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!

Click here to sponsor me and my Angels!

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)

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.

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.

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

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

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

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

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 (www.justgiving.com/emilysangels2007) 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.

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.

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...

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 pwcf.net 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

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...

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.

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.

I went to a wedding at the weekend. Very interesting experience as the last wedding I went to I was (quite literally I suppose) on death’s door and so to have a comparison like that is cause for great contemplation.

This year I got up, got ready, tried to curl my hair, phoned Abby with a rushed “icantgetmyhairtogonicecomeroundnowplease” instruction. After excessive curling, I finished getting ready, jumped in the car with A, and off we set. Last year, I awoke on the High Dependency unit, my team came round and gave me a thorough examination to ensure I was stable enough to leave the hospital grounds. I had two Xrays, one first thing and one just before I went. My mum and Lucy came to get me ready as I didn’t have the puff to put my own clothes on. Then I was gently helped into my wheelchair with high flow oxygen blowing through a mask, I was carefully loaded into the car with blankets and pillows cushioning my rather skinny body.

This year we walked up the little pathway and sat in the church awaiting the arrival of the Bride. We chatted quietly amongst ourselves, admired the décor and stood nicely with everyone else as the deep organ chord announced the arrival of the bride. Last year, 4 ushers lifted my wheelchair (mind you that was not an unpleasant experience) and I was carefully maneuvered into place at the back of the church so I could get out easily if there was any problems, and I sat with A, who stroked my back trying to ease its ache, trying not to panic from the difficulty to get air into my lungs.

Both weddings were beautiful, but this year I was able to enjoy it more, able to participate fully, to dance and join in the celebrations. And it is all thanks to the decision of a family I do not know and a stranger I will never meet. It was so lovely to see all the festivities and goings on as well and know that this is actually going to happen for me too, going to be something I experience, and I suspect something I will never forget. Said wedding was also the first ever time I have been able to dance to every song A’s band played. Ever ever ever.

It’s so strange that nearly 7 months on and I am still experiencing so many firsts. Each one is magical and makes me grin from ear to ear. My dancing at the weekend was again not elegant or refined, in fact a great deal of hopping, jumping and spinning was involved as I am still relishing in the fact I can do all three. I am planning to have a quiet week; still not quite able to gage my own energy levels and managing to wipe self out a bit by getting too over excited. Mind you some things never change...

Doing some PR work at the moment so will write more later/tomorrow but wanted to draw your attention to this young lady here who is running the 10k in aid of CF having read this blog. Thought some of you might like to wish her well on her page, as it's a very sweet thing to do!

Why you should sponsor Emily's Angels...

Feeling much better mentally, thank you for all your kind words, messages and emails.

Having a slightly freaked out moment here, as I was browsing back through my blog and I realised it is exactly a year ago today that my lung collapsed. That was jolt enough but then even more freakily, the friend who was round at my mum's house this time last year (who we don't see very often) is round again, exactly a year later. This coincidence was enough to panic me a little into a rather stupid "it's a sign!" moment but I am getting over that fast. Still thought I would blog about it instead, it helps my brain clarify things (I imagine the inside of my head to resemble a tangle of pink ribbons, I don't think I am far wrong).

It's just all really quite similar, I went round, had lunch with my mum and her friend, came back here...exactly like a year ago. Mind you I did not go out salsa dancing which I did last year the night before, complete with cylinder and inappropriate shoes.

Last year was just the most frightening time of my life. Actually post transplant was pretty frightening, but at least post transplant, whenever I was concious, people were all telling me how well I was doing (even if I didn't believe them) whereas last year when my lung collapsed I could see on people's faces that I was a)not doing well and b)scaring the living daylights out of them. Over those few days where my lung was constantly collapsing, I could just see my life ebbing away in front of my eyes, and see the helplessness in everyone else as they watched on in sadness.

