Thursday, August 30, 2007

Harfield trip today. First one for 2 months! It has been so nice and a bit surreal to be away from a hospital for more than a month, so I was almost reluctant to go back. Mind you I think this is a good thing as during my first few visits I would rush to see all the nurses, not only because I wanted to say hi but for a bit of a confidence boost too that the support system was still there, and I don’t seem to need that reassurance any more.

Mum picked me up bright and early and we set off in time for the pre 10am bloods (which measure the level of my immuno-supressant in my bloodstream). After a slight false start with my veins which appear to have gone into even deeper hibernation and have decided they clearly do not need to be used ever again, my favourite phlebotomist struck gold and I was off to visit the various other departments for lung function and X-ray. Whilst sitting in the waiting room suddenly a herd of people came running; the crash team had been assembled and were swiftly moving a patient to a more secluded area. The shock of it made my mum cry; it must just have brought back such frightening memories of the various occasions such a team were called to my side. It turned out to be a false alarm, said patient was fine, as was my mother after a firm squeeze of the hand and a reminder that I am no longer hovering in that area.

Whilst there I popped to the transplant ward to pay a visit to Peter and his wife. I stood in the corridor and waved for safety; he looks incredible – so pink! Even though I had seen it for myself it still made me look twice. I am so used to seeing him so ghostly white wandering up and down the corridors with his huge LVAD machine in tow. I asked him if he had got used to the lack of the noisy machine yet, he said with a smile he can hear the clock in his room ticking for the first time in years. Check up on how he is doing here. He still has a long way to go but so far, oh so very good!

As we whizzed through test after test it was clear things were going well. Sats were 100% my heart rate was 79; so low I actually asked her if she was sure the machine was reading right! We then set off to the local pub for our lunch break; the lovely owners know my family so well there, they would go there to drown their sorrows or to lift a glass to celebrate a step forward, it was nice to actually be in there with my mum. Whilst there we got a call from reception, my transplant surgeon (who every time I ask to see and every time is unavailable as funnily enough he is quite a busy man) had come down to see me. I don’t think I have “jogged” so fast in my whole life let alone post transplant! It was so lovely to talk to him and for him to see my progress since I was discharged.

After sitting around waiting for quite a while (it’s great; the “healthy” ones move to the back of the queue – I was moved to the back of the queue!!) we were called in for the debrief with the consultant. He went through my notes and stats saying “good, good, good, good...” then sat back saying “well I wish all my patients were as easy as this” after which much hilarity ensued as I don’t think any doctor who has treated me has ever thought that ever. First time for everything.

So a glowing report and a rather long break till my next appointment. If I am lucky I will be an honest woman by the time I go back...

NB – Lucky in the health sense, not lucky in the fact that A won’t suddenly see the light and run.

Saturday, August 25, 2007

I need a pinny. You know a really cute little 1940's style apron. Something like this. I want one because I have finally learned how to bake. OK stop laughing, I know I am 23, but my lungs didn't really like the whole mixing and standing by the oven thing, and before they got poorly, I would offer to help my mum and then wander off as something more interesting had come along (v short attention span when I was younger, to be honest not vastly improved now.)

So having discovered the joy of baking I spent all yesterday afternoon baking cakes then all yesterday evening preparing a heap of food for a friends BBQ. I am wondering if this is finally my new found love of cooking that Lucy hoped would show after me watching endless cookery programmes when in Harefield or whether I shall wander off slightly bored within a week or so. Time will tell. And no those who know me cannot start asking for cakes on request yet, I am still learning.

Yesterday I also finished putting together my Harefield album. It was such a huge part of my life that I really want to remember it, have a souvenir of it, but yet be able to put it to one side and move forward. So I made an album. It has some photos (predominantly taken with A’s phone, for example me grinning like a maniac just before I went into theatre) lots of extracts from cards and letters, and the infamous photo of my attempted scrawl of “no one likes a butt-munch” aimed at a member of the medical team that I was clearly irritated at and written whilst still supposedly sedated and on the vent.

Whilst going through the huge bag of letters and cards I still have, I found a post card which a friend sent to me around the time of my discharge. It contained a poem by Maya Angelou which I think is amazing so I will finish with it. Said person also said the poem reminded her of me, which was a huge compliment. Have a great weekend.

Sure I'll sail them.
Show me the boat,
If it'll float,
I'll sail it.

Yes, I'll love them.
If they've got the style,
To make me smile,
I'll love them.

'Course I'll live it.
Let me have breath,
Just to my death,
And I'll live it.

I'm not ashamed to tell it,
I never learned to spell it.
Not failure.

Wednesday, August 22, 2007

Got a text from Gaz’s mum this morning when I was out and about “OMG, it’s here, the hydro pack has arrived...seems v real!” Rushed home and opened the door to promptly trip over my very own Hydro active pack. I took a little more care than last year (where I may or may not have ripped the edge of the number due to over excited opening) And there it was. My running number. Well walking number. Imagine my surprise too when I opened the magazine to find my masked and fairy-dressed self splashed across the CF page. Am v honoured that they chose that pic, it was very strange looking at it thinking that was only a year ago.

