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.

“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.

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.

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.

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!)

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!

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...

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.

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.

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.

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.




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…

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…

Dozing on the sofa...

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!

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…

I didn’t want to update until it was looking as sure as possible but here we are in the early hours of Saturday morning and by all appearances my lung is still up, and more importantly…the drain is out. It was removed yesterday late afternoon after being clamped for 24 hours. I didn’t want to blog or tell anyone as each step progressed as I have been all the way down this path before to the point of packing my room up, and then three weeks later am still sitting here. However so far so good and it appears I will be heading home for weekend leave and it is all a bit surreal. These collapse episodes seem to drag on indefinitely with foreseeable solution or end, when suddenly things will turn a corner and everyone will rush to seize the chance and turf me out for some respite and freedom asap, which is what we are doing now and it is almost a bit overwhelming. I will be heading back here on Monday for a bit more rehabilitation work but we are oh so close now!

It was quite lovely timing as the doctor who removed it was one who was leaving that day. There are a really good group of doctors on the CF Team at the moment but I will still miss her an awful lot. She has been treating me since the beginning of this episode and has worked tirelessly (as do all the staff here but she just goes that extra mile) to try and get me and my delinquent lung back on the straight and narrow. It was a nice bit of closure for both of us I think, as it signifies (hopefully) the end of this particular rough patch which has taken a great deal of battling and hard work on all sides. It was quite an emotional moment.

I had some lovely visitors today although I managed to greet one group of them in a somewhat dramatic fashion by bumping into them downstairs outside Xray, demanding to be taken up by them (was bored of waiting for a porter) then dramatically running out of oxygen in the lift resulting in much chaos and formula one style racing around 1st floor whilst trying to find an O2 point. Some time later having regained composure and retrieved a new cylinder we returned to my room (where poor visitor #1 had been somewhat freaked out by the porter returning to question her as to my whereabouts when she had seen him wheel me off half an hour earlier) where I was presented with my rather spectacular present as pictured below. Those who have ever spoken to me on msn will recognize the smugface (which incidentally I am trying to replicate in the second photo, not just unable to smile nicely). Pinkandsparkly cake shall return home with me this weekend to celebrate first time at home with a non deflatey lung, nothing more to add really except a wholehearted, gleefully toe-wiggling, beaming from ear to ear and completely over excited YAY!

Just under 24 hours after general stickinducingness was performed and the drain is now clamped! This is the next step, and so now we wait to see if tinylung can stay standing, before we contemplate step 3, which would be drain removal! Just to explain a little more as to the procedure I had done yesterday (as I now think I have got my head round it therefore following this probably naïve believe will attempt an explanation) – because my lung was being a stubborn little blighter and refusing to stay up nicely all on its own, we needed to make it stick. Putting something man made in there (like superglue or a perhaps less toxic version) wouldn’t be good as…well you have seen the damage caused if you have ever superglued something and then tried to remove it, and we are hoping to get these lungs out for transplant!

So what they have oh so cleverly done is hopefully provoked my body into creating its own weak form (pritt stick if you will) of glue. This was done by making it inflamed, because when you make something inflamed, it produces proteins which are naturally sticky. So this drug was injected not because it was sticky (as I previously thought) but because it makes the little lung cavity so inflamed and furious that it throws all this protein out in a fit of rage (a bit like I do when I am angry and I hurtle pots of tablets on the floor then pull a satisfied naughty face as it does make me feel better) and all this inflammatory response will make the lung stick! Hey presto!

Of course unfortunately inflammation can be quite sore, and we were attempting to cause a huge response in a very short space of time, which is why it hurt so much. Therefore my complaints of burning swelling and bruising sensations whilst met with sympathy (the staff were as always going beyond the call of duty to do whatever they could to help) were kind of cause for celebration as it means its working. It is not a nice procedure to undergo BUT hopefully this will be my pass card out of hospital so I was willing to go for it. I just kept concentrating through gritted teeth on my lounge at home, on my pink room, and on my own bed. Even if I can get home for a bit it will all be worth it. And once the initial huge swell of inflammation had passed, we are now down to a much more tolerable ache and bruising sensation, and I really don’t mind that at all. In fact today I have been merrily talking the ear off of anyone who has entered the room; I always feel pretty grateful and chirpy the day after a very bad day, as everything automatically seems so much easier and nicer. Thank you for lovely emails/texts/comments and things as always, muchly appreciated and of course all those sticky thoughts - I’m sure no one else in the world can be asking for sticky thoughts so I am not depriving anyone of them by hogging them all so keep them coming!

