Wednesday, 14 May 2014

The Gots And The Needs

Something a little lighter than last week's hospital visit perhaps. Or perhaps not for my wrath is rising and my poison pen is at the ready, hand twitching as I grip this metaphor and strangle it like QE2 euthanising pheasants.

One of my favourite childhood pastimes was collecting stickers. More specifically football stickers. There were slight variations. I remember a Return Of The Jedi related album and even one linked to the spew-inducing cheesefest that is the 1980 cinema version of Flash Gordon. Winged Brian Blessed and all. Yet these were minor interruptions. Football was the mainstay of all things Panini in my formative years, and I had every album from around 1979 to something like 1987. Some classic images remain and can still pop up in conversations with my friends even now. Aidrieonians goalkeeper Ernie McGarr's outrageous claim to be 25 years of age, Motherwell's Hugh Sproat's inexplicable moustache, and the early 80's Swansea squad insisting on being photographed in their stockinged feet. McGarr was 75 if he was a day, while the sight of Merseyside legends like Latchford, Toshack and Ray Kennedy in Swansea's white socks is an indelible one.

With the World Cup in Brazil fast approaching I, like any other sane sports fan, am getting far more excited than is advisable, particularly given my recent health worries. Should the miracle happen and Steven Gerrard volleys England to victory in the last minute of the final it is quite likely I will have one more, fatal, palpitation. Since the chances of this happening are pretty remote I can probably get away with saying that if it does happen it will all have been worth it. What else is there to live for once you have seen England win the World Cup in dramatic fashion?

Well the answer to that of course depends very much on whether you have completed your Panini sticker album. In my excitement I have decided to delve back into the world of nerdy collecting. It can never be the same, of course, but that is true of a great many things that we continue to do until we keel over and die. Some have suggested that collecting stickers is childish. That I obviously have too much money. Gary Barlow has too much money. I just have imagination and a liking for nostalgia. Besides what should I be spending my time and money on? Something more mature like tattoos? Sunbeds? The gym? Or should I be glued to Masterchef, hanging on the every word of the latest TV chef and food fascist telling me what I can and cannot eat? The kind of people who have labelled me childish are the kind of people who would declare a preference for either Team Edward or Team Jacob. Enough said.

Money isn't an issue quite yet, anyway. I haven't actually bought any stickers. The only ones I have came free with the album added to a few extra I acquired from a very kind work colleague. She bought her album for the kids. Right. I bought my album for the kids too. All I need now are the kids. Imagine my surprise when I realised that it takes at least nine months for those to arrive. By then the World Cup will be a distant memory, the sad-song montage of recently failed English penalty-takers a fading, sketchy memory. But I'll be able to refer to my album and see the unlucky men in more happier times, or at least more neutral times as they pose stoney-faced for their Panini mugshot. I've never filled an album but I confidently predict that my barren run is about to end. I won't be allowing the fact that only a limited number of shops stock the stickers, or the fact that I have just read that it will cost me at least £64 to complete the collection stand in my way. By the way, that figure is optimistic because it assumes you won't buy any stickers that you already have. Or twicers as we used to call them.

Twicers. In my childhood these were probably the most valuable currency. They were like hard drugs in Baltimore in an episode of The Wire. Except nobody came flying around the corner in a police car to beat us with baseball bats when we tried to swap them. Some lads would have piles and piles of twicers, hundreds upon hundreds of the things. I had a fair few myself and I have got one already this year, one Cristiano Ronaldo. That won't be worth anything in 10 years time if the gelled genius does a Maradona and single-handedly leads Portugal to glory, will it? The trade of twicers brought with it a familiar refrain as between you and your dealer you would work out which stickers were valuable to you and which you could ignore. You all remember it. He flicks slowly through his twicers one by one, showing you what is on offer and you start up....

"Got. Got. Got. Got. Got. Got. Got. Got. Need!". You'd scream the word 'need' like you were asking for oxygen rather than a small card with a sticky back with a picture of a footballer with a bad haircut on it. Doubtless you had prepared for this meeting by painstakingly writing down the numbers of all of the stickers you were missing so that you would be able to quickly decipher which were 'gots' and which were 'needs'. As your collection progressed you would get up to around 25 or 30 'gots' before you found a 'need', but was just a sign that you were heading in the right direction. That you were so nearly there. And yet despite several of these sticker summits I never quite got there.

