Thursday, December 28, 2006




Wow! Christmas has been and gone for another year and doesn't it disappear quickly compared to all the weeks of build-up?!

We had a lovely Christmas Day (at my parents) and Boxing Day (with Brad's family). I was on IV's this Christmas and was pretty knackered out for most of it, but we managed to adapt the festivities to suit my gnat-sized energy levels and as long as you can adapt things I don't think it really affects the enjoyment of anything. I'm finding these days that even things like sitting up at the table for a long meal is too exhausting, so I had a nap on the sofa after finishing my main course and returned for Xmas pudding (or as Brad described it "that round thing that comes after the turkey"...) Actually I always used to get bored during the "polite after dinner chatting" anyway, so I reckon it works quite well this way! Then I had another rest on the sofa whilst we opened presents, followed by a rest in bed and then Christmas cake woo hoo!


The following day we went up to Brad's family for the traditional "Boxing Day lunch" of cold turkey, gammon, mashed potatoes, pickles, etc followed by trifle. I have finally accepted that I socialise best in a horizontal position ( Oi! You with the mucky mind...you know who you are...) so happily chatted away and opened more presents snuggled under a blanket on the sofa, which worked well because it meant I was able to enjoy more of the day without feeling exhausted.

I got some lovely presents and feel like a very spoilt girly. Pink particularly seemed to dominate a great deal of my presents this year....spot the infouence of a certain Miss Thackray there?! I had pink pyjamas, two pink jumpers, a pink top and some seriously groovy pink stripy socks. One of the jumpers is pink and candy stripes so with my stripy socks I now look like a very happy pink mint humbug!

Today I went to clinic for my "after week 1 of IV's" check-up (must think of a catchier name than that...) and guess what?!! My lung function has reached the dizzy heights of 1.8 litres (48%)!!!! I don't think it has been that level for many years so clearly having become chronically infected with a weird bug is doing wonders for the old lungs WOO HOO!! In fact this time last year it was static at around 39% I think, so I guess that despite the hassle, 14 weeks of IV's this year has done some good YAY!

In my typically odd style, I am actually feeling pretty pants despite this great improvement and am more breathless and generally wiped out these days than I have been in a long while. I do find it frustrating though that no one seems to be able to work out why I am steadily becoming able to do smaller and smaller amounts of anything that vaguely requires any energy, and yet my lung function is doing so well. What's the point of having all that space in my lungs when I have the stamina of a flea? Still, the main thing is that whatever is going on it doesn't appear to be damaging my lungs so thats definitely something to be pleased about and thankful for. And after all, I simply wouldn't be me if anything about me made sense hehe!

After clinic I decided to see what all the fuss was about the sales this year, and we braved Swindon town centre with me safely installed in Fraggle (the wheelchair). I must say I didn't really see that much to get excited about and we seemed to end up coming home with about 15 toilet rolls, 4 kitchen rolls and 3 boxes of tissues all from "99p Land"...how festive! (and no we don't have a paper-product obsession really.....)

I also discovered a new mathematical equation: wheelchair + people madly intent on a post-Xmas shopping bargain = madness and mayhem. Brad doesn't do patience when he is pushing me...after all, he's spent the last few years walking at a snails pace round the shops and having to stop and look interested every 5 seconds to answer questions like "does this go better with that or would you say that needs some shoes like this to work?" so when he can welly it he is going to, crowds of dawdling shoppers or not. This produces a particularly interesting spectacle in shops that insist on ignoring the needs of wheelchair users and pack the aisles full of hanging clothes and debris. Result? Brad's sweeps past leaving a trail of destruction in our path as I desperately apologise to the latest person whose ankles he has broken.

As we crashed our way round the town I considered what a mad idea Xmas shopping sales are anyway. On 24th December people are rushing around buying all sorts of stuff and getting totally stressed out before collapsing in a heap with hundreds of bags and queuing for 2 hours to get out of the car park. Then two days later they all suddenly want to do the exact same thing again, only this time they have to queue for 4 hours, fight their way through rails of mis-sized crap, sustain serious head injurys from flying elbows every 5 seconds and see everything they bought 2 days beforehand at half price.

