So let's set the world on fire

So if you go back a month or two you may recall that I have been getting some help from respiratory physiotherapists. They gave me a nebuliser and saline solution to take twice daily as well as a little device called a flutter, which you blow into and bounce a metal ball bearing, causes your airways to open up a bit. I don't know whether it's one or both of these two additions to my daily regime that has led to an improvement in my breathing but there has definitely been one.

I had the respiratory nurses out for their half yearly check that I'm coping ok at home a few days ago and when they placed the probe on my finger to measure my oxygen saturation level they got a figure of 92%. Compare this to just a month or so ago when my normal figure was 85%. It's little wonder I've been feeling so much better and able to do so much more just from having so much more oxygen coursing through my veins. I've even managed a few trips out to take advantage of it. A few weeks back I went out to meet my mate Marty who was over from Belfast for a drink. If you had told me months ago that I would be drinking Jaeger-bombs at any point in my future I would have laughed in your face but there I was happily throwing it back with the rest of them. Now, with the added weight and the extra colour about me from the increased oxygen sats it quickly became apparent that even in a wheelchair and with tubes going into my nose I was probably the healthiest looking person in the pub outwith the staff. Marty and I always favoured the perhaps less salubrious of drinking establishments in my two years in Belfast and the same held true over here. It was a REAL pub. I thoroughly enjoyed myself doing something a little bit wrong for once and, prompted by others, even got involved in a bit of a sing-song. A slightly tipsy, wheezy sing-song admittedly but a sing-song nonetheless. It may have been the drink talking but three separate men that night referred to me as a 'handsome wee bastard'. I will genuinely take compliments like that anywhere I can get them.

And so it comes up to the Christmas festivities. It's good to know that I'll probably be able to manage to go out to all the things we usually organise around my birthday and Christmas. There's usually a big meal with all the guys I went to school with and a decent pub session in between Christmas itself and New Year that gets a decent turnout from everyone who lives away from home. I'm even getting a visit from some of my friends from my time doing teacher training in Liverpool. I love this time of year.

Nothing more, nothing less, only love

I usually try and formulate what I want to say before putting a post together so I can come across all eloquent and intellectual but I'm going with a more stream of consciousness effect for this one because I've got lots to say and no really sensible way of tying the different threads together.

Firstly I had an endoscopy last week to replace the tube that goes into my stomach, through which I pump liquid food to keep me at my pleasantly plump (and healthy looking apparently) current weight. There really is no fun way of having an endoscope stuck down your throat to remove the old one by physically hauling it back up and out and the general misery of it is compounded when the sedation they give you hasn't really worked. It was a shite way to spend an afternoon and all the coffee and biscuits in the world didn't make up for it. I don't know if it really is linked to such a relatively minor procedure but I felt rubbish for the whole rest of the week. Anyway the replacement one is in and this time it is only held in place with a water filled balloon rather than the mushroom fitting of the old one. This actually means a bit more maintenance as you need to replace the water in the balloon weekly, for which I apparently need the help of the district nurse. She is coming tomorrow to show me how to do it and we've already agreed that if she's satisfied that I know what I'm doing she'll just supply me with the equipment and let me look after it myself rather than have her come every week for such an easy job. After all I looked after my Hickman lines perfectly well back when I had each one of them popping out my chest and that required a sterile environment and all manner of paraphernalia. Anyway, if all else fails I've got two sisters who are nurses and I'd rather use their time than a district nurse who probably has dozens of patients a day to see.

Secondly I feel I need to address something and this is the thing I'm really struggling to put into words. Today I was reading about a post lung transplant patient who is having complications and needs to have a biopsy done to test for lymphoma and it brought into sharp focus for me a bit of an issue I have. I worry almost incessantly about what life is going to be like post transplant for me. I do this because I've done it once before and know full well that the treatments doled out by the medical profession often come with horrific side effects. After all my current predicament of needing new lungs is a direct result of the treatments I had to cure me of Leukaemia. I have no idea what fresh horrors life post transplant could bring my way, I only know that I at least want to see what life has to offer me. In talking briefly to this other patient today I told her that it's ok for her to be scared and to let her friends know that because, and here's the crux of what bothers me really, I think that friends, with the greatest will in the world, mostly think that after a transplant you're past the worst and will keep getting better. Whenever some problem arises they are so used to us patients being brave or strong or whatever other adjective they want to throw about that they don't always see that we're just as terrified as they are, and that is our own damn stupid fault because we don't bloody tell them.