Shortest of updates – chemical pleuradhesis (germanstickyuppydrug pumped in) was carried out this afternoon. Wont lie, it was rather painful and not very nice. My daddy was here, A arrived straight after work, and dear mother staying the night. Took a while to get on top of the pain but am much more comfortable now. A couple of hours or so of constant morphine juggling, that first moment of being able to relax after muscles had been shaking and tense was just so nice, I reveled in it!

Drain now unclamped to allow fluid (plus bleeding caused by tiny agitated lung wall being so furious) to escape. Just so to clarify, this type of procedure is not the gluing that prevents transplant, it is a much more natural but therefore crude version. Please all think extremely sticky thoughts, the stickiest you can, as there is only 50% success rate with this procedure and don’t particularly want to do this again any time in the near future.

Yesterday continued weekend’s theme of being social butterfly thanks to certain fabulous family and friends who (nearly 10 weeks on) continue to traipse up to London to make me smile. I had visitors in and out all day, the final ones (mother and her lovely friend) carried out essential maintenance such as painting of toenails and aided me in donning pretty new PJs which are, newsflash: not pink but a gorgeous sunny yellow, albeit with essential pink flowers to prevent lackofpink hissy fits.

I had the agency nurse from hell this morning. I suspect other people with CF reading this already have a vague inkling the minute I mention the word “agency”. You see there is nothing wrong at all with being an agency nurse, but CF is an extremely specialized condition, therefore the care given in hospital is somewhat different to how you would imagine a patient to require. Normally the nurse is needed to control all timing, distribution and taking of medication, whereas in some cases the pwcf does all of these things (although again this varies; I am very restricted mobile wise so have much more help.) Being woken up to nurse bellowing in my ear and insisting the main lights are switched on so I can sit up and take all 22 morning tablets in one go (I prefer to space them out throughout breakfast, been doing this 20 odd years, got a bit of a regime now) did not go down very well. There may be some evidence towards the fact that my temper was a tad frayed already (fan blew my cup full of straws off my bedside table so I sat in cold rage and gave it deathwish evils for a considerable length of time) but clearly initial description is both calm and rational.

The next day or so will be slightly challenging as I am currently going through all the talks which are unthinkable, unpleasant, but necessary, such as end of life care, and tonight, the writing of wills. This isn’t a sudden thing they have sprung on me, we are going through these issues for my sake as I work far better when I am informed as much as possible; it is almost like if I can see my cards all laid out on the table in front of me then I can cope with whatever hand I have been dealt, but I am not very good at the “what-ifs” and end up wasting a lot of time and energy creating new ones (I am surprisingly over imaginative, this process can go on a while). Actually if I am honest so far it hasn’t been unpleasant at all. It is sad – at points very sad – and I suspect the end of life one with the doctors will be quite frightening, but with each tear or moment of sadness, or difficult thought that I finally vocalize, seems to come more of a calm, because I was thinking through them anyway, and do you know what vocalizing them doesn’t suddenly make them any more imminent, it can simply help you face them and tackle them however appropriate. And anyway as my mother pointed out (sometimes beneath her overexcited and childlike exterior she is really quite wise) everyone should have a will, it isn’t morbid it is common sense, so I might as well get it done and dusted.

A dear friend of mine with CF who somehow ends up on the receiving end of a lot of my deeper and most confuddled mumblings and I were talking about the issue of end of life care today. Due to our shared sense of slightly inappropriate humour, the (originally very helpful) conversation meandered slightly and ended up somewhat like this:

Jac: I want all the top doctors working on me in an ER style
Me: Yes - you should state that you want ER theme tune pumped in at all times
Jac: Brilliant idea! That would keep me going, and then I will miraculously recover and happy music shall play as I dance into the sunset…
Me: Ooh interspersed with doctors shouting “Damn it woman, we’re losing precious time!” etc at regular intervals. For effect.
Me: You know they don’t do that in real life?? It’s all very calm, I was highly disappointed.
Jac: Yes it’s all rather dull in fact. No one has ever straddled my trolley as I was wheeled into a lift being given CPR
*pause at this end for coughing fit induced by laughter*
Jac:It’s normally just a porter with BO saying 'so been in long?'
Me:And why is it that it is never a glamorous moment where two extremely sexy doctors who rush to your bedside holding your hand and gazing with concern into your eyes? Whilst everyone else runs around going “Give me twenty of saline!” or some such useless drug...
*continues in similar vein for some time afterwards*

I have a small inkling that the talk with the doctors here won’t quite be along the same lines.

