it was. It was still a cure and it's not every form of the disease that can claim to have that available. Back then the drug Gleevec was still in its infancy and the analogues of it weren't even thought of yet but such has been their success now that giving people a BMT is very much a third or fourth option for treatment. I mused on these pages a while back about how I sometimes feel a bit bitter that the side effects of the radiotherapy led to my current position on the lung transplant list but I still think that we made the right choice back in 2001 with the information we had at hand at the time. I have to remember that or bitterness will consume me. Yes, if I had taken the course of being placed on the trial for Gleevec I might have gone on to lead a perfectly healthy life but there simply wasn't enough data at the time to suggest that it was the right course of action. The new generation of drugs based on the Gleevec starting point are proving to be even more effective and with fewer side effects and phrases like 'complete molecular remission' are being bandied about. This means there is no trace of the disease in the body and in fact there is talk of even conducting a trial where they take people off these drugs to see if the drugs have indeed proven to be a cure. I'll admit I've found that hard to handle over the last few days. Not even the most eternal optimist could have foreseen that such a silver bullet treatment would have been found and that there could be a cure that doesn't nearly destroy you in the process. That said, what if I had taken the Gleevec route and it hadn't worked for me and I had a resistant form of CML (the type Patrick is working on) then I would have been sicker than the perfectly fit 22 year old that I was and the BMT would have been much harder. You can't spend too much of your time thinking that way. There's nothing wrong with musing on your misfortunes but dwelling on them is counter-productive.

I have spoken to a few close friends and they're wondering why Anne told me about all of this in the first place as they can see why it may be upsetting but that's simply the relationship we have. She's never bullshitted me, not even from the beginning, so she's not going to start now. It was only upon my asking about it that I got the whole story and now I've had a few days to digest it I'm glad I did. I'm especially glad for those people who are avoiding the BMT (only doing 3 or 4 a year now compared to about 2 a month when I was done). This is what research into Cancer is meant to do so I can't get annoyed when it comes up with results that just didn't suit my timescale. 

After the consultation I went for my monthly transfusion of immunoglobulins and it's getting harder to find veins that won't just collapse. It was only on the third attempt that we got one this time and even then the nurse admitted it was more luck than good guidance as the vein wriggled a little just as she pierced it. They've just been abused over the years so instead of using the back of my hand we are going to just try and find useful veins further up my arm to use.It is these immunoglobulins that I reckon have kept me out of hospital as much as the extra weight and general good health. They provide the immune system with a hell of a boost so I've just been fighting the wee infections away without much bother really and nothing really big has come my way in a long while. So many rotations of doctors have passed now since my last admission that none of the ward doctors actually know me, except by name and, it turns out, reputation. Long may it last.

We never learn; hurt together; hurt alone.

I'm not a member of any patient groups because my condition is so convoluted so as not to really belong to any one in particular, but the one I identify most with because of the satellite lung transplant satellite clinic (and I suppose having similar symptoms) is the Cystic Fibrosis group. I don't know any of them personally but know a few of the names on the wider Glasgow scene.

This last Monday we lost a giant on that scene in Anders Gibson. Like I said I never knew Anders personally but recently I found out we have a lot of friends in common (one of whom shared a flat with him back when we were at Uni), so it's a wonder we had never met. You see Anders transcended the Cystic Fibrosis scene such was his force of personality. He did a lot of fund raising but as well as living the closest thing he could to a normal life he was best known for organising city wide football tournaments as well as doing stand-up comedy and performing music live.

He is a great loss to the CF community and I hope to get to his memorial service.

That's not exactly why I'm writing about him though. I am doing so from a much more selfish point of view. You see Anders got his transplant and then, sadly, rejected the lungs. This is my absolute worst fear. To get the high of a transplant and then for you to reject them.

Too many people, myself included sometimes, think of the transplant as the be all and end all; that I'll get it and then my life will take off again. It's much more complicated than that, which I should know fine well having had the bone marrow version all those years ago. It's never straightforward so I have to hope that any post-op complications are minimal. I know that my case is a little more complicated in that I already have two sets of DNA in my body, with my blood and bone marrow (which will be responsible for generating a positive or negative response to the lungs), and all my other tissue, which are the original me.

