Tuesday, October 31, 2006

Whenever I appear to be disappearing into an “oh woe is me” temperament, people are lovely contacting me with various sweet messages of support, and came up trumps again this time, exemplifying everything I said in my post about faith. As always, thank you.

On Thursday I pootled up to the Brompton (which I can rename my summer house I think judging from the last 2 years) to start another course of Intravenous antibiotics, mainly as a pre-emptive strike as lungs have started to misbehave and do naughty things like bleed spontaneously for no reason at all in the middle of the night; clearly not conducive to relaxation. In some ways it was quite nice to go back up to the hospital as I got to catch up with some of the staff and I think it was nice for them to see that I was doing ok too. The day went smoothly and it was a wonderful and liberating feeling to just be an outpatient and to arrive and leave on the same day. It is a gloriously blue-skied crisp and sunny day today but I am trapped indoors, having run out of portable O2 a week ago and been left stranded by my suppliers (anyone would think I am demanding bottles of pink champagne not oxygen!) Trying to get hold of new oxygen cylinders creates all sorts of fun and games - the response when I pointed out the importance due to me being listed for transplant was highly amusing; “we suggest that should you be called you ring us straight away and we will try and get some to you as soon as possible” (clearly they don’t quite understand how transplants work). Still IVs cause you to tire out quite quick so it’s good timing to be stuck in and made to rest really, plus it looks quite blustery outside and I love watching the wind whilst being all being all snug and warm indoors.

Someone mentioned that I should make a list of things that I am looking forward to post-transplant. I have actually already done this, but just not blogged it, so I shall do so now. Incidentally for anyone who notices that there is an abnormally high number of things which involve me turning round and round for some reason or another and become concerned for my mental health, this is for a reason, it is actually because this random maneuver is most difficult whilst using O2, as it inevitably results in me being wrapped in green tubing (in manner of a human Christmas tree or similar) and has left me pouting and bleating for help in detangling on more than one occasion.

So here is my list I made a while back, of some of the completely inane, normal and everyday things I am looking forward to doing post transplant.

-Walk down the road (This is the image I replay in my head when I am feeling most down: to walk out of the front door with nothing in my hand except my keys…and just stride down the road, and hopefully to start running. I don’t have in mind a place I will be heading towards, just the fact I will be alone and empty-handed.)
-Walk up the stairs. All in one go. In fact run up them, probably tripping over and breaking several bones in the process.
-Go swimming (I used to swim loads, right from a very young age. As a child and loved diving down under the water and wished I was a mermaid).
-Lie back in a steaming hot bubble bath (lungs are currently not very keen on very hot water or lying flat)
-Dance in the rain and get ludicrously soaked (and then probably remembering that actually getting all wet and cold isn’t as romantic and/or as fun as one imagines)
-Twirl round and round until I am so dizzy I fall over (preferably wearing my rainbow dress where the skirt flies right out like a dancers dress)
-Actually learn how to walk in heels as have been cheating by using wheelchair therefore kidding myself that it doesn’t matter that I would completely stack it in 20 seconds.
-Blow up balloons and blow out candles (I will have to throw a party just to allow me to do both, what a shame).
-Go out dancing all night long, and especially dance with A (dancing in general is no longer very plausible but dancing with someone else even less so, due to tubing issue causing the majority of moves to be a major health and safety hazard).
-Roll down a hill (self explanatory for anyone who has ever let their inner child get the better of them).
-To stand and have a shower (I currently sit on bath board, which as several people have pointed out is probably the more preferable option and novelty of standing is likely to wear off more than quickly)
-Sing a power ballad (into my hairbrush, on my own in a soundproof room obviously)
-Decide that I must suddenly by some miracle be quite a sporty person, take up a random sport such as lacrosse or similar, have one lesson, and realize that actually it was a lung transplant not a personality transplant.

This is by no means an exhaustive list, it’s just one that I thought up one day in hospital when it was absolutely tipping it down outside - the kind of rain which has really big fat wet drops and therefore would soak you in sixty seconds – and looking out the window gave me a compelling urge to race outside and run around a lot. It makes me smile every time I read it, so am off to make a cup of tea and then re-read it some more.