Lung wise – after a good X-ray early afternoon gave us the green light, drain is now off suction again for 24 hours to see if it will remain upright on its own so think inflatey and stickyuppy thoughts please! Essentially today I have been very smiley – once these things are out in the open and out of the way I can crack on with getting out of here, living it up a bit (in my own unique way...) and hopefully getting this transplant. Plus when you glance down and you are wearing PJs which remind you of a sunny spring morning what else can you do?

Following the fantastic and unpredictable course that is life, I have had a lovely couple of days. It started when A took the afternoon off work on Thursday, meaning that I went to sleep Wednesday night knowing Thursday would just be better. The morning was quite tough as I was in a lot of pain and had trouble getting on top of it, but once we got the right dose of morphine I was comfortable enough to go down for Xray, and it showed that with suction back on the lung is nice and inflatey again. Consequently, and due to bad behaviour the minute anyone’s back is turned, naughty lung remains on suction over the weekend – the medical equivalent of being placed on the naughty step for an extended “time out”.

Whilst he was here I spent a good deal of the time conked out dozing (he is such a patient man) but I was just so much more relaxed and it was lovely to spend a decent length of time together. I don’t tend to be soppy on this blog so I will simply say I would gladly swap my lifetime supply of sweetiebobbles, glitz, and all things pink to get back to our little house. At least I am constantly reminded of just how amazingly lucky and happy I am in my home situation as too often it is easy to take these things (and people) for granted.

Yesterday I had one of my favourite hospital pastimes, which is having my hair washed. Obviously depending on how well I am alters how this is done, and some of the methods are most ingenious, an example being the one employed at present due to chest drain restricting movement quite severely. They have the most marvelous and high-tech contraption here which is essentially a plastic bowl with a bit U shaped lip on a stand, so you can raise it to fit round your neck, then there is a hole in the bottom with a nice piece of elephant tubing which feeds into a sharps bin (ah, resourceful). This hair-o-matic2000 (or whatever they may call it) is superb for someone like me who is currently restricted to about 3 ft from my bedside therefore reaching a shower head is out of the question.

I am a very physical and tactile person, when I was at my most unwell and couldn’t really talk or move much I would gesture to have someone just rubbing my feet or stroking my hair, and apparently you could see the physiological changes in elements such as my heart and respiratory rate. I think this may stem slightly from the amazing care I had when I was in hospital at birth; I had an operation at one day old and on the special baby unit, timetabled in amongst the feeds and antibiotics and so on was “cuddles” – an actual prescribed and time allotted activity. Most important for thriving I am sure anyone would agree, although consequently I have remained highly cuddly and needy ever since. Living in a very affectionate family at home this is not an issue. When you are in hospital not only is it rare (due to it probably being against hospital policy for a doctor to come in and throw their arms around you) but impractical, as chest drains and various other implements do not take kindly to being squished by my mothers overenthusiastic hugs. So something as simple as this salon style experience (and let’s face it girls who doesn’t like having their hair washed for them!) becomes a highly relaxing, therapeutic and luxurious one, and I would strongly argue for any case study which looks into the benefits of some such complimentary treatment (head massage, reflexology or similar) being beneficial to inpatients. The whole hair washing experience was great fun; at one point I had three people in here assisting me, Diva to the extreme as surely even Mariah Carey herself doesn’t have that privilege.

I also had my first appointment with the psychologist here, who I found very friendly and am confident that she is going to be most helpful. The best sign being she wanted to listen to what I want to say and also what I want to do about it - sometimes I think professionals aren’t that keen on the fact I have a plan of action (there may be slight control freak traits here, stop those unsurprised and naughty faces you in the back who know me too well) in mind already as they feel their job is being done somewhat but she seemed eager to simply expand and work on this. This blog is already far too long so I shall expand on attempted retention of marbles at a later date. That afternoon of examining huge questions about life, existence and inner fears was nicely topped off when - feeling somewhat philosophical and learned - I discovered another one of life’s all important lessons; that balancing a plastic cup on the bed whilst pouring from your black water jug one-handedly (which are amusingly heavy seeing as they are designed for weak hospital persons like myself) inevitably ends up in an ice cold and surprising disaster. How much there is to learn in the world.