This time. More than any other time. As the 1982 England World Cup squad once sang....

Saturday, 10 May 2014

Use Your Infusion

Since this is a memoir, and the title would suggest it is, then it's occasionally necessary to record stuff that happens to me. Even if it is not funny or even if it is, frankly, a bit gloomy.

On that basis then I have to tell you that I had another encounter with my friends in the medical profession this past Wednesday. It is well documented on these pages how much I hated hospitals, how I was absolutely convinced that doctors and specialists considered us expendable and how, therefore, it was always imperative not to go anywhere near a hospital or even a doctor, nurse, porter or hospital chef unless it was absolutely necessary. That all changed last summer when it became absolutely necessary to go to hospital, and I miraculously spent a whole three days in the care of the NHS and didn't die. Maybe they are worth listening to, I thought.

So I agreed to resume consultations on the previously taboo subject of my waning kidney function. At my first consultation with my nephrologist Mr Khalil in December last year I was advised that I would require an iron infusion. Naively I believed this to be an injection, like a flu jab or something. However, during a visit to my GP recently I was informed that it is a slightly longer process than that, more similar to my experiences of last summer when all kinds of crap was pumped into me in a bid to get my potassium levels back down from the stratosphere. That worked pretty well, eventually, so all things considered I came to the conclusion that this iron infusion malarkey might be worth a go. Except it didn't happen after my first consultation with Mr Khalil. At my second in April he told me that this was because the blood tests I'd had in December showed that my haemoglobin levels were not low enough for anyone to be bothered sending for me. He said he would look into it again after the results of my April blood tests and would organise it if necessary.

If you have been keeping up with my neurosis via these pages you will not be surprised to learn that I was suitably outraged when I received the appointment letter at the end of April. It gave me just a week's notice before the scheduled infusion. Nine days, to be precise. Normally I need at least three months to psyche myself up for a hospital visit, particularly one involving actual treatment. More than that, it brought me down and unearthed my tenuously dormant negativity. The only sensible conclusion I could draw from receiving the appointment letter was that my haemoglobin levels had dropped dramatically according to my latest blood tests. I'm not even sure what the consequences of low levels of haemoglobin are but that didn't stop me from blindly panicking for the next hour about all kinds of possibilities. At best I was going to be at the hospital for hours on end getting assaulted by nurses, and at worst I was going to be kept in for six months on some kind of high dependency ward for people with low iron levels conjured straight from my imagination. This is quite clearly madness but when you have had stage four kidney disease for the last eight years and you have watched dozens of your friends and acquaintances pass on from conditions relating to their disabilities you get a whole new perspective on your mortality. I never thought about it before, but now I think about it every day. I'm thinking about it now but we'll leave it.

Fast forward nine days. My appointment is at the Royal Liverpool hospital. According to my appointment letter no other hospital in Merseyside can offer the kind of treatment I need, which added even further to my anxiety. I woke up on Wednesday morning, May 7, in a strange old state. My mind was clear and fine. I'd had enough time to rationalise the whole thing and knew for certain that I was just going for one little injection, and then a bit of a wait while the iron dripped into me. Then I'd be on my way. Tell that to my insides. My heart was inexplicably pounding in a manner reminiscent of the palpitations I suffered last July and August and my stomach was churning. I was nervy, on edge and quite categorically out of my mind. It's a shameful carry on when you consider what other people, people I know, have to go through at hospitals. But just because there is always someone worse off than you does not mean you are in control of your anxieties.

Parking the car was almost as much of an inconvenience as the appointment itself. I pulled up at an outdoor car park and was told that there was only one space remaining and that there was no disabled parking available. I would have to drive back up the hill and go around the block to the rear of the Q Park. The same Q Park I could see in front of me barely ten yards away. Nothing is ever that simple, is it? At least I was calm by now. I crossed the street and eventually found Ward 9B. As the name suggests it is on the 9th floor. The lifts are not easy to get into because they're not that big and everyone wants to use them at the same time. When I reached 9B I was struck by the smell. I don't know what it was but it smelled like death. Yet more unnerving was the fact that I had to pass some very ill people hooked up to all manner of machinery to get to the ward reception and introduce myself. I was sent to wait in a very modest waiting area with blue chairs. Everything is blue in 9B from the chairs to the signposting to the mood of the patients, myself included. Sitting opposite me a woman was waffling inanely into her mobile phone despite several signs requesting that you turn your mobile phone off while on the ward. The worst waiting area I have ever seen is topped off by the fact that nurses and cleaners wander back and forth around you completing their important but unsightly daily tasks. There's no segregation between you, the day patient, and the bleak realities of a nephrology ward.

