Saturday, December 29, 2007

So Christmas is over; I hope everyone had a fantastic one…mine certainly was. It’s funny, I was going to write about all the wonderful and amazing things I did this Christmas, but then I sat and reread last years blog and it’s pretty much identical! Except this time, I could actually participate rather than be a spectator. I was able to join in when I wanted, eat when I wanted, get up and sit down when I wanted, talk, sing carols, open presents…basically everything that had been so very hard and restricted last year was suddenly an open and easy option to me.

Its times like this – when I am repeating actions carried out with old lungs – that it brings home to me just what a struggle it really was. I remember Christmas dinner so vividly last year; within about 4 mouthfuls I was so tired and out of breath I lay down on the sofa again. Last year by the time I had had a shower and washed my hair, I was so exhausted I wanted to cry. Don’t get me wrong, I had an amazing Christmas last year, but it took a hell of a lot of effort. And this years was just so…easy. I can't describe how lucky I feel.

On Boxing Day, it was me who was insisting that we go on the traditional “we’ve eaten too much let’s try to feign some exercise to make ourselves feel better” walk. We strolled briskly down the road and I was grinning from ear to ear – a task that in childhood was resented as our parents made us go (it was warmer inside), which then as I grew older became almost impossible, which was now accessible to me once again.

I had a teary moment on Christmas morning when thinking of a family somewhere waking up for their first Christmas without a loved one, but hoped that they can take some small comfort knowing I am alive to see another Christmas thanks to their generosity of spirit. 31st December 2006 I sat with tears streaming down my cheeks as Big Ben struck midnight – tears of relief at still being alive, of fear of the unknown, of sadness of what might be ahead in 2007 should nothing change. I cannot even begin to fathom how I will feel this year…but I know I shall be out partying somewhere as no matter how huge it is emotionally it is cause for a huge celebration. This is a New Year I genuinely didn’t think I’d see.

And now here we are – a mere 6 days before my very first transplantaversary. I am very excited but already get quite emotional thinking about it. It was the beginning of one of the most difficult struggles in my life so far, but the start of a whole new chapter for me to embark on. Whilst a new door was opening for me, someone else’s was closing, and it does get to me more and more the nearer we get to the big day. Such a whirlpool of emotions. I have written on here more than once about how there is no “sad” or “happy” event – merely a mixture of everything in different quantities and my transplantaversary will be no different.

Friday, December 21, 2007

Oli is in the Mirror today!

Although you can read it here you'll need to buy a copy to see the man himself post transplant...

Go Oli! YAY!

Thursday, December 20, 2007

If I had this tree, I have a feeling I'd be minus a husband...


I'm like a child at Christmas I am. Oh no wait....

I still can't believe that this was me merely a year ago. My mummy did her annual Christmas shop with her mummy at the weekend and reminded me that it was somewhat interupted last year when she had to return home as I was finding breathing so difficult (even on maximum oxygen) that I needed her to come and be with me as it was pretty frightening. It's just so so weird to think that little did I know a matter of weeks later I'd be getting my new lungs.

I got a bit sad yesterday thinking about my donor family, who somewhere out there must be dreading this Christmas. I wish I could do something to help them. Thinking of everyone out there who has suffered a loss and might be finding the festive season particularly tough.

I really hope that rereading my blog gives those waiting for transplant, or indeed those suffering any difficult episodes in their lives some hope. Things can change beyond all recognition, you just don't know what's round the corner. The unpredictability of life is what makes it scary but also what creates hope. I think personally I'd prefer unpredictability if it means there's always a chance things could get better, rather than knowing what my lot is and having an unchangable path set.

Learn from yesterday, cherish today and hope for the future, I think that's a pretty good balance.

Wishing you all the most fantastic Christmas - may it be fun, festive, sparkly and filled with laughter and joy. Thank you all for your support, friendship, wishes and thoughts this year; I don't think you can ever realise how much a little message of support or comfort can reach out and touch someone at a time of need.

Bit of a deep pre-Christmas post there! I am off to continue wrapping presents and adorning things (predominantly myself) in glitter. YAY!

Tuesday, December 18, 2007

written yesterday but not posted as internet decided to pretend it was not there when it actually was.

I decided to go to Bristol for a two day visit; the town where I spent three of the happiest most fun-filled years whilst studying at university. I had a list of people to visit, the majority of which had not seen me (or had only briefly seen me) since my transplant. I was very blaze about it all - I think because it feels like a second home to me - and had absolutely no idea just what a hugely emotional trip it would be.

As I drove into the town centre, a big grin made its way across my face; I really do love Bristol, not only do I have a million very fond memories there but it’s a great town in its own right. I drove up to the flat where I lived for two years to be greeted by a manically waving and grinning ex-flatmate, who is still there as she’s a medic therefore will be studying for what seems to me to be the rest of her life. The flat hasn’t changed much, in fact to such an extent that there was still 2 old (empty) oxygen cylinders in the hallway and Claire’s eyes (the eyes we made and stuck on my oxygen machine) are still pinned on the notice board, which made me giggle.

Me and my girlies went out for lunch in one of the local cafés which I never managed to get to as it has stairs in and I tended to go for ground floor close proximity places. Whilst we were munching our lunch and catching up, I suddenly realised; these girls have never known me as a "well" person. I mean by the time I moved to Bristol in 2002 my lung function percentage was already in the 40s and I was on 3 monthly IVs. It was quite a peculiar realisation as whilst they shared possibly the biggest part of my life with me so far, it was only a small segment time-wise, and so the “well” me is a new and novel thing, even more so than for people at home.

Walking along the roads past University buildings really bought back sharp memories of how I used to struggle; I'd arrive at the French department which was about 2 roads away from the flat breathless, sweating and exhausted, and would ensure I arrived about 20 minutes early so I could sit in the foyer and recover. It was all just normal life to me then however, and I didn't think twice about these allowances which had to be made for naughty lungs.

Of course it’s not just the people – I’d never been in Bristol as a well person either, although I never thought of myself as ill when I moved there to begin uni. I’d go to pubs and clubs with everyone else (mind you I still did that even once on oxygen) but I’d always be that little bit slower, be the one to get the taxi back, be the one to sleep all day the next day. Not that any of that mattered – as there were quite a few students who’d sleep all day completely independently of any health issues.

This morning I decided to wander down to the Drama department. As I wandered up the road, which sloped gently upwards towards the department, I was surprised to find tears pricking my eyes. I didn’t realise how emotional it would be. I didn’t walk up that road once in the final year; I was always either driven or pushed in my wheelchair. To walk towards the door just seemed so significant.

I figured everyone would have gone home as term ended last week so was delighted when I saw my favourite porter in the doorway, and even more thrilled to find quite a few members of the department still hovering around. The reaction from everyone I saw was the same; a polite “hello” with a look of “I’m sure I know you” followed by a very slow realisation sometimes prompted by me saying “I suspect I’ll seem more familiar to you if I sit down and stick some tubing on my face.” One tutor who only taught me in the third year commented “you look so different standing up!” but everyone was delighted and so lovely. They’d all followed my progress (always most bizarre when everyone already knows all the news you’ve come to tell them) and it was so lovely to catch up with them all. I had great trouble not bursting into tears on several occasions as I relayed events over the last 2 years; so much has happened since I was last in those four walls – which incidentally was when I was given day release for graduation whilst still having a chest drain in in the summer of 2005.

After tea, chats and a great catch-up, I headed towards the BRI to see the team that cared for me whilst I was studying. The look on their faces was fantastic as I walked in, and we hugged laughed and chatted whilst I threw many a wedding photo at them, until it was time for me to go. I am hoping to go back to the Brompton too at the beginning of next year as teams who care for you when you’re so sick don’t really get to see the positive results as your transplant hospital takes over your care. They worked tirelessly to get me that far and preserve my health until a transplant materialised and it’s very important not to forget that.

I drove home this evening tired, a little emotionally drained, but very very happy. Bristol is much the same as it ever was, but my life has changed beyond recognition and that made this visit a very strange but beautiful one.

Thursday, December 13, 2007

We’re baaaack! We had an amazing time, Budapest is breathtakingly beautiful. For those who are as daft as me (probably not many of you, here’s some information about where we went.

I’m a bit of a nervous flyer – I wasn’t always so but when I was about 17 I developed some large cysts in my lungs and there was a danger of them popping (which many years later they did. Repeatedly). I was told at this point going up in an aeroplane may in fact make them pop and cause my lung to collapse, but that hopefully they were stable, and the only way to tell for sure was to fly. So that first flight (as I’d be damned if I was going to not go on holiday ever again due to something that may or may not happen) was a pretty scary one, and I think dented my confidence.