Now I really must pop into that big Next tomorrow to see if they have those trousers reduced.....

Sunday, December 24, 2006


MERRY CHRISTMAS EVERYONE!!!
Love and Hugs
Emma xxxxx

Sunday, December 17, 2006








Saturday was a lovely sunny day with bright blue skies. I love winter days like that - it doesn't matter that it's cold, it's just nice and bright with none of the grey drizzle that has returned today! Anyway, we decided to take advantage of this and went with Daisy to the little park nearby. Daisy had a great time letting off steam rushing around playing football with Brad. She managed to eventually puncture the football (that's 3 footballs in 3 days!) but not until she had run around for a good 15 minutes with it.

I love this park because it is always deserted and has great play equipment! Why is it that we all think that when you become an adult you shouldn't play anymore???! I love going on the swings and see saw - so does Brad as you can see from the photos!!!

I'd love to build a huge adult-sized fun park with adult-sized swings, slides, bouncy castles, ball ponds, etc. Why is it seen as "childish" to have do things like that? After all it's great exercise too! At least that's my excuse and I'm sticking to it.........

Saturday, December 16, 2006

So, you’ve read the background to where I was going on Thursday (if you haven’t then you missed the last blog entry and you might be a bit lost!) so this is how the day went…

We left home at 2.00pm to leave plenty of extra time for getting to the studios in East London for the programme in the evening. I had arranged to meet Andy (someone I met through a message board who needs a kidney transplant) at the studios at about 5.15pm. The producer had arranged that we could all wait in the warm in a holding room where there would be drinks…sounded rather nice!

Now, Brad has always maintained that he doesn’t need a Sat Nav and that such things are very wimpish because real men can read a map. And anyway, he’s got me in the car to navigate hasn’t he? Haha! He had printed out the AA routefinder instructions and decided that through the centre of London would be better than going miles out of the way round the M25. So at about 3.30pm we start getting into London and I put on my “Personalised Sat Nav” hat and started reading out instructions.

Now I think that if you asked Brad today whether you should ever attempt to get across London anytime near the rush hour, he would laugh at you very loudly (perhaps a little hysterically actually), given what we had to deal with over the next 3 hours (yes, that’s 3 hours to go 8 miles). Let’s just say it was an exceptionally stressful journey. So much for the Congestion Charge making things wonderfully quiet on the roads in London!! We literally crawled the whole 8 miles, watching the clock get nearer and nearer 5.15pm, then nearer and nearer 6pm, then nearer and nearer 6.30pm (when the doors to the studio would shut) and and there was nothing we could do about it.

It didn’t help that the AA Routefinder is obviously written for people who already know where they are going in central London (yeah that’s logical isn’t it?!) as now and again they would forget to point out a turning or waffle something very ambiguous like “continue straight forward past the statue of Eros and then turn right” when there are two right turns to choose from. As a result we ended up getting lost whilst I desperately wrestled with the A-Z of London to try and find where we were (and somehow wherever we were it was always just on the edge of page 12 which then meant hurridly finding page 35 to continue the route aarrgh!!!!) with a very stressed out Brad saying “Quick! Just tell me where to go!!!” It was a real nightmare and Brad got very stroppy at one point (not like him at all and we had a right laugh about it afterwards!) and told me that if I was going to navigate could I at least do it properly? This then reduced me into fits of giggles which was not really the most helpful contribution as he fought his way blindly round Picadilly Circus!

Afterwards Brad said he was going to make a very large pie when he got home….a humble one and that he would eat it whilst reciting the words “I really do need a Sat Nav, they are such great inventions” ......