When visiting the bathroom another awful memory was brought back in quite revolting circumstances. When I was first diagnosed with kidney disease they made me carry out this test in which I had to collect all of the urine I passed for a 24 hour period. This involved lugging a huge bottle around with me on my daily business, half-filled with my liquid waste. As I lock the door of the disabled toilet on 9B I notice that someone else has been asked to perform the same test. Except they have managed to leave their half-filled bottle on the toilet floor. Discarded. If they were not going to keep their sample to submit it could they not have at least poured it down the toilet? It was only two feet to the left of them, after all?

Fortunately I was not left to wait too long. Within five minutes or so I was called in by a very happy, smiley, enthusiastic nurse to a small room at the back of the ward. Her name was Fran and she asked me to transfer from my chair on to a recliner. I just about managed this but only because the arms on the recliner could be moved. Had they been fixed it would have been impossible. Quite how anyone with even greater mobility problems than me is expected to do this I don't know. It was quite a relaxing recliner though, I'll say that. Had I not been about to be prodded and poked and injected with all kinds I could easily have fallen asleep there. Fran and I had the inevitable conversation about my work, which was always going to happen given the nature of it. Pity I'm not allowed to tell you about it except to say that I'm CIA and what you are reading is classified. There were two other patients in the room having the same treatment, a stark reminder of how bleak the future might be. Mary, to my left, was positively yellow and although seemingly in good spirits, looked very poorly indeed. The man to my right looked even closer to the end, but he must have been somewhere in his mid 80's. He'd gone past yellow and was fast approaching green. It didn't stop him from shamelessly flirting with the nurses. Whatever gets you through it, I guess. Fran fiddled around pointlessly for a while but she managed to find a suitable vein first time around which at least spared me from the kind of butchering I received at Whiston last year. After that, all that was left to do was have my blood pressure checked regularly by a slightly more intimidating nurse. She thought that she knew me from somewhere, that my name was familiar. I hoped not but then as any wheelchair user knows, unwanted local celebrity is a symptom of your condition.

My blood pressure was too high again, so the nurse in charge came to speak to me about going along to a chemist to get it checked again in a few weeks. She advised me to speak to my GP if it remains high. 'A stitch in time' she said, adding that high blood pressure is one of the biggest causes of kidney deterioration. I lied and told her that I would do as she asked, but really all I wanted to do was get back in the car and drive home. At the end of the treatment I had to wait another 10 minutes to see if I had any reaction or allergy to it. Reassuringly, Fran told me that if a reaction is going to happen it would happen quickly so 10 minutes of hanging around would be more than enough. With no reaction forthcoming I thanked everyone for their help and left hastily. A member of hospital staff ushered me into a lift which was only supposed to be used for patients being transferred in their beds. He then got out of the lift leaving me to explain to several people why I was in the wrong lift. Fortunately nobody seemed to mind too much. Before I could escape to the street though there was one more reminder of the horror of hospitals as an elderly lady in a bed was pushed into the lift, looking like she might expire before the start of Eggheads. I sincerely hoped not.

Most people only require this treatment once so hopefully this particular process is not one that will be repeated. But on the way home I refuse to look that far ahead, thinking only of the fact that it is 30 days to my holiday in New York and that, all things being equal, I will not be summoned to a hospital appointment between now and then.

Some hope.

