Thursday, November 30, 2006

I wrote this yesterday but was somewhat preoccupied last night with the news headlines (which I will comment more on at a later date) and forgot to post it.

Much calmer now, and have been chewing it all over in a more rational manner (new improved rationality aided by multitude of helping hands offered out at a seconds notice, and a shopping trip followed by a rather nice steak baguette at café rouge in the sparkling winter sunshine that showed itself today). I think that I need to realign my perspective slightly again – for me, when something begins to become overpoweringly difficult, it helps to change your angle of attack slightly.

Perhaps a cheats way to ensure you feel more victorious but when things are out of your control your perspective is the one thing you can keep a hand on. Essentially there is too much focus on transplant right now. This is understandable, as no matter how determined I am to enjoy it, life is pretty tough now and when struggling I focus on the easiest escape route, which is the possibility of a transplant and of healthy functioning lungs. However this focus is also why I am struggling so much when I see that possibility begin to wane. It is much harder to contemplate the idea of no life-saving transplant and that CF might take me and my lungs down fighting, let alone begin to make peace with that idea.

Interestingly this is the same old quandary I spoke about exactly a year ago in my interview in the Times. Such a dichotomy; it is what propels me to keep going yet is the source of endless frustration and angst. I like writing about these feelings and different thought patterns as it allows me to look at them from a slightly detached perspective and then I find them more interesting than terrifying. It is a tricky business really. I want to keep fighting; I know that and am 100% clear on that fact. In my mind, the thing that gives me most motivation is having an aim which you are fighting towards. For me personally, transplant is that aim. However at present, this aim (due to it being merely a possibility) is actually creating problems as I am too focused on the end goal.

Perhaps it is like running a marathon (clearly I am hypothesising here as I have no experience in this area) I would imagine that when doing so, it is important to create mini targets and goals to aim towards, as focusing on the finish might make reaching it seem all the more implausible. After all what is the point of having a goal if you are so blind sighted by it that you can no longer appreciate the little milestones you encounter? And there is so much too look forward to today, tomorrow and in the near future, Christmas festivities being just one huge rainbow on the horizon (sparkles, glitter, fairly lights and presents = Emily-heaven).

To go completely off the deep end in a vaguely philosophical manner, what is there in life that is certain? Nothing really, only today and so that is what must be focused on as no amount of howling/pouting/bribing with sweetiebobble decked cupcakes will change what will or will not be (I am sure I have said that somewhere on here before, I should really listen to my own advice before hysterically blogging). The 50/50 chance of getting a transplant creates a multitude of paths, and I don’t know which one I will head down (though I will do my utmost to go the way I want to go) but then again who in life really does know where they are headed or what will be happening this time next year? It all seems a bit less frightening when I remind myself of the fact that nothing is certain. Whilst there is uncertainty there is hope. Whilst there is hope I will hang onto it and try to use it to keep me focused on the here and now.

Tuesday, November 28, 2006

I think I am finally loosing it (stop sniggering at the back there). No in all seriousness, I am sitting here perfectly calm and composed on the outside, but that is merely because I know my lungs won’t tolerate the amount of screaming, crying and howling that the fear and frustration inside wants to create. Merely blogging about this brings forth a whole new torrent of emotions as I know people in this same situation will read this and they must be feeling like I am but I have to write or I will go mad.

Three people I know have had false alarms in the last week. Three people. All at Harefield. None of them me. There, that sums up the entirety of this entry really, me me me me me.

That is part of the twisted nature of this whole waiting game; the people who support you, who you rely on and talk to and who need you right back are also waiting. So whenever you hear of a friend being called, there is a surge of elation for them, followed by a drop of sheer despair. Completely illogical really, as just because one person gets a call does not mean another wont, but somehow in my head alarm bells start ringing that I will slot into the 50% whose chance never comes. Then follows the obligatory guilt for having the sheer audacity to even contemplate “why not me” – why should it be me more than any other person? The answer is it shouldn’t, and I know that, but we all have an in-built survival instinct and are all craving for this second chance.

Worse than all of that is the fact that in all three cases the lungs were not viable, so I cant even celebrate that a friends new lease of life is beginning; all of these people are still waiting, still needing and still hoping. I know how crushed I felt in the summer when my call turned out to be a false alarm, so I don’t know why I am envious, it is a cruel position to be in, to have the possibility wafted under your nose and then to have it snatched away. Not to mention contemplating the three people who died and donated those organs in the first place, my head is spinning and is a whirlpool of thoughts and emotions, although sadly at present the woe is me element is winning.

