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 news....no 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 www.simonecowlandtrust.com

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 na├»ve…) 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...