I'm just tired and bored with myself

After my last post a few people got in touch and congratulated me on my honesty. Personally speaking I don't think I was any more honest than any other post I have made, just that I let people in a little more on how hard it's actually been for me while my body slowly breaks down. So maybe I have been dishonest by virtue of the omission of certain things. This has always been my way though; I always filter out news from my assorted consultations and tell people what I think they need to know. This differs for everyone as some can handle all the gory details whilst others just want a broader picture, all of which are fine. I'm going to be a bit more honest today again though and talk about my last trip to the Beatson to see my main consultant. I'll get to that later.

Today is Cinco de Mayo, a celebration of something or other in the Spanish speaking world that I don't know anything about. For me the date holds great significance though as it is the day that I walked into a hospital in Liverpool complaining of feeling not quite right. 4 years later and everything has changed. Trying to take stock of just how much it has changed is enough to make your head spin so I'm not going to revel in that too much, except to take note of the fact that 4 years is a sizeable chink out of anybody's life and that is fundamentally quite depressing. What a waste. I had so much to offer at that time as a teacher and lecturer at the local college and I've since spent the bulk of my time staring at the same four walls.

Anyway, on to my consultation with Grant, one of the consultants who's been with me for the 12 years or so since my bone marrow transplant. I had a talk with him about how even though I have put on a healthy amount of weight and am infection free I still feel that I getting weaker on the respiratory front. I feel like over these four years my breathing has got steadily worse and it's an irreversible problem so I feel weaker. He put his hands up and said 'We all know that but we're doing everything we can to, if not stop, slow down the breakdown of your lungs'. Unfortunately any damage from any tiny infection just leads to a decrease in my lung function because my body can't repair itself correctly so gradually over the four years my breathing has got a bit weaker. We then got on to talking about the permanent pain in my muscles and joints. This is actually related to my poor lung function because, and again I quote Grant 'The less you do, the less you can do'. Now while that sounds like a rebuke it isn't, it was merely an acknowledgement that I can't do the exercise to improve my muscle form simply because the flip side of what he said is also true, the less you can do, the less you do. This leads to a vicious circle scenario where you can't exercise so you lose muscle and because you lose muscle you can't exercise. This is where I find myself and it's all down to my lungs not working. The less they do, the less they can do.

I also had a chat with him about the fact that like a baby or an old man, I seem to need a mid afternoon nap every single day now and he simply said that is just another thing I'll have to deal with. My body is basically shutting down because it needs the rest so I've to take it wherever I can get it and not to worry about it.

Now is where the honesty comes in. I am in pretty much constant pain because of the muscle wastage. It has led to pain not only in the muscles but also in the joints as some joints (the patella for example) need muscle either side of them to stop bone grinding against bone or cartilage. I take painkillers and muscle relaxants to help but they don't totally eradicate the pain and I often find myself counting down the minutes till I can take another dose to ease the pain and discomfort. There is of course the option of taking stronger pain medication but I believe my brain is in enough of a state of fuzziness as it is without adding to it with serious pain medication so I have to just grin and bear it with the pain. I thought it was about time I shared it with you that I am actually in pain as well as struggling to breathe. For some time I've also planned for when people are coming to visit so I take a dose of painkillers just before they arrive and they don't see how much discomfort I can actually be in. I always want people to see me at the best I can possibly put forward partly due to my own vanity, but it's not just that. It's really stupid I know but I always try to make visits from people as mildly traumatic as is possible for their sake. I know deep down that people know my health is in a terribly perilous state so this facade is probably unnecessary for them but I'll keep doing it because it makes me feel more comfortable both physically and mentally. It's good to have my mental faculties about me when people visit, although I do find myself apologising a lot as sometimes my mind can just go blank and I'll totally lose my point, sometimes midway through a sentence. If these blog posts come across as eloquent at all it's because I've taken very great care over writing them and have gone over them a lot before hitting the publish button. I'm nowhere near as eloquent in a normal conversation I have to admit. 

On the topic of this blog, it has just had its 10,000th view which is pretty mindblowing. That's a lot of people reading my musings. If anyone has taken anything at all from it then I would be very pleased indeed but like I say at the top it's primarily for me to ramble on and it's been great for that. Here's to another 10,000.

I get slandered, libeled....