I was busy texting with Andy at the studio who was telling us not to worry, that the show wasn’t starting until 7pm and we would make it in time just fine. And finally at 6.35pm we arrived at the studios!! They weren’t what I was expecting at all. The studios were set in something that looked like a vast industrial park with security gates at the entrance (had a battle to get let in and had to sign a million forms first). The buildings all looked like vast warehouses, very unimpressive really! When we got out the car a girl with a clipboard and a walkie talkie came over and was obviously waiting for us. Poor Daisy had been in the car since leaving home so we quickly let her out for a wee and felt very bad for having to put her back in the car and rush off!

The girl with the clipboard quickly took us into one of the “warehouses” and it was just that….a big old empty warehouse! It was pretty cold and gloomy in there with a few old plastic chairs in a far corner. I suddenly realised that this was the “holding area” (I had naively imagine it would be like a “Green Room” haha!) and Andy and Sue’s friend were there waiting for us. We hurridly said hello and the girl with the clipboard was clearly in a panic to get us in the studio (judging by the conversations on her walkie talkie) but I was desperate to use the toilet after nearly 5 hours driving so I had to make her sweat a moment or two longer whilst we went). The toilets were through an old door in the corner of the warehouse, which brought us out in another vast, dark and empty warehouse with a tiny temporary toilet portakabin in it (like they have for outdoor events). I was just rushing in the ladies part when a man stopped me and said “Are there any paper towels left in there?” It was Duncan Bannatyne!!!! All suited up and ready to go on stage!!! I was in such a rush I just glanced inside, told him there weren’t and rushed into a toilet. How bizarre a meeting with one of the UK’s richest men and a TV celebrity hehe!

We rushed back to clipboard girl who was telling the walkie talkie man that yes, she was honestly JUST coming!!! We then all headed off across a dark car park to yet another warehouse. This was the one being used as the studio and there was a temporary stage with a small walkway in the middle, five leather seats at one end of it, and a few tiers of plastic chairs to one side. There were cameras and wires trailing around everywhere and most of the plastic chairs were occupied, but four had been set aside for us. Andy and I sat on the two in the front row and Brad and Sue’s friend sat a few rows behind. It was all much more basic and cramped than I had imagined and the chairs could win the award for the most uncomfortable chairs in history! The floor was concrete and the walls were just bare brickwork. Across the wall behind where the leather seats were positioned (for the millionaire panel) there was a cardboard scene of London, lit up at night. It’s amazing that when this programme is shown on the TV it will look like an impressive studio with a packed audience (there were actually only about 50 people there), overlooking the night time skyline of London!

By now my temperature was starting to go up (I’d had my flu jab the day before and was feeling pretty rough) and I was desperate for a drink, but within minutes of sitting down they were beginning and I was busy taking in what was happening. The 5 millionaires filed in - Duncan Bannatyne (from “Dragon’s Den), Jeffrey Archer, Kanya King (founder of the Mobo awards), Jacquline Gold (founder of the Anne Summers chain) and Simon Jordan (chairman of Crystal Palace Football Club) and stood waiting for their entrances onto the stage. Crikey, I’d hate to be that famous…you’d have to look so perfect all the time! The women looked positively plastic, with their hair, makeup and clothes so perfect and stylish! Then they were filmed taking their seats as the music and commentary rolled and a voice said “Please welcome your host tonight – Richard Madely”!!! Right beside me Richard Madely came and walked onto the makeshift stage! “Right” I thought, “I’m cornering him later!” He has been a great supporter of our Live Life Then Give Life Campaign and is a friend of Emily’s too so I decided I definitely had a chance to get to speak to him at some point!