When I am feeling frustrated and helpless like this I like to get up and do something which at least makes me feel like I have some sort of control over which way my destiny is headed, but at this second I have no new ideas feel like I am running out of steam. Sometimes things are out of your control and you have to ride the wave, I try really hard to do that, but cant help wanting to steer it in the direction I want to go. I am just having one of those evenings where I can physically hear the clock ticking away, echoing in my head. And I am feeling the least confident I have ever felt that I will ever get this transplant.

Disclaimer: moody rant written in place of self-indulgent tears mentioned in first paragraph, or storm-out/manic hoovering mentioned in previous blog, as lungs much prefer me bashing the keyboard about a bit.
This Sunday featured our 4th annual “Sing in a day” fundraiser. Every year so far has been a huge success, but we were detouring slightly this year as instead of a large classical piece such as Vivaldi’s Gloria, we decided to do a Gospel workshop. We had our largest ever turnout, with a grand total of 85 singers arriving eager to sing at 11am, ready to work (or rather being worked) very hard all day, and perform in a fantastic concert that evening to family and friends. I do quite a lot of fundraising, well as much as I can, and before anyone mistakenly thinks this is because I am some saintly being it is merely because I absolutely love it. I love everything about it, the huge variety of people you get to meet, the way it not only brings people together but brings out the best in them, the atmosphere and the spirit of the whole event. Plus of course that wonderful feeling at the end that something so fun you have raised lots of money for a good cause.

Because I love it so much this year also brought frustration. Part of the whole event is the preparation and setting up, but to ensure I had enough energy to attend on Sunday, I lay around like an extension of the sofa, whilst other people got busy cutting, sticking, filing and planning. In accordance with my ever logical and reasonable behaviour, I instantly became furious with my mother and A who were sitting in the other room completing one of the display boards, as clearly the fact they were continuing to work without me was a ploy to deprive me of part of the experience. I knew my fury was completely irrational and had an urge to just go out or do something to work off the frustration (I think this is fairly common; a few years ago when my mother and I had an argument, I staged my most unsuccessful storm out ever, wheezed my way about 150 yards down the road before surrendering to my lungs and returning home, then on arrival found my mother had inexplicably moved all the furniture into the centre of the lounge in a fit of rage and was hoovering manically round it). However this time I couldn’t even jump into the car and drive somewhere, and knowing this made me even more angry with anyone in the vicinity (if I haven’t said so before my family are so lucky to have me). I decided to do the next best thing and shut myself in the bathroom for a nice relaxing bath, realized I couldn’t even do that on my own as I needed help washing my hair and the tears of frustration started to show. A somehow knows exactly what to say and what not to say to help me snap out of these moments (as I want to I just need a bit of help sometimes) I am not quite sure how he does it, suppose it is years of practice.

Having thrown my toys out the pram satisfactorily, I was ready to put aside what I couldn’t do and get on enjoying what I am able to participate in. Sunday itself was just great, the atmosphere at these things is always so positive as everyone is there to pitch in, have a good time, with the end result raising lots of money for a good cause. The workshop went smoothly, with everyone seeming to have a good time. Once the initial admin was done I curled up on the sofa in the foyer, listening to the rehearsal progress and trying to resist the urge to rush in and start clapping and singing with everyone else (somehow my brain and lungs don’t really communicate on what is and is not feasible). The concert in the evening was fantastic, every year the quality surpasses what we expect and this year was no exception. I really want to get an audio clip of my favourite song on here but am not quite sure how; if I can find a technological genius to instruct me I do so. Most excitingly, it looks like we will have raised about £1000 for the CF Trust again so a big yay and thank you to everyone who participated for that!

Following the extreme busyness of the weekend, I donned my high-flow oxygen mask and slept on and off for the whole day yesterday. Consequently I still do not have all my blood results back as I was supposed to ring for the final few yesterday, but I am taking the splendid stamina my lungs showed on Sunday to be a rigorous medical test revealing there is currently no infection present. I am still planning on a pre-emptive IV attack before Christmas to ensure the best behaviour possible from my tiny breathers. Speaking of which (Christmas, not lungs) my mother and I received our Christmas cards which we had ordered in plenty of time this year and so were feeling rather smug. As we tore open the box to examine our purchases, it soon became apparent that we may not have been concentrating nicely. There were some of the ones I remember seeing and liking (“those are mine I chose those, mine” I believe I said in a nice sharing way as I grabbed them) and a great deal which we don’t seem to remember clicking on, although I do have hazy recollections so it is definitely due to our lack of focus. The damning evidence that we had clearly lost interest by the end is four tiny packs of blank cards depicting what appears to be a disgruntled looking otter sporting a Lilly leaf as a hat. Some of those amongst you can expect to receive them masquerading as quirky Christmas cards.