Thursday, October 26, 2006

Yesterday was my 6 monthly check-up at my transplant centre. As we drove up chatting away, my mum pointed out how the last time we had gone this route it had been via ambulance with lights flashing and siren blaring; it feels almost a lifetime ago since we made that trip. We arrived in good time and even managed to find a free disabled bay (an ironically rare occurrence; for some reason hospitals appear to think that 5 disabled bays will be ample, when in fact it seems logical to me to assume that quite a few people attending hospital regularly might be blue badge holders, particularly a heart and lung hospital). I can count the number of times I have been to harefield on one hand, and because it is such a rarity, plus of course because of what it represents, I always get a huge mixture of emotions flood over me – excitement, anticipation, fear, and also a slight sinking feeling of sadness.

The morning is spent doing various tests (although I didn’t do any of the lung function tests as I am still banned from doing those due to the risk of them making my lung collapse again) and then we headed off for a bite to eat. After a rather lively lunch with much laughter due to inability to get food into mouth without spilling it everywhere plus excessive pudding helpings, we went back across to the transplant clinic, to meet with the doctor for the chat part of the checkup.

A slightly confusing start to the clinic for everyone, as we sat down with the doctor who gently asked how I was doing to which I responded brightly “yeah I’m fine thanks how are you?” Somewhat confusing to a doctor who is seeing me in a transplant clinic and had clearly been reading my notes detailing the summers events. It is a sort of ongoing problem I have, where my desire to protect and not upset other people by describing the most frightening and disheartening aspects of my health seems to seems unable to distinguish the health profession as people who don’t actually need shielding. This is perhaps somewhere where a positive attitude does not help, when it results in the sentence “but I’m doing fine really” being tacked on the end of everything.

We pummeled the team quite vigorously to find out what was going on transplant wise. There have been two main problems recently; one is the continual lack of donors, and the other is non-viability, where there is a problem with either one or both of the lungs, (which is what happened at my false alarm in August) resulting in only one or perhaps neither of the lungs being transplantable.

I came away from the appointment feeling rather downhearted, which is daft because there was much to be positive about and focus on. But I can’t help but get frustrated. The general consensus of the population is that people support organ donation and survey after survey shows that people would like to be organ donors in the event of their death. Yet there is still such a discrepancy, only 22% of people are on the organ donor register, and still the number of transplants is decreasing. Whilst I am determined to keep on raising awareness at times I feel like I am fighting a losing battle. It is true that every day we receive messages from people who have been touched by our campaign or who have learned that they can sign up via the net and have done so straight away (this is the most common response) but I cannot contact everyone in the country to make sure they have considered the topic… and I am running out of time. I mentioned the dizziness and puffy spells at clinic, and they explained that my heart has to work pretty hard now due to teenytiny lungs, then gently told me that perhaps I need to slow down a bit. This is not what I wanted to hear. I wanted to hear that there is something miraculous that they can do to keep my lungs holding on that bit longer, to improve them a bit more and to help me last that extra mile whilst I wait for my transplant, but they can’t do that.

As my mum pointed out on the way home (which made me want to deck her although it is clearly not her fault and she is 100% right) it is down to luck really. If I am lucky enough to be in the 50% that get this transplant then yay, fantastic, the possibility of some years with healthy lungs is an exciting contemplation, but because it is down to luck, this is why I have decided to go out and live life now, not cocoon away in a self preservative manner. But it still makes me sad, I am not brave, I am greedy and desperately want to keep on living.

I do love writing this blog, it is so therapeutic, as even just by doing that it has made me realize how lucky I am to have such a fantastic life that I want it so so much, not everyone is lucky enough to feel that happy with their lot, so already feeling perkier. (proof of my “but I’m OK really” syndrome there!)