Here is an extract from some writing I have been doing, about last year:

They fought hard to get another drain in but by this time the carbon dioxide levels in my bloodstream were rising dangerously high. There is a machine which can help rebalance the CO2 levels called a bi-pap. This is a non-invasive ventilatory machine which pushes the air in, splinting the airways open and allowing a greater gas exchange to take place. It was quickly realised however that they couldn’t use this on me as my lung was still very much deflated, and clearly full of holes, which would only be made bigger and more irrepairable by using the bi-pap. A surgical option was discussed; previous episodes had resulted in me having a bullectomy and subsequent stapling of the remaining tatters of lung. I was deemed too ill for any such procedure. If they put me on a ventilator, I would probably never come off it I was so weak. My mum was taken aside into a room and the doctor gently explained all of the above and ended by saying essentially there was nothing more they could do. All my readings showed that my body was slowly shutting down. “Emily is strong, but even she is not strong enough to overcome this.”

There was nothing left for my mother to do but make the phone call that she had been dreading all her life, and tell my family to get up to the hospital as soon as possible. I am thankfully very unaware of most of the goings on in the early hours of that morning; it is my poor, ever faithful family who endured the agonies of the unknown. I drifted in and out of consciousness, the high CO2 levels making me sleepy and acting as a kind of anaesthetic. I woke to find my family standing at the foot of my bed. They were all in tears. My father was crying. He doesn’t cry. I requested for them all to leave the room as I needed to know what was going on; I wanted to talk to the physio alone as I didn’t want to scare my family. I asked her if they thought I was going to die. She replied gently “it doesn’t look good.”

Having heard what I needed to hear, I summoned my family back in a few at a time. I realised what everyone was saying, I realised what everyone was thinking, and I trust my team implicitly, but I just couldn’t quite believe that this was it, this was the end. I tried to assess the situation rationally. I decided that if this was what my death was going to feel like, then it wasn’t too bad. I felt fairly comfortable, strangely calm, and my breathing wasn’t too laboured. Apart from not being able to feel my arms and legs anymore, I had very few symptoms, plus I had good painkillers and good support. I knew that end of life wise, things could be a lot worse. My sisters came back into the room, tearstained but smiling at me. I was unsure what to say, I didn’t want to give them false hope, that would be cruel, but at the same time something in me was telling me that I wasn’t quite ready to go. In the end I selected simply told them firmly that I was going to fight and that “it’s not over till it’s over”

I know I have new lungs, I know these aren't collapsey, (real word honest) but I think because after the collapse in 2005 we were so sure that the summer of 2006 was going to be so much better and then it happened again....I don't know. I am just waffling really. Although that is what blogs are for so I won't apologise.

So come on Emily, instead of being scared of the past, let's have a look at what you have now: you have amazing new lungs, your life has been saved once again since that episode, you have a wonderful family, a fiance (still can't get used to saying that!) you can walk, talk, run, breathe...things are really pretty good. I suppose the anniversary of the collapse just serves to remind me how fragile and delicate life is. But instead of that making me nervous, I need to use it to push me forwards, to ensure I keep on embracing every opportunity in front of me now, and to make the most of this wonderful new lease of life.


What a difference a year makes...

Today was....strange. Good but strange. I am fairly sure you have all seen the headlines by now (if not where have you been) but I think this article by the Times talks about it all rather well.

Anyway, Sir Liam Donaldson being due to announce his support of the proposed opt-out system today obviously triggered national debate about organ donation and transplantation.

I received several phone calls yesterday and consequently found myself signed up to two GMTV appearances and a channel 5 piece. A being rather more sensible than me pointed out that since my pickup would be at 5am, I should get an early night. Oh those fatal words; as soon as you know you need to get a decent amount of sleep, the very notion of sleep becomes completely implausible. Midnight came and went. I was lying in bed with my eyes squeezed shut, like a child when they know they will be in trouble if caught awake and surely the tighter one closes their eyes the more realistic the slumber.

Next thing I know, the phone is ringing. It is my mother, panicked after knocking gingerly on the door for 5 minutes with no response. After a few hazy seconds I realise I have slept through my alarm. Three times. With the car due to arrive any minute I jumped out of bed and flung my clothes on, before attempting a calm and sophisticated walk (complete with crazymadbedhair) to the car. Thank god for make up artists is all I can say.