Thursday, November 23, 2006

My nurse from the Brompton came today to take some bloods to see if we can work out if I have an infection brewing. It is hard to know as there is such a fine line, plus my lungs in their consistently Diva-like behaviour have decided that oral antibiotics are clearly passé so prefer to jump the queue straight to IVs. She did point out that it may not be anything new, and instead just my lungs new level of function since the summers antics. If that is the case then I am sure I will adapt, I am more worried about infection going untreated and causing further damage…I shall just wait and see and not ponder on it till tomorrow.

Far more excitingly, yesterday a nice man from the Oxygen company phoned me to say he was on his way round with a liquid oxygen…thing. The real name of it escapes me, mainly because it so resembles a Dalek I keep expecting it to start wheeling after me down the corridor shouting at me in a monotone way, I am rather tempted to name it Derek, Derek the Dalek makes me giggle every time I say it (I name all my equipment for those who don’t already know, v bad habit which I now cant break for fear that new equipment would spontaneously disassemble out of jealousy). He arrived and came in to assess where my dalek should go (sadly this meant he got to see the chaos that is my house at present due to a busy week or so) and eventually settled on the hallway, as it is well ventilated, not near any electrical equipment, and near the front door which was quite important as this beast weighs 11stone. The engineer was fantastic and explained everything really clearly. He was here for some time, going through all the technicalities (there are a lot of them) and demonstrating how everything works (I’m not sure I understood everything as I tend to change things in my head so that I remember them, for example the fact that “steam” will start to escape from main dalek as little cylinder is nearly full translates in my head that dalek is getting puffy having overexerted, which I don’t think is quite accurate). So I now have a great big dalek sitting in the hallway, and the small clever refillable cylinder which will give me back some freedom, yay!

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Spot the difference...

To be honest I am mortally afraid of the thing, which I shouldn’t be as it is clearly very safe, as long as you don’t do anything stupid like try and touch the nozzle you use to fill it up with as your hand will probably stick to it what with it being stupidly cold - I don’t think I am exaggerating when I say -200 degrees (incidentally when someone tells you constantly to make sure you don’t do something, does anyone else develop and overwhelming urge to do exactly that?) So nervy in fact that when he left and the small cylinder started making what I can only describe as honking noises I phoned him straight away and asked him to come back, only to confirm that this is just because it is new, and releasing pressure or something…I don’t know, as long as it’s not about to explode or something I don’t mind, although if said noises continue going out in public is going to be rather amusing (“would you like any cash back?” “Yes please could I…HONK” like some childish comedy gag).

When he was explaining to me how long it would last, saying how I could go out for half a day but then might need to pop home and refill it, I felt tears of happiness at this potential new freedom forming but managed to swallow them down before coming across as a hysterical over emotional woman. Even if I need to run it on 4 litres I can go out for about 4 hours but most excitingly, when the cylinder runs out, the fact I can refill it from the dalek in the hallway means I won’t be trapped at home waiting for a delivery of new cylinders. I road tested it last night and headed over to a friends house for lasagne and a sophisticated and profound film (pretty woman). The cylinder was quite well behaved, it seems to honk less when in use but complied and did kindly so at least three times which I appreciated for amusement value. I can now look forward to attending our Gospel workshop fundraiser for the CF Trust this Sunday ( for more details) which I didn’t think I would be able to go but am excited at the prospect of being part of what should be a fantastic day. Hurrah for Derek the Dalek!

Monday, November 20, 2006

Oxygen oxygen everywhere and not a drop to breathe…

Having made the bold and crazy decision to go out on Saturday (just to sit in the car whilst A ran a couple of errands as it really was the most gorgeous sunny day), I am out of oxygen again, not that this should be an issue for much longer if I get hold of this new superhightech liquid oxygen, yay! Incidentally for those who are wondering, you don’t inhale the liquid, rather it is stored in liquid form and returns to gas form when released from the cylinder in manner of liquid nitrogen or similar.*

Obviously the oxygen issue has been on my mind anyway, but there seems to have been quite a bit of discussion and thought on it within various “users” within the CF community. One thing that becomes strikingly clear whenever oxygen is discussed is how many people in similar situations to myself either don’t use it in public, and try to get out and about without it, or if their need is really that acutely severe, stop going out all together.