The filming went on for 3 hours!!! One by one each person or group entered to great applause, gave their pitch and were interrogated by the panel. Some of them were clearly never going to get any money. One guy came in dressed as a Viking and said his career was giving talks about being a Viking but that he needed money for a bigger boat?!! He only lasted 5 minutes and the panel told him he was “sinking fast” and to get going! Another time a woman wearing very odd clothing came in with a cushion and a red sparkly high heeled shoe. She proceeded to put the cushion on the stage and pretended to go to sleep. Everyone was looking around thinking “Errrm….” when she started making the noise of a phone ringing, “woke up” and answered the shoe as if it was a phone receiver! She started pretending to have a conversation with someone on the phone who wanted her to ask the millionaires for some money. Then she put the shoe (sorry the phone) down and said that her “friend” had given up work to be an actress and wanted to take theatre into pubs but had no money. All totally bizarre! Her “friend” was obviously her, which caused even more confusion and she was one of those really annoying “panto-esque actresses” by which I mean that she constantly talked in the most over-exagerated and staged manner and was basically totally irritating. Thankfully the panel clearly agreed with me and sent her packing, but not before I had concluded that Emily would love the pair of shoes (sorry the telephone) if only I could locate the other one!

There were some good pitches too. One woman came on and talked about how her friend had died and her other friend had taken on the twin daughters who had been left orphaned, but that with her own 5 children, her 3 bedroomed house was now so cramped that they needed £14,000 to do a loft extension for the twins to sleep in. She was in floods of tears remembering the friend she had recently lost and Jacqueline Gold went and hugged her and held her hand which was quite sweet. Then her friend (who had taken on the kids) came onstage too and talked to the panel, explaining about how her son sleeps in the garage at the moment with no heating in there etc. The kids were all invited onto the stage too and after some discussion the panel said they definitely wanted to give them the money but that they felt £14,000 wasn’t enough and that they would donate £20,000 so they could treat the kids as well! They were all so happy, it was really nice.

By now two hours had gone by and my seat was giving me terrible backache, plus my temperature was going up more so I now sported beetroot red cheeks! I was dying for a drink and during one of the breaks managed to say to one of the runners that I had a medical condition and was getting dehydrated so they gave me a couple of bottles of water – phew!!! During this break Richard Madely was wandering around looking rather bored so I got up and walked towards him. A runner promptly said I couldn’t approach him, so I said could she give him a message that I was Emily Thackray’s friend. By then he had wandered across the stage to stand right in front of me anyway, so she asked him with me standing there. He clearly couldn’t understand what she was trying to tell him so I just piped up saying “I’m Emily Thackray’s best friend and I have Cystic Fibrosis” HAHAHA!!! Kind of a bizarre introduction but I wasn’t going to leave unless I’d said hello to him so I had to make an instant impact! He is the Patron of the CF Trust and a good friend of Emily’s so it was the quickest way to make an impression!

His face lit up and he seemed really genuinely pleased to chat (I think he was bored anyway waiting around!). He was ever so nice, really relaxed and friendly. He asked me all about my CF, how well I kept, how Emily was and we talked lots about her and lots of stuff like transplantation and things. He asked if I wanted to a photo with him….did I ever?!! Brad hastily found the mobile and panicked as he tried to take the picture and took one that was all blurry so had to ask if he could take another, but Richard was quite happy to pose again. Then Richard said “Let’s see the picture” and Brad couldn’t find it on the phone, so he was fumbling around and panicking with Richard Madely leaning over his shoulder telling him how to use his own mobile because he had gone to pieces haha!

Then the show started up again and Richard said goodbye. Mr Viking Man was on next and then in came Sue and her husband!! Their pitch was brilliant and within minutes I realised that the panel were extremely pro what they were doing. They were “interviewed” for about 15 minutes as the panel discussed the book, looked through it, asked about Zoe, what money they had raised so far, etc. I felt really emotional. I just sat there so proud of what Sue and Richard were doing and thinking “this is going to actually save lives, may be even Emily’s or Oli’s or Peter’s”…I was a bit teary at one point. As all this discussion was taking place, Richard Madely came hurrying over to me and whisperingly asked if we would mind him mentioning mine and Andy's situations when he went up on stage? We said that would be fine!