I think today is the first day I have ever felt properly vaguely famous. Or truly infamous anyway, depending on how you look at it. We pulled up and entered the building, along with another guest who arrived at the same time. The lady at reception greeted me with a cry of delight and a hug, exclaiming how well I looked, before escorting us through to the main area and the green room. There the lovely lady who is always busy organizing everything from the green room greeted me with another hug, again telling me that I looked wonderful. As I sat down and she disappeared to do something, my fellow guest asked gingerly “excuse me but I have to ask, who ARE you? Everyone knows you!” stifling a huge grin, I explained that I am not famous in any way shape or form, merely what might be considered a regular on there (mind you remembering me could have something to do with my entourage of tubing cylinders and wheelchairs I used to arrive with). As the presenters wandered past they would come and say hello, ask what I had been up to, and were generally all really friendly. Another guest arrived and smiled at me, so I smiled back, so she timidly said she had seen me on the telly last week and that I looked really well and she hoped I was feeling good. It was all so surreal, I am under no illusions that it was anything but my high profile...ness over the last week or so but still it was rather fun!

The interviews themselves were some of the more taxing I have ever had to do. This is because I wasn’t talking about me (my favourite subject) well I was but in relation to the opt-out system, which is incredibly complex, which I have a lot of differing thoughts and opinions on, and which is very hard to sum up in a 3 minute interview. The assumption was that I would be 100% behind the idea, but I am a little more cautious than that. So here are my full thoughts, or what I tried to get across.

In principal, the idea of an opt-out system is a logical one. The biggest cause of people not signing onto the register at present is apathy. This is proven as 90% people support organ donation but only 23% are on the organ donor register. This huge discrepancy demonstrates that the current system with the amount of publicity and education presently available is not working. The number of people awaiting for transplant is steadily increasing, as is the number of people dying on the waiting list, so something needs to be done.

I have a few concerns with opt-out. Interestingly, not with the moral ethics of it. This is because what we are talking about is called the soft-option, where relatives would still be consulted as to whether they believe there is any reason that person had wanted to opt out. Also if we were to change system, there would be so much awareness raised through media coverage and publicity campaigns that unless you lived in a remote cave you would not be able to miss the new system coming into place. Think about how much publicity there was for England going smoke free. I feel that people who definitely wanted to opt out would be more covered, as there would be a specific statement saying “no I do not want to donate” rather than at present where you just don’t happen to be on the register, this could be because of preference but it could also be taken as apathy.

I do not however think switching to opt-out would be the be all and end all, the finite solution, You cannot merely change over a system without putting into place all the other changes which would need to come with it. The key for me: education education education. I have always believed that if people do not understand a cause, why on earth would they support it. This was one of the reasons I got into public speaking for the CF Trust, I don’t think you can ask people to give money and not explain just why the money should be given. More awareness needs to be raised about organ donation, but in much more depth and detail. It should be taught in schools, the ideas, the principals, the facts, the choices. Information needs to be more prominent and more freely available. And of course all of this needs….money. Which brings me onto exactly that point; or as Oli so succinctly put it, investment in infrastructure.

I really could go on and on (you can see why I had so much difficulty summing up my opinions in 3 minutes now can’t you!) but I think I will shut up and go to bed instead. I am rather tired after gallivanting round London all day. But what a great day it has been, with most coverage being good (although some absolutely shocking misconceptions revealed both by journalists and audience/participants.) and hopefully if nothing else, today has made people think. I heard the comment more than once that someone dies every day whilst waiting for a transplant. Something has to change, needless deaths, they can be stopped...

I seem to have lost the ability to say no. I figure they must have taken it out by mistake when they removed my old lungs. Actually, thinking about it I never really had that ability, I reckon I was born with some innate fear of missing out or being left out. As a child, my hand always went up first for everything, volunteering left right and centre, not so much because I thought it was good, but because I was over eager and excitable and essentially wanted to be involved in whatever it was.

Anyway. Since my transplant, I seem to have become increasingly worse at saying no. Any invites out that come my way, any offers of trips, anyone who asks to be picked up, you name it, there’s me hopping up and down in the front row begging to be picked. This last week has bordered on ridiculous with me tiring myself out to such extents that I have been getting home, taking my immunosuppressants and diving straight into bed, sleeping soundly till I am out of bed and off and out the next morning. I am in no way complaining, merely relishing in the fact that I actually have to remind myself now to slow down. Although some of you may argue that I was on fast forward even when waiting for transplant, just in my own breathless dog-tied-to-a-pole kind of way.