However the flight to Budapest was fine. I have to remember I have healthy lungs now that can cope with high altitude and cabin pressures, and after about the first 20 minutes I stopped saying “are we nearly there yet” with my eyes squeezed shut and began to relax. I even managed to doze, woohoo!

We arrived late afternoon so ditched our bags at the hotel and went straight into the centre. It was nightfall by now, and all the streets were decked in Christmas lights as we walked towards the square where the famous Christmas markets would be. We stopped at the first stall to grab a glass of mulled wine and wandered through the little Christmassy kingdom full of jostling crowds. The stalls were beautiful and so brightly coloured; candles of all different shapes sizes and colours piled high, hand made Christmas decorations of dried fruits and nut shells, painted, glittered and sparkling, scarves of every colour and pattern imaginable, large wooden huts with the most delicious smells coming from them as steaming bowls of soup were served to hungry shoppers.

Made a tad hungry by all the scents of food, we sought out a restaurant and found ourselves climbing down a winding staircase into a dark high-arched tunnel filled with candles to get to a restaurant in an old converted wine cellar. Hungarian food is very good – there’s loads of choice, a key speciality being of course the famous goulash which we had more than once. I may or may not have eaten far too much during our few days there.

We also ensured that we visited the Spas that Budapest is so famous for. The first one was my favourite as they had outdoor baths there, so you’d sit in steaming hot water with the icy wind whistling over your head. It was so surreal and rather magical, especially as dusk fell.

We saw all the main sights, sampled as much food and drink as we could (I even tried the local pear brandy which was pretty good, says she who knows absolutely nothing about what brandy should or should not taste like). I may have bought a few clothes too. Oops.

Whilst there I thought quite a bit about this time last year. A and I always try and get away for a few days around Christmas and over the years our destinations have got increasingly closer to home. In 2006 thanks to the Chloe Janet Ball trust I took A to a luxury hotel in London. It was such a different experience, we were overjoyed that I was merely well enough to “be” in the hotel, and spent pretty much all the time in the room, with me sleeping intermittently, trying constantly to catch my breath with my oxygen machine as high as it would go. It’s fantastic that we appreciated and enjoyed that small but significant break so much, and I think experiencing that end of things made this honeymoon even more special.

I realise I am now beginning to waffle therefore shall close with a few more pics. Enjoy!
Christmas Market

The tunnel to the restaurant.

It's a Hungarian Tram behind me. I got a bit excited.

Thursday, December 06, 2007

Harefield today – my first clinic appointment in 3 months! The weather was pretty atrocious this morning meaning the roads were just as bad, and I drove past two pretty horrible accidents (I am not very grown up and it makes me very sad when I drive past these things). Got there late (doh) so straight in for bloods. Clearly I hadn’t drunk enough this morning as even after 3 attempts by one of my fave phlebotomists who usually has no problems with me, I was pretty damn stingey.

I knew I had a busy day ahead as I had several things on my agenda; Christmas cards to deliver to each ward, a huge tin of biscuits to wave at any passing staff, and of course wedding photos to show off left right and centre! Oli and another person I know are inpatients so I wandered off to wave to them as well. Oli is looking fantastic (although if he’s anything like me he will want to pelt people with anything in reach who keep saying that to him) and it was so lovely to see all the staff again on various wards. There was much cooing and admiring of photos and chatting excitedly about the honeymoon which is on Saturday!

I may not have blogged about this…we weren’t going to go on honeymoon as A had used up all his leave from work (and more). Well I guess technically I’d used it all up for him, but either way it wasn’t looking likely until his lovely company decided their present to us both would be to send us to Budapest for 4 days to experience the gorgeous city and famous markets, hopefully including some lovely Christmas ones. I am really rather over excited about it all. How sweet are some people in this world…

Anyway back to today; X-ray was fine, lung func up quite significantly which they were all delighted by as I am nearly 1 year post and it’s still moving upwards, yay! The only thing that was a tad amiss is my creatine levels seem to be playing around a little bit. I really know very little about kidney stuff (in fact what I do know you could probably write on a postage stamp) but I do know that we don’t want jumpy creatine levels as it is some sort of indicator of kidney function. Or something. Anyway it’s the first dodgy result like that I’ve had since discharge so it will be followed up once we get back from honeymoon. I’d rather appreciate it if my kidneys fell into line and didn’t get too over excited like that again resulting in much more normal blood test results.

All in all a good day. And am clear to fly off on Saturday – eep! (never been the keenest of flyers). Will be back and posting with pics some time next week.

Monday, December 03, 2007

Oli is doing better, fingers crossed for onwards and upwards from now on.

Also excitingly (well for me) I have been married one month today, and couldn’t be happier. Yay!

On Saturday night we went to a friend's transplantaversary celebrations (his brother gave him a kidney a year ago). It was a great evening, but strange for me for two reasons. Firstly, it was my first real time meeting new people, or at least people who don't know me in the transplant context or don't know any of my background, since I had my op. Before my transplant I was a) fairly easily identifiable due to all the tubing and b) it was clear there was something wrong health-wise. Now, I was meeting and shaking hands with various people, and the inevitable “so how do you know X” comes up.

I decided not to opt for the “I’m the one with the new lungs” and went with “through charity work” instead. I have never had a problem being open about my health and history, even before it became so evident, but it just felt so strange to be able to become an anonymous figure again, someone where no details are revealed unless I make them so. The last real time I was able to do this was probably the start of University – when you have that huge dilemma of how much to tell people, as these are the people you will be living with for the next year or so, but at the same time you want them to get to know you on your own merits, and not with the premise that you have a chronic illness. I don’t think I will ever shy away from talking about my transplant – I’m too into raising awareness and also too much of a drama queen and quite enjoy trying to watch people digest the fact that I am on my second pair of lungs – but it was a novelty to just be a blank canvass and be able to divulge whatever information I chose.

The festivities also reminded me that my transplantaversary is coming up very soon. All I know so far is that I want to do two things. I want to go somewhere quiet to reflect and have a little cry for the family that is marking a very different anniversary, and I want to get together all the people I love to celebrate and say thank you. I have written before many a time about how things in life cannot be divided into happy and sad occasions, and this day will be no different. On the whole it marks the beginning of my new life, a chapter which is an incredible gift and the opening of so many doors which would never have been, but it also marks the start of some of the hardest two months of my life, of a great loss for someone somewhere, and of a hell of a time for my family as they watched me battle complication after complication.

I can’t really predict how I will feel till the day. All in all it will be hugely positive, I’ve made it a whole year post transplant, and bring on hopefully many more. But I won’t be forgetting why I am able to be here and celebrate this special day, and will find a way to mark it. Somehow.

Friday, November 30, 2007

Oli has been moved back to ICU due to an infection and is fully sedated again.

This will be familiar to those who know my story (although I never left ICU in the first place) so please please keep him in your thoughts, as he's got a fight on his hands, but I am confident he can do this.
Yesterday I spent the day in a perpetual state of excitement which resulted in feverish cheeks and having to lie down quietly for a bit.

Last night I finally got to see my favourite comedian live, the one and only Mr Bill Bailey. For those of you who still do not know any of his stuff (I have berated you on here before) then please will you go and equip yourself with a copy of Part Troll!

I have been trying to go and see him for a long time; first time I wanted to I was in Bristol, but failed to get a ticket in time. Then I was too poorly, then Laughter for Life happened....and I got new lungs (yay!).

So was rather excited when I managed to get tickets for him latest tour. Even more excited when A and I got VIP passes to the drinks after the gig and I got to meet him! He's a really genuine guy and keen to keep supporting LLTGL which is fantastic news.

The whole night was awesome, very very funny, and for me a strangely big deal. Not only because I am a rather large fan, but because it sort of symbolised the fact that I am no longer in that fragile state where it's risky to make plans for 24 hours time, let alone for a month or so down the line. I can now make plans and stick to them. Which is quite exciting really and opens up the possibility for all sorts (ie holidays) which had become far too difficult a task prior to transplant. I booked these tickets months ago, and remember feeling everso wary about whether I'd be well enough to make it...but repeated hospitalisations are a thing of the past. I have new lungs.

This year has been such an incredible journey, and there is still so far to travel, so many possibilities and new experiences which lie ahead....I can't help but be an over excited child who's constantly grinning from ear to ear.

Wednesday, November 28, 2007

Oli is still doing fantastically well, he's really flying. Mentally it's all very tough at this stage, whether you are progressing well physically or not, so please do consider sending a little card to make him smile.