The head coach of UK cycling Dave Brailsford has a central dogma to his training methodology. To improve as an athlete in your given discipline there should be an aggregation of marginal gains. That is to say if you have a natural talent then to optimise it you don't need to radically change anything, instead you take each variable and optimise that and they will add up to a marked improvement overall. You might wonder why I mention this in relation to myself but it is because if you take that central dogma to be true then you might be inclined to say that the reverse is true as well. To wit, no great big thing need necessarily go wrong for there to be a marked decrease in ability, just lots and lots of small things. I hope he would spare me the tortured paraphrasing but I'm calling it my degradation and small pains. 

In a couple of weeks it will have been four years since this journey of mine towards transplant began and while there have been events of varying degrees of seriousness, it is the small everyday breakdown of my abilities that is getting to me. A couple of years ago I found it markedly easier to get out and about so I have to acknowledge that there has indeed been some decrease in my state of health. That said, every visitor I get in tells me I look healthier and they're kind of right and that's down to staying infection free and keeping weight on. I look better but I don't necessarily feel it. I feel weak and that is down to muscles just wasting away. That's the degradation. The small pains have the same source - my muscles and bones ache almost constantly and whilst medication does give me temporary respite I don't want to up the doses of the medications any higher than they already are.

My year breaks down into definable blocks. Aside from the weekly sports I watch I can basically see where I am in the progress of the year by what sporting tournament I'm watching at any given time. Last week it was the Augusta Masters, this week (and the week and a half after) it's the World Snooker Championships. After that it's the French Open Tennis and the assorted football cup finals before we reach into the summer and we have Wimbledon and the Tour de France and on and on it goes. It is one of the few benefits of having all this time off and a low attention span. Sport is something that I can just passively absorb. And I do. Lots of it.

Man! I Feel Like a Woman

I had two appointments this past week at the hospital, one being heart and one for lungs. The heart one was to check lipoproteins (cholesterol and triglycerides). Since I went on the liquid fat diet my cholesterol level leapt up to over 8 so has to be controlled through the use of a statin drug, which is working very effectively. I was waiting an age in the reception area because the consultant wanted to see me personally. When I was last there we talked about my family's rather colourful cardiac history with the previous generation having had assorted heart attacks and triple and quadruple bypasses and the likes, so we were keen to see if there is a genetic predisposition in the family towards cardiac problems. The genetic marker that can tell you about this predisposition is only found in men so we took a blood sample and sent it away for the test. If you have spotted a flaw in this you're a better person than either myself or the doc. It seems he got a rather sniffy letter back from the testing facility telling him he must have mixed up a blood sample as they were unable to test the blood as it was XX rather than XY. In other words they couldn't test it because it was female blood, which they assumed had just been mixed up rather than the actual reason that I do in fact have female blood. After my bone marrow transplant I have my sister's blood. Why we never thought of this I don't know but it gave us a right laugh. So we don't know if there is a genetic predisposition to heart problems and can't find out unless my brother gets a blood test and the chances of that are probably slim. My big bro is not particularly fond of needles. And anyway as long as we control my cholesterol level while I'm on a deliberately fatty diet and monitor it when I get back to a normal one then we shouldn't have any problems in that area.

The other appointment was across the hallway the next day in respiratory and I have never had as quick an appointment at that clinic ever before. From arrival to leaving was 25 minutes. It was amazing. They just wanted to check that I was coping ok with the nebuliser and the flutter tool that I use to try and break up the nasty stuff in my lungs that normal people can deal with just with a strong breath in and out. I am getting on very well with it but I'll arrange to go and see the respiratory physio again in a few months to get some replacement kit for the nebuliser and to get it checked.

Not the most interesting of updates really but just wanted to keep people updated.

A life less ordinary

A journalist friend of mine once spoke of the way I write as being littered with tautologies and having spent time over the last week reading back over this blog from the beginning I can see his point. When I have made a point well that doesn't seem to be enough and I remake the same point over and over to hammer it home. There's even been one occasion where I talk about the film Contagion where basically the whole first paragraph of two posts are the exact same, even down to the analogy I make. It seems I've come up with the same point totally independently on two separate occasions because I certainly couldn't remember having made the first post. I put that down to my memory not being as good as it normally is and that my brain is a little bit fuzzy a lot of the time.

I made what I consider to be a positive step on Friday just past. I went out in the wheelchair. It was my mate Mikey's wedding reception and had it been any normal night out I would probably have given it a miss as I was feeling a bit wheezy all day but I simply had to get formal verification that Mikey had actually tied the knot, so I bit the bullet and went but took the chair and allowed myself to be pushed about in it. You may not remember but I've always felt really self conscious in the chair and didn't like the way people stare at you when you're in it but I rationalised it by the fact that if I can't get over that in a room full of most of my favourite people then it's my own problem not theirs. Everyone treated me in exactly the way I would expect of them and I had an absolutely wonderful time, although I only lasted 4 hours before a bit of pain and discomfort allied to the wheeziness led to me going home a little before the actual end of the night.