In other, slightly more light hearted news, I had a rather strange respiratory clinic this week. The doc I got said she recognised my name but didn't know where from and I definitely recognised her too so we spent a good few minutes going back and forth trying to place where. We eventually got to school which was a match but there was nearly ten years difference between us (definitely a feeling old moment) so how could I recognise her? Then it came to us. I had taught for a week in my school back in 2004 (or maybe 2005) as part of what was called the Researchers in Residence programme. As a research scientist I was to go into a school and convince the students that a career in science was the way to go. So I gave a lecture to the Sixth Year Studies class about the principles of rational drug design. She remembered me specifically because I always wore my Oakley protective glasses with orange lenses because my eyes are so light sensitive - christened the AIDS shades by my mate Olly some years previous. The other thing was that her dad who was supervising me on that week long introduction to teaching had in fact been my Sixth Year studies teacher some 9 or 10 years previously and was, depending on your stance, responsible or to blame for my choice of career. He was quite simply the  best and most inspirational teacher of my time at high school. Anyway the doc was brilliant and prescribed me some stuff that will hopefully stop the build up of mucous plugs that have been affecting my breathing until they clear. Prevention being better than cure, this stuff should help me clear my lungs easier before these sort of things build up in the first place.

I am also engaging in some more publicity work on a couple of fronts. Some of you will remember my brief appearance on the STV news a while back pushing for greater numbers to not only join the organ donor register but to have the chat with their families about what they want done in the event of something tragic happening. Well the team have been on touch again and are keen to use me in some way. The nature of which isn't known yet - it could be another telly slot or a press piece or even to be used in patient literature. I'd be happy to any of these. There's also been contact from the transplant team about whether I'd be ok if it so happened that I got a call for transplant when the BBC were in filming for a program on the ex-vivo lung perfusion process that I've spoken of on here before. Kirstie, the transplant co-ordinator said when I called 'Oh, we've just been waiting on you getting in touch'. Apparently they feel it's right up my street to talk about myself. I wonder whatever gave them that impression?

So, to Anders. The world is a slightly less bright place for your passing. I wish I had known you the way my friends did.

She's like a detuned radio

Well hasn't it been a while? I have genuinely not had much to say except for wee updates so I decided to keep them and lay them all out in one post.

Firstly I had to keep up with my profile for the transplant team in Newcastle by having blood and sputum samples done and a bone density scan taken too, as you need one done within the last two years to fit their criteria for fitness for the operation. I don't hear back about the samples unless something is wrong and I'm glad to say I haven't heard a peep so that's obviously all fine. I did hear back from the scan though and I've to stop taking the medication designed to boost bone density as apparently I now fall into normal parameters again. This is very good news as my period on steroids 10 years ago had left me with a mild case of osteoporosis. They measure the bone density of your spine and hip bones and compare them with the norm for someone of your age and sex and I was something in the region of 75% to 85% for them. I must be much higher now for them to remove the drug from my normal regimen. I've still to take the calcichews because, even though I don't need the boost of the calcium for my bones, they come packaged with vitamin D, which I need because I don't get enough natural sunlight.

At my last trip out to get Immunoglobulins I got a bit of a scare. My oxygen saturation levels were ad low as 82%. On a normal person you'll get somewhere between 97-99% and I'll (on 1 litre of O2) routinely achieve 91%. A normal person would be floored by that but my body has grown accustomed to it over time. When I lived in Belfast and had my care transferred to the respiratory team over there they didn't believe that I should be functioning with sats so low that they actually kept me in overnight, refusing to believe that I could function like that. They finally let me go when it was clear I was perfectly fine. Now back to the immunoglobulins. We decided to let me relax a bit and see if the sats would climb, which they did to 86%. Now all this time I was chatting away to the other day patients in the room and talking perfectly lucidly with the nursing staff too but when my treatment was over and my sats hadn't increased any further I asked them if a doc could check me over. No sooner had he done so and found nothing overtly wrong I noticed that my oxygen cannister was actually set at zero. I must have knocked it getting out of the car or maybe even went the whole morning without oxygen. Now it was a mighty relief to turn it on again and my sats shot up to 92% and so they let me go home but it reassures me that, if ever I do go out and something happens with the liquid O2, that it's not as scary a proposition as I may have previously thought.

This coming bank holiday weekend I'm getting visitors. On Sunday I'm getting my most regular visitor Claire coming over and on Monday I'm getting two old friends from my time at Glasgow Uni coming through and we'll maybe go out for some pizza. They both know a fellow that I seem to be linked with, albeit one step removed, through many of my friends who had a transplant earlier in the year. I don't want to talk about the details as they change so very quickly that you can never be too sure what is actually going on but he isn't having the best of times post transplant. I can only hope he recovers as, from the many people I know who know him, he is a widely adored guy in Glaswegian circles.