On Monday I had lunch with a lady from the Donor Family Network. It was really nice to actually sit and chat with her and not just say a flying “hello” at an event. She lost her husband and decided to donate his organs, then later on got to work on the DFN to help support others who are in a similar position to her.

She very kindly bought with her two of the letters she has received from recipients, so I could see what kind of thing other people write. Reading them was an incredibly moving experience, you could really feel the emotion and desire to express significant gratitude behind the words.

I was talking to her about my transplantaversary, which is actually approaching quite fast. Obviously I am going to celebrate as it marked a new beginning for me, but at some point in the day I need to go somewhere quiet, on my own, and shed a little tear for the family who will be marking a very different anniversary in deed.

The DFN lady was telling us about their new project; it is to build a memorial garden at the NMA in Staffordshire, which will have four parts to it: For donors and donor families, for recipients and their families, for those who died waiting for transplant, and those who wanted to donate but were unable to (there are various reasons for this and apparently it’s more common than I would have thought). The garden sounds like such a wonderful idea, it will give people like me and everyone touched by transplant or organ donation somewhere to go and reflect. They are spending the next year fundraising solidly to make this project successful, and Live Life Then Give Life are very keen to get involved, so we will be promoting any ideas they throw our way. I am so very excited that my new lungs have given me the energy to do so much more. I love it!

Wednesday, November 21, 2007

Everything has been a bit up in the air since the last blog as on Monday night, my good friend Mr Oli texted me informing me that he was on his way to Harefield. For some reason I was totally over excited by this whereas I usually manage to remain calm, as there is still a long way to go before you get the green light as we say. Anyway I just had a really really good feeling about this....but then I've had that before and been wrong.

Some of you may know Oli through his work as a CF ambassador, others may have been priviledged enough to hear him speak at Laughter for Life in March. Some of you don't know who I am talking about but rest assured he's a rather fabby guy.

Further texting ensued throughout the evening ("I'm bored. Oli") until the fantastic confirmation that he had the green light and would be going into theatre around midnight. I promptly burst into tears (rational and helpful) and started texting everyone I could (again helpful). News spread like wildfire that night and he already has loads and loads of messages of goodwill, love and thoughts stocking up.

Surgery went well, he is already doing absolutely brilliantly but it's very very early days yet. He's never been quite the drama queen I am so I am hoping he will have a slightly more mundane recovery.

His family are keeping his blog updated as and when they can:

Very very excited for Oli and his family; this is hopefully the chance of a new life full of the most amazing opportunities and experiences. Please keep him and his family in your thoughts, and of course that special person who has made this new path open up for them, his donor.

Monday, November 19, 2007

I went shopping in Wimbledon today. Arriving at the Station I suddenly found myself swept back in my memory to when I used to come here to get the tube to the Brompton. I headed towards the stairs, remembering how daunting and foreboding they would appear and how I would haul myself up holding tightly onto the rail and stopping a few times on the way up to catch my breath.

As I got closer to the stairs I made the executive decision that my first time going up them in many many years should be a memorable one, for myself and for any poor commuters in my path, so I bounded up them as fast as I could, stopping at the top rather breathless but in a good way; the way that healthy normal people feel on any stair-bounding exertion.

I met Gaz’s mum in Wimbledon, for a spot of shopping and a generally good natter. We shopped and shopped, and chatted and chatted, and ate in between, and had a generally lovely day, although it appears we both need to examine the definition of Christmas shopping which may or may not have resulted in more purchases for ourselves than it did for other people. I miss Gaz to pieces still, even nearly 3 years down the line, but it is so nice to have developed this friendship through him…mind you I know he would have been rolling his eyes at the majority of the goings on during the day.

There has been a topic on the CF forums about sympathy, and most people have posted on it stating how much they hate it and find it patronising. I am a bit torn on this one. On one hand I have certainly experienced that look (and actual statement) of “oh you poor thing” staring down at me, head cocked gently to one side in sympathy. Yes it can be annoying but more than often I found it amusing, plus I think that some of the comments were a bit too angry on the boards. I mean, just put yourself in that person’s place; how are they supposed to know how to react? A friend’s mum was diagnosed with cancer quite a while back, I was rubbish. I didn’t know what to say except for “I’m so sorry”. That good old cliché. If when surrounded by death and illness as much as I have been you still can’t find the right words I think Joe Bloggs in the street should be given a bit of a break.

Mind you if it’s anything like the experience Jac talked about in her stability post, you have the right to be a tad annoyed...

Thursday, November 15, 2007

I was woken from my sound sleep this morning by a phone call from a panicked mummy.

Her lift had somehow not picked her up and she needed to get to work, so I threw on a bright pink jumper (bright enough to wake me up) and headed straight for the car in "Emily to the rescue" mode.

Stepping outside took my breath away, both due to the sheer air temperature and the beauty of the glistening outside world. I live on a fairly pretty world, and having everything decorated in what in my opinion looked a bit like sparkly lace was rather exciting. Last winter, I was lucky if I opened the curtains before 11 and would certainly not venture out of the house in cold weather as my lungs would instantly through a huge strop and start bleeding in retaliation.

Having not driven this early in the morning for rather a long time, I had completely neglected the fact that with cold weather comes something else: icy cars. I sat in the car and switched on the heater, in the naïve optimism that the ice would magically evaporate from the car. After 2 minutes or so when said ice showed no signs of doing such a thing, I decided brightly to “wash” the ice off by washing the windscreen; cue newly frozen sheet of ice on top of icy windscreen. I have no scraper, as I have never needed one before. Whilst I waited for the heater to work its magic I sat pathetically pushing the buttons to make the windows go up and down as if by some magic this would knock all the ice off (again didn’t work).

10 minutes later I was on the road and picked up a bounding and cheerful mother (if the jumper didn’t wake me up then she certainly would have) and we set off to her work. On the way we had to drive through a park, which was absolutely stunning in the low winter sunlight, frost all around. It sounds so daft to be so captivated but I genuinely missed all these sights for the last few years, due to old lungs despising cold weather (even though I have always loved it) and general poor health preventing much outdoor winter activity.

The last week or so has actually been really busy; I went to Birmingham to speak at a physiotherapy conference which was a great experience. I have a huge amount of respect for physios, because as health deteriorates they unwittingly become not only a physio but a source of comfort, support and council. I think it’s because whereas doctors and nurses are often only in the room for minutes, physiotherapy can take some time so you build up a very strong bond. I could not have got through a lot of my tough times without not only their physical support and symptomatic relief, but their help and guidance with my emotional wellbeing. Unfortunately I managed to have quite a few in tears again, but I can’t help it; I talk very openly about whatever is asked therefore some of it will be sad as certain episodes certainly were. I was lucky enough to meet a few physios who treat/have treated my friends (Robyn’s, Oli’s, Jess’s) which was lovely too.

Saturday I attended the Lord Mayors Parade on the Transplants in Mind bus. A really fun day, I was whooping and shrieking and cheering along with the crowds, as we handed out thousands of flags to people lining the streets. If just one person picks up the phone and registers after that then that’s potentially 9 lives saved…some pics of the day below. Stay warm!

Two really nice guys who had their transplants yeeears ago.

Monday, November 12, 2007

OK it's not quite finished yet but people have been... "encouraging" me to get a move on!

(if you can't view the below slideshow click here as this might work)

Tuesday, November 06, 2007

Potential GMTV appearances tomorrow morning...probably around 6.30ish and 8.30ish.

so look out, those of you up at that ungodly hour!

Edit - I was on at 8.30ish. Clip is actually viewable here - - scroll down to find "Emily Thackray". Watching all the old bits of VT of me pre tx was actually quite emotional, particularly the final one which was filmed less than a month before my transplant. I can't believe how fragile I look and how quiet my voice is!

They cut it short sadly which means you don't get to see my lovely sisters have some input! Oh and the surprise was merely my announcement so don't get too excited ;)

Monday, November 05, 2007

OK time for part 2…incidentally look at this to see what life was like this time last year – I still can’t believe the change!

We walked past the front of the hotel and up to the curtains which were concealing the entrance to the main barn. As they opened a fraction for the hotel staff to give the thumbs up I could see A waited expectantly at the end of the room. I heard the announcement “please be upstanding for the bride” and the beautiful cello music started up – a piece composed especially by A for me to walk down the aisle to. As we entered and the cameras started flashing, all I could see was A standing looking so proud. I locked eyes with him and refused to shift my focus. Tears were already welling up and due to the emotion I may have sped down the aisle, causing many jokes afterwards about me wanting to ensure he didn’t make a swift getaway!