I didn’t make it to a club on Friday night, I did however go to a pub with a disco which was almost the same thing and had the most fantastic time. I was first on the dance floor, and we left after jumping up and down to “Don’t stop me now” which was an awesome finale. Bouncing around waving my arms in the air (yes I did look about as graceful as that sounds – you can’t dance gracefully when you are so ecstatic about just being on the dance floor tubeless) I was really struck by the difference. I haven’t really danced since my transplant, and the tiredness was just a completely different sensation. Previously it was one of despairing finiteness, one where my whole body ached if I dared attempt half a song and my lungs never regained their puff. Now it was sore feet and sweaty hair, not attractive, but so indescribably good to feel normal exhaustion, one that does not signify your body attempting to shut down.



Today was a family outing (we do indeed still do them despite all “children” now being over 16) and we went to the Globe to see Othello. It was a fantastic production, I recommend it. We were somewhat overconfident on my walking abilities resulting in me having to get a taxi between certain parts (not within the globe that would just be silly) but other than that it was brilliant.

I am expecting next week to be somewhat quieter, although it was on the front page of the Times today about the opt-out system debate. People constantly ask my opinion on this (unsurprisingly) and it is difficult to vocalise succinctly. In essence, it seems like a great idea, but I feel it is not the solution. I feel education is the solution. I mean even if we do switch to opt-out then fine, but surely in order to do so we will have to heighten education and awareness and also improve funding for actual transplantation and donor retrieval therefore there is a lot more to it than to simply switch the system. Still I love the fact it is back in the news, keeping the thought of it in the public eye is the most important factor. Which is clearly why we do silly things like spending a whole Saturday building a giant love heart.

I am feeling a little bit wobbly as we go into this week, as it is a year ago that my lung collapsed and I was left fighting for my life. It was also a year ago then that the team called my family into the relatives’ room and told them that nothing more could be done. Weirdly my other lung collapsed around the same time the previous year. I think that one lung saw all the attention the other lung got and decided to put in a repeat performance. Obviously I know that these are completely different lungs, not full of cysts and holes and things like that which made them so prone to just sitting down obstinately, but it is still a tiny bit nerve-wracking. Although also exciting that this will hopefully be the first summer I get to experience in three years. Apart from squeaking, these little lungs are proving to be incredibly strong and well behaved, and I am hoping that we will have a fairly restful but fun filled summer together, preferably not involving chest drains if at all possible.

**edit** - so far, quiet week not proving to be, er, quiet...so look out for me on GMTV and channel 5 news tomorrow morning!

So National Transplant Week is coming to an end. I am really thrilled with our contribution, we haven’t counted up yet but we know that we have had hits on TV, radio and in newspapers around the country - both local and national - and we have some potential magazine articles too. Every bit helps really doesn’t it. A few links to some of our stories can be found here here here here and here.

Richard and Judy on Monday was great fun. It was lovely seeing Judy again as I haven’t seen her since I was in ICU and unable to speak, sit up, or do anything really. They were really lovely and welcoming of me and mum, and we had a great time. My mother, who had been severely warned against any misbehaviour, was fairly well behaved, only letting the side down a few times. Once was throwing herself rather too enthusiastically at Richard just after she had had her lipstick done by makeup, and the other spilling red wine down herself in a fit of over-excitement in the green room. I will forgive her though as she was very good onscreen and spoke very well. She may be allowed to come again, we shall see. Nick Ferrari was lovely too, and said hi to me the next day on his show. Yay!

On Tuesday, Em and I were featured on the ITV news, Em sadly reduced to nodding capacity (although I feel that that nodding added a great deal to the interview). Oli has also been on TV this week (BBC), as has Robyn (GMTV for Transplants in Mind), and a few of our other friends. Essentially everyone has done really well and I am so proud and grateful of all our volunteers for putting themselves on the line and speaking out about their experiences. I will be contacting UKT next week to find out statistics as to the week and to see just how well everyone has done.