This morning brought another episode of excitement when I discovered that the private patient room down the corridor which has a balcony (well ok, bit of fire escape that you can fit a chair on, your idea of balcony may vary from ours) is not occupied this weekend. Putting on my best pleady face, I asked if I could go and sit in the sunshine just for a bit, because as mother would say, the fresh air and change of scenery would do me the world of good. Lovely helpful staff quickly assembled to form my entourage required when I need to leave my room, mobilized me plus multiple gadgets down the corridor and got me settled. I sat outside, 3 floors up so level with most of the roofs and trees, closed my eyes with the sunlight on my face and it was just gorgeous. Read for a while, and then some lovely friends came to visit, and obligingly sat down on the floor of said balcony so I didn’t have to retire back to the room, and sat and gossiped in the sunshine and had a really good giggle. The return journey was most amusing, I wish I had had a video camera as I would upload it on the blog (obviously with camera would come sudden innate knowledge of how to do such a thing). My entourage consisted on return journey of 6 people – my friends plus two nurses and then me waving merrily, and we made our way slowly along the corridor in some kind of bizarre, slow and stately procession. I suggested a sing song as we filed down the corridor but for some reason that idea wasn't jumped upon with enthusiasm, can’t think why. As a result of this increasingly common Diva-esque behaviour, I am now seriously contemplating the necessity of purchasing ridiculously oversized sunglasses (in style of Nicole Richie or similar) and insisting on wearing them wherever I go. The look is everything sweedie dahhling.

Even pink people who are made out of pretty strong stuff (the stuff brighton rock is made from or similar) reach a breaking point, and I reached mine today. It was an imminent cracking to be honest, I have been feeling increasingly more down despite attempts to pep myself up and knock myself out of it (not in the unconscious sense although that is something I shall bear in mind).

Due to having lots of time to think, I usually try and work out why I am feeling the way I am, psycho-analyze myself I suppose, and I think I worked out the root of my inability to sleep today. This thing of not being able to relax and to rest, and jerking awake every time I start to drift off – you know that feeling you get where you are falling and then you suddenly start and snap awake – it is happening with regular monotony. What should be a pleasant feeling of relaxing, muscles easing, breathing slowing, is somehow making my body click into an alert and fighting state, and I think (after a long and very cathartic conversation with a friend) that it is linked to the day I was transferred to ICU. As I said in my blog describing that day, I felt incredibly calm, peaceful and comfortable really, and yet of course was fully aware that I was actually fighting for my life, and at that point was very much losing the battle.

I think that this experience of feeling so comfortable juxtaposed with the knowledge that at that point I was in danger of dying has instilled a new fear of me, which I managed to vocalize to a doctor today (despite feeling thoroughly stupid and melodramatic whilst saying it) I think my body is scared of falling asleep and never waking up. There. The second time I have said it, well written it, and it brings on the tears again, but followed by a nice lift of weight from my shoulders. I do feel ridiculous saying it, as clearly I am nowhere near where I was 9 weeks ago, but my brain is struggling to cope with it all. These inbedded and unresolved fears, plus tiredness caused by them, coupled with todays X-ray revealing that just 24 hours after coming off suction my lung has started to deflate again meant the tears finally flowed today. Quite significantly.

I think that is a good thing, everyone needs to have a good bawl now and then, it’s healthy, and helps you pick yourself up and brush yourself off again afterwards. I am not going to be any kind of martyr however and am enlisting a bit of extra help and support. The team here really is great, they are going to work hard to help me get back on track, and if that means a team of people help me, denzel (my wheelchair), the O2, the drain, and the suction pump sit outside to have a coffee, then so be it! I am also going to speak to the psychologist here, think it will do me some good, and there’s quite a bit of the last 9 weeks that I haven’t really worked through yet. Lung wise, due to obstinate sagging of lung, the suction has been re-attached which of course throws a spanner in the works of the whole injecting the germanpowderstickyuppydrug, as the lung has to be up and touching the lining in order for the drug to stick it, otherwise I will just end up with a furiously inflamed and sticky lung waving wildly around a small airspace or something similar but more scientific and slightly less dramatic. We aren’t quite sure what to do about that yet, but the doctors are working on a new plan, and I will just stay on suction in the meantime, in order to keep the lung as upright and well behaved as possible.

