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.

Things are tough at the moment. My lung is persistently misbehaving – not only is it refusing to come up, and sitting about 1/3 of the way down in a fairly deflatey and obstinate manner but I am getting slightly more symptomatic, although these symptoms seem to appear at the most unhelpful time such as 8pm at the weekend, so that my consultant has to trek all the way in (which to her credit she does) and then said symptoms seem much reduced again come the morning when all the doctors are there fresh-faced and ready to tackle things in actual daylight.

The bottom line is that 5 days on, there has been no improvement. This means that the only option left will be a drain. the sooner the drain goes in the better, as the longer the lung is down the harder it is to encourage it to reinflate, due to it’s now cardboard like properties as opposed to nice stretchy elastic behaviour that healthy lungs exhibit. They want to hold off putting the drain in overnight or at the weekend as they want the top dog (not sure what their real title is) to do it under CT guidance due to the air pocket’s tricky location, so hopefully we are on hold till tomorrow. Unfortunately due to said persistent naughty behaviour (of lung not me) I am now confined to my room and not allowed to do any exercise (not even allowed to do physio properly!!) to try and keep it as stable as possible. Whilst one might imagine enjoying the freedom of not having to work on lung fitness I am finding this quite unsettling; I am desperate to keep whatever stretch and reserve I have in my lungs and so even 48 hours is not fun as it feels like I am just letting things degenerate, although obviously this is not the case as they are monitoring me carefully and it’s a very short period of time.

When the team came to talk to me this morning, my doctor said that she was very aware I need a life outside these walls. But herein lies the problem – to ensure that this lung “sticks” and does not come down, there are a number of options, the most successful being gluing. The aforementioned however, along with a few others would prove a contraindication to transplant. She asked me outright if I would like this done and explained that many patients by now would be saying “ok enough is enough I need my life back now do what it takes”. So two choices laid at my door, do I chose a “get out of hospital now” card and put an end to my lung collapsing escapades, but on doing that close a potential future portal, or do I ride it out, putting my hopes in the transplant basket as it were? Do I wish I had a crystal ball, and would knowing what the future holds actually make things any easier?

The thing is, it wasn’t really a choice I had to make. The gluing isn’t for me. Knowledge isn’t what makes the future easier for me, but hope does. Transplant is my eventual goal and aim, it is a long term “improvement” which I am fighting for, and when at my worst, hanging on for. Whilst I am fully aware it is a target I might not attain, I need it as a guide light for when things get tough. I don’t want that taken away. The team readily agreed that vetoing gluing is the right option for me, but wanted to ensure they are offering me every possible route. So it looks like we shall be proceeding with a second anterior drain, but my doctor is going to talk through some other possibilities with the transplant team to make my lung stick that little bit more, but to keep the balance so it doesn’t interfere with potential transplant. I have been feeling quite down and scared of this drain, as the previous anterior one was such an unpleasant experience, but have just had a very reassuring chat with a physio (see support work, councillor, they do it all!) about much more attention to pain management and control, so I am going to go into it with the thought that it wont be anything like the last one.

On a lighter note, not only did I manage to get out for a picnic with A yesterday day (which was just gorgeous) before lung started mucking about again, but then my mother came up to stay the night as I was sporting a somewhat pouty face, which she promptly managed to eradicate by bringing a sense of normality back. She arrived in a loud and blustery manner, went searching for a video and came back gleefully clutching “Chitty Chitty Bang Bang” (which as we started watching I realised isn’t quite the seamlessly edited and tightly constructed narrative my childhood memories would have me believe). Sense of normality continued on to this morning, when she woke me up at about 8am “just to check” what time breakfast should be served, in case by some dire misfortune I (and by that she meant she) had been missed out. What would I do without her…

It wasn’t that I couldn’t think of anything sensible to add last night (honest), it’s just there was no news as such so decided to wait until this mornings X-ray etc before updating.

Last night I found out a friend, Mary, who was waiting for transplant like me wasn’t doing so well. We have been emailing back and forth a lot, sharing the highs and lows, the fears and hopes, and generally supporting each other along this rather rocky road that is the wait for a transplant. As always the fantastic CF community rallied round and messages of support began flooding in, so I was relaying them to her boyfriend Alan via text then via email. Feeling entirely helpless and knowing she likes to read my blogs, I sent some similarly waffley emails, as I had that awful itchy feeling of must do something, anything to help, and these were read to her and she would squeeze Alan’s hand to show she could hear and apparently even managed a smile.