Saturday, October 21, 2006

Am very proud of myself today, as thanks to a small amount of determination combined with huge lashings of desire to buy pretty new things plus an overly zealous mother to fuel it all, I went on my first shopping excursion today, yay! I was really quite nervous. Lungs are having a fair bit of trouble coping still, so whereas before I would just use 2litres of oxygen I am often having to whack my O2 up to as high as 8litres to calm little lungs down (clearly they have become far to diva like in their ways). This factor makes me a tad nervous to go anywhere too far from my concentrator, as the tiny portable cylinders I have don’t last very long at all, plus it takes no end of blood sweat and tears to actually coax the company to give you more than 3 at a time. It is those damn “what-ifs” which can creep in if you aren’t careful; what if I get really breathless and can’t run my cylinder as high as my machine to give me some relief? What if we get stuck somewhere due to traffic/roadworks/landslide/carnival procession or similar and my O2 begins to run low? Not so much of a problem when the O2 is simply perking me up and making breathing easier but at the moment breathing doesn’t just become slightly hard work, but rather almost impossible without the support.

Luckily the desire for pretty things has been building slowly but consistently over the last week or so, until (as I predicted and hoped it would) it significantly surpassed anxiety caused by the what-ifs. Feeling quite good lung wise and emboldened by thoughts of beautiful shoes, me Abby and my mother set off in the car and parked down a quiet road thanks to my little blue badge (I still get such strange looks when we pull up in a disabled bay, which I take as a compliment as the nasal specs clearly aren’t that prominent for people to be scowling at me as I wave merrily back at them). Even with the promise of shiny new things, it took quite a lot of push mentally to actually go, as it is just so much easier to put it off indefinitely; oh I am not quite feeling up to it, plus it will tire me out, etc etc. The sun was out and the sky a gorgeous deep blue as we set off with me in Denzel (my wheelchair) towards the shopping centre. It is all such a strange sensation still, cars roaring past, people pushing and chatting loudly, rushing around going about their daily business. I felt like a five year old as not only was I quite nervous, I was acutely aware of how helpless I am and completely reliant on someone else - normally I can at least maneuver Denzel around a bit on my own using my arms but I cant do that at the moment. Being out and about in the town again was strange, but nice, nice to be reintroducing myself back to normality. Also every time I face something I feel nervous about it boosters me with confidence, as I feel the nerves gradually subside, and I can add that as another accomplishment in the “Emily 1, CF 0” game which I am determined to keep playing. Tiny accomplishments are the way forward.

We headed straight for H&M as my mother most sensibly reasoned that just incase I want to return home after 10 minutes we should start with our favourite shop. I found some gorgeous bits and pieces (sensible trousers which I did need canceling out the beautiful but not quite so necessary tops, necklace and earrings also purchased). I wouldn’t say I was on edge all the time, rather having to work quite hard not to be, and not to keep thinking about breathing and potential breathing related problems. For example when looking for sensible trousers, my right lung got bored and decided to amuse itself by creating random stabbing pains in the top lobe, roughly where my 4th collapse was. Repressing the overwhelming urge to panic I decided to try and work out the new price of items which were labeled with markings such as “70% off”. This distraction technique worked a treat (predominantly because that is maths sadly beyond my capabilities) and the panic subsided leaving just the stabby pains, which on realizing I wasn’t about to rush home shrieking also began to die down. It is nerve-wracking and it is hard, but what frightens me more is the idea that my teeny battered lungs will prevent me from doing the things I love, and I will not let that happen, not yet. Emily 1, CF 0.

Brimming with new confidence and pleasure at having convinced lungs to temporarily comply, I demanded that we wheel in the direction of a shoe shop, and purchased the most beautiful shoes in the whole world ever (also known as glorious-but-completely-impractical-not-to-mention-unnecessary shoes). Thank god for Denzel, because I can’t walk in them. I have decided that they will become permanently attached to my feet and I shall refuse to take them off, even when in hospital. I have included a picture here for your delight and delectation, also because the money funding this shopping spree was kindly raised by some wonderful friends and family who attended a concert organized as a fundraiser for me when I was in hospital. So as well as boring things such as reimbursing family for some of the car parking fees accumulated (Chelsea & Westminster council took over £1000 from my family in car parking costs over the 11 weeks) here’s the evidence that your money is going on slightly more attractive vital necessities, which are so very essential for life. Hurrah for fabulous shoes!
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Wednesday, October 18, 2006