We finally reached the end, my daddy kissing me on the cheek and squeezing my arm as he took his seat next to my mum who was already wiping away the tears. A squeezed my hand and the registrar whispered hello followed by “this is a happy occasion!” probably in shock at the amount of tears already filling the room! We sat down as she began the service, and then the first reading “these are the hands” was done, H2B and I tightly holding each others for the duration.

We then stood to make our declarations that we were ok to marry and this was followed by a second reading, this time in French (A's family are Mauritian) by A's sister called “mon amour”. We then made further declarations in which A stumbled over lawful wedded wife, I giggled knowing this was due to our constant jokes that he might accidentally say awful wedded wife! Rings were exchanged and next it was time for our own personal vows. A went first, and tears filled my eyes as he thanked me for fighting so hard for this. In a bit of a wibbly voice I said my vows, talking about how I had never really let myself think of this day and how thrilled I was that we were here at last.

Our third reading followed, and then all that was left to do was to for the pronouncement that we were husband and wife (in which I uttered a small “yay!) followed by “you may now kiss the bride” and a huge gale of cheers and applause. Muchly photos during the posed signing of the register and we walked out triumphant to Signed sealed delivered with people cheering and laughing as the realised what was playing.

By the time I came out of the room I actually felt sick – I think I was just overwhelmed by all the adrenalin and the emotion of the day. Luckily during the photos and mingling for drinks that feeling began to wear off, and as the room was reset for the buffet I eagerly chatted to all our wonderful friends and family who were sharing this day with us.

The buffet was served and everyone took their seats. I was quite proud as I had designed pretty much everything; from the flower arrangements (went to the wholesalers myself) to the favours which were my proudest bit I think. Each person’s name place was a mini ivory envelope with a small iridescent glitter heart I had painted on and their name written on. Inside each envelope was an individual verse or saying about seeds or flowers, every single one different for every single guest. For example, mine was: “The road I walk along is time, it's measured out in hours: And now I need not rush along, I stop to smell the flowers” By Alvin Lee. Also enclosed was a tiny tissue paper parcel of seeds with the following details:

Bellflower seeds. (Campanula) Symbolises – Gratitude.

Without Emily’s donor, today would not be possible, Please plant in your garden to let our love and their legacy bloom on.

Wine flowed, people ate and chatted merrily, did the quizzes (which was to work out the significance of each table name) and then came the speeches. They were all fantastic, although I shall never forgive my daddy for a certain potty story which was relayed to a giggling audience.

We then moved into the bar room as the main barn was reset again for the evening’s festivities. The evening was absolutely fantastic. We had about 180 people there in total and they were all well and truly up for a party! Our first dance was Amazed by Lonestar, followed by a “sega” (traditional Mauritian dance) which really got the party going! Then the first of our live bands – an awesome swing band – came on and got everyone on the dance floor. This was followed by an hour or so of the DJ after which the Mauritian band took the stage and played some more Mauritian party pieces (one of which I had previously done backing vocals too at a gig of A's so I was forced up to the front microphone in hand to assist!) At this point a Mauritian buffet was served which went down extremely well!

All live music over, the DJ played on through the night till at 1am a tired but ecstatically happy wedding party came to a close. The day was just magical - it went so very fast, the ceremony itself like a blur, but I loved every single minute. I don't think either of us have stopped grinning since, and we have a whole mountain of cards to work through so you will hear from us in due time if you sent one...

As with seemingly every step in my life, be it good or bad, people always rally round and want to play a part, and this is so very appreciated. So thank you to everyone both who came and who has been thinking of us from afar on our special day. I cannot believe we made it, but I am now officially Mrs A.


ps - one or two pics to satisfy curiosity but slideshow coming soon!

I am a married lady!!!!!!!

How incredibly grown up is that?! Actually watching my mother I know that you do not in fact need to be grown up when you are married. First of all take a look at this as a reminder of just how much my life has changed, and then here begins the rather long and over emotional story of the weekend of my dreams...

Friday was A's dad’s 60th birthday so we had decided all along to focus on him that day. It was actually a really good thing as it stopped me from doing last minute panicky bits – I disappeared in the afternoon for a doze followed by a gorgeous relaxing manicure but was back in the evening to go to a restaurant with A's family to celebrate.

I left early (A saying gleefully “see you soon nearly wife!!) and my dad drove me to my grandparents house where I had decided to stay as they are always very calm and there’s loads of room there so we could turn it into a hair and make up studio the following day. I decided to head straight to bed, my grandma bringing me a hot chocolate, and fairly shortly after lying down I was sound asleep.

I woke suddenly at 6.30 the next morning but managed to get back to sleep till 7.30. I then lay in bed quietly for a good half hour, thinking about all sorts really with the occasional “I’m getting married today!” thought popping into my head. My grandma made me a huge bowl of porridge (which she is famous for) and I sat calmly drinking my tea. Their neighbours popped round to see me with crazymadbedhair sitting in my dressing gown saying “yep all going well all on schedule”.

Shortly after 10am my mother and 2 sisters arrived and as I predicted the serene calm turned into an over excited manic house full of women. My poor lovely grandpa quickly learned wherever he was he was in the way so quietly sat with his paper pretending not to see or hear anything. The girls hair dresser arrived around the same time and curlers were installed making my sisters appear scarily twin like. Lu had made a wedding preparations song list which included some of the cheesiest ‘90s hits ever (Bewitched, remember them?!) and the day really got underway. My mum bought with her the bouquets which I had been worrying about (I don’t really like not having a run through!) but I needn’t have been worried – they were absolutely gorgeous. I then looped into mine my gran’s ring for my “something old” and pinned in the donor family network pin in memory of the special person who had allowed me to be here today.

My hairdresser arrived at 11 which was a blessing as it forced me to sit still for 2 hours! She was amazing and so meticulous. Whilst she was working, Lu did my make up and I commented positively on it every now and then despite having no glasses on so not actually being able to see a thing! When I did finally get to peer close up into the mirror though it really did look gorgeous and I was thrilled with the result. My mummy would intermittently race into the room with a plate of food chirping merrily and updating me on proceedings. A's sister arrived (third bridesmaid) to have her hair done too and mine was finally finished so I went into the lounge with tiara and veil firmly pinned still in dressing gown to be met with a round of applause.

I sat and drank some tea and nibbled some sandwiches before my mother informed me it was time to put the dress on. The photographer arrived and we had the traditional “lacing the dress” shots but he was very good at being seemingly not present and just snapping events as they occurred. Bridesmaids also now in their stunning floor length wine red dresses joined me and we went out onto the patio for more photos.

My daddy and granddad (who is 91 and my hero) then arrived and it was hugs and kisses all round. We walked out the front to be greeted by various neighbours, including lots of very over excited young girls pointing and shouting “there she is!!” which made me feel like a celebrity! We were standing waiting for my uncle to arrive (he was to drive me there in his car) when suddenly my sister pointed exclaiming “look!” and this stunning £160 000 Bentley pulled up on the drive (in the correct wine red colour) and my uncle who had hired it without me knowing stepped out proudly wearing a proper drivers hat. I was speechless, the car was just gorgeous and such a surprise!

We got in and my daddy held my hand tightly all the way there. By this time the butterflies were really beginning to hit and the enormity of the day was sinking in. A year ago I had been lying in a bed with an oxygen mask, unable to speak full sentences with H2B doing pretty much everything for me, and now I was about to walk down the aisle. Last year I had been in talks with the doctors about how to deal with the very last stages and how I would be made “comfortable” at the end, and now I was in this gorgeous dress, heading to say “I do” to the man of my dreams. Suddenly I knew all my confident statements of “I won’t cry I’ll be fine” were going to be complete lies.

We pulled up to people waving and cheering (who had come specially to watch me arrive) and my daddy helped me out of the car, bridesmaids following from the car behind shortly after. After a few photos I walked in to speak to the registrar and confirm all the official bits, then it was time to take my daddy’s arm and walk towards the main Barn, where I would say my vows and begin the day I had always dreamed of.

To be continued – this is far too long and I don’t know about you lot but I need a coffee!

Friday, November 02, 2007



Monday, October 29, 2007

I had my final dress trial yesterday.

I donned the entire outfit, and walked through to the lounge. Tears escaped almost immediately; this does not bode well for not crying on the day.

Am rather pleased with the final look. I would post a picture...but I'm not going to.

