Sunday, December 31, 2006
This time last year I was getting very nervous indeed. I had lots to celebrate and look back on happily but was glad to be leaving behind the terribly difficult few months in hospital in the summer which had frightened me more than anything ever before. I was looking forward to a new year, but was saddened by the thought that it could well be my last. This year of course is practically identical, with perhaps each emotion slightly heightened. After all if I were to concentrate on statistics and predictions, I officially run out of time in February. However if the last two years have taught me anything it is that a)whilst there is uncertainty there is hope and b)if I can possibly do what I am not medically supposed to, be it good or bad, you can be damn sure I will try and be that anomaly.
I think I have a better focus this year, as last year I was fairly convinced that I would either have received my transplant by Christmas 2006 or would not be here at all, which thankfully has turned out to be untrue. This year I am trying to go into it with much less contemplation about what the year holds, as I know from 2006 that both the highs and the lows can go to new levels you never imagined possible. I have had innumerable experiences this year which I would never have imagined possible at this stage of my health, from launching the Live Life Then Give Life campaign, to going clubbing with my oxygen on, from giving a speech at the House of Lords, to 2 weeks later being told I was dying and nothing more could be done, then walking 500metres and across that finish line (dressed in more pink than you could possibly visualize) 6 weeks after that.
Who knows what the New Year will bring, and not just in the way of health. But I think you can be fairly certain there will be highs and lows, and so the best thing to do is to look forward to all the new opportunities and exciting possibilities which are about to open up, and when the more testing moments come, charge at them whooping loudly in an act of intimidation and tackle them head on. What I do know is that I have had an amazing Christmas and am going to go forward and live and love 2007 to the best of my ability.
Wishing you all a very happy and healthy New Year.
This is my life and I choose to love it.
Wednesday, December 27, 2006
I hope everyone had a fantastic Christmas and managed to eat lots, drink lots and laugh lots as well as get a wide variety of sparkly new presents!
In order to keep it a truly traditional holiday season, I started the whole thing with a festive row with my mum. This is really nothing unusual, we are uncannily like each other therefore consequently when we get along no one in the world could separate us, but when we row, anyone in a 10 mile radius should employ the duck and cover method widely advertised in the 1950s as protection from a Nuclear fallout. Managing to get myself in a complete state I ended the first half of the whole debacle slamming down the phone and incensed at everyone’s audacity to not quite appreciate enough how hard this all is for me (please don’t ask what I was expecting the world to do; elongate Christmas day to accommodate my naps or something I suspect) and deciding that I would not be participating in any of today’s activities. Luckily two things then happened; firstly I read this which sort of put everything into perspective. Secondly I spoke to a friend who knows me better than that and who swiftly informed me she would be round in an hour to help me get ready and then drop me round at my parents, where – I was reliably informed by my sister – my mother was speed-making mince pies in a rage fueled frenzy.
Having got any feelings of stress and vexation out the way in one fell swoop the rest of the festivities were great. Christmas eve is very traditional for my family, by which I mean we have our own very set traditions which may appear somewhat strange to others. For lunch my mum makes two homemade soups, carrot soup and chestnut soup, the choice of which is served with crusty bread and butter. The pretence of these two being offered as a choice has long been abandoned and we are now asked which soup we would like to start with. After lunch, we all snuggle up in the lounge and watch It’s A Wonderful Life. Every year it’s the same film, (its only outing from the video cupboard) and every year the tears flow with monotonous regularity, led by my mother who starts weeping approximately 10 minutes before everyone else. Now the tradition of soups for lunch was started I believe to make everyone feel better consuming copious amounts of food on Christmas day but is sadly duped by our traditional Christmas eve meal, where we head to our favourite Indian restaurant for a calorie-laden treat. This year my lungs were just not having any of it, and I was a tad sad at the prospect of missing it, but we decided to get a take-away instead which meant full participation (yay) but also the new addition of carols round the piano (yes we are in fact the cornflake family).
My granddad is down with us for the whole of Christmas and on Christmas day my other grandparents joined us too, for a feast and a half (my eyes are always bigger than my stomach and I usually end up having to eat my plateful in two sittings.) Boxing day is the other big tradition, where 14 of us all pile over to my grandparents for a huge boxing day lunch featuring the special only-made-by-grandma mushroom rolls, which trust me are far more delicate and scrummy than that simple name makes them sound! The great thing about traditions like our boxing day is it then acts as a kind of benchmark for change; it’s strange watching everyone grow up and each year is just slightly different but with certain key elements (such as "who will sing the line 5 gold rings?" - dad, and "who will give up on the quiz first?" - mum) remaining the same no matter how much time passes. As always I did extremely well present wise and was thoroughly spoilt. I am getting a bit technical this year (no sniggering in the back row please) and my two main presents were a new digital camera (our old one decided to commit suicide) and a camcorder, which means I will never ever do anything constructive ever again as all my time will now be spent making mini-films for no reason. The camcorder is really rather swish and terribly dinky, a small neat compact little thing which reminds me in both size and weight of my old guineapig (I have learned not to question the workings of my brain merely accept the results, life is easier that way) and I have fallen in love with it straight away. A fabulous Christmas all round, I am a very lucky girly.
Incidentally, I was asked the other day by an American reader of my blog what a poppet is. Hard to describe so I did what all good students do and faithfully copied out the dictionary definition:
• noun Brit. informal an endearingly sweet or pretty child.
— origin Latin puppa ‘girl, doll’; related to puppet.
Tinypoppet is actually my mum’s nickname for me, although my Aunt who lives in Switzerland calls my sister “petite poupée” which means little dolly, (I am “petite princesse” – little princess - and my other sister is “petite fée” – little fairy) but I had never linked the two until I looked that up!
Thursday, December 21, 2006
The last few days have involved lots of friend related stuff which is one of my favourite energy expenditures of all time. One of the most important elements in my life is my friendship network, as without these rather lovely people…well life wouldn’t look half so pink put it that way. My stroppy and controlling lungs have forced me to adapt over the years, and I have no choice but to do as they tell me, however somewhat bewilderingly my ever faithful clan of friends seem to bow down to their every demand as well, making increasingly large efforts to maintain social contact as gradually traveling, then bars, pubs, even restaurants are taken out of the equation by ever increasingly demanding breathers.
Yesterday I had a long overdue gossip with a friend (she did most of the talking in an attempt to stop me from doing so) and then last night a friend of A’s came round for dinner and a pre-Christmas catch-up. At first my lungs were incensed at the idea of having to do any more socializing so I was forced to lie on the sofa festooned in a pink blanket and looking every inch a pampered princess who couldn’t be bothered to sit up and talk nicely. Luckily A’s friend knows otherwise. As the evening went on my lungs decided actually socializing might be quite fun, which was just as well as two more people turned up, one of which I didn’t know and whilst I love meeting new people I am always a bit nervous that I come across as “Emily” rather than “that girl who is ill”. I am convinced that what I look like won’t define me so don’t mind wearing my oxygen, more how I behave is what will create the fixed image in their minds, so I was pleased I was able to chat in a relatively normal fashion. I was even more thrilled when one of them produced a one of those lego construction kits which according to the picture on the box would create a rather complex looking digger and my lungs decided this looked an amusing enough activity to participate in. Watching two guys in their late 20s concentrating hard as they attempt to assemble a kit extracted from a box which is marked clearly “ages 5 and up” was rather amusing. Convinced we could do better, we the girls started to build the second stage of the digger in an attempt to beat and shame them but we were sadly duped by multiple overly similar looking parts resulting in two very gloating men.