Monday also brings about the fifth anniversary of the day I walked into Liverpool Royal Hospital and this whole sorry mess started. From then it took two months of treatment for the original fungal pneumonia till I got swine flu and then my immune system went mental and started shredding my lungs with it's over-enthusiastic attempts to fight the infection.Another few months and another chest infection and I wasn't allowed out the hospital without 24 hour oxygen. I had lost a power of weight. I was 41kg so I had the feeding tube put in my stomach so I could gain the weight required before I could even meet the transplant team.By this time 6 months had passed already - time flies when you're having fun - and my respiratory team and I set about meeting all the criteria needed before you could even get on to the consultation list with the transplant team.It would be another year and a half before I got to see them at the satellite clinic after I had met all their targets (I was well over the Body Mass Index required by this point) and they asked me if I wanted to be put forward for transplant. After a fairly firm yes they agreed I was suitable enough to go through their boot camp of tests in a four day stay down in Newcastle. It took three of these stays before they agreed to put me on the active list, by which point I was just past the 3 year point of the first infection. I had fought long and hard to get there. Now 20 months have passed since I've been on the active list and I'm not ashamed to admit I'm worried.

You see, I am blood type O negative which means I can donate to anybody but they have to be type specific when donating to me or matching me for such things as a transplant. We O- types make up only 7% of the population so my chances of a match aren't great so it's really all down to blind luck if I get one. In the meantime I am slowly (very slowly, don't get alarmed) declining but I'm doing my best to keep that at bay as long as I can. I have my nebuliser to help me breathe a bit better and my muscle toning pads to try and keep some muscle in my legs at least, although I would be the first to admit I don't use it as often as I perhaps should. I'm noticing that I need to sleep a lot more and there's no point fighting it. This is frustrating. What is also frustrating is the time that I am awake my concentration span is pathetic. I've got piles of books to read and no ability to get through them. Same goes for films and tv series - I don't have the attention span needed for some of them and find myself lost in the more intricate plot details. I've talked before about how I lose my train of thought often and can even be mid sentence when it goes but the real kicker is when I can't remember something. The comedian Frank Skinner maintains that if you can't remember something you should never look it up as it allows the brain to be lazy. If you genuinely don't know something then look it up by all means but if you've simply forgotten it then you must force your brain into remembering. I have adopted this and so wasted four hours the other day trying to remember the word hyphen. When you value your mind as much as I do mine then it's a right kick in the stones when it malfunctions.

In other news I have a new, hospital style, reclining bed. I got it through the generosity of my sister's in laws when a member of their family passed away and I have to say it's been a revelation. A big double bed that I can tilt the back up so I can sleep in a more upright position is quite simply brilliant for someone like me. It aids my breathing no end. Right that should keep you lot going for a while. I'm away to sleep in some comfort.

Go placidly amid the noise and the haste...

...and remember what peace there may be in silence.

So says the start of the Desiderata by Max Ehrmann, which hangs in a frame at the front door of my house. I often sit and read it as I am filling up my portable oxygen cylinder before any venture out into the big, bad, scary world. I say scary because I now find myself to be a little anxious when I am outside my house and away from the safety of the oxygen concentrator and it's permanent supply of oxygen. It's not so bad when going to hospital appointments because I know there's always help at hand when I'm at one of those fine establishments but recently I have knocked back every offer of going out somewhere, in fear that I won't be comfortable or that something might happen with the liquid oxygen cannister. All very stupid when I stop and analyse it but there you go, it's there. Paul Stefan Kilday is actually scared of something.

Before putting fingers to keyboard tonight I decided to re-read this whole blog from beginning to end and while I do have a certain turn of phrase I can go on a bit. This post will probably be no different but if I make a point I have a terrible habit of repeating it. This tautologising bollocks isn't down to my thinking that you, my lovely audience, aren't getting it. It's simply that my drug addled mind has forgotten that I had said that point before, or that I thought it was so clever that it bore repeating.

The other thing I noticed is that I am almost relentlessly upbeat about my position throughout my posts. A few dips here and there but nothing utterly bereft of hope. That isn't to say that this is representative of my time, only that these more lucid moments where I am in general good spirits happen to coincide with the times I decide to put something down in writing. When I'm not feeling the best I don't feel much like typing it all down.