I have a few friends who think through all the consequences of what my post transplant life will be like and I'm very lucky to have them to talk to about these sort of things, but for every one of them there's at least five who don't really understand that my life post transplant is going to be a never ending drive to avoid infection because my immune system will be compromised. Even under the best scenario it'll also have a periodic round of bronchoscopies (tube up the nose and down into the lungs - a true joy) and biopsies for the rest of my natural life. I know normal is a figment of my imagination but my life is going to be so complicated for so many different reasons that I'm not sure that even I can comprehend it fully. So how can I expect other people to? The answer really is that most of the time I don't, but when I see someone clearly struggling with their lot in life and people are offering little other than bland platitudes about how they'll be fine because 'they're a fighter' or that 'you've beaten worse than this before' I reserve the right to get hacked off on their behalf because words like that don't help. Not really. Sometimes when you're crying through fear you don't need someone telling you it's going to be all right, you need someone to tell you they know that the situation is shite but that they'll hold you as you cry.

On a slightly lighter note, while I've never been a great James Bond fan, like most young boys I watched all the films and, being as obtuse as I sometimes am, I always loved the one that is generally regarded as most lowly of them, On Her Majesty's Secret Service. Yes, George Lazenby was rubbish but unlike most of the other films there was a somewhat coherent plot, a wonderful score and an ending that beats all the other films hands down. It ends with the Louis Armstrong song We Have All The Time in The World and I have made a promise to myself that post transplant I'm going to find a kareoke bar and sing that most appropriate of songs. I'll cry my eyes out when singing it and no doubt will take a few people with me but I want to do it.

With all that's gone before, my motives never felt so pure

So the respiratory physiotherapy I've been having is definitely having a positive effect. They're not miracle workers and they have commented that my lung function is particularly low, but at least it's a stable low and not getting worse, but that they can work to make the most out of what lung function I do have. I've already mentioned that they've given me a nebuliser to break up the stuff in my lungs that I can't normally cough up. Well last week they gave me another wee tool to hopefully open up my airways a bit more too, which should help me get the best out of my lungs. It''s actually a relatively simple little tool called a flutter which consists of a pipe which you blow down a tube into a chamber which contains a small plastic cradle for a ball bearing. Now when you blow into the tube the ball bearing lifts and then bumps off the roof and settles into it's cradle agaiin and this repeats again and again giving it the fluttering effect of the name.

With a little bit of practice you can get it to flutter at about 15Hz (15 times a second) which is apparently optimum for opening the airways because it resonates with the bronchi in some way I'm not entirely sure I completely understand but it's something to do with a positive pressure being created. It's obviously (along with the nebuliser) having a bit of an effect as I've felt I can breathe much easier in these last few weeks than I can honestly remember. 

I've even been out to the pub last Saturday night when my best friend was home from America, and quite a few other people I didn't really expect to see were out, which was just fantastic. One slightly dramatic side to that night out was that I was having such a good time that I barely noticed the passing of time and my liquid oxygen actually ran out. When the cylinder empties it doesn't do so in a linear manner, by which I mean when it's still half full that doesn't mean you've got the same length of time left that you've used up already. This is because when the cylinder starts to empty there is a greater space above the liquid for it to evaporate into so it can quite rapidly go from what appears to be half empty to completely empty. Thankfully one of my friends Lynn is pregnant so she could give me a run home in the car, which was most fortunate as it would have been an hour or so for a taxi. That said that episode did show that I can go for about an hour without oxygen and there aren't too many ill effects except for feeling exhausted the next day but that would have been the case anyway.

Seeing so many people on that night out and having a lot more visitors over the last few weeks or so has been absolutely great. It's far from a normal life but it's a new kind of normal for me and that makes it much easier to live with.