Today I was like a rather over-excited child (not too unsual then) as my girlies who I lived with whilst at Uni came down for the day; shockingly this is the first time we have all been together since graduating. Having lived with these girls for three years they are more like sisters than friends really and due to our student roots, lounging around on the sofa jabbering away and not really doing anything constructive comes naturally to the three of us. That is actually a woeful underestimation of our creative skills which were exercised when they produced a box of decorate your own gingerbread men, and the next half hour or so was spent deep in concentration as we created 4 gingerbread replicas of ourselves. I have photographic evidence which I will upload when I find the camera cable (doh). My lungs have done exceptionally well over the last few days and I am really indebted to them, as despite making quite a fuss whilst I am trying to socialize at least they have allowed me to participate (I did fall asleep this afternoon whilst everyone was still here but I still think they did well). I am being really careful and maximizing all medication and oxygen usage so as not to start knocking myself down into a health dip too. I might be housebound at the moment due to inordinately puffy lungs but so far I am having a truly fantastic holiday season and intend to continue doing so. After all it’s not what you can do or where you are, but it’s the people who make it really isn’t it.
Monday, December 18, 2006
What I omitted to mention in yesterday’s blog was the tremendous busyness that has been the last week. Someone (ahem - Emmie) came up with the bright idea of launching a Christmas Live Life Then Give Life campaign – a sort of mini-media hit revolving round the idea that this is the season of giving and goodwill, and linking that in with the gift of life. We are already working on quite a big project (all will be revealed…) but Em’s ideas are usually good ones and we like to keep busy, so true to form we stumbled forward enthusiastically without really stopping to think it all through.
We emailed various people we know who have been touched by transplantation and a whole host of them wrote back saying they would be more than happy to take part. We then came up with the bright idea (the majority of bright ideas associated with me are followed subsequently by the phrase “it seemed a good idea at the time) of learning to write press releases ourselves, as our Media Guru who usually does them for us is juggling about a million and one projects at present. So under her careful guidance, we attempted to sit down and write a press release for each person. Seemingly very simple; in reality, oh so not. Actually I don’t know why I am trying to make it sound as if I didn’t enjoy it because I did, I loved every minute (apart from the late at night minutes where I couldn’t get the wording to sound right and wanted to drown my laptop in the sink). We worked pretty hard on them, as these are not only important to us because of the awareness raising potential, but each individual story is about someone’s life, someone’s struggles and someone’s emotions therefore you have a responsibility to do each one justice. Excitingly every single volunteer had at least one result from their press release, be it a local paper, radio station, or TV. One of them even made the community presswire (a national newsfeed) and can be viewed here. We are overjoyed at this response, and of course very grateful to each and every volunteer, as without a "face" there is no story therefore no awareness (the family featured in the community presswire release won't even benefit directly from this which makes their effort all the more humbling).
I’m so glad I have this to keep myself busy with, as my lungs have been struggling a bit since I got home. I was feeling so much better when I escaped from hospital therefore dived back into life with a great deal of enthusiasm and energy which they were incensed by and are having an almighty strop this afternoon. It’s hard, very very hard, not to get despondent about this; I disappear off into hospital and somehow in a child-like naivety I still expect to come out better. However the team did say to me that this might not be an infection it might simply be my new “level” in which case I need to learn to manage it, rather than focus on improving it, and a hugely simplified way of managing things is doing less. Easier said than done when talking is the ultimate problem…I think I am quite lucky it is talking in a way, it creates a rather odd situation where at one end of the scale ultimately the most frustrating and difficult to comprehend thing to find labouring, but at the other those exact points create an amusement factor based on the irony of the whole situation which I think keeps me sane. Or insane depending on your view point. This is turning into incomprehensible waffle, I think I should stop. Now all I need to do is take that piece of advice and self-discipline and apply it to my every day talking habits…
Saturday, December 16, 2006
Irony aside, carols always have quite a profound affect on me and looking around it really sunk in how lucky I am - I am going home. Home to spend Christmas with my family and friends, and a lot of the people surrounding me are not. Wednesday night I was lying in bed feeling quite sorry for myself, I couldn’t sleep, I knew Thursday night an event was happening which I wanted to be a part of but wouldn’t be able to manage, and was lying in bed, staring at the ceiling feeling pretty hard done by (cue sound of violins and Greek tragedy theatre-style lighting). However talking to one or two people around me and being exposed to some of the current situations on the ward is a good and timely reminder. It is not wise to sit and contemplate what you can’t do. It wastes energy and time, and more importantly actually anyone in the world could probably list 10 things that they can’t do right now, whatever their current situation. Even when it is hard, it is vital you concentrate on the opportunities that are within your grasp and try and make the most of them. After all you don’t know how long they will present themselves for so it is best to make the most of them whilst you can.
So yes as I was supposed to be saying when I sat down to write this entry, I was discharged Friday and am home, woohoo! Nearly didn’t make it due to both lifts in the hospital deciding to break down simultaneously (my ward is 4 floors up) and at one point knotting bedsheets together and shimmying down the side of the building was looking like an inviting prospect. I had apparently made my mind up that I was going a tad prematurely as the doctors looked somewhat surprised when they entered my room to find packed bags strewn around the room and raised their eyebrows when I confessed I had already taken my longline out, thus not giving them much of a choice but to send me home. Yay for decent internet connection which allows me to post my own blogs, fabulous food and most importantly own bed!
Monday, December 11, 2006
Things are most definitely improving, I’m sure of it now, so time to do a little celebratory dance (mentally though so as to dupe lungs into a false sense of security in the hope of continuing progress). The dizziness and sickness is really a very small price to pay if that is my main concern this admission as opposed to the “lungs could fail at any moment” scenario I was in in the summer, and I am hoping to head home at the end of the week.
My main problem at the moment still appears to be talking. I really can’t take this problem seriously as it just sounds so pathetic and somewhat amusing, but it is actually a bit of a concern as talking is my favourite pastime. In fact it is more than that, as well as being born with CF, I was born with an innate inability to shut up (which as it happens was also inherited). Obviously since being in I have been talking a lot less and consequently have felt a vast improvement, aided by the IVs extra meds and physio. These puffy episodes are so much easier to get on top of in here because when my lungs are telling me to lie perfectly still and hardly breathe I can actually do that, whereas when at home little essential things like getting a glass of water and making lunch become huge marathon efforts if my lungs are in one of their moods. The last few days however I have had a few visitors and been chattering away like an overexcited chipmunk, resulting in two puffy afternoons and I am now back on my higher O2 mask. Sadly after 22 years I still don’t quite seem to have got my head round the concept of “improving” as opposed to “magically cured and reinstated with working lungs” and so the minute I feel a turn around I start jumping around and doing lots and then am surprised when said behaviour doesn’t go down well with my lungs which were (for want of a better phrase) breathing a sigh of relief that I was finally operating on a level they can maintain. I mentioned to my physio that you’d think I would have learned by now, she neatly sidestepped this remark by laughing politely and neglecting to comment.
It feels strange as the end of the year draws closer, and I tend to do quite a lot of thinking about the events of the last 12 months, as I’m sure most people do. It has been an incredibly diverse year with dizzying highs and earth-shattering lows. But as I am always lucky enough to find with my life, this year has made me even more determined and eager to experience and to cherish the next. When mulling over the years events I figured out that I have spent about five months in hospital in total since January, a new record for me. This, combined with the final point below also lead me to doodle the following list on my napkin (which provided an easy to write on surface confirming my suspicions that they are more suitable for scrawling on than wiping ones hands and face with)
You know you’ve spent too long in hospital this year when:
-You know the lunch menus of by heart, and don’t even need the special diet menu anymore as you know which number box correlates with which choice.
-Nurses ask after each member of your family. By name.
-The radiographers know you and also that you are an anomaly and will therefore require two X-rays (no arguing, yay!)