Monday, 5 May 2014

The Help

You may have already seen this one on Facebook. As soon as it happened I failed miserably to save it for the blog. I'd had a few beers at the time and so resisting the temptation to share it on Facebook was always going to be a big ask. So this one is for those of you who have me on Twitter and not Facebook. Curiously, that is pretty much everyone who follows me on Twitter. For some reason the people who see fit to befriend me on Facebook are a totally different set of people from those who follow me on Twitter. I don't really get that but we're not going to waste time and effort trying to figure it out. What I can tell you is that the only reason I didn't share it on Twitter is that I couldn't do it justice with 140 characters. It's a common problem and why I tweet very rarely except for links to nonsense like this and my work on

On Friday night I was out with a couple of my mates. Now that we're quite old nights out are genuinely uneventful and so not normally worth writing about. I could have written several novels on the events of nights out ten years or so ago. I didn't because firstly I am exceptionally lazy (as evidenced by the fact that this is the first entry in Memoirs Of A Fire Hazard since April 2, some 33 days ago) and secondly because what happens on a night out when you are young and foolish stays on a night out. You really, really wouldn't have wanted to know.

So we'd just watched the rugby (that's league, not union obviously) in the latest incarnation of The Market when we decided upon a change of scenery. Consensus was that we are now too uncool for the likes of Zoo Bar and Bar 44 (as if cool people go there) so we headed to The Sefton instead. It was my round, so I headed to the bar and ordered the drinks. There were only three of us. Three bottles of beer, then. After I had paid for the drinks and put my change away I picked up the first bottle from the bar and began to pass it over to where my two friends were sitting. Literally about three yards from the bar. We're all wheelchair users but still this was not a task which seemed beyond the realms. As I started to pass the beer a man offered me his help.

"I'll take that for you, mate." he said.

"Oh no, thanks mate. It's ok, I've got it." I replied.

He asked again. I declined again. Politely. Every bit as politely as I had the first time. I passed the other two beers over to my friends and we got on with the business of intoxication by alcohol. It must have been ten minutes later that the man who had offered to carry the drinks for me tapped me on the shoulder. For an awful moment I thought he was going to tell me about how he knew 'someone like me' (someone drunk, then?) or about how he works with 'people like us' (St.Helliners? rugby fans? What? Who do they mean?). He didn't say either of these things, but instead introduced me to a new way in which the general public can get their attitude to disability so staggeringly wrong.

"I just offered to help you with your drinks and you fucked me off." He complained. In no other world but his had I 'fucked him off'. I'd just politely told him that I could pass the drinks the short distance to my friends myself. Thanks very much. I promise you that this is the absolute truth. It's not that I'm incapable of being rude to able bodied people desperately trying to save me from my awful affliction. I've said some things to able bodied do-gooders that are right up there with the rudest things you can say to anyone. Once, on a rain-soaked night out in Liverpool I responded to a man's declaration that he had a brother 'just like me' by asking whether the brother in question was piss wet through. Sometimes I'm rude, impatient, obnoxious and a bit of an arsehole. But not on this occasion. I'd just said no thanks. I tried to explain this again to the man. No dice;

"You did, you spat on my help!" he announced. Another attempt on my behalf to deny not only rudeness but now the allegation that I had 'spat on' his help fell on deaf ears. No, not deaf ears. Stupid ears. He heard and understood what I had said alright, he just couldn't get his head around why anyone with a disability would want to refuse help and go to the trouble of passing their own beer to their mates. Then he hit me with a withering bombshell;

"Well that's it now. I'm not going to be offering my help to any disabled people, and that's because of you."

With a theatrical wave of his arm he stormed off before I could respond. I didn't mind that because he was embarrassing everyone and I really couldn't be arsed having the debate with him any further. But I must apologise to all my disabled brethren at this point. Never again will you receive the help of a half-cut, self righteous inspiration porn addict in the watering holes of St.Helens. I'm sure you will agree that this is a monumental loss to the disabled community on Merseyside. I'm not sure how we are going to cope, really. Until now, we have all been going out of our houses only on the basis that someone will help pass the beer or, in some cases, get us from A to B. I remember once pushing up the ramp at Thatto Heath train station when one of these help for the disabled crusaders actually put his hands on my back and began pushing me forwards to the summit. I was a good deal ruder to him on that occasion, and may possibly have taken a swing. If I put my hands on an able bodied person in such a manner, even if I claim I'm trying to help, I'm very likely to be prosecuted.

So now all that help we receive has gone, and it is all down to me. I can only again apologise and express my deep regret. Our lives may never be the same again....