Come play my game I'll test ya

I have a new mechanical addition to my treatment regime. After a visit to the Respiratory Physiotherapist, ostensibly to learn methods of making the best out of the lung function that I do have through some techniques to clear my lungs of the sort of nasty things that everyone breathes in but can get rid of quite easily, I was given a machine to help. Lung tissue has small hairs called cilia (see accompanying picture) which all move in unison a bit like 

sea anemone do under water. This is important because it moves mucous in the lungs along in a fluid motion and hopefully out of the lungs. Where the cilia are damaged, like mine are, 

they all move in a disparate fashion so any mucous in the lungs really just kind of stays there and accumulates until, in my case at least, I cough up a nasty, solid lump. In the days leading up to that my breathing becomes even more laboured and wheezy because the mucous lines the airways making the pathways a bit thinner so less air can get in or out.

Like I said in healthy cilia the mucous gets carried along atop them but it's with the aid of a layer of liquid and this is something that I lack so what the Physio gave me is a nebuliser (a machine that makes liquid solutions into vapour for you to breathe in) and saline solution to hopefully coat the cilia that I still have to help clear the nasty stuff in my lungs. I've only been using it 5 days and already I can feel a notable difference. Normally I have a very dry cough and crackly sounds on my chest that I can hear even without a stethoscope but these have diminished markedly already. Now while it's not a terribly glamorous thing to talk about, the joy of being able to clear my lungs of nasty green stuff has made me genuinely happy.

We never got round to the breathing exercises to help further but I'm going back to see her in a week or so to get started on that. I've spoken to a few people who have Cystic Fibrosis about this and they say it makes a massive difference to them and they've got similar issues to mine so I'm very hopeful about being able to do even just a little bit more. I've even ventured downstairs more often than I normally do in the last few days so I'm clearly not as worried about the stairs as I normally am.

This has not been without incident though as I was down seeing my niece and tickling her the other day and she decided she was going to try and tickle me back and accidentally pulled on my feeding tube. Ouch. Thankfully a toddler doesn't have the real strength to pull it hard enough to really hurt but it did make the eyes water a bit.

I was out the weekend before last for an old school friends birthday meal which was fantastic as well. I went through a wee period there when I wasn't confident when going out of the house at all but I went along without even taking the wheelchair and just about managed. The meal was excellent and I even had a couple of drinks for the first time in a year or so. My best friend Dave is home for a few days over the weekend so here's hoping I can get out to the pub to see him. If not he'll come by but I'm beginning to place some importance on pushing myself so I'm determined I'll get out for a bit to see him. Confidence seems kind of self fulfilling, once you get a little bit of it, you just get more and more and more.

Na na na na, na na na na, hey-ey-ey, goodbye

I should know better than to start any post on here saying that nothing much is happening. Today, too much happened and not a great deal of it was much fun.

I was at the Beatson Oncology Centre for my monthly going over and Immunoglobulin (immune booster) transfusion. My consultation with the doctor went fine and I carried on just as usual to the day care unit where I was to get the transfusion. As well as that though I was to get the PEG tube (the tube that goes into my stomach to feed me liquid food overnight) replaced. Mine had been in a couple of months shy of three years even though they usually only stay in for two. Mine was still working perfectly so none of the dieticians or nurses saw fit to remove it as long as I could still rotate it and push / pull it at its entry site. I've still been able to do that so the only reason it was being replaced was because the tubing itself was discolouring from prolonged use and, due to having to cut it every time the end of it needs replaced, it was actually getting quite short. Now when it was inserted it was done endoscopically with a surgeon placing it into my stomach before puncturing just above my belly button and into my stomach and pulling the correct end of the tube out. It was secured by what they call a mushroom fitting to stop it coming out. This is where the problem lies. Even though I can still rotate the tubing on it's axis and move the tubing in and out the mushroom fitting which should, with a certain level of brute force and ignorance, be able to compress and come through the hole leaving a space for a replacement was steadfastly refusing to co-operate. Both nurses had a decent go at it but it was simply too painful to carry on. Without wishing to blow my own trumpet I have, according to many, many doctors at least, got a very impressive pain threshold. I've had loads of things done over the years where I haven't flinched regardless of what they've thrown at me so I feel I have an air of authority when it comes to pain, but this was a mixture of pain and outright discomfort that wasn't worth pushing (or actually pulling) any further. So now, joy of joys, I have to get it replaced the way they put the fecking thing in in the first place, with an endoscopy tube down my throat. I can get it done at a day surgery and it's not really that big a deal as it'll just be local anaesthetic and sedation for it but I'd still rather it have just came out easily today like they promised.