I also did two 6th form assemblies this week. That was an interesting one, as I haven’t really done that age group before. I felt both went well, and loads of them came up afterwards to take leaflets and ask questions, and of course to take sweets (UKT do these little blue and red sweets which are, funnily enough, rather popular). Whenever I do these talks, I always start by asking 2 questions. 1) Who here knows they are on the organ donor register and 2) who here knows at least one member of their family who is on the organ donor register. I would say less than 20% raise their hands, and interestingly it is generally the same group of people that raise there hands to both. That to me demonstrates just how important talking about it as a family is. I am doing more and more talks on the subject and really enjoying it, particularly when it develops into a discussion.

All in all a great week. Loads of people round the country have been working so hard to raise awareness, and humblingly (I may have just made that word up) of course not all of them are directly touched by transplant, they just want to do their bit. Excitingly on a personal note, I am off clubbing tonight, first time with my new lungs. Last time I went I was wearing my oxygen and carting around my big gleaming white cylinder; had a great time, but suspect this time may well be easier and somewhat lower profile...

Question: what happens when you get a group of people together who have been affected by transplantation or organ donation in some way?

Answer: This.


Yesterday at hideous-o-clock in the morning, we headed down to Birmingham to make the world’s biggest loveheart. Actually we are unsure as to whether this is officially the world’s biggest loveheart, but it did weigh in at a massive 70kg so we are fairly positive about this fact.

The day itself was absolutely fantastic. Being quiet and understated as always, we clearly wanted to attract as much attention as possible so decided to invite along a fire engine to grab people’s attention (just in case a metre wide loveheart wasn’t going to do the trick. The lovely guys at Blue Watch from Ladywood Fire Station in Birmingham happily obliged and stayed all day keeping both kids and over excited ladies amused. We also had 2 face painters from Sparkles face painting doing people’s faces for free, which I got completely over excited about and had some sparkly pink hearts adorning my face for the rest of the day. Of course amongst all the fun we had buckets full of information about organ donation and transplant, as all of us who had been touched by the issue and were happy to chat to people about it.

I love what I do so much, I get to meet the most incredible and inspirational people. One of our team members donated a kidney to her brother a couple of months ago, and I learned so much from her story. Another lady sadly lost her brother last summer, and her and her family decided to donate his organs. Listening to the other side of the fence is just so awe-inspiring; she is fantastically brave and wants to help us further in the future. We also had a kidney recipient, a lady awaiting a kidney, myself, and Oli who needs double lungs, as well as a scattering of people who were just kind enough to come along and help us out.

The loveheart itself was highly amusing to create and took a good few hours but it looked so fantastic we were all absolutely thrilled, as well as rather sticky from the icing, and somewhat shattered. As we sat in Starbucks drinking some much needed coffee after the clear-up, I thought about Oli and Robyn, both who I have chatted to this week, and both who are so very ill now. They desperately need this transplant; I can’t see much difference between their status’…statistically only one will get it in time. Discussing this with Emma bought tears to both our eyes – Oli and Robyn are such fantastic people, both deserve this opportunity, and we want them to get it so so much. I know I have said this already but PLEASE if you can do anything at all to help raise awareness this week, please do it. The hard cruel fact is without an increase in transplants soon we are going to lose one or both of these friends.

I have created an email which I am forwarding out to everyone I know, it is rather long and waffley but if you think copying and forwarding it on to your contacts might help, please feel free to do so:

Did you know that this Saturday (7th July) marks the beginning of National Transplant Week, run by the charity Transplants in Mind?

Here at Live Life Then Give Life, we are begging everyone to take the opportunity in the coming week to think and talk about the subject of organ donation. Be brave, broach the subject with friends or family, National Transplant Week is there for a reason, to raise awareness and save lives.