-Doctors, nurses and physios who aren’t actually treating you pop in to say hi and see how you are doing
-You can tell the trainee nurses which cupboard and on what shelf the 35% mask is on.
-The tea lady knows how you take your tea.
-You own more sets of Pajamas than any other type of clothing.
-You’re excited because you got a portion of Cheshire cheese with your crackers instead of the usual cheddar
-You find yourself crying at Herbie the movie – a clear sign you are losing your grip on reality
I am feeling very upbeat as there is just so much to be happy about and look forward to! The apparent improvement in lung behaviour is boosting my confidence, so I will continue to work hard on meds, physio and rest ready for the spangliest Christmas in the world ever. I think the main reason I love Christmas so, is that it’s the only season I can openly flout glitter and sparkle everywhere without having to explain myself as the rest of the world seems to be participating. Consistent to all areas of my life and personality I am being totally unorganized and have as yet done very little Christmas shopping (being in hospital isn’t really a legitimate excuse as I am fairly certain I would be in the same state of unprepared-ness if I was at home). This evening I shall be mostly writing press releases (in the vague pretence that I am able to do so) sitting wiggling and singing (mentally) along to various upbeat songs whilst steadfastly ignoring the pile of Christmas cards sitting at the end of my bed waiting to be written.
Friday, December 08, 2006
I went on a daytrip over to the other building this morning for an echo of my heart, as they are still trying to work out what is causing the dizziness which makes me feel like a small drunk pink firefly. It was nice to get a breath of fresh air (well as fresh as London air can be) and all went very smoothly. I lay on the bed with the lady rolling what to me looked like a children’s microphone you get on karaoke machines on my chest, (something to do with ultrasound) and attached a little suction cup which apparently amplified my heart sounds, and reminded me of that strange health craze I have read celebrities and people go for. I tried to peer at the screen over my shoulder with a look of intensity and understanding, despite only being able to make out what appeared to be grayish black blobs and movements reminiscent of pond life. There was one angle though which was incredibly clear, I could see my heart valves moving and everything, which I found fascinating and quite hypnotic.
During this little excursion I also got “recognized” – a very rare occurrence but on the times it has happened it is rather fun. The lady asked if I was Emily and then congratulated me on the Hydro active 5k which I took part in back in September. This was I think due to me featuring in this months issue of the staff magazine at the hospital, with a photo of me on the front cover, arms in the air triumphant having crossed the finish line. Amusingly the rather misleading caption underneath infers that I walked the entire distance, rather than just the final 500 metres. Whilst that would have been a feat indeed, I think both me and my team would have asked for a review as to whether a transplant is really all that necessary.
Tuesday, December 05, 2006
As I began ordering people around to gather together my stuff, I realized that my funky new liquid O2, as great as it is, only goes up to 6litres. The mask I was currently using runs on a minimum of 8litres, resulting in the horrible recognition that I had no choice but to call an ambulance. After offering various suggestions such as “I could go and lie down again and see if it feels better” which were met with a no nonsense retort of “if you don’t phone them I will” I sulkily picked up the phone and dialed 999, feeling like the biggest fraud in the history of the world. I kept apologizing repeatedly to the poor operator as I know how stretched ambulance resources are, and having needed one in a dire emergency before I hate to take up their time when in fact it isn’t life or death. I know all the spiel off by heart, explained I am end-stage cystic fibrosis, awaiting transplant, recurrent pneumothoraces two of which have tensioned and what my present difficulties were. It doesn’t matter how much you already know the spiel, it doesn’t make it any easier to say. Nor did knowing that this wasn’t a huge dramatic emergency make asking for an ambulance any less frightening.
A first response unit car turned up very quickly to assess the situation, followed minutes later by an ambulance. My house is not very large, and has a rather slim hallway which is not really designed for 5 paramedics to be wedged in, attempting to filter into the lounge. After assessing the situation and taking a few readings everyone was satisfied that I was OK to be moved and set about getting me into the ambulance. I offered to walk which strangely they didn’t think was a great plan, so insisted on wheeling a little stretcher-chair into the house (amusingly having to first stop and move the huge obstruction that is a mountain of my shoes from the hallway into the bedroom) then placing me on my throne with wrapped in a blanket with various wires attached (but sadly no tiara as requested).
I think I am going to have a typed out essay with my life history on it, or learn sign language or something, because the worst bit about a new admission like this is having to give all your details and history when the reason you called them in the first place is because breathing has become a monumental challenge. Emma dutifully tried to answer as many as possible for me, but the list was endless, with some of the good old favourites such as “how long have you had CF” (which make me want to staple things to the person's head) making an appearance. The superlarge quantities of oxygen they were giving me were clearly working, because as the aching and fatigue lessened, my pouty-face and evident annoyance at daft questions escalated, to the extent that I had to avoid eye-contact with Emma and stare very hard out of the window (made somewhat less realistic by the fact the blinds were down) biting my lip to stop from laughing.
My lungs are pretty complex, and CF care is very specialized, so every time I turn up at a general hospital I know it is going to take rather a lot of explaining and scowling to get the correct treatment. I tried explaining that I just need 2 X-rays to rule out any collapse, as I already know my lungs are grumbly which is why I am awaiting a bed at the Brompton, so as long as it is not immediately life-threatening I can go home and wait there. After scaring the radiographers into submission (I still don’t understand how the argument “we don’t do laterals” – a rare sideways X-ray which I need to show up the weird areas of collapse I get – is used so freely as a retort when clearly I wouldn’t be asking for one for fun, unless I had an uncontrollable desire to glow green or something) and subsequent X-rays revealing no new problems, I immediately switched tack to “let me out let me out let me out let me out”. The trouble is my lungs seem to make general docs break out into a sweat and it is hard to explain that actually my level of “normal” greatly differs from the majority of people who arrive in A&E, therefore they needn’t feel bad at letting me go with the problem unsolved because there is no quick fix. Whilst we waited for discharge we killed time by pondering riddles such as “why in a hospital do they not have any portable O2, meaning I have to walk to the bathroom with no oxygen at all?” and other mysteries.
Having talked the doctor (who was actually a very nice guy, very thorough and did listen) into letting me go home, we suddenly realized that having arrived via ambulance I had no portable O2 with me. My lungs were a bit happier having had some mega high O2 support, so I felt I could tolerate nasal specs on the way home, so promptly sent the men home to locate and retrieve appropriate oxygen supplies. Brad returned triumphant with Nellie (liquid O2 cylinder) who true to her name was honking and trumpeting loudly, I suspect she was indignant at being moved about at this time at night. We wheeled me speedily to the car, where their poor well behaved dog was so delighted to see our re-emergence she promptly jumped up on the dashboard setting off the car alarm in her excitement. As Brad grappled desperately for his car keys to silence the screaming car whilst simultaneously trying to stop me wheeling off unaccompanied down the slope, it dawned upon me that instead of sensible shoes, I was sporting large cerise and pink striped bed socks, and whilst they made me smiley due to the bagpuss-esque appearance of my feet, they were possibly not the most practical footwear for wet and rainy weather. We pondered this a while, before Brad came up with the ingenious solution of me standing on his feet and walking to the car in manner of 5 year old child or similar, Nellie honking gleefully in a musical accompaniment as we waddled towards the car. On reflection our departure was not the slick and sophisticated one I envisaged.
Whilst there was joyfully no signs of collapse (yay) lungs are still being incredibly grouchy – I haven’t moved from my bed yet this morning and my muscles are already behaving as if I have been for a brisk 5 mile run before breakfast. Breathing is just so very very tiring. So I am heading into hospital for a spell, feeling very upbeat about it as to be honest when it gets this hard I would much rather be in there resting nicely (or pretending to) plus I am viewing this as a pre-Christmas MOT so nothing to be too concerned about.