I find this very hard to get my head round. I completely understand the fear, and for anyone who doesn’t I suggest you draw a nice big line radiating across your face from under your nose to your ears with a pen, or tie a piece of string in a similar fashion, and then walk out into town and see how self-conscious you feel. I remember avidly the first day I used oxygen in the shopping centre in my home town. As may have become apparent, the potential purchase of pretty things works as quite an incentive for me, and not only that but when I am faced with a new challenge which is making me a bit nervous, I try to throw myself at it, sporting my best war-face, whooping and tackle it head on. The reason I do this isn’t because I am confident that I will win over whatever it is, but because I am driven by fear, fear that this feeling or issue will grow and the anticipation of it will become bigger than the actual issue itself, and then will be all the more difficult to overcome. We pulled up in the car (there were no disabled bays free so my mum parked in her skewed and amusing “I’ve arrived” manner in order to get me, Denzel my wheelchair and my cylinder out of the slim space) and set off through the car park in the direction of the shopping centre. At this point the butterflies in my stomach were dancing so much I thought I would actually be sick, and I started to cry, through nervousness and anticipation of the embarrassment of bumping into old acquaintances, what they would do and what they would say. Through my tears I told my mum to turn back as I had changed my mind, at which point (as only your mother can) she laughed, told me not to be so silly, and strode towards the shops with even more vigour. Slightly cruel? Perhaps, but having your mother tell you to pull yourself together is sometimes needed, as is someone to push you (no pun intended) when you feel like bottling out.

I think also there is a belief that using things such as a wheelchair or as oxygen is somehow like letting CF win, or admitting to defeat. Whilst at uni in 2003, walking around was becoming an ever increasing struggle and when considering my decline and the state of my health I most certainly took this view. Someone mentioned using a wheelchair to me and I recoiled in horror at the thought. Surely I wasn’t that ill, using a wheelchair would imply that I can no longer walk around, that my lungs have gone beyond that point and that this is the beginning of the slippery slope of losing my independence. It was also suggested that I consider using oxygen at this point at which I completely freaked out and refused on the basis that I was still waking up ok and going to uni and managing to continue living my life, so quite clearly I could manage without. I had a great social worker in Bristol, and she came to talk to me about both factors. She said that whatever I decided to use or not use, perhaps I needed to change my perspective and suggested the following. CF is affecting my lungs more and more, yes. I want to fight it, to retain my independence, and to keep living my life as best I can for as long as possible. Surely in order to increase my ability to fight it, it is sensible to employ any weapons I am offered. So instead of seeing the wheelchair as the step down, CF has already caused the step down, and now I am fighting back by using the necessary means to enable me to do more once again.

Stumped by this novel approach, I chewed it over for a few days whilst I was in hospital, examining all the pros and cons. At the end of the day, she was right. Whether I chose to use the wheelchair or not, chose to have oxygen at night or not, my lungs were getting worse. The only thing using these things would affect would be how much I could do and how difficult it was doing these things. It was at this point I decided to try and change my approach; I would still battle just as hard, but changed what I was battling against, and what I was battling for. I could probably count on one hand the number of occasions when I have come home upset/frustrated from reactions I have encountered, however the list of things I have done and would not have been able to do (or would have enjoyed so much less due to fatigue breathlessness and pain) is endless.

It is the overriding factor which is the most relevant when deciding what path to take, and for me it is more important to retain my freedom and the ability to go out and do what I want to do. I am more scared of being stuck indoors watching life go by than I am of comments and looks (and whilst actually going out wearing O2 isn’t half as bad as I imagined, 90% of the time people don’t even notice as they are too absorbed in their own lives but very rarely you do get stared at or get the odd comment) and for me the latter is the lesser of two evils and a small price to pay.

I actually get a lot of confidence from mini challenges, and consequently (hopefully) mini-victories. For anyone facing a personal challenge where any of the above rings true, push yourself, if you cant bring yourself to do it, rope in someone who you know will push you (I tend to go for my mum or A as I know they will also put up with any howls of rage and pouty faces induced by being pushed), as there is no better boost than facing something you are frightened of and coming through it.