Counting down the days, and soon the hours! Have a rather strong suspicion that I will soon be so over excited that my mother will have to resort to tactics she used to employ when I was five and would get too over excited about a birthday party/christmas, develop flushed cheeks and a temperature, and promptly be sent to bed to have a sleep till I had calmed down a bit.

An awful lot of smiling going on in this house. I can't wait for the day itself, I just don't want this all to be over.

Saturday, October 27, 2007

OK I am a bit sad and google myself from time to time (come on admit it you've done it too!)

Imagine my shock when I came across this (scroll down and read from the bottom upwards).

Now luckily I *touchwood* am doing rather well this year so was able to smile to myself that if the guy did put me in his "bingo" he will have lost.

I can't decide if I am mildly amused at the sheer audacity of this or if I think it's really quite disturbing. I am leaning towards the latter...

A little drama there to break up the wedding fever ;)

Thursday, October 25, 2007

And the countdown continues....

And the closer I get the faster it seems to go! I am just completely over excited now, especially as we are now in single digits.

Every little element of the wedding reminds me how incredibly lucky I am to be doing all this. It's just a lifetime away from where I was last year.

I am pretty tired, completely rushed off my feet, still have a thousand things to do, and am absolutely loving it. My grin is beginning to hurt my face.

Very very smiley. Very very lucky. Very very over excited and can now bounce around to demonstrate such feelings as opposed to wiggling in my chair which used to be my method.

In other I don't think there is any. Wedding appears to have consumed my life. I am assuming that is relatively normal at this stage. Off to grin some more now.

Tuesday, October 23, 2007

(I am aware I look naked in this photo - I promise you I was fully clothed)

Saturday night saw the glamorous do that was the Simone Cowland Trust ball, held at the Dorchester Hotel in London to raise money for Foulis ward, the ward which I have spent months (actually years if you add it all up) living on.

Emma and I were to host; a privilege which I don’t think either of us could quite believe even once we got there to rehearse! A and I arrived at 2.30 to find people rushing around setting up; a very efficient team with just so much to do. We headed up to our room to find a bed that could have quite comfortably slept 8 people with each person having room to roll over without thwacking their neighbour. The hotel itself is just beautiful; so much attention to detail, and everywhere you turn there is a member of staff there ready and willing to assist you.

After running through our lines we went down for a sound check, (cue me desperately refraining from breaking into song in the mic) and then just as we were finishing the run through we were informed that our stylists had arrived. Both of our bedrooms were turned into our own make up and hair studios and our two lovely stylists set to work making us look presentable and fit for the stage.

With minutes to go we swept downstairs to the champagne reception, where I found several members of the Foulis ward team who had cared for me for so long. It must have been weird for them, they have seen me so very ill, on the brink of death, and now I was bouncing around from person to person able to talk in full sentences and they were back to not being able to get a word in edgeways.

The evening itself was amazing. The odd hairy moment (my favourite classic being me hopping up on the stage too early and left standing grinning like a loner waiting for Emma to join me) but all in all it went very smoothly. The crowd were in an excellent mood, despite the loss of the rugby, and the auction raised a phenomenal amount! A sumptuous four course feast (that’s what they say in OK magazine isn’t it?) was served during which a very moving video was shown explaining just what life is like on Foulis. Finally the announcement was made as to how much had been raised; the aim was £50 000 and by the end of the evening £107 000 had already been raised! The hard work over, we then we all got to dance the night away in celebration of our achievements. I collapsed in bed about midnight after a truly wonderful evening; it didn’t seem like work at all, more like a treat, and to think we help raised all that money for people on Foulis…hopefully it will pay for a complimentary therapist; when I was in for months with my chest drain my mum used to come with creams to massage my feet and legs and it really helped not only my physical state, but my mental wellbeing as well. As I said in my quote in the programme, whilst the Doctors’ work hard to improve the quantity of life the Simone Cowland Trust insures quality of life for inpatients is as high as possible. And you cannot put a price on that.

For more information or to find out how you can donate go to

Friday, October 19, 2007

I was on GMTV this morning. Apologies for the complete lack of notice, please don’t pelt me with grapes, but I was only told last night and consequently got myself to bed sharpish as I had a 5am pickup this morning to get there. All I can say is thank god for the two lovely men in hair and make-up who manage to make me look fairly respectable even at that time in the morning.

When I took my mother with me she got completely over excited at being made up; so much so that her make up guy took extra care and time to pamper her to the maximum extent. She was still bouncing around about it all when we got home and insisted my sister take photos of her all made up, conveniently forgetting that they have to do you somewhat more orange for the cameras than is needed in natural light…

Anyway back to this morning, it all went fine. It was a very short piece, just recapping on the whole opt-out debate. Penny Smith warned me we were short of time so advised me to keep my answers as concise as possible; a fairly tall order for me and my waffley ways.

I explained that I am all for the suggestion being raised again, and that something must be done, but if they are to think about bringing in new legislation they must also consider infrastructure to assure that such new implemented measures can be followed through. I also spoke about donor coordinators, as in my opinion (and of course my personal experience) they are a vial element of the system. Donor’s and donor families are giving the greatest gift of all, so it is only right that they are properly looked after and cared for. Education is just as vital as a change in system, as if people are more likely to support such changes if they are fully informed that they still have as much choice as they did before.

Hopefully I just about managed to convey those feelings or whereabouts, Feeling rather tired now but reluctant to lie down as the nice man straightened my hair and I like it all swooshy like this. It is the Simone Cowland Trust ball tomorrow at the Dorchester; getting rather nervous now, but hopefully it will be a night to remember. They are aiming to raise £50 000 for Foulis ward, and I can’t wait to join them in helping to do so. Best of luck to all the organisers and hopefully I will report back having not fallen off the stage/off my heels/spilled dinner down self/anything else disgraceful. Wish me luck!

Sunday, October 14, 2007

How fast time flies...

So this weekend was my hen weekend, which had crept up on me incredibly quickly. Spearheaded by Lucy, my girlies had been plotting for some time and all I knew was that I was to keep this weekend free.

On Friday night I arrived at my sisters to get ready, clutching a bag overflowing with a variety of outfits (well if I didn’t know where we were going I should buy an outfit for every occasion – it seemed logical.) As we were getting ready Lu and Abby handed me gifts every now and then; a pink and sparkly disposable camera (HA no digital evidence of shame I thought, how naïve…) a flashing Bride-to-be badge, a tiara and veil and a wand with Bride in pink sparkly lettering. For the first time since all the planning and preparation began I suddenly actually felt like a real person about to get married, not just like I am planning for an event for either way into the future or for someone else.

We headed to a nearby town to meet some girls for drinks, and the plan was to continue on to a nightclub to dance the night away. Hen nights are supposed to be kept between the ladies so no I shall not be sharing all the details. I had an awesome evening but without going into too much detail I learned two very valuable lessons; 1) since my transplant I have not learned how to take my drink. 2) Shots still make me rather ill and 3) The toilets are not in fact located in the pub kitchen.

Saturday morning I woke up in a surprisingly bouncy mood, and we headed down for breakfast and cups of tea, at which point Lu let slip again that we were heading for a salsa lesson that night! We lounged around in our PJs, before I headed home for a quick shower to feel somewhat more human. On arriving back at my parents’ our “plastic cousin” (so called because she’s practically a cousin; we grew up together) arrived and we all sat down to watch some rather embarrassing videos of us cavorting around aged five in big frilly dresses (hers had more pink bows on than mine, I remember being very jealous). We started getting ready and set off on the train up to London (veil firmly on head again).

Our instructor was great fun, and we took it in turns spinning/gliding/stumbling round the room with him. After a fairly exhausting lesson we sat down for much needed tapas and more jugs of sangria and pina coladas (most of my drinks sans alcohol feeling still a tad queasy from the night before). At this point I shall go a little fuzzy on the details again suffice to say several dares including dancing on the bar and serenading some poor bewildered soul on my knees were carried out throughout the rest of the evening. We continued chatting and dancing till it was time to get the train home, and talked loudly all the way back.

This morning my father excelled himself when he cooked a spectacular breakfast for 15 hungry and somewhat hung-over women, who all wedged into our dining room and munched away, silent for the first time all weekend. More embarrassing photos and videos were produced (thanks girls) and tea and pain au chocolat with lots of reminiscing of school days finished the weekend off. I am now back home pretty tired but with a huge grin on my face; a spectacular weekend thanks to the most amazing girls. I dread to think of the various photos that are going to appear and think I may have to run away and change my name if my girls aren’t kind to me and delete the most dreadful ones. Most of their parting shots were “see you at the wedding!” which was a tad scary; really not long to go now...