Have got a bed (woohoo) so I am just waiting for my lungs to settle a bit and behave enough to make the journey up there. Hoping to find some net connection to preserve sanity but if there is an unexplained absence of postingness that is why!
Friday, December 01, 2006
The phone rang as I was still watching the news that evening and marked the start of what was to be a rather hectic 24 hours. On Thursday the phone first went at 8.30am and then rang pretty much continuously throughout the day. Thank god for A’s mum and my mums friend who both made the mistake of popping round to see me and found themselves fielding phone calls, taking messages, welcoming camera crews, and their most formidible task; forcing me to shut up and lie down for five minutes to rest, as well as eat and drink in between talking.
I am a CF Trust ambassador (along with my partner in crime Oli who was equally rushed off his feet yesterday) so I expected and welcomed the job of explaining CF to various people in the media (plus of course I featured yesterday as “the girl with CF who did that speech”). I spoke to a couple of newspapers (two of the articles viewable here and here), did a radio interview, and quite a few TV interviews, with the last camera crew packing up and leaving around 6pm. Consequently I am being meticulously behaved today (relatively speaking) and am staying in bed with my high-flow mask on, which tiny lungs are very much appreciating.
As you may have gathered from this blog, I enjoy telling people about CF and my life with it; I find it cathartic and that it alleviates some of the feeling of helplessness which accompanies my present situation. Doing ambassadorial work has presented me with opportunities, and more importantly has allowed meet a variety of different people, and continues to facilitate what for me is this vital link to normality – I don’t think people realise just how much social interaction is created on a day to day basis through simple things like at the station, at work, and at the supermarket and other seemingly mundane activities - even now I am quite restricted due to oxygen and general refusal of compliance from my lungs.
As for the overall trigger to this mass media interest in Cystic Fibrosis, my thoughts are well and truly with the Browns, as it would be with any parents learning of a new child's illness. I do not know what it is like to be a parent who is told that their new baby has a life-threatening condition, but I have talked to my parents about their experience and spoken to various families and parents about their experiences. When I was born, my parents had the choice and freedom to tell who they wanted how much they wanted, and to come to terms with CF in their own time. As I understand it a newspaper broke the story on Wednesday night, so consequently this is a freedom they do not have, and regardless of who they are they will like any parents be trying to adapt to life with CF as a family.
Cystic Fibrosis is not a trivial matter, and it can be a terrible illness. There is absolutely no point me saying otherwise as my present circumstances would completely belie any such statement. But what I tried to make clear in any media I appeared in is that Cystic Fibrosis is a part of your life, it does not dictate who you are or the life you lead. As I said in a previous post, when I discussed how we use the label of an illness, the mere diagnosis of having Cystic Fibrosis does not instantaneously qualify for or except you from anything. The fact that you have CF will not change regardless of how you decide to view it and so the statements released on behalf of the Browns which say that they are staying positive and optimistic and focusing on their healthy fit and thriving baby boy reveal a fantastic attitude and one I agree with.
When the CF Trust was formed in 1964, cystic fibrosis was a childhood illness, with an average life expectancy of just 5 years. By the time I was born, this had risen with predictions that I may well reach my 20s, and for children born today with CF, the outlook is even more hopeful again, with a current life expectancy of 31 and rising with funding and research allowing for constant improvements in care. For me CF has wreaked havoc and indeed wrecked my lungs, but not my life. I am determined to try and keep a positive attitude; I don’t see what harm staying optimistic will do and it may even help.
Anyway I still have a whole lot of living to do.
Thursday, November 30, 2006
I wrote this yesterday but was somewhat preoccupied last night with the news headlines (which I will comment more on at a later date) and forgot to post it.
Much calmer now, and have been chewing it all over in a more rational manner (new improved rationality aided by multitude of helping hands offered out at a seconds notice, and a shopping trip followed by a rather nice steak baguette at café rouge in the sparkling winter sunshine that showed itself today). I think that I need to realign my perspective slightly again – for me, when something begins to become overpoweringly difficult, it helps to change your angle of attack slightly.
Perhaps a cheats way to ensure you feel more victorious but when things are out of your control your perspective is the one thing you can keep a hand on. Essentially there is too much focus on transplant right now. This is understandable, as no matter how determined I am to enjoy it, life is pretty tough now and when struggling I focus on the easiest escape route, which is the possibility of a transplant and of healthy functioning lungs. However this focus is also why I am struggling so much when I see that possibility begin to wane. It is much harder to contemplate the idea of no life-saving transplant and that CF might take me and my lungs down fighting, let alone begin to make peace with that idea.
Interestingly this is the same old quandary I spoke about exactly a year ago in my interview in the Times. Such a dichotomy; it is what propels me to keep going yet is the source of endless frustration and angst. I like writing about these feelings and different thought patterns as it allows me to look at them from a slightly detached perspective and then I find them more interesting than terrifying. It is a tricky business really. I want to keep fighting; I know that and am 100% clear on that fact. In my mind, the thing that gives me most motivation is having an aim which you are fighting towards. For me personally, transplant is that aim. However at present, this aim (due to it being merely a possibility) is actually creating problems as I am too focused on the end goal.
Perhaps it is like running a marathon (clearly I am hypothesising here as I have no experience in this area) I would imagine that when doing so, it is important to create mini targets and goals to aim towards, as focusing on the finish might make reaching it seem all the more implausible. After all what is the point of having a goal if you are so blind sighted by it that you can no longer appreciate the little milestones you encounter? And there is so much too look forward to today, tomorrow and in the near future, Christmas festivities being just one huge rainbow on the horizon (sparkles, glitter, fairly lights and presents = Emily-heaven).
To go completely off the deep end in a vaguely philosophical manner, what is there in life that is certain? Nothing really, only today and so that is what must be focused on as no amount of howling/pouting/bribing with sweetiebobble decked cupcakes will change what will or will not be (I am sure I have said that somewhere on here before, I should really listen to my own advice before hysterically blogging). The 50/50 chance of getting a transplant creates a multitude of paths, and I don’t know which one I will head down (though I will do my utmost to go the way I want to go) but then again who in life really does know where they are headed or what will be happening this time next year? It all seems a bit less frightening when I remind myself of the fact that nothing is certain. Whilst there is uncertainty there is hope. Whilst there is hope I will hang onto it and try to use it to keep me focused on the here and now.
Tuesday, November 28, 2006
Three people I know have had false alarms in the last week. Three people. All at Harefield. None of them me. There, that sums up the entirety of this entry really, me me me me me.
That is part of the twisted nature of this whole waiting game; the people who support you, who you rely on and talk to and who need you right back are also waiting. So whenever you hear of a friend being called, there is a surge of elation for them, followed by a drop of sheer despair. Completely illogical really, as just because one person gets a call does not mean another wont, but somehow in my head alarm bells start ringing that I will slot into the 50% whose chance never comes. Then follows the obligatory guilt for having the sheer audacity to even contemplate “why not me” – why should it be me more than any other person? The answer is it shouldn’t, and I know that, but we all have an in-built survival instinct and are all craving for this second chance.
Worse than all of that is the fact that in all three cases the lungs were not viable, so I cant even celebrate that a friends new lease of life is beginning; all of these people are still waiting, still needing and still hoping. I know how crushed I felt in the summer when my call turned out to be a false alarm, so I don’t know why I am envious, it is a cruel position to be in, to have the possibility wafted under your nose and then to have it snatched away. Not to mention contemplating the three people who died and donated those organs in the first place, my head is spinning and is a whirlpool of thoughts and emotions, although sadly at present the woe is me element is winning.