The most important thing I have decided is to allow yourself a good howl, then look at ways of combating the difficulties, alleviating them as much as possible, and slowly moving forwards slowly but surely. Everybody has these moments; all will be fine I know it.

After writing the above I listened to a radio interview by Alan, Mary’s boyfriend, and two other people who knew and worked with Mary. The interview was fantastic, gave a wonderful insight into Mary and her hard work, but most staggering of all for me was Alan’s courage and strength in speaking so openly so soon after losing her, and still managing to plug organ donation, and to carry the torch for those of us still waiting and hoping for that gift of life. There is having to be brave and pick yourself up, and then there is phenomenal and selfless courage and strength as has just been demonstrated and has totally humbled me. Alan, Mary would be beyond proud.

It is 2am so now Wednesday morning and therefore 9 weeks since my lung first collapsed, and I think I may be finally losing the plot (yes there is an assumption there that I had any vague grasp of it to begin with). The last few nights I have found it quite tricky to settle, getting to sleep around 2.30/3am. As a hospital never sleeps, the phone by the nurses’ station will sporadically ring throughout the night. Every time it goes I now find myself sitting up, craning to hear any sound of movement or excitement, and wait with bated breath hoping that a few minutes later the phone in my room will ring, and it will prove to be Harefield ringing to tell me they have potential organs. I go through periods of not dwelling on transplant at all to it taking up a good deal of thought time and recently the desperation has really kicked in again. This combined with the slightly flat (nay, deflated, much more fitting) over the last few days has made me worry about my mental resilience, and whether I am holding up all that well at the moment. However I needn’t have feared as in good old typical completely illogical style, my brain seems to have jumpstarted itself in the most bizarre fashion.

Having come off of suction earlier today, I have been trying to move around the room more, it is an absolute joy just to be able to walk to the window or into the bathroom and back, even though this is quite a precarious and tricky act ensuring all tubes buckets and wires are in the correct position and not tugged. On returning to bed a short time ago, I bounced up onto the mattress and in a slightly over enthusiastic bid for independence used my right arm to push myself up onto the bed. Clearly not the most sensible thing to do when you have a drain precariously balanced in between your ribs. Something wasn’t too keen on my acrobatic attempt and I felt a little nudge, followed by a rather incensed and wheezy sounding puff. Puzzled, I breathed in and out again and gave a little cough to try and locate the source only to realize indignant puffing was coming from the hole in my chest, and by putting my hand there I could feel the air puffing out, quite a bizarre sensation. You may not be surprised to hear that this is not listed in the big book of things that chest drains are supposed to do. Strangely enchanted and fascinated by the new talking hole in my chest I coughed a few more times – just to make sure I suppose, perhaps it follows the mentality of prodding a bruise or something to find that yes that does in fact still hurt – before bleeping the nurse to tell her that I may or may not have misbehaved at the dead of night yet again.

She went off to call the doctor and she came swiftly to have a quick look. So at 1am I was in the interesting position of sitting on the bed, with me, the doctor and the nurse all staring intently at my chest, straining hard to hear of any signs of escaping air. The doctor began feeling to ensure air was not gathering under the skin, checking the breast tissue surrounding the drain and out of curiosity I also started poking around the surrounding area. We then began poking at the left side of my chest in order to compare, all whilst listening in hushed concentration and no doubt pulling that face of frowning and staring upwards which is somehow required, when I became acutely aware of just what this scene of intense nighttime groping may look like to someone who happened to walk in. Suddenly I was overcome with the overwhelming desire to giggle, not particularly advisable when wanting to appear convincingly sane. All seems fine however, and the puffing died down fairly rapidly, so she has stuck an airproof dressing over the top as a precaution but my obs are excellent so we will ignore it till the morning unless anything changes.

You see this is why I love my little brain. I love the fact that I should have (and would have expected to) pout considerably over this and yet my brain decided tonight that it would find it immensely amusing, thus using it as leverage to snap me out of a malaise I have been in danger of slipping into. I would like to take credit for this and say that it is some careful planning and forethought that allows said event to amuse me, but sadly no it is a case of simple minds simple pleasures, or rather illogical minds illogical pleasures. It reminds me of the tableontubitis episode as documented here, which had a similar affect on my mental state. Think I might attempt some sleep now, you never know I may even behave myself until the morning if the poor on call doctor is lucky.