After they had given up on that the day unit nurses then took turns at using me as a pin cushion. It took three separate nurses 4 attempts to find a vein that they could use, and that was after placing my hands in a bowl of hot water and trying to heat them up with a small electric blanket and all the tricks they try to get your veins to rise to prominence. All through the last dozen years or so I've always had great veins for either getting blood from or for pumping drugs into but the first stop veins that have always been so useful have had their day. They've survived a lot longer than in a lot of patients so it is pretty much amazing that it took until now before they started to fail but it's still a real pain that they're gone. Each time a nurse tried to use one of those veins it looked good and then it just collapsed - a sure sign that they've just been used too often. So like a junkie we are now looking for less obvious veins to use and eventually they found one in my inner arm that was capable of holding a cannula in place so they could feed me my immunoglobulin goodness.

One nice aspect to my day there though was getting to see my old nurse from when I was admitted for the Bone Marrow Transplant all those years ago. Collette was in fact the nurse who shaved my head when my hair started falling out after my radio and chemotherapy. She now works in the apheresis unit which I rarely have to ever venture near so I only ever see her in passing but she came over for quite a long chat today. I was filling her in on where we are in the pursuit of new breathing gear for me and she was making me insanely jealous with her chat of leaving to go to Cuba on holiday tonight. It really was lovely catching up with her. She caught me a little off guard when she commented on how much I had, and still have, to go through and how I've dealt with it all in such a wonderful way. When my friends tell me things like that I tend to brush it off and tell them they'd be the same if it happened to them, but this is a nurse who has seen hundreds of patients like me and all their responses and she said that I have handled the shitty hand that I've been dealt with more grace and patience than pretty much any patient she's ever had to deal with. Allied to the testaments of my various consultants which echo what Collette had said I'm beginning to come around to the way of thinking that I have indeed dealt with what has been thrown my way in a relatively unique manner. 

I actually feel quite proud of myself.

You've Never Walked Alone

There's not really much going on just now but I thought I'd talk about the BBC programme Horizon from Monday night. It's almost always a great show and this was no different. It was on the topic of what are referred to in the popular press as 'superbugs'. I've never liked that title as they're just normal bacteria, evolving in a perfectly normal way to survive certain conditions imposed on them. That's just me being pedantic though. The reason I bring this up is that they are the things that really terrify me. They are bacterial infections that don't respond to commonly used antibiotics and so can kill people easily in an outbreak. Of course everyone can catch these infections but what usually happens is that people catch these resistant infections when they are in hospital for something else. I've got a greater chance of getting an infection that would require a stay in hospital so I, theoretically at least, have a greater chance of exposure to a drug resistant strain. Now I haven't been hospitalised for an infection for three years now so it's not that big a deal but this Horizon programme brought it into sharp focus just what a reality it is that we have misused the antibiotics we do have at our disposal. People demanding them from GP's, or in some countries just being able to buy them over the counter, for things that they have no efficacy for is a big issue but the widespread use of them in the food industry to allow animals to live in very close quarters to each other without infection spreading is also a massive issue.

The only other thing that's going on just now is that I've become a neurotic mess. Where I told you previously being put on to the active transplant list had given me a solace after years of fretting as to whether I would even be allowed on the list, I have now graduated to jumping every single time either the house phone or my mobile phone rings, wondering whether that's the call that will send me down for the transplant. I'm sure I will calm down over these next few weeks and that it will be when I am least expecting it that the call actually comes.

I've been deeply affected today by the news of the independent panel's findings on Hillsborough. I watched it all pan out on live television at the time and went to the tribute game that Celtic played against Liverpool a few weeks after it and stood with my family, arms interlocked with fans who had travelled up to Glasgow for the day all crying our eyes out. I was living in Liverpool when the 20th anniversary of the event came around and because I lived just round the corner from Anfield I walked up to the stadium and found myself amongst a massive number of fans of many clubs (and none) and found myself chatting to strangers from all over the country who felt they 'just had to be there'. Again there were streams of tears. The scenes in the front of St George's Hall in Liverpool today just set me going again. Now these people who have waited for 23 years for justice have a little consolation that their truth has finally come out. I have a tattoo on my wrist that says Quis custodiet ipsos custodes, which roughly translates as Who Watches the Watchmen? It is entirely appropriate to consider that very question today when our police force will fabricate stories to cover their own backs and nearly get away with it. The answer to that age old question is that it is up to us to keep the 'Watchmen' honest and if it weren't for the tenacity of the families of the deceased they might well have got away with it too. Now that the independent panel has ruled that the police and emergency services not only failed in their jobs but tried to cover up their failings, the findings of the previous inquest have to be readdressed. It is the very least the people deserve.