Then Jacqueline Gold said that she had a printing company and they would print 50,000 of the books for free! WOW!!! The panel discussed things further and asked Sue and John more questions and finally agreed that the book would be made a bit smaller/shorter, Jacqueline would print them for free and the rest of the panel would fund the production of 50,000 DVD’s to go with them!!!! It was brilliant!! Sue and Richard were overwhelmed and both in tears as they hugged all the millionaire panellists. It was so touching to see the total support that they gave the whole issue of organ donation and how important they all felt it was.

The Richard Madely came on to congratulate them and ask how they felt. After this he said “Now we actually have two people in our audience who will need transplants. Emma on the left has Cystic Fibrosis and will need a transplant in a few years time and Andy on the right is waiting for a kidney transplant at the moment. There’s a good chance at the moment that they wouldn’t get these operations but let’s hope that with projects like this we can increase those chances”. The cameraman was by now right by me and Andy and had the camera right in my face where it stayed for about 5 minutes! I think they were hoping to film me in tears or something but by then I was just so excited by what Sue and Richard had achieved!!!

I don’t know if we will be shown on the TV or whether that bit will be cut. Certainly they will cut a lot of stuff since they filmed for over 3 hours for one 50 minute programme! By the time it all finished I was totally shattered and could barely stand up! Andy said to me “Quick, go and ask Kanya King if she will put the Live Life Then Give Life web banner on the Mobo Awards website before she leaves the stage”. I said “I can’t do that!!!” and panicked but he said “Course you can…come on!” and took me over to her. Thankfully he did most of the talking and she said “YES OF COURSE!!!!!!!!” I was stunned!! I hastily fumbled in my bag for a piece of paper and a pen (why is it so much harder to find things when you are panicking?!) and she wrote down her email address and PA’s phone number WOO HOOOO!!!!

Then Sue and Richard came over and we finally all got to meet and hug each other. They are two of the loveliest and most genuine people ever and it was so nice to finally meet in person after lots of emailing and phone calls. They asked if we wanted to join them for something to eat and drink and although I was tired beyond belief I couldn’t miss an opportunity to celebrate something like this, so we all decided to go back to their hotel for a drink and a burger. It was nice to chat to them properly and everyone was on a real adrenaline high.

At 12.30 am Brad and I said we had better head home. Poor Daisy had now been in the car 10 hours apart from two hurried leg stretches! She is such a poppet and so patient and adaptable. We finally arrived home at 3.30am and after all my nebulisers etc I finally fell into bed at 5am. What a day!!!

Friday, December 15, 2006


Yesterday was an amazing day! Utterly exhausting but really good. I will write more about what happened in tomorrow’s blog entry, but here is the background to what I got up to…..

I have been in touch a lot recently with a wonderful woman called Sue Cansdale. Sue’s daughter, Zoe, was tragically killed in a motorcycle accident in 1998 when she was just 22 years old. Sue and her husband Richard knew that Zoe had wanted to be an organ donor when she died because of a conversation she had with them when she was just 10 years old after watching a TV programme about organ donation. Despite their utter devastation at Zoe’s sudden death, this generous family decided that they would give hope to others. As a result, Zoe’s heart valves saved the lives of two little girls and her corneas restored the sight of a young man of 24. What an incredible legacy.

But Sue and Richard did much more than just this. They decided that more awareness needed to be raised of the issue of organ donation and the miracles it can achieve in helping and saving the lives of others. Believe me, Sue is a woman who once she has made her mind up doesn’t stop at anything! She decided to publish a glossy A4 book called “Transforming Lives”, full of stories and beautiful photographs about the people whose lives are touched by organ donation and transplantation…people who have received transplants, families who have donated their loved one’s organs, surgeons and nurses and many others. To have a look at the book online click on the link in the right hand column ---------------------------------------->

In order to publish this book they needed some funds. So Sue and Richard set up their own charity called “Legacy of Life”. But Sue wasn’t going to sit and wait for money to come in! She began fundraising in earnest (including baking cake after cake to sell last Christmas) and copies of the book started to be produced. However this was a very slow way of raising funds and because they were only able to afford to print small quantities of the books, the costs were high. But as I said before, Sue doesn’t take no for an answer and as she says herself “Time lost is lives lost”.