Sorry for the slight lapse on the blogging front for a few days, which rest assured is generally a good thing as it means I am pootling (an existing word? It should be…) along in a rare but calm manner – any naughty lung behaviour or groundbreaking events (such as my transplant) should be reported on fairly swiftly. I have been feeling a little flat, definitely nothing to worry about, I am sure it is just down to having this drain in which although the pain is far better controlled this time round is still just…well very draining (terrible pun there I know but it was the adjective that has been firmly stuck in my head, plus it makes me smile to describe it as this so I thought I should use it).

Anyway I don’t know why I am flat because I actually had a rather lovely weekend! Got to see a variety of family and friends, my favourite moment being Saturday afternoon when unexpectedly my whole family ended up up here at the same time, and it was just so lovely to be sitting and chatting, the five of us together for no big reason such as a major lung related drama or imminent possible removal of current pair. The other rather thrilling thing which still makes me scrunch my toes up with glee is that I had the surreal and exciting opportunity to chat to one of my all-time favourite people – you know those ones that you list on who you would invite to your fantasy dinner party. Somehow, some kind soul tracked down and contacted the comic genius that is Bill Bailey (anyone who does not know who this is I demand you leave your computer desk this instant, equip yourself with a copy of “Part Troll” and educate yourself) knowing that he is one of my heroes, and suddenly I found myself in the exciting but slightly nerve-wracking position of waiting for a phone call from someone whose work I quote in conversation all the time. Having avidly watched my phone and willed it to ring for quite some time, I managed to throw it on the floor with excitement when it did ring, then thinking I had picked up shouted “hello” rather over enthusiastically to a still ringing phone, thus missing the call. No need for a pouty face however as this merely resulted in a voicemail being left, which I may or may not have played back many many times already. I am allowed, I have been in hospital a very long time and let’s face it, comedy legends rarely call me.

Due to knowing much of his stand up routine inside out, combined with the knowledge of my own rather reliably blonde nature, my one biggest fear was that I would start quoting back some of my favourite bits during the conversation like some crazed loon (wouldn’t be far wrong then) which I am pleased to say I managed to steer clear of doing, although there was vague mentions of a trouser press at one point but I don’t believe I was to blame. He was absolutely fantastic to talk to and I twittered on for quite some time - he was very friendly, interesting and of course very witty.

As for my lungs, I think they decided to have the weekend off from misbehaving as they were sitting quite quietly, probably in stunned surprise at speaking to famous comedian, and the drain has even not been bubbling that much which shows less of an airleak. Mind you they did have a bit of a hissy fit at about 1.30am on Saturday night, when they took a strong dislike to the intense and severe coughing fit I was experiencing causing a fair amount of pain and the drain to go absolutely bonkers and bubble like a cauldron on a low budget kids horror film. X-ray the following day revealed no real change so I am sure it just my lungs reminding me that they are still in control Which reminds me there was a question from someone about bringing the X-ray machine up to the room? They often do that for me, but this pneumo being a nice complex one cannot be seen on a normal front/back X-ray, I have to have what is called a “lateral” which is where you stand sideways on, that being the only way you can see this air pocket due to its positioning. Laterals can only be done downstairs with the proper screen, just to make life a bit more interesting and get me that bit more attention as I traipse through the hospital with my entourage, suction machine and all!

I am waiting for the doctors to put in an appearance so I can jot down this weeks plan, but you can guarantee delaying posting this will result in them not showing, so I think I will blog now in the hope it encourages them to turn up just after I publish it…and sure enough as I wrote that, in they all traipsed, hurrah! Drain to stay on suction till tomorrow, when they will take it off suction (ie take down the scaffolding) but leave the drain in place. If all goes well and it stays still, we will discuss whether to do this medical pleuradhesis whatnot, which is the injecting powdered german drugs thing into the chest drain. I explain things so well, I could be a medical lecturer me.