Wednesday, October 10, 2007

Today one of the home care nurses from the Brompton came round to pick up bits and pieces of equipment I was still hogging. It was only when I came to get a bag together that I realised I actually had a fair bit of stuff lying around. Abby and I put everything together, and it was just so weird sorting through it all. Oxygen masks, (one used which amusingly had the elastic knotted round the edge as I had clearly broken it when I got it out the packet) lengths of tubing, nebuliser mouthpieces, a machine which created heated steam for me to inhale, humidifying bottles, hundreds of pairs of nasal specs unopened (was clearly stocking up for nuclear war or similar) bags and bags of stuff.

Obviously anything opened or touched went straight in the bin but it was good to be able to return the machines to the hospital. It felt very very strange going through it all; I lifted one of the masks, pulling the elastic back as I would have done to put it on, it feels quite alien now whereas before it was part of normal daily routine. My haphazard self-assembled lengths of tubing (where I had stuck various lengths wedged in other bits to create the exact amount I wanted) were all wound up and put in the bin bag.

Whenever I have done one of these big moving on moments, the huge melange of emotions is quite bizarre. Within the relief, joy, and excitement of disposing of these now no longer needed items comes a very faint touch of reminiscence and almost fondness. Obviously not for the situation I was in, but I think because it was such a big part of my life for so long.

It was lovely to see my nurse again; I haven’t seen her since transplant so we had a lot of catching up to do. Well actually I nattered on at her whilst she managed to get the odd word in edgeways. She said it was strange to come and see me and not get out the blood test kit or the oxygen saturation monitor. I have promised to go up and show them all wedding photos after the big day because as she pointed out, so often the team that care for you for the longest amount of time just get dropped as you don’t physically need them any more, but they are still attached to you, they worked damn hard to keep me alive. And it’s so nice to be discussing dresses and shoes rather than White blood cell counts and sensitivities. Actually thinking about it I think the primary subjects featured rather heavily in hospitalisation conversations anyway...

Tuesday, October 09, 2007

I'm in the Daily Express today.

In other *stop press* news I saw a photo album yesterday that was bright pink, and had a big princess tiara on the front which lit up and sparkled at the touch of a button!! And I refrained from buying it...

Go out and get one if you want to see me trying to look casual whilst standing slightly awkwardly. The paper, not the photo album.

Edit: It's viewable on line, sadly without the posey photo. (Thank you to Jayne for trawling the internet in a desperate attempt not to have to leave the house) Click here.

Sunday, October 07, 2007

We lost another lovely soul last night; Gilly, who had been waiting nearly 2 ½ years for her transplant lost her fight to CF. She was an incredibly caring member of the CF community, always thinking of others, always the first to send someone a card or email when they felt down. We will all miss her very much and my thoughts are with her family and friends. It’s been a bad few months CF and transplant-wise; surely something has to turn around soon, I think the community needs some good news to boost us all.

I am working hard on a few projects behind the scenes, Live Life Then Give Life are currently embarking on a project for next year (watch this space) and I am also working hard on my writing…I don’t really like to say too much when these things are at such early stages but suffice to say it’s hard work and making me really think but I am loving the challenge. Health-wise things have been fabulous too, with me upping my gym regime and even managing to run for a whole 2 minutes on the treadmill! (though I nearly went flying off it as my legs went to jelly by the end). Life is fabulous, the novelty of living good solid real life life (if that makes sense) still has not worn off and I’m hoping it won’t for a long time.

This week has been a good and busy week, quite a lot of wedding preparations (not long to go now…) including a meeting at the venue to go through all the finer details. I’m so glad they do that as I hadn’t even considered half the things she brought up! We are having a pre-wedding shoot today, which I am really looking forward to, but then again I am a natural born poser who came out of the womb grinning at the camera I think. A is somewhat more reserved and less inclined to run in front of cameras, but hopefully we will both have some fun. All the photos we have of us are pretty much identical in stance and position so you never know we might get some slightly different ones today!

A year ago I had just left hospital for the first time in months. I have been rereading October 2006’s entries; it’s so strange to look at my life back then. As I am reading it, it is in a very detached way, as though I am reading about someone else’s life, because the only memory I have of it is psychological, as my body feels so different now I can’t even fathom how it felt unless I concentrate really hard whilst reading the account to put myself back in that place. I try to do that every now and then, I hope it will keep me grateful for the situation I now have. I had a bit of a row with a close friend the other week and when we were apologising and making peace afterwards she said “well it’s got to be a good sign, I would never have dared argue with you when you were so ill before!” All the good and all that bad that comes with being “normal” – I’ll take it and relish it and make it remind me how great it is to be alive.

Tuesday, October 02, 2007

Whilst I was washing up the other day (stop gasping with astonishment those related to me, it gets better) A came in and noticed a small puddle of water on the floor. I wasn’t concerned, my somewhat unorthodox washing up style often results in both myself the cupboard door and the floor having smatterings of bubbles and water. After running the water away however there was definitely more of a puddle; I am messy but not that bad.

So today I decided to be grown up and wise. I thought I would leave the washing up in the sink to prevent further flood-age, and call our landlord to sort out a plumber. He gave us the number for an emergency plumber which I thought was a bit much, but it turns out he knows me better than I know myself. Whilst I had done all my sensible stuff, I had casually put the washing machine on thinking I should do something even if I was leaving the dishes in the sink.

Sadly my brain doesn’t quite connect the fact that washing machines need water to run…about 20 minutes later there was a large puddle of water swooshing merrily across the floor. In a panic I phoned the plumbermen again and they reassured me that as it was already an urgent call a plumberman would be with me within 3 hours. An hour later a knock at the door and a knight in blue overalls was there, case in hand.

“Blimey that’s a lot of water, are you sure it’s not a continuous leak?” he asked bemused. Reluctantly I confessed my slightly unintelligent move of running a large water-based appliance and his bemused look dissolved into one of stifled humour.

Half an hour later (with me intermittently hovering around the door and disappearing into the lounge; what are you supposed to do when you have someone doing maintenance?!) it was all fixed; apparently the pipe had come away completely resulting in the entire contents of the cupboard under the sink now resembling a soggy mess. Actually not resembling, actually being. You know what I mean. The kitchen was also still covered in a pool of soapy and now slightly muddy water due to the nice plumberman being a tad reluctant to wade around in just socks.

Luckily I have a very lovely soon-to-be-mother-in-law who came round whilst I was out this afternoon and cleaned the entire kitchen. She is a little shiny star.

This entire incident was still slightly less embarrassing than my dealings with the gasman back when I was on O2 (see this entry for said escapade). I really must try not to destroy the house again for a while.

On a random note my hair, which had been rubbed away creating several large bald patches, is growing back curly. Very bizarre, not quite sure why as my hair is, well, very very straight. The bald bits are hidden but now it’s growing back the curls stick out like naughty petulant children waving out a window. Most displeasing. I do like the way every part of my body seems to act in a similar fashion to my whole entity...

Saturday, September 29, 2007

*Warning this post may well bore any male readers*

I went shopping with some girlies today for wedding make-up. I don’t wear much (not base stuff anyway) so was at a bit of a loss where to start. I sat myself down at a well known brand’s counter and asked for “something that doesn’t really look like anything” (mmm coherent.) Anyway skipping quite a lot of colour matching and testing, I walked away with my first ever foundation. Ever.

Does that make me a real grown-up now?! The woman asked what my usual regime was and I was too embarrassed to say “er nothing skin has been the least of my worries” so I made it up. My friend whispered “why don’t you just say I’ve been ill?” but I suddenly went obscurely shy. Strange for me I know, as usually I will take the opportunity to tell anyone and everyone, but for some reason, wedding related stuff has bought out a new slightly more demure side of me (ha, A will be lucky if that lasts for the wedding itself).

When you are so poorly that sitting up takes incredible effort breathing wise, make-up hair and beauty tend to go a little neglected (except for when rather lovely cheering squad members paint your toenails/do you hair for you). I felt this new step into vanity was yet another indication of my transfer into the norm, I suppose I am still shedding elements of the ill me bit by bit, and I am not sure how long it will continue. I can see it going on a while as there are still lots of firsts to come.

I definitely care more about my image now. Actually I didn’t not care, but it’s just I felt too poorly to really enjoy putting on nice clothes etc. It’s so nice to be browsing the shops, looking for clothes which are pretty rather than what is comfy, what will allow me breathing space even when come evening I feel so out of puff I feel restricted in anything and everything.