Give me a second I, I need to get my story straight...

I've been agonising over this post for weeks now primarily because I needed to get my fuzzy brain into gear and able to put down what I really think about the subject but also because I know it closely affects people that I care about.

You see I'm going to write a bit about a friend of quite a few of the people that I went to school with who unfortunately died as a result of secondary complications after a kidney transplant. She unfortunately developed skin Cancer which was misdiagnosed by GP's and the overall feeling is that she wasn't given adequate information to give 'informed consent' prior to her transplant. You can read more about it

here

Now what you may ask am I doing getting involved in something that is so emotive and you'd be right to do so. Well the reason for it is two-fold. Firstly I have to say that it is entirely at odds with my own experience of two transplant procedures (bone marrow and double lung) where I have been given nothing short of mountains of documentation and consultations detailing the risks of what I was to (or in the case of the lung op am hopefully about to) undertake, whether they be the immediate risks of operations or the long term risks of the mind boggling radiation levels I was exposing myself to, and the short and long term risks of the drug regime I would need to be on to suppress my immune system post transplant. In fact in my first meeting with my main consultant who took me through the whole process I was told eight times in a half hour consultation of how my treatment for the bone marrow transplant could kill me. To say I was given informed consent is to massively underestimate just how well drilled I was. The crucial point relating to the above case is that I was told expressly that both the radiotherapy and the immunosuppressant drug Cyclosporin that I would have to take would massively increase my chances of developing skin Cancer later in life. These things of course are relative because even massively multiplying the chances of developing skin Cancer by the normal prevalence in the population statistically leaves a relatively small risk. So Shaz was really, desperately unlucky to contract it.

That brings me to my second point - you are told of many such risks (like I said 8 different ways to die) but it is my experience that even armed with this knowledge that patients deal first and foremost with the thing that categorically is going to kill them and then worry about the statistical likelihood of developing other conditions based on your treatment should they present themselves in the future. So I get to wondering whether in the above case if they were in fact better informed of the risks associated with Cyclosporin (which is after all a group 1 carcinogen) would they have still opted to go ahead with her transplant? My own experience coupled with the dozens of other patients I know who have undergone transplants is that she would have gone ahead with it even accounting for the risks. Of course she may not have, and been the exception - I don't wish to speak on behalf of anyone, especially not someone with no option to correct me if I'm wrong. After all like I said earlier transplant patients are nothing but pragmatic and do tend to focus on the tangible threat in front of them and will only worry about the long term implications if they actually have a long term to even worry about.

All of this though is to miss the point entirely. My experience is palpably different from that of Shaz. She didn't receive all the information I did and I wonder why that is. Part of me wonders if it is down to just how tenacious I was when I was first diagnosed where I was constantly asking questions of the transplant staff coupled with them knowing I had a degree in Medicinal Chemistry so they were prepared to talk to me at length about what the treatments did. I also knew a fair bit off my own back from having studied anti-cancer drugs as part of my degree and have amongst my friends a pharmacist and a doctor who were always available to answer any questions I wanted clarification on. Most patients don't have that background or are fortunate enough to have friends that are able to help as much as mine though and so rely entirely on what their doctor tells them and here is the crux of this case. Shaz was desperately let down by her primary carers and by the doctors who didn't recognise a lesion as being skin Cancer even though her medical history should have set alarm bells ringing loudly.

And so to my conclusion. Even though it doesn't relate to my own experience I am firmly behind the campaign by Shaz's family to ensure that absolutely no patient is left without the power to give INFORMED consent for their own treatments.

I hope that everyone understands what I just wrote and gets just why I have really struggled to compose my thoughts about it. 

P