It all feels so different from last year, preparation wise I mean, as this time I am actually walking the whole thing. I really want to push to get our sponsorship up now; if anyone is reading this at work, maybe you could send the link ( round and ask everyone to donate a pound or something…every little helps! I have purchased new jogging bottoms in the hope that this somehow makes me go a bit faster and further in my training. Said joggers are also intended on preventing me from going to the gym in my PJ bottoms ever again. What can I say, there’s dedication for you.

Last year in September sometime, I put a stats counter on my blog, just out of pure curiosity to see what kind of readership I was getting (also to see whether it was actually just my grandparents reading this). I haven’t checked it for ages, probably not since my transplant, so got a bit of a shock when I read the current total of visits (not views, individual visits) stands at 113,028. In the last 11 months. That’s quite a lot really. Still quite comprehend that people have come to read about my life that many times, it’s a little overwhelming.

I have another two talks booked, from a lady who heard about me from her friend who attended another talk I did. I really enjoy doing these talks (waffling is after all my speciality) and leave feeling good as I think I have raised just that little bit more awareness and hopefully made my listeners think. Plus I get to talk about me and that can hardly be a bad thing...

Thank you so much to those who replied to my last post; I found the advice and support very helpful, I really do appreciate it.

Monday, August 20, 2007

Yesterday was just brilliant – I got to pretend I was a singer. A is in a band (a damn good one) and they were playing at a festival in London yesterday and required backing singers...cue Emily to start waving her hand in the air and shouting “ooh me!!” I was singing with another girl – a total pro, which was quite intimidating – but she was lovely and we had a really good time. As we were waiting to go onto the stage I was terrified; I have done lots of stuff on stage before but it’s usually acting where you are someone else, or if I am “myself” I am generally talking about me which, let’s face it, even I can’t get wrong. I am not very trusting in my voice (though I was desperate to try out new lungs’ singing capacity) and I had to sing in four different languages (no I don't speak 4 languages but apparently can sing in them, not really a talent, I just copy what I hear) which was an additional challenge!

The first song was a bit of a blur, but after that I was hooked! I loved being up there, loved the atmosphere bouncing off the crowd, the feeling of being on stage again (drama queen element showing through) and when we came of stage bounced up and down squealing. I think I will do it again some time.

I am currently in the process of writing a letter to my donor family. I don’t know when I will send it, might be in a few months, I am finding it very hard to write. I mean how do you summarise the incredible act that they made that day? How do I put into words how grateful I am, how much my life has changed beyond all recognition? Is this the right time to write something like this? Should I wait longer? Will they have already been hoping for recognition? So many questions...I think it will take me some time to write, and will remain strictly private, for their eyes only. I guess all you can do is say what you feel and hope they can gain from it just a fraction of how much they have done for me.

Friday, August 17, 2007

Exciting news first and formost; Peter got his call!! It happened on Tuesday night and the operation went on to the early hours of the morning. His wife's blog is here and is well worth a read, or go there if you want to leave them a supportive message. It's early days yet but so far so good, I am just thrilled for them.

Wednesday marked one year since my false alarm. In the morning, I went out into the garden and sat quietly at the back, just having a moment of thought and reflection for the family - wherever they are - who lost someone that day and who made the decision to donate. OK the op couldn't go ahead, but these people still made that choice, and it definitely renewed my faith that this might actually happen for me and helped keep me fighting. They were marking a very different anniversary that day....I hope it wasn't too difficult for them.

I am getting rather nervous about the hydro active now. I have been training (see blog) but probably not as regularly as I should have (real life keeps getting in the way) and am now a little scared. I mean I have come on leaps and bounds; when I first started I was doing 5 minutes at a time and now am up to 20, but that still isn't enough. I have faith in my amazing Angels to help me, but a big part of it is down to me. Will I be able to do it? The medical team thinks it's a big stretch, 5k is a long way when only back in January you had no muscle mass whatsoever and had to learn to walk again. Not to mention the whole new lungs element.

Anyway, enough fretting. I am going to try my hardest. That's all I can do really. Just under a month to go...

Tuesday, August 14, 2007

Gaz was one of my first close friends with CF. When I say close, I mean he wasn't just an acquaintance where the only similarity we had was our health, he was a friend; someone I would chat to regularly about anything and nothing, would phone when I was sad, would phone when I was happy, we were generally both there for each other. We set up together and working on that with him was so much fun...I have been bad and let it slip a bit, but with some help and support I am getting together new items to keep it updated and fresh. I know Gaz would be severely berating me for not doing this sooner.

Back in the days when cross infection policies were not as strict as they are now, we would keep each other company in hospital, making a stay somewhat more riotous than it probably should have been. Gaz waited for a transplant for 14 months. It never came.