That energy I had lost isn’t just useful for investing in sponsored walks and campaigning. It’s in doing all the little things again, those things which aren’t essential but are fun. Even taking a long bath is back into my regime, although I still get out sooner than I need through a subconscious fear of getting exhausted.

Speaking of which I am off to immerse myself in gorgeous hot bubbles...

Tuesday, September 25, 2007

And life goes on...

Thank you for your lovely messages and emails of support, as always you are a rather lovely bunch. When writing our campaign blog on myspace I entitled it “down but not defeated”. Life can be hard, but if I had let that stop me in the past I wouldn’t still be here. Plus it’s always harder for someone else, for example Robyn’s family and closest friends, and they are still going. I continued to feel quite down after writing that blog until Saturday when I sat with tears streaming down my face with A trying to soothe me. I spouted a rather childish “it’s not fair” followed by “I couldn’t save her” both of which were somewhat daft things to say. As always (annoyingly) A was very logical about the whole thing, pointing out gently that it doesn’t matter how hard I campaign, I won’t be able to save everyone.

That’s the key thing really isn’t it? If I want to pursue this as a line of work (and I do, I love helping people and I think I’m quite good at it) then I need to be able to cope and carry on. Also it is extremely important that I take that vital thing that Robyn’s mum said away with me; remember how precious your life is, and use that to ensure I keep a good balance.

On Friday night I went out to celebrate two 25th birthdays. As I was sitting chatting to my friend I realised the last time I had been present at one of her birthday celebrations was her 18th. After that she went to uni, then I went, then I was too ill. Yet now I was able to go along and celebrate with them and eat a rather huge burger from the Gourmet Burger kitchen which I made such a terrible mess of I had to carve up with my knife and fork to salvage it. Saturday night I was out again, this time up in Covent Garden sampling various cocktails.

My daddy and I went shopping late last night (I had to get petrol and milk and it was dark and there were wolves after me etc) and as we walked out of the supermarket having dashed around to get a few bits my dad said “do you ever stand there in the queue at the checkout and want to turn round to the people behind you and say “this time last year this would have been impossible!” it’s funny, I often get that feeling, it’s more whenever I suddenly realise I am doing something for the first time or something that would have taken so much effort and been so draining. I want to turn round and squeal “look at me I did it!!” and shout out with glee (the word glee is not used enough in my opinion).

For me life is good. I am lucky, am here, am alive, am living it. So I am getting off the computer and going out now to enjoy it some more. Have a great day.

Saturday, September 22, 2007

Robyn’s funeral was yesterday. It was a beautiful ceremony, but I was just filled with aching sadness throughout. I was determined to be brave but as soon as the cars pulled up the tears started to flow. I was on my own but a few of her friends were fantastic and looked after me, in spite of their own grief. Her family were indescribably brave, filled with dignity, coming over and saying hello, and even thanked me, when all I felt is that I failed.

I am fully aware that I could never have saved Robyn all on my own, but I think with Live Life Then Give Life’s recent successes (Peter, Lisa, myself) I have been on a bit of an over confident streak, that things have turned around. Losing Robyn was a blow to us all, and watching all her friends yesterday clearly a shock to everyone who knew her.

On a truly personal level (this is my blog so if I can’t state it here where can I) two new things happened today. For the first time I experienced survivors guilt. Watching someone who could have and should have been in my position, been where I am standing now. It coursed through me, stinging from head to toe, why was I still here when Robyn wasn’t? It made me ache and her family’s gentle kindness made it even more so.

The other peculiar thing was that I got to see my “alternate ending”. This is what would have been the end of my story if it wasn’t for that one person making a decision. I couldn’t help but relate things I saw back to myself – the friends, the parents, the long-term boyfriend – and it was strange seeing what could have been.

I came home cross and tired. Cross with myself, cross with life, still tearful at the loss of a life that need never have gone. I ached for her family to get her back, for this to be some sort of Hollywood movie where then they turn back time and show what can happen if you change things, but Robyn is gone, another life lost due to the shortage of organ donors.

As I left, Robyn’s mum hugged me and as she was squeezing me tight whispered “don’t forget how precious your life is.” Which will be the key thing I try to take away from yesterday and I hope blog readers will too.

Tuesday, September 18, 2007

Hydro active 2007.

I woke up bright and early raring to go. Long-suffering A was forced out of bed on his only day off to make me beans on toast (figured I probably needed something a bit more substantial than a cereal bar) and I in the meantime spent an inordinately long time donning my pinkandsparkly fairy costume.

I drove my grandma, (who in a fit of madness had signed up to walk it too) and grandpa up to Hyde Park, and complete with rather large and glaringly pink banner, we walked up the road towards the main gate. As we reached the meeting point, I could already see clusters of pink winged people and other bright yellow ladies (CF Trust T-shirts) I got a round of applause as I arrived and whooped appropriately in return.

After some meet and greeting plus plenty of posing for photos I hollered at the Angels to head towards the starting line as it was by this time 5 minutes to 11. We trouped across the field, me leading the way (ON FOOT still can’t believe it) and squeezed onto the track to join the other 20 000 odd ladies who were eagerly raring to go. Events like this are just such amazing examples of human spirit. People walking for loved ones, for those they have lost, for those that have overcome adversity…I just love the atmosphere.

We were whooping with glee as we set off, helped somewhat by the rather nice group of armysoldiermen who were waving at us from a balcony. I quickly lost interest in carrying the huge banner I had made and my ever faithful Angels took it in turn to carry it (mum swooping in if ever a camera came into view).

It was gloriously sunny with a strong breeze; fantastic for keeping cool, not so fun for those carrying the banner and trying not to take off. First k was fine, and the second, then pain round my ankles began to kick in. I could feel the fluid swishing around (mm) and my ankles tightening as they inflated even more. I was determined to keep up a good pace as after all this is supposed to be a challenge; so many wonderful people had sponsored us I felt I really had to keep going briskly to make it worth their while.

As we approached 4k my legs ankles and feet were really beginning to hurt. To keep myself going I just remembered how last year it had been my entire chest and my lungs aching and burning, and how incredibly lucky was I just to have dodgey fatfeet this year instead of tiny fading breathers. Seeing I was struggling a bit Lucy gave my hand a good squeeze; nothing said but enough done, I knew I would get to the finish.

In the final k we approached a slight incline, various angels getting behind me to give me a bit of a helping hand! Then suddenly I could see the leafy shaded corner and had a flashback to seeing my two grinning physios waving me over to get me out of the chair exactly a year ago.

We turned that final corner and were hit by a wall of cheers; people lining the edges of the course shouting and encouraging everyone on for those final 500 metres. We moved ever closer to the finish and I couldn’t suppress the joy that was bubbling up inside me. With a rather loud whoop I broke into a run hearing “oh god she’s running!” from various shocked Angels and sprinted (well stumbled) towards the finish line.

The feeling of joy was just indescribable; what a rush, what a buzz, I just felt so alive!! People were throwing their arms around me, hugging me, squeezing my shoulders, everyone just so thrilled to be part of an event which was a million miles away from last year.

It wasn’t until we moved towards where the medals were being handed out that the tears came. Never in a million years could I have dreamt how this summer would be. Every day is so amazing, days like this even more so. I love my life so much, am so incredibly lucky, and to be able to share so much joy and celebration with so many people was just fantastic.

My ankles are still a little swollen but I feel absolutely fine. I am still grinning from ear to ear about it all, a huge well done and thank you to all my angels and lets hope the money we have raised for the CF Trust will go to find a cure and prevent children born today going through what I have been through.

Some more piccies of the day:

I may have spotted the camera.

Thank you Angels xx

Sunday, September 16, 2007

Today was the hydro active. It was amazing. Indescribably amazing. A day full of emotion, desire, achievement, happiness, memory, reflection, and celebration. I was going to write a nice long blog about it all but then my mum emailed me this beautiful piece she has just written. I figured I’d let her wiggle into the limelight instead. Will blog more about my feelings on it all tomorrow, and post some pics! But for now, over to my Mummy.

"A week or so ago, I watched a TV news item featuring a couple who had won 8 million pounds on the lottery. As they were interviewed, their faces betrayed a mix of delight, wonder, disbelief and just a tiny bit of fear, perhaps that they would be taken to one side at any moment and told that it had all been a big mistake or dream.
I mirrored that expression on Sunday as watched with the most enormous pride fabulous Emily with her fantastic sisters and my ever youthful 76 year old mum, complete the Hydro Active 5km challenge around Hyde Park which, just a short year ago, seemed one dream away too far.