It was a slightly bittersweet affair for me as it did serve to remind me that time is marching on and more and more of my friends are getting married and having kids and I'm almost at risk of my life becoming infantilised. It's all down to mitigating circumstances clearly but listening to everyone else talking about their lives has brought into sharp focus that I am a 35 year old man that has never been married, doesn't have any kids, never had a mortgage, never had a car (and in fact can't even drive). To put it simply I haven't done most of the things that you would maybe consider the actions of a grown up. Some might say that it's actually impressive that I've managed this and they may well have a point too. I've never needed a car or a mortgage or any of the other trivial things that mark you out as a grown up (like a career for instance) so why they seem so interesting to me now is an utter mystery. It's probably only because I don't have them - the graass isn't always greener after all. To be honest though things have changed the longer I've been stranded at home with my life in limbo. I used to quote the line from the Aztec Camera song Oblivious 'They call us lonely when we're really just alone' to describe my situation but more and more lately I've found that I do actually feel a bit lonely even though I'm never short of people to talk to. I've stopped badgering people to visit and, with it being the winter months, many of them are staying well clear of me anyway for fear of infecting me with something one of their kids have brought home with them. Much though I miss the company I'm glad they're all aware enough of my situation to stay away in those circumstances.

I was hoping to go out last night too as lots of my friends that were home for the wedding are only back for the weekend but when I woke up yesterday I just knew I was going nowhere. I was just too exhausted. I'm still wheezy today but there's no actual sign of infection, I just seem to be going through a period where my wee lungs are struggling a bit.

In other news my middle sister is in hospital having had a non-functioning kidney removed on Tuesday and she is struggling a wee bit. She's got a post op infection so is generally just a bit miserable and the irony of a renal nurse having a non functioning kidney has led to a situation where she knows just a bit too much about what her situation is. Nurses and doctors really do make terrible patients. It looks like she'll be in hospital still for a good few days yet which will be no fun at all for her. I can't go in to visit for fear of catching something in the big long ward she's in but I spoke to her on the phone this morning and while she made little sense thanks to the pain meds she's on I'm glad I spoke to her.

15 minutes

So the interview I gave the lovely woman from STV news aired last week as part of the ITV From the Heart campaign. It being a section on the news I never really expected it to be more than a tiny wee section of the 45 minutes we had chatting. My part in the feature was to explain what it's like to be waiting for the phone call. Here, watch it for your self and make your own mind up

http://youtu.be/Xv_OWIhoLgs

Personally I'd have preferred it if we had longer so all the bits where I spoke about how important it is to let your family know your feelings about being an organ donor or where I talked about how I find things so much easier being the patient than I sometimes think my family find it because they can't always help were what got aired but those points were covered tremendously well elsewhere in the campaign. I can't really complain about my wee slot except now the viewers have a vision of me struggling to get showered that they could probably have done without. Having said that context is king and in the context of that wee segment what you didn't hear was me explaining why it is such a difficult process. I have to turn my oxygen up for a while pre shower to get ready for the exertion involved. I have to undress slowly because even that tires me out and I then have to just sit on the toilet seat with my head down at my knees gulping for breath. It's only when I feel fully ready that I swing myself round to my board across the bath and slowly proceed with cleaning myself and, not that you would know it from the video, that's when I usually shave. It is a long slow shower and the process of getting dried is no less strenuous than getting undressed is. The oxygen remains at a higher level than it normally would until I am fully dressed and breathing easy again. Everything is done slowly, that's why I said it's like a military operation. Everything is meticulously organised.

Now I don't tell you that because I want you to feel sorry for me. I want people to understand how difficult things are for me but I don't want pity. Sympathy yes, but pity no. I'm not sure I can adequately explain what I mean by that but there is a clear distinction in my head. Someone who pities you would (and do) patronise you in ways that they don't even understand they're actually doing but someone who sympathises simply says "That's a shite state of affairs" and gets on with talking to you as normal. I've spoken before about how grateful I was post bone marrow transplant to meet an old school friend's mum and for her to just ask straight out how things were going and not to talk to me in any way differently from how she normally would. That is sympathising but not pitying. I find it more difficult to describe the other way round but I know it when I meet it. I've seen it in the eyes of people I've met who ask about the nasal canula that supply me with oxygen and you can see the cogs turning in their head thinking "Poor bastard, I'm glad it's not me". And that I feel is probably the difference. Someone who sympathises with your plight does so from a place of caring for you, not from selfishly thinking that they're just glad it's not them. Aye, maybe that's it - with sympathy it's about you, with pity it's about them. That's not to say they're bad people - they're really not. I just don't need to be around them. Thankfully, due to the amazing friends I have, a rarely have to be.