Want to help raise awareness but don't know how to start? Here are some ideas....
• Did you know you can sign up to the organ donor register online?
http://www.uktransplant.org.uk/ukt/how_to_become_a_donor/registration/consent.jsp
Dont forget to tell your next of kin as they may try to override your consent.
• Tell 10. Forward this email on to 10 of your contacts, who knows how many of them might have been meaning to register for years, and this just spurs them on...
• UK Transplant offers a variety of awareness raising materials, absolutely FREE. For more info visit the following link: http://www.uktransplant.org.uk/ukt/campaigns/get_involved/promo_toolkit/promo_catalogue.jsp?id=5
• Ask your workplace if you can leave donorcards (see above kit) in the foyer.
• UK Transplant provides rolls of stickers. Get them to send you some (Free of charge) and every time you post a letter, stick one on...hey presto! A free, mobile, awareness raising advert!
• Pay a visit to your local chemist or GP surgery armed with posters from your free UK Transplant kit and ask them to display some.
• Check out http://www.transplantsinmind.org.uk/3/365/ for more details on National Transplant Week and how you can help.
• Take a look at our website (http://www.livelifethengivelife.co.uk) and copy and paste one of the real life stories into a bulletin to send to all your friends urging them to consider signing the organ donor register.
• And of course, there is always our T-shirts, available at http://www.livelifethengivelife.co.uk/buy.php all proceeds of which go to Transplants in Mind.


My life was saved by a stranger, perhaps someone who took or was inspired by one of these simple steps listed above. By helping us raise awareness, who knows whose life you might save....

Thank you.


I am going to leave you with a nice cheery slideshow of the day in Birmingham. We had such a fantastic time, as someone wise once said “it’s only work if you aren’t enjoying what you do”.

Today was the official launch of National Transplant Week, organised by the charity Transplants in Mind. It was held at the House of Lords and both Emma and myself attended. It was a wonderful afternoon, with some marvelous speakers, one of which was Robyn Tainty. Robyn is currently on the list for a double lung transplant and while she is a feisty little fighter, she is struggling a great deal now and clearly running short of time.

She had to pause to catch her breath and Emma had to take over during the speech. It really hit me hard, I did that same speech last year, that was me, sitting there, gasping for breath, desperate for a new lease of life, and it was very strange and very emotional watching someone else go through what I had done. I had to push back the tears a few times, which surprised me as I consider myself quite hardened to these things by now, but it just goes to show, no-one ever tells it as well as someone who is going through it.



There is hope for Robyn but time is of the essence. It was so hard to watch her do that speech, talking about the fact her chance may never come, watching her mum's face as she stood watching her daughter....I cannot believe that was me up there last year. I am just so incredibly lucky. And all I want is for her and Oli and all my other friends waiting to be as lucky as me.

On Saturday we are trekking up to Birmingham to build the world's biggest loveheart with the words GIVE LIFE emblazoned across it. This may or may not be a good idea, we shall see.




ps - watch Richard and Judy on monday. I have to say that or people lynch me afterwards.

Just a quick update as am reeeally tired, but I am home WOOHOO. A day earlier than I expected as they didn't do a biopsy (yay!)

I went in Monday eve after having a lovely meal out with A, and settled in very quickly (up on F East ward, where I had never been before as it is where the well people go, insert proudface here) and a couple of people came to visit me including one of my fave nurses and one of my transplant coordinators, so we sat and gossiped and giggled for a bit. Slept well, and was 2nd on the list this morning so was wheeled off into theatre waving merrily at anyone who would wave back. Whilst sitting in the anaesthetic room I confidently informed the anaesthetist that he would find it nigh on impossible to get me to sleep - an opinion which was proved somewhat wrong when I was out before the count of 10.

I came round fairly quickly in recovery, felt a tad sick at first but a quick dose of my fave anti-emetic soon sorted that out, and am now just left with a very sore throat and quite a groggy head (amusing seeing as I was asleep and now I just feel tired.) The doctor came round, squeezed my hand and reassured me that everything had gone fine and it all looked really good, then clearly noticed my dazed expression and said he would come back and talk to me later.

So the upshot is is that the bronch went excellently, the lungs look wonderful, there are no signs of rejection, infection, or over excited tissuescaringness. As for the wheeze....bit of a mystery really. Due to not knowing what is causing it we obviously don't know whether it will go away, but I am really not too concerned, all I needed to know is that it wasn't a sign of any greater problem.

Abby hugged me tonight, telling me that she quite enjoys me being her wheezy penguin which I thought was sweet, until she went on to say she will of course have to stick me on a shelf and ignore me as is the custom with wheezy penguins. Cheeky mare...