Am having to do my own typing tonight, which is a shame as I could get used to lying there idly dictating my thoughts to some poor scribe. I suspect everyone will be pleased to hear however that diva-eque behaviour has continued in my medical care. Due to now having a drain on water seal (large bucket with water in which prevents air from reentering tube, v technical) and said bucket being on suction (even larger machine plus more tubing which connects to bucket and generates constant pulling pressure, in my mind dispatching many tiny men with rigging ropes to manually pull my lung up) I am once again restricted to my bed, and the immediate surrounding area. I don’t mind this at all at present, as the morphine combined with lack of sleep (this drain doesn’t like me lying down) means I am fairly dozy, so bed is where I want to be. This restriction being the case however, going down to X-ray was great fun and involved quite an entourage of equipment and people to carry equipment – I did feel the strong desire to don some sunglasses and carry a minute and rat-like dog in my handbag, but managed to restrain myself to slightly more “in patient” like behaviour.

Shortly after the X-ray, my doctor burst in saying “can I speak to the lady with two fully inflated lungs please?” at which (rather unintelligently) I looked at my sister, as if my doctor would really be that heartless and revel in my deflateyness by using it to distinguish between me and my visitor. Of course what she actually meant is a mere 24 hours after insertion, the lung is up! If I had the energy I would have whooped and danced for glee, but I am quite tired so did so inwardly and gave an energetic thumbs up instead.

For some reason (cant think why) they appear not to trust my lung anymore, so despite all appearances of inflateyness, the drain will stay in for a week now, to make sure that not only is the lung up, but that it is sticking nicely to the lung lining in an inflamey manner. Having spoken to the transplant team, it has been decided that injecting some sort of antibiotic to create even more inflammation and therefore sticky behaviour is the way to go, and wont throw any spanners in the transplant works, so the team have ordered the drugs from Germany (!) and I will have that done sometime next week. Quite a sore procedure I think but they inject local anesthetic with it so I’m sure it will be fine. And anyway who cares because for the first time in 56 days MY LUNG IS UP!

Apologies for slightly worse than usual English tonight, I blame the drugs and/or tiredness, plus the jam donut I just enthusiastically munched spilling sugar all over the place isn’t helping. Mind you perhaps I do just need a permanent personal assistant to act as my scribe…

Hurrah for the ultimate Diva behaviour. Am sitting dictating desired words to A who is typing ever so nicely, although additional compliments may be inserted by him, not me…

Short entry to say, drain is in. They put it in today, the delay probably being due to having to find head radiographer from hiding place where I suspect he ran to upon hearing my name. I was much better behaved this time, A only heard me yelp once even though procedure was actually more complex and took longer; my doctor says I deserve an award, as I am the only person she has ever seen make the head radiographer break into a sweat. We are being much more aggressive with pain management. Cant have too much morphine in case lungs forget to breathe, due to being too high, but, so far so good yay! (Emily had to explain how she wanted ‘yay’ spelt, never come across it in my vocab!- ooops, now Em saying that I don’t read her emails properly!)

Off to be looked after now by my lovely man (she did dictate that!- but oh how true!)…
As always thanks for all of the thoughts and wishes…
And now, a shock moment of rarity- I’m going to let A get a word in edgeways (she must be unwell!)

Saw Emily enter a large doughnut today. Interesting… CT scanners are a sort of mythical machine that us ‘visitors’ never get to see. But I was allowed into the room (they think I work here, because I am here so much) before they started the scan, and it was indeed an impressive machine. Sounds very odd to say I wanted to have a go, but it looked quite space age and fun! Needless to say, it was not fun, for Emily. Came back from getting a healthy hospital snack (crisps) and a hot chocolate (wish I had as much interest in a treadmill, as I did with mechanical doughnut)- to the sounds of pain. Not pleasant I am sure, but apparently, much less than the previous occasion. Very odd thing- to be in the waiting room and feeling proud of someone- someone working very hard, being amazingly brave and facing the fear of the procedure that was so horrific the last time.

After reading Marie-Claire, June, July and an Xmas special supplement (lovely waiting room reading material- left me thinking, are men allowed in here!) I was reunited by a surprisingly calm and mellow Emily, smiling and being very good. With my top tips for the summer and horoscopes for December 2005 fresh in my head, I assisted in taking Em back to the ward. What a lot of pain, agony and effort. But, all faced head on by a pro, Em doing her battling routine with herself, and keeping on top of the pain. Treadmill really needed now, for I have consumed bits of her dinner, chocolate bar, crisps, lilt and other bits and bobs. How nice. But all worth it, to be close to hand, to move a pillow or adjust the lighting. Soon I will be too large to get up and turn the light off, so please submit your entries. Anyway, we are enjoying a calm and relaxing evening and despite the pain, Emily is in fantastic spirits and we have had many laughs and cuddles.