Mary and I had this thing in our emails, where we decided we were going along this rocky road hand in hand, as our stats were pretty similar, and so whichever one was struggling at the time, the other would gently remind them that they were holding their hand, pulling them along. Sounds strange, but it was comforting. This morning, aged 23, having fought and fought till the end, Mary ran out of time. There are no words when this happens, because there is no rhyme, reason or fairness. All my thoughts are with Alan and with Mary’s family, it is just very very sad.

This has put my news into context; I would have probably been stomping on here today as after going down for my 55930th X-ray (actual number may vary from melodramatic guestimate given) I have just been informed by the team that I am definitely not looking at home before next week; lung is still decidedly deflatey and not even attempting to sit up and take notice at present, and until it starts moving in the right direction, it is not safe for me to stray too far from the hospital. Having reflected on this a little, and taking into consideration today’s events, I consider myself in quite a fortunate position. My lungs are obviously incredibly precariously balanced right now, however I am feeling well, I am not in any immediate danger, but due to unstable and generally naughty lung behaviour I remain urgently listed for transplant.


I am planning a shopping spree (will carefully ignore all envelopes that look like bank statements when my post is brought up) and a picnic with my family in the nearby park, perhaps a Sunday lunch out too, so a good weekend lined up. I still have that chance ahead of me, and as Alan reminded me what I need to do now is concentrate on fighting hard myself. And I will.

Lots of love Mary the fairy xxx

Disaster: I discovered about 20 mins ago that I have inadvertently sent home my entire sweetiebobble supply when I packed up most of my stuff yesterday (I have been here 7 weeks and accumulated huge amounts of stuff so am sending it home in several loads). I don't know how it happened, I had 3 tubs of the stuff up here.... A not impressed as we have 2 tubs at home, which makes a grand total of 5 taking up space in the cupboard. I have now been threatened with having it added to savoury food as well as penance for naughty behaviour.

Will blog something more sensible later.

Now if I should have learned anything by now, it is that my lungs are extremely strong willed and stubborn and need to feel that they are the centre of attention and in control at all times. So like me only magnified. Having not learned that, I today, over-enthusiastically started packing up my room, took down all my cards (over 80, thank you so much you lovely lovely people) and began making preparations to come home having been told by the team yesterday that this was the likely happening. I was sitting on the bed at about 4pm, surrounded by bin bags of stuff, when the doctor came in. His promising start was “it’s not too bad news” which immediately made my heart sink. Apparently this morning’s X-ray showed that that [insert appropriate expletive here] airleak has grown in size again. His words rained down on me like a shower of rocks, and whilst I tried to listen nicely to his reassuring words, which explained that this might not hold me up going home but will need careful monitoring and it isn’t looking awful, I had to bite my lip quite hard so as not to scream, throw myself on the floor, and then cry.

Instead of doing any of the above I asked for my physio to be bleeped (the poor physios here should be paid for their psychologist role as well as physio they really should) and cried at her a little bit, then talked it through calmly. Minutes later, my consultant came in surrounded by bags, boxes and piles of stuff, confirmed yes it is down a bit, and that as I suspected, yes this will in fact delay my going home. Her reasoning is completely valid and I agree with it; we have only had one X-ray showing it has gone down. What is more important to know is whether it is still going down (i.e air is continuously leaking again) or whether it collapsed a bit again and has now stablised, or (let’s think positive people) it collapsed down a bit and is already on its way back up. But essentially only further X-rays can tell us which of those options my lung has decided to take, so no talk of home for the next 48 hours.

48 hours isn’t dire, in fact in the grand scheme of things it is nothing. What was more frustrating and crushing is simply the fact it has gone all deflatey again. I knew this would probably keep happening, after all the whole point is that they couldn’t operate to remove the damaged part, which is why I am marked as urgent for transplant, but it is still disheartening. I don’t feel too bad, I am a little more breathless at rest today and I did have a very puffy morning but I sometimes have those anyway so didn’t attribute it to any sort of new misbehaviour on my lungs part. On the bright side however, little lung was kind enough to hold off this latest trick till after the hydro active, and so I have a million photos and video footage and beautiful memories and a real live (well not live) medal and most excitingly (people may find me weird for this) aching leg muscles. I never get aching leg muscles, as my lungs always give out before my legs have had enough, and the day after the race I woke up with the stiffest shins and every time it tweaked I felt like dancing for joy. A physio came in to do some stretches and a massage and everything, it was really quite exciting and fun to not be concentrating on chest muscles for once!