When I am feeling frustrated and helpless like this I like to get up and do something which at least makes me feel like I have some sort of control over which way my destiny is headed, but at this second I have no new ideas feel like I am running out of steam. Sometimes things are out of your control and you have to ride the wave, I try really hard to do that, but cant help wanting to steer it in the direction I want to go. I am just having one of those evenings where I can physically hear the clock ticking away, echoing in my head. And I am feeling the least confident I have ever felt that I will ever get this transplant.
Disclaimer: moody rant written in place of self-indulgent tears mentioned in first paragraph, or storm-out/manic hoovering mentioned in previous blog, as lungs much prefer me bashing the keyboard about a bit.
Because I love it so much this year also brought frustration. Part of the whole event is the preparation and setting up, but to ensure I had enough energy to attend on Sunday, I lay around like an extension of the sofa, whilst other people got busy cutting, sticking, filing and planning. In accordance with my ever logical and reasonable behaviour, I instantly became furious with my mother and A who were sitting in the other room completing one of the display boards, as clearly the fact they were continuing to work without me was a ploy to deprive me of part of the experience. I knew my fury was completely irrational and had an urge to just go out or do something to work off the frustration (I think this is fairly common; a few years ago when my mother and I had an argument, I staged my most unsuccessful storm out ever, wheezed my way about 150 yards down the road before surrendering to my lungs and returning home, then on arrival found my mother had inexplicably moved all the furniture into the centre of the lounge in a fit of rage and was hoovering manically round it). However this time I couldn’t even jump into the car and drive somewhere, and knowing this made me even more angry with anyone in the vicinity (if I haven’t said so before my family are so lucky to have me). I decided to do the next best thing and shut myself in the bathroom for a nice relaxing bath, realized I couldn’t even do that on my own as I needed help washing my hair and the tears of frustration started to show. A somehow knows exactly what to say and what not to say to help me snap out of these moments (as I want to I just need a bit of help sometimes) I am not quite sure how he does it, suppose it is years of practice.
Having thrown my toys out the pram satisfactorily, I was ready to put aside what I couldn’t do and get on enjoying what I am able to participate in. Sunday itself was just great, the atmosphere at these things is always so positive as everyone is there to pitch in, have a good time, with the end result raising lots of money for a good cause. The workshop went smoothly, with everyone seeming to have a good time. Once the initial admin was done I curled up on the sofa in the foyer, listening to the rehearsal progress and trying to resist the urge to rush in and start clapping and singing with everyone else (somehow my brain and lungs don’t really communicate on what is and is not feasible). The concert in the evening was fantastic, every year the quality surpasses what we expect and this year was no exception. I really want to get an audio clip of my favourite song on here but am not quite sure how; if I can find a technological genius to instruct me I do so. Most excitingly, it looks like we will have raised about £1000 for the CF Trust again so a big yay and thank you to everyone who participated for that!
Following the extreme busyness of the weekend, I donned my high-flow oxygen mask and slept on and off for the whole day yesterday. Consequently I still do not have all my blood results back as I was supposed to ring for the final few yesterday, but I am taking the splendid stamina my lungs showed on Sunday to be a rigorous medical test revealing there is currently no infection present. I am still planning on a pre-emptive IV attack before Christmas to ensure the best behaviour possible from my tiny breathers. Speaking of which (Christmas, not lungs) my mother and I received our Christmas cards which we had ordered in plenty of time this year and so were feeling rather smug. As we tore open the box to examine our purchases, it soon became apparent that we may not have been concentrating nicely. There were some of the ones I remember seeing and liking (“those are mine I chose those, mine” I believe I said in a nice sharing way as I grabbed them) and a great deal which we don’t seem to remember clicking on, although I do have hazy recollections so it is definitely due to our lack of focus. The damning evidence that we had clearly lost interest by the end is four tiny packs of blank cards depicting what appears to be a disgruntled looking otter sporting a Lilly leaf as a hat. Some of those amongst you can expect to receive them masquerading as quirky Christmas cards.
Thursday, November 23, 2006
My nurse from the Brompton came today to take some bloods to see if we can work out if I have an infection brewing. It is hard to know as there is such a fine line, plus my lungs in their consistently Diva-like behaviour have decided that oral antibiotics are clearly passé so prefer to jump the queue straight to IVs. She did point out that it may not be anything new, and instead just my lungs new level of function since the summers antics. If that is the case then I am sure I will adapt, I am more worried about infection going untreated and causing further damage…I shall just wait and see and not ponder on it till tomorrow.
Far more excitingly, yesterday a nice man from the Oxygen company phoned me to say he was on his way round with a liquid oxygen…thing. The real name of it escapes me, mainly because it so resembles a Dalek I keep expecting it to start wheeling after me down the corridor shouting at me in a monotone way, I am rather tempted to name it Derek, Derek the Dalek makes me giggle every time I say it (I name all my equipment for those who don’t already know, v bad habit which I now cant break for fear that new equipment would spontaneously disassemble out of jealousy). He arrived and came in to assess where my dalek should go (sadly this meant he got to see the chaos that is my house at present due to a busy week or so) and eventually settled on the hallway, as it is well ventilated, not near any electrical equipment, and near the front door which was quite important as this beast weighs 11stone. The engineer was fantastic and explained everything really clearly. He was here for some time, going through all the technicalities (there are a lot of them) and demonstrating how everything works (I’m not sure I understood everything as I tend to change things in my head so that I remember them, for example the fact that “steam” will start to escape from main dalek as little cylinder is nearly full translates in my head that dalek is getting puffy having overexerted, which I don’t think is quite accurate). So I now have a great big dalek sitting in the hallway, and the small clever refillable cylinder which will give me back some freedom, yay!
Spot the difference...
To be honest I am mortally afraid of the thing, which I shouldn’t be as it is clearly very safe, as long as you don’t do anything stupid like try and touch the nozzle you use to fill it up with as your hand will probably stick to it what with it being stupidly cold - I don’t think I am exaggerating when I say -200 degrees (incidentally when someone tells you constantly to make sure you don’t do something, does anyone else develop and overwhelming urge to do exactly that?) So nervy in fact that when he left and the small cylinder started making what I can only describe as honking noises I phoned him straight away and asked him to come back, only to confirm that this is just because it is new, and releasing pressure or something…I don’t know, as long as it’s not about to explode or something I don’t mind, although if said noises continue going out in public is going to be rather amusing (“would you like any cash back?” “Yes please could I…HONK” like some childish comedy gag).
When he was explaining to me how long it would last, saying how I could go out for half a day but then might need to pop home and refill it, I felt tears of happiness at this potential new freedom forming but managed to swallow them down before coming across as a hysterical over emotional woman. Even if I need to run it on 4 litres I can go out for about 4 hours but most excitingly, when the cylinder runs out, the fact I can refill it from the dalek in the hallway means I won’t be trapped at home waiting for a delivery of new cylinders. I road tested it last night and headed over to a friends house for lasagne and a sophisticated and profound film (pretty woman). The cylinder was quite well behaved, it seems to honk less when in use but complied and did kindly so at least three times which I appreciated for amusement value. I can now look forward to attending our Gospel workshop fundraiser for the CF Trust this Sunday (email@example.com for more details) which I didn’t think I would be able to go but am excited at the prospect of being part of what should be a fantastic day. Hurrah for Derek the Dalek!
