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