*Emily’s very own special scientific understanding and explanation may vary from yours

Thursday, November 16, 2006

My physio came round this morning for my weekly checkup. Generally I can tell how the appointment is going to go before it even begins, predominantly because I inflict my self-diagnoses on them and they are so polite they usually go along with it. It was fairly normal in most respects; we gossiped far too much and then managed to steer the conversation towards lungs and their antics, but my opinion that “yes I am great thanks doing really well” slightly varied from hers. As she (quite rightly) pointed out my lungs are still bubbling and crackling a fair bit more than usual, in fact quite significantly so. I must have subconsciously chosen not to notice this and instead have been focusing on how much better I feel now I am not full of head cold. My comprehensive and substantial defense was “but I feel fine” and after a quick consult with the doctor we decided to wait and see how things are after the weekend. Still I am feeling nice and perky, and it’s so reassuring that the hospital are keeping such a close eye on me, not to mention the therapeutic benefits of a good catch-up and gossip, so all in all a very positive checkup I feel.

I am currently terribly over excited, not because of a big money win/new extravagant purchase or anything else others would find mildly thrilling, but because it looks like the oxygen situation might be about to improve. I have had one or two people mention to me the possibility of using liquid oxygen. These are apparently not only much smaller cylinders, but last much longer than the big gas ones I currently get. This afternoon I spoke to a nice lady at the Oxygen company who explained more about this liquid oxygen and agreed that I should qualify due to how much O2 I need (they seem to be quite strict as to who can have it as they have limited equipment at present). Apparently one of these liquid O2 cylinders could last up to 10 hours on a 2litre flow rate. Not only that but you keep a big tank in your house and then refill the cylinder as required.

At present, I have to use the cylinders as sparsely as possible to make them last, so I use them in the car to travel to somewhere like my parents house, then plug in my concentrator when we get there. The NHS are strangely unable to provide me with a team of men to accompany me wherever I go, carrying my equipment around for me, so A gets me settled then goes to and fro unloading and setting up everything. Having the freedom of being able to leave the house, a source of electricity and my concentrator for even 5 consecutive hours is just too exciting to contemplate and makes me scrunch my toes up with glee. My friend (who will hopefully start using it soon too) and I were chatting eagerly about the prospect of it when it occurred to me how that we may be the only people in the whole of Britain who have today had their days been made by oxygen.

Good god my bank balance is going to regret this.

Monday, November 13, 2006

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The troublemaker herself - Claire my O2 Concentrator.

My cold - having temporarily moved location to my chest causing my lungs to gurgle merrily - is most definitely in its last stages, so feeling rather perky having fought it off with huge amounts of nebulisers, steam inhalation, physio and rest.

On Saturday night, Claire (my oxygen concentrator) - like a naughty child who has not had enough attention – decided to start playing up. The first signs of naughtiness materialized when A went to turn her up to 4litres for my mask, and she stubbornly stuck at 2litres, refusing to budge no matter how far he turned the dial. We rang the O2 company straight away, but decided to wait until the morning to call an engineer out. A few hours later I woke up rather breathless; apparently disgruntled by us not taking her misbehaviours seriously, Claire had decided to stop the O2 flow all together, although had slyly continued to rumble away in the pretence that she was still generating oxygen, and more worryingly the alarm had not gone off.

Somewhat concerned (and a tad annoyed that she had waited till 3am to go on strike) I switched to one of my tiny portable cylinders and phoned the O2 company. About 15 minutes later an engineer phoned me to get a better idea of the problem. I went and switched Claire back on as instructed, and the little ball defiantly rose and floated gloatingly at 5litres. Apologizing, I confessed she now appeared to be working normally, hung up, and returned to bed. Clearly frustrated her non-compliancy stunt hadn’t worked, a repeat performance ensued about two hours later. I rang again (through gritted teeth) and an engineer was with us by 6am. He decided to just swap Claire for a new machine (who I have also named Claire, as naming it in the first place confuses enough people) connected it all up and left. An hour later…the same thing happened. I phoned again, (the poor man on the other end of the line’s voice was a mixture of surprise and weariness, whether due to me ringing consistently or him being on the nightshift it’s hard to say) and this time was told that it is actually probably a problem with the water we are putting in the humidifier (bet the engineer was thrilled having lugged a new machine here at 6am).