Monday, November 20, 2006
Having made the bold and crazy decision to go out on Saturday (just to sit in the car whilst A ran a couple of errands as it really was the most gorgeous sunny day), I am out of oxygen again, not that this should be an issue for much longer if I get hold of this new superhightech liquid oxygen, yay! Incidentally for those who are wondering, you don’t inhale the liquid, rather it is stored in liquid form and returns to gas form when released from the cylinder in manner of liquid nitrogen or similar.*
Obviously the oxygen issue has been on my mind anyway, but there seems to have been quite a bit of discussion and thought on it within various “users” within the CF community. One thing that becomes strikingly clear whenever oxygen is discussed is how many people in similar situations to myself either don’t use it in public, and try to get out and about without it, or if their need is really that acutely severe, stop going out all together.
I find this very hard to get my head round. I completely understand the fear, and for anyone who doesn’t I suggest you draw a nice big line radiating across your face from under your nose to your ears with a pen, or tie a piece of string in a similar fashion, and then walk out into town and see how self-conscious you feel. I remember avidly the first day I used oxygen in the shopping centre in my home town. As may have become apparent, the potential purchase of pretty things works as quite an incentive for me, and not only that but when I am faced with a new challenge which is making me a bit nervous, I try to throw myself at it, sporting my best war-face, whooping and tackle it head on. The reason I do this isn’t because I am confident that I will win over whatever it is, but because I am driven by fear, fear that this feeling or issue will grow and the anticipation of it will become bigger than the actual issue itself, and then will be all the more difficult to overcome. We pulled up in the car (there were no disabled bays free so my mum parked in her skewed and amusing “I’ve arrived” manner in order to get me, Denzel my wheelchair and my cylinder out of the slim space) and set off through the car park in the direction of the shopping centre. At this point the butterflies in my stomach were dancing so much I thought I would actually be sick, and I started to cry, through nervousness and anticipation of the embarrassment of bumping into old acquaintances, what they would do and what they would say. Through my tears I told my mum to turn back as I had changed my mind, at which point (as only your mother can) she laughed, told me not to be so silly, and strode towards the shops with even more vigour. Slightly cruel? Perhaps, but having your mother tell you to pull yourself together is sometimes needed, as is someone to push you (no pun intended) when you feel like bottling out.
I think also there is a belief that using things such as a wheelchair or as oxygen is somehow like letting CF win, or admitting to defeat. Whilst at uni in 2003, walking around was becoming an ever increasing struggle and when considering my decline and the state of my health I most certainly took this view. Someone mentioned using a wheelchair to me and I recoiled in horror at the thought. Surely I wasn’t that ill, using a wheelchair would imply that I can no longer walk around, that my lungs have gone beyond that point and that this is the beginning of the slippery slope of losing my independence. It was also suggested that I consider using oxygen at this point at which I completely freaked out and refused on the basis that I was still waking up ok and going to uni and managing to continue living my life, so quite clearly I could manage without. I had a great social worker in Bristol, and she came to talk to me about both factors. She said that whatever I decided to use or not use, perhaps I needed to change my perspective and suggested the following. CF is affecting my lungs more and more, yes. I want to fight it, to retain my independence, and to keep living my life as best I can for as long as possible. Surely in order to increase my ability to fight it, it is sensible to employ any weapons I am offered. So instead of seeing the wheelchair as the step down, CF has already caused the step down, and now I am fighting back by using the necessary means to enable me to do more once again.
Stumped by this novel approach, I chewed it over for a few days whilst I was in hospital, examining all the pros and cons. At the end of the day, she was right. Whether I chose to use the wheelchair or not, chose to have oxygen at night or not, my lungs were getting worse. The only thing using these things would affect would be how much I could do and how difficult it was doing these things. It was at this point I decided to try and change my approach; I would still battle just as hard, but changed what I was battling against, and what I was battling for. I could probably count on one hand the number of occasions when I have come home upset/frustrated from reactions I have encountered, however the list of things I have done and would not have been able to do (or would have enjoyed so much less due to fatigue breathlessness and pain) is endless.
It is the overriding factor which is the most relevant when deciding what path to take, and for me it is more important to retain my freedom and the ability to go out and do what I want to do. I am more scared of being stuck indoors watching life go by than I am of comments and looks (and whilst actually going out wearing O2 isn’t half as bad as I imagined, 90% of the time people don’t even notice as they are too absorbed in their own lives but very rarely you do get stared at or get the odd comment) and for me the latter is the lesser of two evils and a small price to pay.
I actually get a lot of confidence from mini challenges, and consequently (hopefully) mini-victories. For anyone facing a personal challenge where any of the above rings true, push yourself, if you cant bring yourself to do it, rope in someone who you know will push you (I tend to go for my mum or A as I know they will also put up with any howls of rage and pouty faces induced by being pushed), as there is no better boost than facing something you are frightened of and coming through it.
*Emily’s very own special scientific understanding and explanation may vary from yours
Thursday, November 16, 2006
My physio came round this morning for my weekly checkup. Generally I can tell how the appointment is going to go before it even begins, predominantly because I inflict my self-diagnoses on them and they are so polite they usually go along with it. It was fairly normal in most respects; we gossiped far too much and then managed to steer the conversation towards lungs and their antics, but my opinion that “yes I am great thanks doing really well” slightly varied from hers. As she (quite rightly) pointed out my lungs are still bubbling and crackling a fair bit more than usual, in fact quite significantly so. I must have subconsciously chosen not to notice this and instead have been focusing on how much better I feel now I am not full of head cold. My comprehensive and substantial defense was “but I feel fine” and after a quick consult with the doctor we decided to wait and see how things are after the weekend. Still I am feeling nice and perky, and it’s so reassuring that the hospital are keeping such a close eye on me, not to mention the therapeutic benefits of a good catch-up and gossip, so all in all a very positive checkup I feel.
I am currently terribly over excited, not because of a big money win/new extravagant purchase or anything else others would find mildly thrilling, but because it looks like the oxygen situation might be about to improve. I have had one or two people mention to me the possibility of using liquid oxygen. These are apparently not only much smaller cylinders, but last much longer than the big gas ones I currently get. This afternoon I spoke to a nice lady at the Oxygen company who explained more about this liquid oxygen and agreed that I should qualify due to how much O2 I need (they seem to be quite strict as to who can have it as they have limited equipment at present). Apparently one of these liquid O2 cylinders could last up to 10 hours on a 2litre flow rate. Not only that but you keep a big tank in your house and then refill the cylinder as required.
At present, I have to use the cylinders as sparsely as possible to make them last, so I use them in the car to travel to somewhere like my parents house, then plug in my concentrator when we get there. The NHS are strangely unable to provide me with a team of men to accompany me wherever I go, carrying my equipment around for me, so A gets me settled then goes to and fro unloading and setting up everything. Having the freedom of being able to leave the house, a source of electricity and my concentrator for even 5 consecutive hours is just too exciting to contemplate and makes me scrunch my toes up with glee. My friend (who will hopefully start using it soon too) and I were chatting eagerly about the prospect of it when it occurred to me how that we may be the only people in the whole of Britain who have today had their days been made by oxygen.
Good god my bank balance is going to regret this.
Monday, November 13, 2006
The troublemaker herself - Claire my O2 Concentrator.
My cold - having temporarily moved location to my chest causing my lungs to gurgle merrily - is most definitely in its last stages, so feeling rather perky having fought it off with huge amounts of nebulisers, steam inhalation, physio and rest.
On Saturday night, Claire (my oxygen concentrator) - like a naughty child who has not had enough attention – decided to start playing up. The first signs of naughtiness materialized when A went to turn her up to 4litres for my mask, and she stubbornly stuck at 2litres, refusing to budge no matter how far he turned the dial. We rang the O2 company straight away, but decided to wait until the morning to call an engineer out. A few hours later I woke up rather breathless; apparently disgruntled by us not taking her misbehaviours seriously, Claire had decided to stop the O2 flow all together, although had slyly continued to rumble away in the pretence that she was still generating oxygen, and more worryingly the alarm had not gone off.
