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.

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 ;)

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.

(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

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!

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...

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...

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.

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.

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...

*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...

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.

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.

www.uktransplant.org.uk/register www.livelifethengivelife.co.uk

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.

www.justgiving.com/emilysangels2007

Some more piccies of the day:


I may have spotted the camera.


Thank you Angels xx

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."

www.justgiving.com/emilysangels2007

Hmm.

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...

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.

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 Hydro....it won't be very fast but I am confident I will make it. Bring on Sunday! YAY!

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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.

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...

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)