So am down but by no means beaten. This is merely a delay in proceedings, and there’s nothing I can do about it tonight anyway. Think I will watch my slideshow again (it is viewable by clicking here) ; I have set it to Heather Small’s “Proud” because that is how I feel and also that is how each and every person who took part on Sunday should feel.

Photos of the Hydro active 2006

There are hundreds more but I dont know how many blogger will allow, so I will put these up for now, and try and make a slideshow at a later date.

Making our way along the course - me wheeling with great grace and dignity and not at all over excited.

Excited Angels getting into the spirit of things.

Time to start walking! Oxygen, check, tiara, check...notice the slight fear in my eyes!

Check out the serious walking face I am sporting there. Angels supporting me every step of the way, plus some cheering from the sidelines having been mad enough to run it.


And over the finish line I go. Absolute best feeling in the world.


The emotion of the day catching up on me, but they are tears of joy, of relief and of absolute overwhelming happiness.

Adjectives and formal English vocabulary fail me right now so I shall start by using a phrase invented by my mother and saying I am currently Smilier than Mr Smiley of Smileyland. I am back safe and sound in the hospital, glowing with happiness after what has been an incredibly exciting day.

Being aware that I had a big day coming up, I settled down nicely last night, ensuring I had done extra physio and an extra nebuliser, and had everything within arms reach so I was sorted for a good nights sleep. Being completely prepared like this is a rookie mistake, it actually ensures you will not get to sleep at a nice early hour because you have something important the next day, a bit like if you know you have a big interview coming up so you don’t want bags under your eyes and are still frowning about that at 3am whilst watching the clock. Luckily I wasn’t as bad as that, but my lungs did throw a mini strop last night by being considerably achey and then deciding to bleed to make me sit up and take notice that they were in fact still in charge. I spoke to the on call doctor who gave me a quick assessment and verified that whilst we will keep an eye on the bleeding it wouldn’t hamper today’s proceedings.

This morning I was nervous, I really was. More that my body would let me down and I would miss out on stuff – once I run out of energy (generally much sooner than anticipated due to over excitement and silly behaviour) I have to stop, there is absolutely no choice in the matter, as if I try to carry on past that I do just fall asleep. I got up early to fit in all my morning tablets, physio, nebulisers and inhalers (and eat a bowl of porridge, check me out carbo loading as if I am some kind of real athlete) and then lay back down to recuperate. The troops (family) arrived at 8.45 to help with the important part, donning the costume, yay!

As we approached the park, my nerves began to subside, as it became clear my lungs felt they might actually enjoy today and so seemed to be cooperating nicely, probably out of nosiness rather than anything. Due to having an acute fear of running out of oxygen I had in fact accumulated the cylinder rations for the south east of England and put them in my car, perhaps overdoing it a bit but better be safe than sorry. We all met at the CF stand and the air was electric as everyone picked up and donned their pink sparkly wings, people gathering from all over the UK to form Emily’s Angels, so many meeting for the first time.

I did incredibly well (if I do say so myself) at adhering to the strict “no talking” rule. OK so it wasn’t no talking, but I did talk considerably less than normal and sat very still most of the time, so by the time we got to the start line and actually set off, my respiration rate was still nice and slow and my muscles were hardly aching at all. The walk round was just lovely. It was cloudy at first, but as we set off the first signs of sunshine were beginning to break through. People were chatting merrily, my mother (who is even more excitable than me) louder than most started pushing the wheelchair with great enthusiasm however appeared to loose interest shortly after the start line and left me in the hands of other pushers for the rest of the race (thanks guys!). we had a nice rota going with people switching duties with wheelchair and huge O2 cylinder on a trolley, but the recently betrothed Mrs W and Abby did vast amounts of pushing, thank you both and all the other helpers.