Somewhat concerned (and a tad annoyed that she had waited till 3am to go on strike) I switched to one of my tiny portable cylinders and phoned the O2 company. About 15 minutes later an engineer phoned me to get a better idea of the problem. I went and switched Claire back on as instructed, and the little ball defiantly rose and floated gloatingly at 5litres. Apologizing, I confessed she now appeared to be working normally, hung up, and returned to bed. Clearly frustrated her non-compliancy stunt hadn’t worked, a repeat performance ensued about two hours later. I rang again (through gritted teeth) and an engineer was with us by 6am. He decided to just swap Claire for a new machine (who I have also named Claire, as naming it in the first place confuses enough people) connected it all up and left. An hour later…the same thing happened. I phoned again, (the poor man on the other end of the line’s voice was a mixture of surprise and weariness, whether due to me ringing consistently or him being on the nightshift it’s hard to say) and this time was told that it is actually probably a problem with the water we are putting in the humidifier (bet the engineer was thrilled having lugged a new machine here at 6am).
Due to Claire’s strike leaving them working five times as hard, my lungs were furious with me and refused to cooperate for most of Sunday. A combination of this, lack of sleep, and the fact that A was tidying the house resulted in quite a teary afternoon. Let me just explain that last reason, it isn’t that he chucks all my stuff away or anything like that, rather that he has to do everything around the house, and I lie on the sofa getting in the way. And I hate it. There is no way around it, especially when my lungs are misbehaving as much as they were yesterday when even sitting still my heart was pounding so hard I could see my T-shirt shaking, but it just always makes me feel furious (at myself predominantly) because of the unjustness of the situation. A rather bizarre trigger for a completely irrational feeling I know, and amusingly (as those who have known me a while will know) I have never been a particularly tidy person, making these feelings even less logical. Anyway the combination of factors resulted in a rather teary afternoon. I sat feeling furious with the world, with the fact A is having to live like this, that I am having to live like this, with my lungs, with the lack of transplant 20 months later and with the fact that more and more things I want to do in day to day life (including regular days out and about thanks to the restrictions on portable oxygen) are prefixed by “after my transplant”. As anyone with bad lungs will tell you, crying is probably the least constructive thing you can do when feeling a tad puffy. I laughed through my tears to A about the fact crying probably wasn’t helping, and then inexplicably cried even more.
Still even though my lungs weren’t particularly keen on me crying, I think it did good for my spirit, as did the gorgeous hot shower I was given and resulting clean fresh hair, which when you are a bit groggy always makes you feel so much better! I sat there with my eyes closed, the hot water and steam helping me (and my lungs) relax. Here was proof that there are still things to enjoy even when you feel most down and incapacitated. My friend sent me a postcard from France last week which had on it a picture of flowers and the following caption: “Il y a des fleurs partout pour qui veut bien les voir” (roughly translated: there are flowers everywhere for those who want to see them). A French version of the English “Every cloud…” saying really, and equally as true.
Wednesday, November 08, 2006
Before I start I want to clarify that I cannot take credit (nor reprimand) for the above quote; I found it on an old blog discussion stimulated by the death of George Best. I don’t want to discuss Mr Best and I don’t want to discuss alcoholism. Simply the essence of the sentence which struck me was the bit about disease and how we can use and view it; that we can either use it as an excuse, or use it as a stimulus.
Over simplification perhaps? But reading this sentence suddenly struck me as holding a profound truth which I have been skating around for some time, and seemed to bring together to me an underlying similarity between many different illnesses, in fact not only illness, but group together something I have been trying to vocalize about perspective in relation to events and happenings which are essentially out of our control and therefore can have a profound affect.
To me this sentence actually sums up a lot about what I want to tell people about how I feel about life. To a certain extent, this isn’t a conscious decision. When events like being told I need a transplant or my close call in the summer, I get the urge to rush forward and take advantage of the fact I am still standing by cramming in even more to life than ever before. But some of it is definitely a conscious decision, and can at times take a lot of work, particularly when feeling particularly puffy or simply having “one of those days” that we all have when hiding under the duvet and steadily consuming our bodyweight in jaffa cakes seems like the most attractive option. At these times I find my health can act as a motivational tool, as merely thinking about how much less I can do this year compared to last, and how much harder it will be in 6 months again pushes me forwards to do it now whilst I can.
There are many things in life we can’t control; bad things happen. In an incredibly over simplistic fashion the opening statement says it all: we can hide behind these things, or we can use them to propel us forwards. And I am not just talking about illness, there are many other examples I have seen of people encountering truly terrible scenarios and rising up somehow stronger than before, moving forward and continuing to live their lives.
Take the label “I have Cystic Fibrosis.” Yes, yes I do. But what exactly does that tell you? Just that label on its own, what does that immediately mean I should be excluded/exempted from? The answer is nothing. There is absolutely nothing (as far as I can see) that merely the label of having this particular illness qualifies me for or excludes me from. Obviously the affects on my body which are now so encroaching on pretty much everything I do speak for themselves, but I am still learning every day that we are too quick to assume that something can’t or shouldn’t be done. There is a girl who was in hospital with me who has been using the breas (which is a non invasive ventilator) for several years now, and actually goes cycling whilst using it! Now I would have assumed that should I need to use that I will be bed bound let alone house bound, I am in complete awe, and healthily this has made yet again me reassess my ideas of what is impossible.
My granddad is a marvelous example here too. He is 90, so by all rights could be being rather difficult by now, insisting that people fetch and carry for him, sitting at home quite stuck in his ways. But he isn’t. He goes to evening classes (despite being one of the most learned people I know he is eager to expand his knowledge), he sometimes walks into town. He has some home help and he does a little dusting himself. He recently got a DVD player. He revels in hearing all about his family’s lives and considers himself to be one of the luckiest men alive. When A and I went to stay with him about 3 years ago we took him for a meal to a nearby pub. I pointed out the OAP menu and he commented (totally genuinely) on how useful that was for the older people in the town to which I wondered with slight awe and amusement at what point he would consider himself old!
Someone was talking to me the other week about my “readership” which since installing a counter I have discovered is surprisingly high (well it surprised me anyway). Whilst I am inclined to think that that is my ever faithful family and friends checking it repeatedly every 6 hours or so, there is the possibility that quite a few people stumble across this blog. Anyway my friend was asking me was there a key message I would like people to be picking up from reading my waffle.
I think to some extent there is. Predominantly of course I use this blog to help me get my own thoughts and feelings in line a bit, as some sort of cathartic, cheap, and rather public therapy, and also to keep people up to date with my health and happenings. But everyone wants certain aspects of their character or behaviour highlighted or picked up on, and I was trying to work out how to word my wants. Ultimately it all rotates around the fact that I love my life, and that without my transplant I have very little of it left. I think I would like people to see from this blog that it doesn’t matter how bad things become, or how close to the edge you get, it will never be “all” bad, it will never be “all” hopeless…and it’s not over till it’s over. My tagline is “this is my life and I choose to love it” not because I think that life is just that easy, but because I do believe we have some control over how much we get out of life and the experiences we have.
Obviously it is not as simple as that, nor do I mean my explanation and theory to be. There is far more depth and far more variables which affect both our outlook and the events in our life, but also my actual thoughts on life and perspective go deeper (yes honestly) and are more complex than this hopefully comprehendible outline. For example I don’t think that my way of viewing things is necessarily the optimum for everyone, in fact I don’t think that is the point, it is more the point to find a perspective and be content with it. Fighting doesn’t necessarily mean in order to extend longetivity of life for as long as possible. Nor does fighting it always mean you will win, (or at least you may have to redefine your idea of winning).