For someone who is supposedly fairly bright, well educated, and has an adequate amount of life experience, I can be rather dim. I was having one of my puffy moments – when breathing itself seems like the most tiring and strenuous activity, and every breath in takes concentration to lift my ribcage (you know that feeling when your leg muscles are burning because you have been walking too far or standing for too long or something, that but in your chest muscles). I recently had a new Claire (O2 machine) installed and she is (supposedly) superdooper powerful and goes up to 8litres, allowing me to have more oxygen when I need it. At the same time, the nice man fitted a little bottle which is filled with water and then humidifies the oxygen, as well as providing a nice little bubbling noise which I like to imagine is a zen-type water feature like celebrities might install in their house or similar.

I figured this was quite a good opportunity to road test new higher flow O2 and decided to switch to my higher concentration mask and turn the flow rate up. As I went to do so I noticed that the humidifier was on empty, so idly wandered over to the kettle which had some relatively cool water in, took it over to the oxygen machine, and unscrewed the bottle. What I hadn’t quite accounted for was the minute I did that my oxygen flow stopped. And I wasn’t feeling particularly fabulous in the first place. I have the somewhat amusing logic that when I am doing something which makes me breathless or that I have to take my oxygen off for, for some reason best known to myself (actually I am not even sure why) I rush through said thing even faster, in order to make it “be over” quicker I suppose, when of course pacing myself would be a much more sensible option. so sure enough, I felt the oxygen flow stop, and true to form started rushing to pick up the kettle and fill the bottle, making my heart thump harder, and I could feel my oxygen saturations dropping (fairly unsurprising as I had just upped my physical exertion whilst receiving no supplementary oxygen at all). I managed to get myself in a bit of a state and after leaning against the wall gasping like a fish and trying to calm down, had the prudence to connect up my portable oxygen to relieve my poor little lungs which were by now on absolute overdrive.

Needless to say, both heart and lungs are absolutely furious with me for my silly antics and have been having a strop ever since. Sadly it turns out the superdooper powerful Claire apparently doesn’t like being turned up to her maximum 8 litre capacity and starts alarming crossly at me, so I have had to resort to my lower % mask and have called out an engineer who will be with me some time this evening. Not quite sure what the point of an 8 litre machine is if she won’t run at 8 litres but hopefully it is a minor problem and easily rectifiable.

Mummy has been here all afternoon, lying next to me whilst I puff away, chatting incessantly in my ear and saying medically inept things like “would something to eat help?” In other words (though don’t tell her as she is impossible when praised) being a mummy in a million and just being “there”. She has also been keeping me amused with tales from the classroom. My mother is a teacher of very small people (roughly aged 6 I think) which is the perfect job for her as she is on the same wavelength as them so they get along rather well. My favourite tales of late have been about her “mad as a badger” child in her class, let’s call him H. My mum has a tendency to exaggerate so when she first proclaimed that this child was a tad unstable none of us really batted an eyelid, however when she offered the evidence that “he has eaten four pritt sticks (non toxic glue, but am still fairly sure it shouldn't be consumed) since starting in September” it seemed that perhaps this label is more justified than previously assumed. It turns out that H likes to chew things. Anything really. What amuses me more is my mothers concerns and disciplinary measures seem to follow along the lines of moving him away from the book corner on discovering that he was working his way through the classroom’s reading resources. Amusement factor increased when she described how having taken them swimming, H was marched out to the changing rooms by the instructor holding a float with bite sized chunks missing round the edge, only to be sternly reprimanded “too much float H!!”. Clearly the amount consumed is the problem here...