Due to Claire’s strike leaving them working five times as hard, my lungs were furious with me and refused to cooperate for most of Sunday. A combination of this, lack of sleep, and the fact that A was tidying the house resulted in quite a teary afternoon. Let me just explain that last reason, it isn’t that he chucks all my stuff away or anything like that, rather that he has to do everything around the house, and I lie on the sofa getting in the way. And I hate it. There is no way around it, especially when my lungs are misbehaving as much as they were yesterday when even sitting still my heart was pounding so hard I could see my T-shirt shaking, but it just always makes me feel furious (at myself predominantly) because of the unjustness of the situation. A rather bizarre trigger for a completely irrational feeling I know, and amusingly (as those who have known me a while will know) I have never been a particularly tidy person, making these feelings even less logical. Anyway the combination of factors resulted in a rather teary afternoon. I sat feeling furious with the world, with the fact A is having to live like this, that I am having to live like this, with my lungs, with the lack of transplant 20 months later and with the fact that more and more things I want to do in day to day life (including regular days out and about thanks to the restrictions on portable oxygen) are prefixed by “after my transplant”. As anyone with bad lungs will tell you, crying is probably the least constructive thing you can do when feeling a tad puffy. I laughed through my tears to A about the fact crying probably wasn’t helping, and then inexplicably cried even more.

Still even though my lungs weren’t particularly keen on me crying, I think it did good for my spirit, as did the gorgeous hot shower I was given and resulting clean fresh hair, which when you are a bit groggy always makes you feel so much better! I sat there with my eyes closed, the hot water and steam helping me (and my lungs) relax. Here was proof that there are still things to enjoy even when you feel most down and incapacitated. My friend sent me a postcard from France last week which had on it a picture of flowers and the following caption: “Il y a des fleurs partout pour qui veut bien les voir” (roughly translated: there are flowers everywhere for those who want to see them). A French version of the English “Every cloud…” saying really, and equally as true.

Wednesday, November 08, 2006

“Alcoholism is like any disease - you can either go "oh, poor me, it's not my fault I'm being antisocial, it's just because I'm in so much pain/so depressed/whatever" or you can fight it.” - A. Blogger.

Before I start I want to clarify that I cannot take credit (nor reprimand) for the above quote; I found it on an old blog discussion stimulated by the death of George Best. I don’t want to discuss Mr Best and I don’t want to discuss alcoholism. Simply the essence of the sentence which struck me was the bit about disease and how we can use and view it; that we can either use it as an excuse, or use it as a stimulus.

Over simplification perhaps? But reading this sentence suddenly struck me as holding a profound truth which I have been skating around for some time, and seemed to bring together to me an underlying similarity between many different illnesses, in fact not only illness, but group together something I have been trying to vocalize about perspective in relation to events and happenings which are essentially out of our control and therefore can have a profound affect.

To me this sentence actually sums up a lot about what I want to tell people about how I feel about life. To a certain extent, this isn’t a conscious decision. When events like being told I need a transplant or my close call in the summer, I get the urge to rush forward and take advantage of the fact I am still standing by cramming in even more to life than ever before. But some of it is definitely a conscious decision, and can at times take a lot of work, particularly when feeling particularly puffy or simply having “one of those days” that we all have when hiding under the duvet and steadily consuming our bodyweight in jaffa cakes seems like the most attractive option. At these times I find my health can act as a motivational tool, as merely thinking about how much less I can do this year compared to last, and how much harder it will be in 6 months again pushes me forwards to do it now whilst I can.

There are many things in life we can’t control; bad things happen. In an incredibly over simplistic fashion the opening statement says it all: we can hide behind these things, or we can use them to propel us forwards. And I am not just talking about illness, there are many other examples I have seen of people encountering truly terrible scenarios and rising up somehow stronger than before, moving forward and continuing to live their lives.

Take the label “I have Cystic Fibrosis.” Yes, yes I do. But what exactly does that tell you? Just that label on its own, what does that immediately mean I should be excluded/exempted from? The answer is nothing. There is absolutely nothing (as far as I can see) that merely the label of having this particular illness qualifies me for or excludes me from. Obviously the affects on my body which are now so encroaching on pretty much everything I do speak for themselves, but I am still learning every day that we are too quick to assume that something can’t or shouldn’t be done. There is a girl who was in hospital with me who has been using the breas (which is a non invasive ventilator) for several years now, and actually goes cycling whilst using it! Now I would have assumed that should I need to use that I will be bed bound let alone house bound, I am in complete awe, and healthily this has made yet again me reassess my ideas of what is impossible.