Graffiti with punctuation

I watched the film Contagion a few nights ago. It's a very good and realistic film about what it would be like if there was a global pandemic of an unknown virus. It looks at the everyday stuff like how it would be passed on all the way up to governmental attempts to control it. In light of the fact I was one of the unfortunate souls who actually contracted swine flu in the last of the lower level one of these things I found it incredibly interesting just how much it reflected the response from the broader population about any of the last few of these things (SARS, avian flu, swine flu) but the bit that really got me was that in it there was a blogger who wrote about how some alternative therapy actually carried the cure. When talking to a scientist who is working on it, the scientist pithily remarks that "Blogging isn't writing, it's graffiti with punctuation.". Now this obviously borrows heavily from Truman Capote's famous line about Jack Kerouac's book On the Road. To whit, "That's not writing, it's typing." but it is still an incredibly important point. There is no need for a blogger to provide provenance for what they say as it's purely opinion based and not subject to the same scrutiny as 'print' journalism. The blogger in the film got better but whether it was based on the special, herbal cure he was promoting (and making money from ) or whether he was just one of those people who could just fight off the infection is never made clear but he, as a scientist would put it, regresses to the norm, so there's no way to know.

It's important to mention the media this week, seeing as I'm graduating from my position of graffiti artist to the relatively lofty heights of an interviewee on the Scottish National News with my opinions on transplants, notably what it's like to have one but even more so what it's like to be on the waiting list for one. I'm in a relatively small group of people who have had one and am in need of another so a person from NHSBT/got in touch to see if I would be interested in being one of their people all over the country taking part in a week long push to promote blood and organ donation in their regional news programmes. So I'll be on the STV news on Tuesday the 12th hopefully getting my point across without making too  much of a fool of myself. I know I'll cringe seeing and hearing myself on the telly but it really is important to highlight the need for more people to sign up for organ donation (and blood and bone marrow donation for that matter) but also to reinforce the point that everyone should let their family know what their feelings are on the subject. There are a lot of organs that never get harvested because, even though the person who has died wished for their organs to be used for donation, their family objects because they don't want that and they don't get used. I sympathise completely with any family's wishes on that front but are we really to take their opinion over that of the person who put themselves forward for donation in the first place? I'm not so sure. From a purely selfish point of view I would like us to adopt an opt out system where it is assumed that everyone that can be used as a donor will be unless there is an objection from the family. I feel in a very short time people would become used to this and it would rapidly become completely accepted as the norm so why don't we try it?

It will only be a couple of minutes on the news but it's an incredibly important message so if you're at all keen to see me in action tune into the STV news at 6 o'clock on Tuesday. For those outwith the STV region I'll try and get a youtube video of it up as soon as I can. I spoke with the lovely interviewer for about 45 minutes so all the very best to her in her attempts to edit it down to something useable.

It was actually my second interview last week as on Monday I had undergone a very similar interview about what it's like to be a patient waiting on the phone call from the transplant people. This time it was the team from the University of Newcastle who are carrying out the clinical trial study on Ex-Vivo Lung Perfusion, the procedure where they take previously unusable lungs and put them in a modified heart lung bypass machine and put them through a process with oxygen saturation and perfusion of solutions that make many more lungs viable for transplant. The Dr who interviewed me started by saying that it'll only take about half an hour of my time. Obviously not knowing me very well she was somewhat taken aback when we were still chatting nearly an hour later. Still, it's all useful information for the team who are using this cutting edge technology.

As I've said before I often get sought out for these sort of quality of life questionnaires as I tend to be a lot more expansive than the average patient. I've also given a couple of lectures to teams of docs and nurses which they've been incredibly positive about because it's far too easy for them to see their patients just as puzzles for them to solve so to engage with one as a real person who can actually teach them something is an important lesson for them. All too often I get used when I'm on the ward too as the registrars like to send the medical students in to me as they know I'll put them through their paces in a kind way. I get a hell of a buzz from it I have to admit. I suppose it appeals to the teacher in me.