I want to enjoy my life because the way I see it, today is the only certainty we have got so I am going to invest my energies into making the most of it. I want to have fun, I want to encourage others to open their eyes and to do so. I want to show that for me at least, there is not a drawn out process I would label dying, because whilst you are alive, you are living. If I want people to see anything, I want them to see someone who was simply living their life, and loving it to the best of their ability.
I wrote the above some time ago when I was still in hospital, but only tidied it up and blogged it today as I am snuffly with a cold (and yes as such equally as pathetic as the rest of the population) and so decided to post this instead of attempting to write anything new and vaguely coherent. On rereading this I am not quite happy that I have managed to convey what I want to say, but I think I shall post it anyway. Thanks to the bloggers who had that conversation which led me to write this stream of thought.
Saturday, November 04, 2006
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.
Tuesday, October 31, 2006
On Thursday I pootled up to the Brompton (which I can rename my summer house I think judging from the last 2 years) to start another course of Intravenous antibiotics, mainly as a pre-emptive strike as lungs have started to misbehave and do naughty things like bleed spontaneously for no reason at all in the middle of the night; clearly not conducive to relaxation. In some ways it was quite nice to go back up to the hospital as I got to catch up with some of the staff and I think it was nice for them to see that I was doing ok too. The day went smoothly and it was a wonderful and liberating feeling to just be an outpatient and to arrive and leave on the same day. It is a gloriously blue-skied crisp and sunny day today but I am trapped indoors, having run out of portable O2 a week ago and been left stranded by my suppliers (anyone would think I am demanding bottles of pink champagne not oxygen!) Trying to get hold of new oxygen cylinders creates all sorts of fun and games - the response when I pointed out the importance due to me being listed for transplant was highly amusing; “we suggest that should you be called you ring us straight away and we will try and get some to you as soon as possible” (clearly they don’t quite understand how transplants work). Still IVs cause you to tire out quite quick so it’s good timing to be stuck in and made to rest really, plus it looks quite blustery outside and I love watching the wind whilst being all being all snug and warm indoors.
Someone mentioned that I should make a list of things that I am looking forward to post-transplant. I have actually already done this, but just not blogged it, so I shall do so now. Incidentally for anyone who notices that there is an abnormally high number of things which involve me turning round and round for some reason or another and become concerned for my mental health, this is for a reason, it is actually because this random maneuver is most difficult whilst using O2, as it inevitably results in me being wrapped in green tubing (in manner of a human Christmas tree or similar) and has left me pouting and bleating for help in detangling on more than one occasion.
So here is my list I made a while back, of some of the completely inane, normal and everyday things I am looking forward to doing post transplant.
-Walk down the road (This is the image I replay in my head when I am feeling most down: to walk out of the front door with nothing in my hand except my keys…and just stride down the road, and hopefully to start running. I don’t have in mind a place I will be heading towards, just the fact I will be alone and empty-handed.)
-Walk up the stairs. All in one go. In fact run up them, probably tripping over and breaking several bones in the process.
-Go swimming (I used to swim loads, right from a very young age. As a child and loved diving down under the water and wished I was a mermaid).
-Lie back in a steaming hot bubble bath (lungs are currently not very keen on very hot water or lying flat)
-Dance in the rain and get ludicrously soaked (and then probably remembering that actually getting all wet and cold isn’t as romantic and/or as fun as one imagines)
-Twirl round and round until I am so dizzy I fall over (preferably wearing my rainbow dress where the skirt flies right out like a dancers dress)
-Actually learn how to walk in heels as have been cheating by using wheelchair therefore kidding myself that it doesn’t matter that I would completely stack it in 20 seconds.
-Blow up balloons and blow out candles (I will have to throw a party just to allow me to do both, what a shame).
-Go out dancing all night long, and especially dance with A (dancing in general is no longer very plausible but dancing with someone else even less so, due to tubing issue causing the majority of moves to be a major health and safety hazard).
-Roll down a hill (self explanatory for anyone who has ever let their inner child get the better of them).
-To stand and have a shower (I currently sit on bath board, which as several people have pointed out is probably the more preferable option and novelty of standing is likely to wear off more than quickly)
-Sing a power ballad (into my hairbrush, on my own in a soundproof room obviously)
-Decide that I must suddenly by some miracle be quite a sporty person, take up a random sport such as lacrosse or similar, have one lesson, and realize that actually it was a lung transplant not a personality transplant.
This is by no means an exhaustive list, it’s just one that I thought up one day in hospital when it was absolutely tipping it down outside - the kind of rain which has really big fat wet drops and therefore would soak you in sixty seconds – and looking out the window gave me a compelling urge to race outside and run around a lot. It makes me smile every time I read it, so am off to make a cup of tea and then re-read it some more.
Thursday, October 26, 2006
The morning is spent doing various tests (although I didn’t do any of the lung function tests as I am still banned from doing those due to the risk of them making my lung collapse again) and then we headed off for a bite to eat. After a rather lively lunch with much laughter due to inability to get food into mouth without spilling it everywhere plus excessive pudding helpings, we went back across to the transplant clinic, to meet with the doctor for the chat part of the checkup.
A slightly confusing start to the clinic for everyone, as we sat down with the doctor who gently asked how I was doing to which I responded brightly “yeah I’m fine thanks how are you?” Somewhat confusing to a doctor who is seeing me in a transplant clinic and had clearly been reading my notes detailing the summers events. It is a sort of ongoing problem I have, where my desire to protect and not upset other people by describing the most frightening and disheartening aspects of my health seems to seems unable to distinguish the health profession as people who don’t actually need shielding. This is perhaps somewhere where a positive attitude does not help, when it results in the sentence “but I’m doing fine really” being tacked on the end of everything.
We pummeled the team quite vigorously to find out what was going on transplant wise. There have been two main problems recently; one is the continual lack of donors, and the other is non-viability, where there is a problem with either one or both of the lungs, (which is what happened at my false alarm in August) resulting in only one or perhaps neither of the lungs being transplantable.
I came away from the appointment feeling rather downhearted, which is daft because there was much to be positive about and focus on. But I can’t help but get frustrated. The general consensus of the population is that people support organ donation and survey after survey shows that people would like to be organ donors in the event of their death. Yet there is still such a discrepancy, only 22% of people are on the organ donor register, and still the number of transplants is decreasing. Whilst I am determined to keep on raising awareness at times I feel like I am fighting a losing battle. It is true that every day we receive messages from people who have been touched by our campaign or who have learned that they can sign up via the net and have done so straight away (this is the most common response) but I cannot contact everyone in the country to make sure they have considered the topic… and I am running out of time. I mentioned the dizziness and puffy spells at clinic, and they explained that my heart has to work pretty hard now due to teenytiny lungs, then gently told me that perhaps I need to slow down a bit. This is not what I wanted to hear. I wanted to hear that there is something miraculous that they can do to keep my lungs holding on that bit longer, to improve them a bit more and to help me last that extra mile whilst I wait for my transplant, but they can’t do that.
As my mum pointed out on the way home (which made me want to deck her although it is clearly not her fault and she is 100% right) it is down to luck really. If I am lucky enough to be in the 50% that get this transplant then yay, fantastic, the possibility of some years with healthy lungs is an exciting contemplation, but because it is down to luck, this is why I have decided to go out and live life now, not cocoon away in a self preservative manner. But it still makes me sad, I am not brave, I am greedy and desperately want to keep on living.
I do love writing this blog, it is so therapeutic, as even just by doing that it has made me realize how lucky I am to have such a fantastic life that I want it so so much, not everyone is lucky enough to feel that happy with their lot, so already feeling perkier. (proof of my “but I’m OK really” syndrome there!)
Saturday, October 21, 2006
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!