Sunday, September 03, 2006

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

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

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

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

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

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

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

I was trying hard to purse my lips as talk, but you try pursing your lips when your heart is dancing with joy so much you cannot help but break into a smile. I kept at a steady pace, I hit 5 about once breathlessness-wise but slowed a little and moved back down to a comfortable 4, and most importantly kept on moving. There were a lot of people shouting for us by this point, and whilst it was a bit of a blur I could see face after face of people who I knew and loved. Suddenly I could hear my voice on the tannoy, and the announcer was telling the crowds who I was (apparently I am waiting for a ‘double transplant’, not satisfied with one clearly) and why I was doing this. People were cheering and shouting, my Angels were all around and I was enjoying every single step.
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As I approached the line my mind went sharply back suddenly to a very specific memory; I was in high dependency, so it must have been just over 4 weeks ago, and I had just got out of bed to sit on my chair for breakfast, and I couldn’t catch my breath. I was so breathless the nurse was sitting next to me talking to me trying to bring my heart rate down, and I remember having tears in my eyes, watching the chest drain bubble viciously as the air leaked from my colander-like lung, thinking if I can’t even leave the bed now I would never make it to Hyde park. There is nothing like meeting a target to mend your spirit and booster your confidence and I focused on the white line on the floor getting nearer and nearer. Having trained hoping to do 400 metres, approximately 530 metres after leaving the wheelchair I stepped over the white line. As I did so a cheer went up and I couldn’t help the tears escaping. I had done it. I hadn’t died from that lung collapse, I didn’t still have a chest drain in, I wasn’t stuck in hospital, I am alive, and I was outside, and I was stepping over a finish line of a sponsored walk. As I stood their getting my breath back, I noticed a CF Trust balloon go up in the air. It felt suitably fitting, because as well as doing this challenge for myself, and for people with CF, I was doing this for those we have lost to CF; for Gaz, for Chloe, for Kirsty, Amanda, Stacey, Sofia, and so many more.

We head back to the CF Trust stand to sit and chill with food and drink, and also give people a chance to mingle a bit and me a chance to grab and thank as many people as I could for their incredible contribution and support, how many lucky girls out there can claim they have 70 Angels helping them complete a challenge?! The adrenalin kept me going and my lungs decided I deserved a bit of mingling time too, so I was able to chatter away quite merrily and had a wonderful afternoon. It is only once I got back to the hospital and lay on the bed that I felt absolutely exhausted, but that is perfect and just how it should be, I now have my mask on and can lie here and relax, having had one of the most memorable and enjoyable days of my life.
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Oh crumbs, this entry is so long I am not sure that blogger will actually let me publish it, it may spit it out in contempt. I will post some photos on here as soon as I can; (current ones stolen from other people) a big thank you to each and every person who has supported me along the way, both from afar or here today in person.


Anonymous said...

Double WDY!! - for the Hydro active and the marathon blog!

I'm glad you had a great day. I saw Sarah's pictures and you are a vision of pinkness :D

Been thinking of you all day and am very happy that all has gone well.

Best always,

~ James

Anonymous said...

Congratulations and a big YAY!! Sorry I didn't get a chance to come over and say well done properly, but I really am so pleased that today went so well for you and all your other Angels.

Take care,

Katie x

diddyangel said...

wow you know how to bring a tear to a girls eye!!!
Congratulations lovely xxxxx

Anonymous said...

Well done EMY T!!!!!!!!!!!!!!!!

had a brilliant day and was so proud to watch my lovely big sis cross the finish line!! :D

Lots of love,

Music_Mad_Nic said...

Hey congratulations and a huge well done to you and all your angels for compleating the sponsored walk!
well done to your lungs for thinking nice inflatey thought and behaving themselves!
once again WELL DONE!


Anonymous said...

Absolutely well done...*tears*

You looked fantastic today and I have told everyone about you as they all wanted to know where I'd dashed off to rather abruptly when i spied that you had returned!

Congratulations and a heartfelt thank you to you and everyone else today.

Love, Carolyn xxx

lil fairy said...

MUCHLY YAYNESS! miss emily your rock pink fluffy socks! I'm glad you had a wonderful day and that your lil lungs behaved themselves marvolously well.
Lots of love and cuddles

Anonymous said...

Wish I could have been there to see your smilier than smiley face :-)
What you achieved today was just amazing - well done, so delighted you had a wonderful day.
Audrey xx

Emmie said...

I have tears in my eyes hunni reading that, just like when I saw you coming down that home straight! I reckon you had more attention and cheering than Paula Radcliffe as you crossed that finishing line, although you didn't make any impromtu roadside stops which was a bonus ;o)One of the most memorable days of my life and I wouldn't have missed it for anything. YOU WERE AMAZING!!! xxxxxxxxxxxxxx

misdee said...

Fantastic reading. well done oh pink and smiley one.




Nicola said...

Emily,I really can't say much more than-You are a star and I am so proud of you!!!

Nic x.

Unknown said...

Well done Emily I know you could do it. glad you had a wonderful day. And you looked so pretty in that outfit.

Anonymous said...

YAY!!! well done! But i'm sure I'm not the only one who'd like to see more than two pictures from the day.


Anonymous said...

Ooh, I left you a comment on the other blog, but that one didn't have photos - you looked fabulous and it was good to see you so smiley all day! So glad to have been there xxx

Anonymous said...

Well done Emily, I am truly amazed at your courage and strength. I'm not sure I could have done that whilst on the transplant list! Take it easy now please, plenty of rest and spoiling for you.

Lots of love

Pauline :)

Anonymous said...

Fantastic post.

Sorry we couldn't be there, but am so, so glad your day was this marvellous. x

Anonymous said...

Wow! You are such a star, and looked every bit the glamorous princess to prove it!

Brought a tear to my eye reading that.


Em. xxx

Anonymous said...

This is the perfect thing to have read on a bleary pre-autumnal Monday morning

thanks Emily for keeping on inspiring me in every thing you do


Freya said...

You deffinitely had more attention than anyone running yesterday- and no less than you deserved! You looked amazing; and created the desired effect of everyone cheering, crying or being absoultely speechless.

Who knows what next year holds?


Anonymous said...

I am sitting here bawling my eyes out after reading that. You are an inspiration, I am so glad you walked so far - and most importantly crossed that line on your feet.

It was a pleasure to meet you briefly before the race.

Best wishes for the future.

Anonymous said...

The only word that can describe u is ANGEL, u are an absoulte angel & star. So proud of u. Also had tears in my eyes seeing u achieve ur goal and walk over that finishin line, so glad i was there to share it with u. U are even more great in real life. Keep going strong hun ur the best x x

Anonymous said...

Thanks for the link to your blog. Until today I was a blog-virgin, but this is now my new addiction, which should save me some money on i-tunes!! I'd heard from Julia and Nicky that you'd had a fantastic day, but it's great to read your version and see the beautiful pics.Well done, you!

Love Sue G