Saturday, October 14, 2006

Isn’t it funny how when it comes to the crunch, all the stuff which is actually most vital for your comfort and your happiness are the little bits and pieces of life which are completely inane and you take for granted every day. The things I yearned for in hospital and am so happy now doing are simple things like lying around watching a film with my feet up on A (am a total couch hogger) and days like today, where I went to my parents house to have lunch with Dad and Abby. True to his top daddy “I like to indulge my naughty princess of a daughter” status, I was presented with steak baguettes for my lunch (I remember demanding these on several occasions in the hospital, predominantly at completely unreasonable times such as 11pm when clearly none could be purchased or located for love nor money). We then sat around flicking through photo albums of holidays over the years and chatting and laughing about them. I love reminiscing as I have a notoriously bad memory (as anyone who has turned up to visit me only to have me greet them with a look of complete surprise can confirm) but memories are one of my secret weapons for when things get tough, so I need reminding of them every so often. I am lucky and have a rich abundance of memories in which to hide in from years and years of fantastic experiences. Holiday wise we have traveled all over the place as a family, meaning now I am in a position where I can’t go anywhere (literally, I have to be within a few hours of Harefield Hospital at all times) it is ok because I have a travel brochures worth to work through in my head.

I am sure I have said this before, but I think it is so so important to go out and do things now, rather than putting things off. I am lucky because I don’t really have many “what ifs” and that is mainly down to my family. My dad summed it up today really when we were talking about going to Florida. I remember how excited I was when my parents sat us all down and asked us how we would like to go to Disneyland that year (I was 14 I think). Apparently this decision was provoked by the prospect of our family hitting some financial difficulty, and because of this potential cloud looming, my parents decided to take us on a huge luxury child orientated holiday. What a great way to tackle an impending crisis, and I think (and hope) that mentality has been passed down from my parents to me. If dark clouds are looming, go out and dance in the remaining sunshine with even more vigour!

Having said that I had a bit of a lack of confidence yesterday, A and I decided to go and feed the ducks when he got home from work as the sun was rather gorgeous and low in the sky (I do love winter sunshine it is just so beautiful). We pulled up about 60 yards from the pond, next to a pub with a beer garden, and looking at the group of men who were roughly my age, I suddenly felt very insecure about unpacking the wheelchair just to get as far as the waters edge, yet knew I didn’t have enough puff to reach it by foot. Stupidly intimidated by this, I decided to propose completely irrational ideas, such as driving to the opposite field and winding down the window in the hope that the ducks would have telescopic vision and come flocking to the car-side in an orderly queue. Weirdly A didn’t seem to think this would work, and we drove away, bread still in the bag, ducks unfed. Now normally when confronted with something which makes me feel less than pink I like to run at it headfirst whooping loudly in order to scare it into submission, but for some reason I couldn’t quite muster the energy yesterday. I felt a little sad and cross with myself for sudden complete lack of confidence but hopefully it was a one off, and probably stems from having been away from the real world for so long (I don’t feel like such a weirdo in hospital as there are many others sporting whiskers (my oxygen nasal specs) or masks. Am not overly concerned with this sudden self consciousness, my mother is off on half term next week and I am fairly certain the mere mention of "shopping" when coupled with "new shoes" will quickly override all such feelings.

I would like to leave you with a task if you please (and you thought reading this blog was just a mindless past time…). Emmie has put a great deal of time and effort into making a slideshow (with music and everything, she is such a clever girly) to encourage people to sign up to the donor register. Please click here, watch it, (all feedback welcome) and then forward it to everyone you know. You can also rate us on you tube by clicking here. Thank you muchly.

Wednesday, October 11, 2006

I have now been residing in my lovely housewithrosesinthefrontgardenandeverything for 5 consecutive days. A of course was being an absolute star, he took Monday and Tuesday off to help me get settled in properly and it’s been a fantastic few days; being thoroughly looked after, lots of gorgeous home cooked food, and sleeping in the comfort of my own home. Some things of course are a little strange and taking some getting used to. It is very hard to explain, everything feels so fast, as if I am on the tube with things whizzing by, or in a swimming pool with my head underwater and I can just hear loads of jumbled noise. I suppose it is simply an overload on my completely senses which for quite a while now have been completely under-stimulated by the same quiet environment, where everything from the temperature to the colours within are moderated. We went for a little drive on Monday, to get out of the house, and it was just so nice to be immersed back in human life. I sat back and looked out the window, rapidly exposed snippets of hundreds of different lives as people walked along the roadside going about their daily business; people shopping, people on mobile phones, people reprimanding their children for running ahead too far, people walking along dog trotting nicely beside them, gossiping on their mobile in the other hand…yes I am sounding like something out of an overly flowery novel but the point being all these things are lacking in hospital which makes me all the more appreciative of them when I come out.