My granddad is a marvelous example here too. He is 90, so by all rights could be being rather difficult by now, insisting that people fetch and carry for him, sitting at home quite stuck in his ways. But he isn’t. He goes to evening classes (despite being one of the most learned people I know he is eager to expand his knowledge), he sometimes walks into town. He has some home help and he does a little dusting himself. He recently got a DVD player. He revels in hearing all about his family’s lives and considers himself to be one of the luckiest men alive. When A and I went to stay with him about 3 years ago we took him for a meal to a nearby pub. I pointed out the OAP menu and he commented (totally genuinely) on how useful that was for the older people in the town to which I wondered with slight awe and amusement at what point he would consider himself old!

Someone was talking to me the other week about my “readership” which since installing a counter I have discovered is surprisingly high (well it surprised me anyway). Whilst I am inclined to think that that is my ever faithful family and friends checking it repeatedly every 6 hours or so, there is the possibility that quite a few people stumble across this blog. Anyway my friend was asking me was there a key message I would like people to be picking up from reading my waffle.

I think to some extent there is. Predominantly of course I use this blog to help me get my own thoughts and feelings in line a bit, as some sort of cathartic, cheap, and rather public therapy, and also to keep people up to date with my health and happenings. But everyone wants certain aspects of their character or behaviour highlighted or picked up on, and I was trying to work out how to word my wants. Ultimately it all rotates around the fact that I love my life, and that without my transplant I have very little of it left. I think I would like people to see from this blog that it doesn’t matter how bad things become, or how close to the edge you get, it will never be “all” bad, it will never be “all” hopeless…and it’s not over till it’s over. My tagline is “this is my life and I choose to love it” not because I think that life is just that easy, but because I do believe we have some control over how much we get out of life and the experiences we have.

Obviously it is not as simple as that, nor do I mean my explanation and theory to be. There is far more depth and far more variables which affect both our outlook and the events in our life, but also my actual thoughts on life and perspective go deeper (yes honestly) and are more complex than this hopefully comprehendible outline. For example I don’t think that my way of viewing things is necessarily the optimum for everyone, in fact I don’t think that is the point, it is more the point to find a perspective and be content with it. Fighting doesn’t necessarily mean in order to extend longetivity of life for as long as possible. Nor does fighting it always mean you will win, (or at least you may have to redefine your idea of winning).

I want to enjoy my life because the way I see it, today is the only certainty we have got so I am going to invest my energies into making the most of it. I want to have fun, I want to encourage others to open their eyes and to do so. I want to show that for me at least, there is not a drawn out process I would label dying, because whilst you are alive, you are living. If I want people to see anything, I want them to see someone who was simply living their life, and loving it to the best of their ability.

I wrote the above some time ago when I was still in hospital, but only tidied it up and blogged it today as I am snuffly with a cold (and yes as such equally as pathetic as the rest of the population) and so decided to post this instead of attempting to write anything new and vaguely coherent. On rereading this I am not quite happy that I have managed to convey what I want to say, but I think I shall post it anyway. Thanks to the bloggers who had that conversation which led me to write this stream of thought.

Saturday, November 04, 2006

Yesterday was a really lovely day, which was a surprise at it stemmed from a potentially terrible evening the night before. Thursday evening, I was waiting for A to get home when a new bout of chest pains started up. Chest pains aren’t rare, and my lungs often get a bit cross and start niggling, but usually the pains move around or are spread over both lungs reassuring me that it is just general naughty behaviour rather than a specific problem. These pains however not only started quite rapidly but were concentrated all on the right hand side, and began to increase in strength to the point of taking my breath away. After an hour or two of continuous waves, we decided that the most sensible thing to do would be to go to A&E to get an X-ray to rule out a pneumothorax (I was fairly certain it wasn’t but have understandably been left somewhat wary after the summer’s episode). Thanks to my oxygen company finally delivering after 7 days without cylinders we didn’t have to call an ambulance so jumped in the car and made our own way there.