Last September, after months of hospitalisation due to her death defying round of collapsed lungs, we wheeled her out of the Brompton Hospital for the day and pushed a weary, cold but jubilant Emily in her wheelchair together with canisters of oxygen across the grass to join over 70 friends and all round wonderful souls who had gathered to support her. Their positive energy seemed to transfer as they took it in turns (unless a camera was about when it became my turn) to wheel both the chair and the portable oxygen around the 5km. At the time I looked at that frail body and rejoiced in how well she looked that day, but, looking back, I was just trying to avoid thinking the unthinkable, that our time together was well and truly running out.

12 months later, and I had to nip and weave along the course to keep up with my smiley, rosy faced, beautiful, courageous daughter who has been given a new chance at life life that she has honestly embraced and enjoyed every single day since departing Harefield Hospital in March.

Courage however was definitely the theme of the day: Lovely Maggie whose kind, generous eloquent thoughts leave me in awe who was walking with happy memories of Gaz and amazing Sue from Newcastle who taught me a lesson in courage and depth of character when remembering Chris with such dignity and that is not to mention super mum of 3, Sarah with Wills, running with such positivity and hope. I can not mention all of you but I do want to thank each and every one of you from the bottom of my heart for your smiles and hugs and support for the irreplaceable pink fairy."

Friday, September 14, 2007


Clearly my body has assessed the effort it took to do 500metres last year, decided that 5k as I am now is nowhere near tricky enough, so has decided to inflate my feet to amusing clown-like proportions.

I got home yesterday evening from meeting some friends at the pub and my feet felt a bit strange...when I looked down they were quite distinctly, well, large. I went off to bed hopeful that they would have gone down by this morning but no such luck.

Being the responsible adult that I am I phoned Harefield first thing to explain scientifically that “my feet have gone all puffed!” My lung function has not dropped and I am not breathless which is somewhat reassuring. They asked me to go and see my GP and amazingly within 20 minutes of ringing I was down at the local surgery for an appointment.

My GP is a lovely lady; she had a look, listened to my lungs and heart and prodded my feet for a bit. So now we know that it is fluid, that my heart and lungs sound fine, but that she would like me to now feed back to Harefield and take it from there. Oh and to put my feet up.

At this point I thought it may be wise to just drop into the conversation that I will be walking 5k on Sunday (note, not should, will.) She paled slightly and stated again that I really need to confirm with Harefield that such adventures are ok with chubbytoes.

Rang Harefield again, told the nurse what the GP had said, also dropped in about the whole 5k thing to which she started laughing and said “I knew you had something going on!” and passed me on to a doctor.

I think the doctor was busy as she was rather brisk, merely said to put my feet up and rest. When mentioning that I am going to walk round Hyde Park she said “oh, well 5k is quite a long way. Hmm. Just do what you feel you can do.”

The latter sentence was her biggest mistake. Bring on Sunday. Although at this rate I will have to do it in flip-flops as I cannot currently get any shoes onto my large clown feet...

Thursday, September 13, 2007

If you read this post here you will know who I am talking about. Robyn was a beautiful, petite blonde smiley young lady. Incredibly clever she was working on her Masters whilst battling her CF and waiting for her transplant with a positive and cheerful smile on her face. We were working together on a relationships study for people with CF in the hope that we could produce some sort of help booklet at some point. We chatted via msn and via text, rarely by phone as she didn’t really have enough puff – it’s funny how someone you never see in person can become such a good friend.

When Robyn spoke at National Transplant Week this year you could have heard a pin drop. When she got so breathless someone had to take over, the impact was clear. She volunteered to talk to the media for us to try to get the issue of transplantation an even greater profile. She was on GMTV for Transplants in Mind and was their poster girl for this year’s campaign (click and click).

On Tuesday afternoon Robyn lost her fight to CF. I’m just terribly terribly sad; for her, for her family, for her lovely boyfriend. She waited over two years, she remained positive, but that call never came. For me it’s an even greater reminder of why we continue to campaign and also why I am walking on Sunday in aid of the Cystic Fibrosis Trust. She never let CF dictate her life and will be greatly missed by an awful lot of people. Thinking of her family and friends at this sad time.

Monday, September 10, 2007

I did the Harefield fun run yesterday, although for me it was the fun walk. Actually it was just walk. No it was alright really. Contrary to what my mum or A may tell people I did not whinge all the way round and abuse various members of my family due to being made to complete the course ("just to see that you are ok to do the hydro next week.") I didn't make unreasonable threats on their lives either. Honest.

I do have some rather lovely photos but my camera has misplaced itself (I refuse to take any responsibility for it's naughty wanderings). Peter and his wife and kids were there - it was amazing to see him up and walking! You see a pic of his gorgeous children here.

But the good news is I am so so ready for this won't be very fast but I am confident I will make it. Bring on Sunday! YAY!

Click here to sponsor me and my Angels!

edit: Camera recovered YAY, was hiding under piano.

Girlies proud with medals.

Me with well deserved lolly (which A labelled "hideous" due to mass of sweetiebobbles)

Next doors cat on my lap in post-race empathetic state.

Thursday, September 06, 2007

Yesterday morning I woke up with a familiar scratchy sore feeling at the back of my nose and throat. In the groggy early morning hours (genuinely early, not nearly-midday-early). First thought was a mild despair of “oh no here we go straight onto my lungs and in for IVs” until I remembered that these lungs aren’t quite as naughty as their predecessors, so this may well not be the case.

Then my brain decided to go into overdrive on the imagination front. “It’s my first cold since Transplant. I am immunosupressed. OhmyGOD this cold virus is going to invade my body and take over everything”. Nice rational stuff like that.

I took my temperature every few hours yesterday and did my lung function twice. No change. Same sort of regime this morning but despite trying not to be too neurotic I finally decided to ring Harefield “just in case”.

Me: “Hi can I speak to one of the nurses please?
V Lovely Nurse: “Yes how can I help?”
Me: “Erm, I have a bit of a head cold”
VLN: (probably wondering what this has to do with hearts and lungs) OK...”
Me: “Erm, well it’s my first cold post transplant, and, er I was just wondering if I needed to do...anything...” (trail off feeling a little thick)
VLN: “OK well have you checked your temperature and lung function?”
Me: (proudly) “Yes several times and both are fine.”
VLN: (reassuringly) Excellent well you are doing all the right things, just keep an eye on it and let us know if anything changes.”

So you see having numerous collapsed lungs, pneumonia, septicaemia, low enough oxygen saturations to kill, well, anyone really, and a rather major operation does not necessarily make one any less of a worrier about the small things. I shall try and behave less like a man about this now and remember I am still allowed to feel a bit run-down, just like anyone else...

Sunday, September 02, 2007

I did another talk on Thursday night, at a local Rotary club. I was there on recommendation from someone who had heard me talk before. They were a lovely group, and welcomed me warmly when I arrived. Some additional people had come along, after hearing I was speaking, which surprised me until I learned that they had a child with CF. I was a bit worried then, my talks are hard-hitting and made to make people remember just how devastating CF can be, because without this awareness of the more severe end, how can anyone expect people to decide to work hard and raise money and awareness?

Anyway I approached the parents prior to starting, reminded them that I was about to go into depth about “my end” of CF. They were lovely, said they fully understood, and the mother simply said she was honoured to meet me having watched me on TV many a time (which a)made me all embarrassed and b) was a reassurance as she clearly knew my rough history).

The talk itself went fine, I had one eye on the clock as otherwise I am absolutely awful and just keep talking till someone shuts me up. Afterwards I went straight to the mum to check she was ok and she just burst into tears hugging me. I felt rather bad then, although she was protesting that she was just moved because she said it was powerful. It’s such a terribly hard balance, I know she was perfectly aware what angle I was coming from but it still feels a bit like rubbing salt in a wound (wrong metaphor there but I can’t think of what I want to say). I gave her my card and told her to contact me if she wants to chat about anything; I hope she will. After the talk everyone who hadn’t raised there hand when I asked who was already on the register took a leaflet, some took several for family members as well. I have two more talks in the pipeline and another stemming from this too; I do enjoy doing it and I meet such lovely people.

I walked over to my parents this afternoon; apparently it is just over a mile which is about 1/3 of the distance I need to do. It felt fine, I jogged twice (for about 40 seconds a time) and I just had jelly legs by the time I got there, lungs felt amazing though. Ooh and most excitingly for me, I have a new toy. Which also now provides the capability for people to contact me direct without me giving out an email address. Woohoo! Click here to see what my rather clever friend has made me! (still under construction)