With that it mind I'm going to try something unique. Whilst in relatively good spirits, as proven by my actually typing this, I'm going to share my worries about my potential treatments with you from a coldly clinical point of view.

• Firstly I have to address the heffalump in the room. There is a chance I'll get an opportunistic infection before I get a transplant that is strong enough to not only take me off the list, but to shuffle me off this mortal coil. I take all manner of drugs to stave off the worst infections and haven't been an in-patient in well over four years now so I'm doing well but that doesn't stop me from worrying what the next infection could do.
• Secondly, the transplant itself. 10% of patients die on the operating table. That's just a stone cold hard fact of the matter. All these patients are in real danger of not surviving the process because of their condition and it is an incredibly invasive procedure. It actually amazes me the stats aren't worse than they are.
• Thirdly, rejection rears its ugly head. My body, thanks to my dear sister's bone marrow, struggles to accept that even my own internal (and external for that matter) organs are my own, albeit less so lately, so what are the chances it will cope with a third set of tissue in my body. Will it be able to tell self from non-self and if it does will it wildly over react and reject the lungs? A massive drug regimen is in place to cope with all this stuff - I've been through it before so I know what I'm signing up for and hopefully it'll work well.
• Worry number four is that, even if I do escape rejection that peripheral bits of damage that have been done to my body in the last five years (in reality since Oct 2000 when I was diagnosed really) will mean that I won't be able to go back to my preferred career of teaching. After all, who thinks it's a good idea working with kids when you have a suppressed immune system? Of course I have a plan for this, I go back and complete the PGCE and then work in a Further Education College. I did that as part of my training and they gave me a job on top of my training to take the night time A-Level class and I loved it so maybe that's where my path lies.

So there you go, the worries of a tired and frustrated man, all through the prism of a relatively clear mind. No point really worrying about them as they're all outwith my control but then it's never the things over which you have control that you fret over, is it? I'll try and stay as positive as this blog paints me out to be. It won't take much effort - I'm mostly that guy anyway.

Although loneliness has always been a friend of mine...

So I took a decision much against the wishes of the medical team over this last week past. At my monthly trip to the clinics I mentioned to them that I wanted them to remove the gastrostomy tube that I've had in for four years now to help me maintain my weight.

I honestly wasn't being rash, I had thought long and hard about it, especially after the period where the site for it on my stomach was leaking acid all over my skin and burning it. It was happening every time I sat upright which is kind of important as those were the times I was, for instance, using my nebuliser and eating. One Saturday night when I had a friend in visiting I was sitting up talking to her and all of a sudden noticed my t-shirt was saturated and my skin was burning as my stomach juices were literally pouring out and burning the flesh. I lied to her (obviously) and said it didn't hurt but it wasn't the most comfortable evening I've ever had. I called out the District Nurse on the Monday and she came out and replaced the tube and gave me a spray that would act as a barrier on my skin to any more acid that did come out. This was great at its job but the fact is acid was still coming out of the site when I sat up, which was clearly not right.

Now I hadn't used the feeding tube in three weeks anyway so, in my mind at least, I could maintain my weight simply with the meals I was eating but I had to convince my consultant that it was ok for me to survive without it. Their fear was that, even though I was a stable, decent weight that if I caught an infection I could lose the weight that I have spare quickly and fall under the limit imposed by the transplant team. I calmed their fears by telling them I had got a chest infection over the holidays and lost the grand total of 1kg, which left me another 6 to spare. All of which was achieved without resorting to using the overnight feeds.

Another, longer chat with the dietician along the same lines ie that I was doing well without the feeds, and I eventually got them to agree that I could get the tube out. So this Thursday just past I got the nurse out to the house to remove the piece of plumbing that's been sticking from my stomach for four years. So, in what would turn out to be remarkably low tech procedure, the nurse took the water out the plug that held the tube in place out and then simply placed a dressing over the hole to let it heal all on its own. The only thing I had to do was give it a bit of time for the internal wall of my stomach to close over enough to cope with food and drink. I now have what looks like a second bellybutton that feels very strange as it starts to heal and knit together to heal completely.

In the first night I did what I promised I was going to and slept completely starshaped spread out all over my bed on my front, without any bit of plastic to stop me. There's lovely.