He would have been 25 years old today. His family are gorgeous and I keep in touch with them, so thinking of them especially today. Happy birthday Gazzy, missing you and your silly faces on msn, your advice, your humour, your support and your horrifically contagious giggle that would leave us both in coughing fits. Hope you’re proud of me and you know I regularly wiggle my stripey socked toes in your general direction. xxx

Monday, August 13, 2007

This weekend was yet another landmark; I was whisked off by A for a long weekend in the North of France. This was my first holiday abroad for years, and mine and A’s first (with just the two of us) since 2001! I did quite a bit of driving and drove in France for the first time! Was somewhat nervous and kept asking if I was doing it right, which was probably self-answerable by the fact that I wasn’t passing hundreds of cars coming directly at me or anything like that.

We stayed in a beautiful old farmhouse, and spent the weekend wandering round the small local town, eating, drinking, and eating some more…generally having a really blissful time. A mentioned at one point he imagined trying to do this with Claire, denzel and co in tow; although we did go abroad with Claire when I was just on O2 overnight, it just would have been a logistical nightmare and probably impossible to do so once I was on 24 hour oxygen. We had a wonderful few days and were extremely reluctant to return home again! I still can’t quite comprehend the difference between last summer and this summer, I mean it is actually like I am a different person! Things have just changed beyond all expectation, I have my life back.

Today was back into the swing of things with a bang; our friend Peter’s story hit the Mirror on Thursday, and today channel 5 news picked it up, so I was off to the studios at midday to do a prerecord as the “expert opinion” from LLTGL (I still have to try not to giggle when the word expert is used in conjunction with my name). I only said a sentence or two so not sure if it will be used but either way Peter's story should be on about 5.30 tonight. Peter got a false alarm the day the story appeared in the Mirror and although it sadly didn’t go ahead it was hopefully a boost to him his wife and his gorgeous children that there is still a chance and if someone makes that decision a whole new life is ahead of them...

Wednesday, August 08, 2007

A tiny bit of wedding talk now! (Sorry I know there's a lot of people itching to know all the details but I am keeping it quiet, first time for everything...)

Anyway. Many of you may well remember this post here which was coordinated by two special people, namely Emmie and Rose. Anyway they set up "Emily's fund" to ensure lovely kind gifts and gestures went to a safe place for when I was well enough to spend it. People were amazingly generous and lets just say I had a significant amount of dream-making funds provided.

I kept it all safely stowed away as I wanted to spend it on something really special...and I thought you would like to know that I have now spent that money! I have bought the wedding dress of my dreams.

And no it does not look like this.

So each and every person that contributed, please feel safe in the knowledge that you are helping me achieve a dream which I was beginning to think was not possible, and a bit of you will be there on my special day (er our special day Em, do try to remember to include the groom at points...)

Thank you so much, all of you. For everything over the years. There is no real way to repay you all for your thoughts, wishes, cards and presents except to try and demonstrate just how well I am utilising my new found lease of life, and to remember to savour it as it truly is a gift.

Thursday, August 02, 2007

Yesterday was a gorgeous day. Brilliant blue sky, deep but not too stifling heat, and plenty of bright sunshine. Consequently, my family (all members managing to have the same day off) decided to have a BBQ in this new found emerging summer. Armed with factor 40 (not allowed to sit out in the sun) I set off for my parents’ house to join them in the preparations.

We sat around the garden, chatted, wound my mother up (it’s really too easy and just begs to be done) and caught up on a pretty busy week all round. In a sudden fit of inspiration the other day, my parents decided to purchase a gazebo for the garden (possibly in the hope of persuading the sun to stay out a little more). Eager to try out this new toy, they insisted we each take a leg and try to “pop it open” just as it says on the box. Needless to say it wasn’t quite that simple and Abby and I being the weaklings struggled dutifully with our leg whilst everyone else stood back and admired their handiwork. My dad lit up the BBQ (certain things going in the oven for me as BBQ foods are not recommended post transplant) and five minutes and a billowing grey haze later we were all summoned to move said new gazebo down the garden away from the smoke.

My dad stood up at the beginning of the meal to do a toast; to a summer we have been waiting hoping and wishing for, and to many more family experiences over the coming months. As we were clearing away, I came back out into the garden to see my parents standing there hugging, and overheard my dad saying how this was everything they had dreamed, everything they had been hoping for over the last 2 years. See it’s not only my life that has been changed unimaginably for the better; it’s also deeply affected all of theirs.

I walked down to the post-box a couple of roads away yesterday evening. Everything was bathed in that gorgeous deep gold evening summer light, which seems to highlight the surfaces of everything it touches and makes it shimmer. I wandered down the road, lost in my own thoughts, enjoying the solitude and the independence that I had so desperately craved for the last few years. Everything this summer seems so new and exciting, it’s such a long time since I did any of this, and I am loving every second.