I am truly loving being home, I really am, but what a huge torrent of emotions it brings with it, feels like I am standing blissfully happy on a beach but huge crashing waves keep knocking me over. Yesterday for example I really struggled. Plus I did that typical thing which people who are feeling down so often do – I felt down about feeling down, as I felt that I shouldn’t be feeling down because I should be feeling happy. This of course made me feel even more down, till it got so silly that it prompted me to smile. So yesterday I was panicking that I was feeling down and shouldn’t do, and of course today I am feeling that little bit more assured and “normal” which just goes to show don’t panic about these things as the likelihood is tomorrow will be so much brighter; it’s just a natural case of readjusting and getting my head round being out.

There are quite a few things which are a bit of a shock to the system, predominantly that I have the stamina of a shrew (actually shrews are quite hardy in comparison to current self, cant think of a good comparison at present). Having been so very ill, to the point at where eating a mouthful of something needed a long sleep to recuperate, I felt that I had come on leaps and bounds and recovered beautifully. Which of course I had, what I had forgotten was my old level prior to naughtylungcollapsingness was miles above where I am at present, and I have been sharply reminded of such since returning home. However I will adjust to this new slightly lower threshold; my body will get used to it and I'm sure I will hardly notice it after a while.

I have bitten the bullet (can you say that?) and on advice from my hospital got some home help. This is somewhat difficult for a young 22 year old - who feels like she could leap up off the sofa and start dancing around to Fame at any given moment - to get their head round. Home help is something you envisage needing when you are 80, not when your peers are either still studying or just beginning their careers. In fact I will admit it is even slightly embarrassing just typing this, and I don’t even know why. Must be a pride thing, no one wants to be dependant, particularly not at this age, but that is one of the reasons I am posting this, so people (particularly fellow pwcf) can see that sometimes in life it is just a case of swallowing your pride and asking for help…and yes I find doing that as hard as the next person. This morning a nice lady from the home help company turned up, and she really was very nice. She was professional and my feeling of utter stupidity because I am aware of how well I look and how young I am quickly evaporated. She was determined to let me take the lead and to do things to help rather than hinder, which meant even though social service form states that I am to be helped with washing and dressing (not general living needs or domestic chores, it’s a bureaucracy thing, I am not entitled to help with that as I live with someone…don’t get me started) she used her initiative and put a load of washing on whilst I was doing my first nebuliser. By the time she left I had nice clean hair, had breakfasted, washed, dressed and done my morning tablets and nebs, and miraculously did not feel the need to go back to bed to sleep, it was the most bizarre and fantastic feeling. I almost felt guilty as I had this energy left (not really used to that) which meant I could sit down and start tackling some areas of the campaign.

So am quite excited by the prospect of having some energy to be able to do some campaigning again – it is more vital than ever, not only for my sanity to keep my brain active, but vital in the literal sense. I waited 17 months for my first false alarm and am fairly certain that even with stubbornness factor accounted for my lungs will not tolerate the same length wait for a second one. I calculated the other day (whilst lying in bed trying to distract myself from focusing on my rapid and poundy heart rate) that I have been waiting for a transplant for over 13600 hours. I believe this counts as what my psychologist would call a distraction method, time to don my proud face methinks.

Sunday, October 08, 2006

A tiny update just to reassure people that I haven't dropped off the edge of the planet; the internet connection in the hospital decided to die on me on Wednesday, reaffirming the fact that I should clearly be heading in the home direction.