We arrived at A&E and were seem impressively quickly and I was X-rayed within half an hour. At this point however my smug feeling that I had definitely done the right thing began to wear off. The first doctor scrutinized my X-rays for ages, but was suspicious of a patch at the top of the right lung and wanted a registrar to take a look. Looking at my phone and seeing there was only an hour till Catherine Tate was on I begrudgingly agreed to sit and wait (I am such a good patient). He was then joined by another doctor, then by a third, and the three of them stood tutting at my X-ray for some time, before heading over to talk to me.

Now doctors in a general hospital always ask what to me seem like daft questions, however they must be forgiven as CF is a complex disease and unless you are a CF specialist why should you know. But there is a level of daftness before it gets slightly surreal, and we crossed the threshold to the extent that I began to look around the bed in search of hidden cameras. The first doctor wasn’t too bad with the questions (although he did approach me with an apologetic look at first and tell me that my lungs “looked pretty bad” to which I reminded him gently that was probably the reason I was listed for a double lung transplant) – he did ask me when my transplant would be but if I had a pound for everyone in the medical profession that had asked me that I would be a very rich lady. Then the slightly more senior doctor approached and started from scratch with a list of questions in order to take a full medical history. When he asked if I was normally fit and well (having already written down that I have end stage CF and am awaiting transplant) I had to swallow a smile, and out of the corner of my eye I watched A’s shoulders start to shake as I was then asked “do you smoke” (erm, no), which inexplicably lead on to, “are you trying for a baby” and when I confirmed I wasn’t, he wanted to know why not. At this point I couldn’t help sniggering which I tried to hurriedly disguise as a cough. A was not helping, as every time I moved my head to exclude him from me field of vision he mischievously moved back into it so I could see him laughing.

Laughter turned to tears however as after the Spanish inquisition was over, the trio decided I probably did have a small pneumothorax at the top of the right lung. Convinced they were wrong (the supposed pneumo was nowhere near where the pain was radiating from), when asked to stay the night for observation I retorted with “you’ll be lucky” and sat pouting with my arms folded whilst they laid out their evidence and suggested that it was the safest option. After some consideration, a phonecall to the Brompton, plus the vivid memory of the summers small pneumothorax developing into a massive tension one 24 hours later, I decided that I wasn’t brave enough to take the risk and walk out of the hospital, so sulkily agreed to stay. The night on the ward wasn’t that bad at all; I was thoroughly exhausted with the evening’s events and so slept reasonably well (full lights being turned on at 6.30am for blood pressure to be taken excluded). This early morning disturbance induced me into an unreasonable fit of ice-cold rage, so I sat scowling at the wall for the next hour. At 8am I grumpily decided to open the curtains and in flooded the most glorious sunshine. The windows were huge and stretched across the entire wall, and combined with being on the 5th floor gave me the most spectacular view. The sky was an unnaturally bright blue, with only a few clouds speckling it and the sun beaming brightly. A light mist was swirling around the soft rainbow of autumn trees, with steam gently rising from frosted rooftops. It sounds silly but I haven’t seen a view like that for ages, and it really did take my breath away.

Bad mood magically evaporated, I started doing IVs (left to my own devices after firmly explaining the night before that no one was allowed to access my long line except me) and suddenly found myself surrounded by 10 people, including doctors, nurses, med students (you can spot them a mile off as they are the ones busy trying to write down every single word uttered by anyone ever) and the head respiratory doctor. This guy turned out not only to have trained at the Brompton but to be what I deem a good doctor (i.e. he listened to me and then said those magic words “well you know better than me” - I like it when doctors say that). I may also be favourable towards him as he confirmed that this definitely was not a pneumothorax, it is merely a large cyst sitting at the top of the lung pretending to be one, and said I could go home. A picked me up, and in our delight at this not being a repeat of the summers frightening events, and in celebration of the beautiful sunshine we decided to find a café with outdoor seating and had a gorgeous lunch sitting out in the sparkling sunshine.

I shall leave you with the latest tales of H, the small boy who feels the need to devour everything in sight, brought to me last night by my mother came round to check that I was in fact ok (and not pretending to be whilst actually still lying incarcerated in hospital). Apparently lunchtime supervisors are now obliged to keep him in sight at all times, as when he disappears out of view he can generally be found gnawing on the shed at the back of the playground. Most amusing had to be Friday’s interruption during the “mental maths” lesson, which lead a tearful voice to proclaim “Miss! H asked to borrow my rubber to rub out question 5 and I gave it to him and now he’s eaten it!” The class has since been instructed to refrain from lending stationery to H from now on.