I absolutely loved the entire thing, I was able to just sit there looking around at this huge multicoloured stream of humanity pouring round the corners of hyde park. Sponsored walks and runs exhibit human spirit at its best – people are driven by passion and by love, and the supporters round the edge are a huge part of it as they encourage cheer and clap throughout. We got a tad carried away in the enjoyment of it all and slowed to a bit of a saunter at one point but sped up again around the 3K mark and headed quickly towards and past 4K. As we past this mark, I felt the nerves begin to build again, I was desperate that once I got out of the wheelchair I would be able to walk from then to the finish, I really didn’t want to have to sit back down again, but was well aware I might have to. Suddenly I heard my name being called, and it was my two personal trainers (also known as my physios who had the task of getting me from “breathless at sitting” in July to “walking outdoors” today, not to mention the more formidable task of getting me to stop talking when walking) were there, they had calculated back from the finish and found a point which they estimated was just over 500 metres away, and they thought I could make it.

This was it, it was now or never, and I was definitely nervous. I had managed to walk about 400 metres in total on the corridors, but that often had breaks in, and so I had no idea if I would be able to do it. Fantastically, the watertight security had a nice open patch right next to the track so said trainers came down and walked with me, keeping a tight eye on my breathlessness score (signed on fingers, 1= not breathless at all, 10=so out of puff I sound like Thomas the Tank Engine and probably would not be standing at the time). The deal was to try and stick between 3 and 4 and that if I hit 5 I should take a break, which obviously in my head I moved up to 6 pretending I couldn’t quite count properly. I set off at a cautious pace, but was waving a bit too much which sensible people around me quickly put a stop to. After that I concentrated on breathing and walking and found myself moving steadily but quite comfortably round the corner of the track, and suddenly the finish line came into view.

I was trying hard to purse my lips as talk, but you try pursing your lips when your heart is dancing with joy so much you cannot help but break into a smile. I kept at a steady pace, I hit 5 about once breathlessness-wise but slowed a little and moved back down to a comfortable 4, and most importantly kept on moving. There were a lot of people shouting for us by this point, and whilst it was a bit of a blur I could see face after face of people who I knew and loved. Suddenly I could hear my voice on the tannoy, and the announcer was telling the crowds who I was (apparently I am waiting for a ‘double transplant’, not satisfied with one clearly) and why I was doing this. People were cheering and shouting, my Angels were all around and I was enjoying every single step.


As I approached the line my mind went sharply back suddenly to a very specific memory; I was in high dependency, so it must have been just over 4 weeks ago, and I had just got out of bed to sit on my chair for breakfast, and I couldn’t catch my breath. I was so breathless the nurse was sitting next to me talking to me trying to bring my heart rate down, and I remember having tears in my eyes, watching the chest drain bubble viciously as the air leaked from my colander-like lung, thinking if I can’t even leave the bed now I would never make it to Hyde park. There is nothing like meeting a target to mend your spirit and booster your confidence and I focused on the white line on the floor getting nearer and nearer. Having trained hoping to do 400 metres, approximately 530 metres after leaving the wheelchair I stepped over the white line. As I did so a cheer went up and I couldn’t help the tears escaping. I had done it. I hadn’t died from that lung collapse, I didn’t still have a chest drain in, I wasn’t stuck in hospital, I am alive, and I was outside, and I was stepping over a finish line of a sponsored walk. As I stood their getting my breath back, I noticed a CF Trust balloon go up in the air. It felt suitably fitting, because as well as doing this challenge for myself, and for people with CF, I was doing this for those we have lost to CF; for Gaz, for Chloe, for Kirsty, Amanda, Stacey, Sofia, and so many more.

We head back to the CF Trust stand to sit and chill with food and drink, and also give people a chance to mingle a bit and me a chance to grab and thank as many people as I could for their incredible contribution and support, how many lucky girls out there can claim they have 70 Angels helping them complete a challenge?! The adrenalin kept me going and my lungs decided I deserved a bit of mingling time too, so I was able to chatter away quite merrily and had a wonderful afternoon. It is only once I got back to the hospital and lay on the bed that I felt absolutely exhausted, but that is perfect and just how it should be, I now have my mask on and can lie here and relax, having had one of the most memorable and enjoyable days of my life.

Oh crumbs, this entry is so long I am not sure that blogger will actually let me publish it, it may spit it out in contempt. I will post some photos on here as soon as I can; (current ones stolen from other people) a big thank you to each and every person who has supported me along the way, both from afar or here today in person.