With test results remaining "stable", on Friday, I was discharged on "Weekend leave". However on doing so, I packed up my entire room, and my name was wiped off of the whiteboard for the first time since July. I was meaning to say goodbye and thank you to various members of staff but cried when I attempted this with the ward sister therefore aborted this idea quite swiftly. So mum and I quietly (well relatively speaking) loaded up the car, and left the hospital. As I say I am technically on weekend leave, as I will be ringing on monday to check in, but I have no fixed return date for the first time since this whole episode began. We are taking things very cautiously (hence me not posting this until today!) one day at a time....but for now, it feels indescribably good to be home.

Tuesday, October 03, 2006

People have asked me before if I have any kind of belief, or faith that keeps me going. I would say that I do, but it is not of the religious variety – I have a faith in myself (oh dear this is already sounding completely over egotistical) and in people.

I sometimes feel quite removed when looking back at what my body seems to overcome, replaying it in my head and watching with the quiet awe of a detached spectator. And whilst ok it is not the most well behaved of bodies, and is slightly melodramatic in temperament, when the cards are down it really does manage to battle through some pretty undefeatable scenarios.

I have faith in people because time and time again if I am feeling down, or struggling or waning in energy and enthusiasm, people carry me through. Most commonly (and obviously) it is my family, who seem to know innately whether I require an abundance of foot rubs and hand holding, or whether actually what I need is turfing out of bed and wheeling down the road, regardless of the look of complete pouty rage I am then sporting as actually what I fancied doing was hiding under the covers and scowling at anyone in sight.

And then of course, there is my extended support network, which begins with friends who time and time again put up with emails, phone conversations and visits which seem to revolve around me and my lungs. This support network however stretches out to all sorts of amazing areas, to people I don’t even know. I have received so many lovely messages, emails, cards (there are well over 100 in my room now) and letters, not to mention presents from all of the above. I am thoroughly spoilt, and I know it, and I love it, and I am thankful for it. But because I hardly ever get round to saying so individually (I would blame this entirely on poor health but those who know me well know even if I was well there would be little chance of me getting my act together enough to write thank you cards or anything) I wanted to just vocalize how much of a difference this does make. You never know exactly how much even just the words “thinking of you” can mean to someone. Classic example – literally minutes before my pleuradhesis last week, the post arrived, with several lovely presents and two cards, which distracted my attention significantly (a bit like how you wave something colourful and shiny at a baby before giving it a flu jab).

This post has been in the pipeline a while, but was prompted by the arrival of today’s large brown formal looking package. Imagine my surprise (and delight) to have it cut open for me (automatic job now done by nurses following a small incident involving scissors, a plastered finger and pouty face a few weeks ago) and to find many many tubs of sweetiebobbles with the only explanation being a small note from the company, Supercook, urging me to enjoy my favourite indulgence! Incidentally large pink über-cuddly dog (who is called Noodle) pictured staring in awe at said sweetiebobble collection was sent to me by another company called rockedout.com, who discovered that I rather like all things pink and fluffy and sent Noodle to me to keep me smiling. As I may have already pointed out in this post, I am clearly very spoilt, and now proud owner of quite possibly the largest and most extensive collection of sweetiebobbles in the entire world.
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Anyway the point of this is to say that everyone’s support really does make a difference, and has done all the way through. When I was in intensive care and HDU my parents and sisters were reading out messages to me from here, from forums and from emails, and are pretty convinced that it helped significantly. People support me and help me through.

I get strength from people because they are what I love about life. You can make a difference to someone without even meaning to which can make a mark on their life forever. I am not saying it is all good because I am not that stupid or naïve (even though this post is sounding vaguely hippy) but I genuinely have multiple examples and reasons to demonstrate what a positive impact small actions can have. A nurse was talking to me just last night about a patient she nursed once right at the beginning of her career. This patient was quite unwell and the nurse came away feeling deflated and that she hadn’t done enough and clearly nursing was not the right job for her. The patient however left her a note, thanking her for all she had done and highlighting the ways in which she had made a difference. That note, whilst scribbled in passing by one patient on one admission is the reason she is still nursing today.