The prospectoscope

If December was a great time to look back on what had been an 'interesting' year then January should allow me time to wistfully muse on what the year ahead has in store for me.

One thing utterly dominates obviously - whether I receive the call for the lung transplant. The average waiting time for this is between 12 and 18 months and I've already been waiting 6 so if the law of averages does its thing then it should in fact be this year that I get the call. This was the opinion of most of my friends I met throughout the holidays too and while that is borne out of hope rather than rational analysis the idea appeals to me. I don't want to go through another full year of waiting. I'm 35 now after all and I'd like to get back to something approaching a more normal life. I know that my life will never be 'normal' but something approaching it would be nice.

I got a little bit of an infection over Christmas but it seems that I can recover from such things much easier than any point in recent memory, which is great. If I could go through the whole year with only these mild infections I would be a very happy man indeed.

One new thing that has come up is that I responded to an appeal from the press office of the transplant authorities to send them your story of transplants. Having had one and being in a holding pattern for another I felt my story might be worth telling, so I sent a brief synopsis (not easy for me) to the press officer who has got back to me and said that they would love to use my story in some way, whether that be in the media raising awareness of transplant donor lists and all that encompasses, or working in unison with the Scottish Parliament to do the same. I'd be thrilled to get to do this although logistically I'd need help with the oxygen for whatever they may require me for. 

I've always been keen on sharing my experience, as this blog alone shows, but it's not the only way I use my experience to aid others. I've given lectures to medical staff before about what it's actually like to be in the patient's bed throughout the whole process of diagnosis to treatment to post treatment care with very enthusiastic responses. I also get used any time I'm a patient in the wards for some reason. Registrars are always keen to use me to help train the medical students as I am very relaxed with them and usually put them at ease. I can even prompt them in the right direction should the situation arise that they need a helping hand. Once, in Liverpool after the registrar in charge had half a dozen students go through their paces with me, one of them broke off after the session to have a much more informal chat about my history and what I was going through at the time as they had never seen anything like that before and it was refreshing to have someone so comfortable talking about what they had gone through in terms of medical procedures as much as what they went through emotionally. It turns out that as soon as something is over a lot of patients choose to forget as much as they can about the grim things they've endured. I'm not like that apparently. It seems I'm too interested in the whole process to forget anything really, even with my somewhat fuzzy brain.

I was thinking about my fuzzy brain the other day. Your brain uses 20% of the oxygen your body takes in just to keep going. Whilst I only have 16% of my lungs functioning fully I still manage to get over 90% oxygen into my bloodstream, but even then I feel that I'm not working at full capacity. Not even close. I've said before that my body is working in an oxygen debt situation not that much different from altitude sickness. In that situation the first thing that shuts down (to preserve oxygen for your brain) is your stomach which is why mountaineers are sick above a certain altitude with low oxygen. After that they start to feel disorientated and that I feel is what I suffer from. Of course I've been that way for three and a half years now and my body is so used to the oxygen debt that I'm no longer sick all the time but I can't get away from the fact that I feel confused some of the time and will often lose my stream of consciousness midway through a sentence. For someone who holds great stock in his ability to try and get a point across it's a truly awful affliction. There's nothing I can do about it till I get new breathing gear though so I try to not get too tetchy about it.

There was a program on BBC1 Scotland last night about what are referred to as orphan drugs, which are highly specialised drugs for very specific cases that have different guidelines for use (and therefore cost) than normal, everyday medications. One of those mentioned was Imatinib (or Gleevec) which is the drug of choice to treat CML, the form of Leukaemia I had. It essentially renders CML a condition that you just live your life with, constantly treating it as you go (like type I diabetes for instance). This is a real point of contention for me as I think drug companies should be searching for cures rather than making customers for life with their incredibly expensive products. It brought to mind a conversation I had with two of my sisters (both nurses) the night before about how much has been spent on keeping me alive so far. In all honesty if the transplant team in Newcastle had told me "Sorry, you've had enough spent on trying to keep you alive already" I honestly couldn't have argued against them. Thankfully for my sake that's not how they do it but I know that I've already been incredibly lucky to have had the treatments I've already gone through as they are mind bogglingly expensive. I'll never be able to pay it back in tax and national insurance in my lifetime but that's the greatest thing about this country, we have a cradle to grave health service that helps those the most in need. It's not perfect; far from it, but from this patient's point of view it is absolutely peerless.