It isn’t just actions directly related to me which I utilize and take strength from - it is also important to look to other people and stay in touch with their lives to ensure that you remember that everyone has their own problems, worries and issues, which is incredibly healthy as it keeps mine in perspective. The world does not stop turning just because my lung has decided to sit down on strike, plus seeing how someone else deals with their own problems can help me tackle mine. I also need to have faith in people of course because ultimately it is going to be a person who makes the decision to sign the organ donor register - combined with a family who makes the decision to ensure those wishes are carried out, perhaps in spite of their own grief - which will hopefully save my life. It all comes back to the idea of choice again (check the name of my blog for clarification of my views on that) – it’s not that people always do good things, it is that I am inspired by the many examples of when they choose to do so.

This is why I believe in people.

Good grief I waffle far too much and still have more to say but think I should stop there. Quick summary health wise then for anyone who is still awake; we are definitely still headed in the right direction and drawing ever nearer to “extended leave” (and by that I am talking in code and mean extended for a very long time but just don’t want my lungs to get wind of it just yet). I have decided it is high time I was going home now, hopefully release is now in the pipeline somewhere. Not so much because this is week 11 (77 days tomorrow since my lung first collapsed) but more because A has started including items such as lilt and bounty bars in his 5 a day - a clear sign I have been gone too long…

Monday, October 02, 2006

I am back within my four little powder blue walls, the slightly too neon bed light shining brightly and the fan whirring quietly in the background – but what a blissful weekend that was – I am so lucky to have such a wonderful little home to yearn for (not to mention the obviously wonderful people who make it so) and you know the nicest thing? It’s always better when I get there than how I was imagining it. I was feeling slightly fragile when picked up on Saturday which A detected immediately and consequently I was transferred from hospital to car to parents house in 5 star rating style (how is it that no matter how poorly I am he manages to make me feel like a princess rather than an invalid). We stopped for lunch at my parents – gorgeous yummy salady stuff (oh how much I long for a salad when in here which sounds ridiculous but fresh food is scarce and rare in hospital) and I was spoilt thoroughly there for a while, before returning to little house to curl up on the sofa…and fall fast asleep. What a waste of precious time there but I can’t help it; the minute I sink down I can feel muscles that I wasn’t even aware were tense relaxing and within minutes I am dead to the world. A obligingly put on and watched entire film before gently rousing me for dinner. A lovely quiet evening ensued (surrounded by the pink balloons and banners A’s mum had adorned the house with in my honour) and I slept soundly in my very own bed. Observant blog readers may well notice distinct lack of pink in lounge (comparatively I mean) our lounge is all gorgeous earthy natural colours (I had huge fun “dressing” it when we moved in) demonstrating I can actually stray away from it sometimes you know…

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Dozing on the sofa...

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Yay welcome home me!

Pink and smiley cake was transported home for all to admire in its glittery fabulousness, and grandma even commented on its quality (a compliment far more worth having a) because she is an expert, particularly at fruitcake, and b) because her compliment consisted of more lengthy and technical wording than “mmm itsh gwd” due to mouth full of cake, as uttered by me and my mother). Today large dinner of the roast variety was consumed (a la daddy, my favourite) and general family misbehaviour and talking (only missing Lu who is uni-ing and who we did toast to) interspersed with more dozing on my part. Feel absolutely brilliant for having been home and cant wait to get a bit stronger and return slightly longer term, yay!

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Just a tiny bit excited to be in own bed then.

Since being back I have mostly been nebbing and physioing (neubuliser = inhalation of drugs to help breathing, physiotherapy = various breathing techniques to aid clearance of lungs, for anyone who doesn’t know!) as naughty lungs are throwing a mini strop this evening - probably due to returning to hospital when they were quite clearly happy at home). Physio has never been the easiest of things for me to do as (following now typical procedure) my lungs behave in a most disobedient and naughty manner, pretending at first that there is lots to clear by rattling away merrily thus duping physiotherapist into settling down to do some good work with me, then merely one cycle in and lungs are squeaking with glee, a tight and wheezy as anything forcing us to abort all attempts. Most affective methods of physiotherapy for me include anything which may appear not to actually be physio (thus tricking my lungs into thinking they aren’t actually doing it at all I suppose). Much like one would have to do with a five year old child then…