It therefore came as no surprise when she told me last week that she had just auditioned for a new ITV Show called “Fortune”. The programme is basically very similar to the BBC programme “Dragon’s Den” but with a slight difference. There are 5 millionaires on a panel and they have each donated £200,000 of their own money to go to what they feel are worthwhile causes. Individuals go before the panel and do a one minute “pitch” of their idea before being scrutinised and interrogated at great length by the millionaires. Finally they are told whether they will get the money they need or not – at least 3 of the panel have to want to support the person/venture in order for any money to be passed over.

Sue had travelled to London (from Newcastle) to audition for the show in order to get financial help with printing the “Transforming Lives” book and DVD….and she had got through!!!! In one week she would have to go back to London for the filming of the TV show in front of a studio audience! This opportunity could not have come at a better time as Sue and Richard had just received the backing of the Department of Education for their book to be used in schools for the teaching of the subject “Citizenship”. The book and DVD pack could therefore be placed in every one of the 25,000 secondary schools in the country, as well as all the hospitals/prisons/libraries that Sue had already planned to get it into. All she needed now was the money to do it…£100, 000!!!

So, yesterday I headed off with Brad to drive to the studios in Bow, East London for the show! Sue had arranged that Brad and I and another guy (Andy) who I knew and who needs a kidney transplant, could sit in the audience to watch and she said that if she got chance she would mention that there were people in the audience who needed transplants and we might even get shown on the TV. As I say, it turned out to be one tiring but excellent day…full update tomorrow!

Wednesday, December 06, 2006
















Spot the Difference?

Brad has always maintained that my CF consultant bears a striking resemblance to my Granny. For this reason he always refers to my CF consultant as "Granny" (not to his face should hasten to add, that might just be slightly bizarre.....)

Now I spent 3 years telling him he was talking rubbish (well actually I always tell him that but I've told him for 3 years on this particular issue).

In order to clear up the matter once and for all, I decided to put them side by side.

I think he may have a point now.

Tuesday, December 05, 2006

Well I'm back!!! The flight took several days to recover from but I am now starting to feel a bit more normal again (I use the term very loosely ;o hehe!) I've launched straight in at the deep end with tons of work on the Live Life Then Give Life campaign work with Emily and also extra work with the new charity that I'm a Trustee of called "Gift - The Children's Transplant Charity" (will talk more about that at a later date). So it's all a bit hectic and the holiday seems really distant already, but its good to be back having dosed up on sunshine!

Yesterday I spent the day with Emillllllllllllllyyyy!!! YAY!!! OK, it didn't go quite according to plan as most of the afternoon was spent in A&E (see Emily's blog for more info!) but I did get to ride in an ambulance...though sadly without the blue light flashing. It was a bit of a let down actually. I was expecting something all high tech, full of neon lights, stainless steel surfaces, high-tech equipment and perhaps a pop-up operating theatre....but instead it was very basic and a bit, well, tatty really hehe!

Just a short entry today as I'm somewhat busy. But I read this just now and it really made me smile, so thought I would share it! Enjoy!

This is the transcription of the ACTUAL radio conversation between the British and the Irish off the coast of Kerry, Ireland October 1998.

Radio conversation released by the Chief of Naval Operations 10-10-98.

IRISH: Please divert your course 15 degrees to the South to avoid a collision.

BRITISH: Recommend you divert your course 15 degrees to the North to avoid a collision.

IRISH: Negative. You will have to divert your course 15 degrees to the South to avoid a collision.

BRITISH: This is the Captain of a British Navy Ship. I say again, divert YOUR course.

IRISH: Negative. I say again, you will have to divert YOUR course.

BRITISH: THIS IS THE AIRCRAFT CARRIER HMS BRITANNIA! THE SECOND LARGEST SHIP IN THE BRITISH ATLANTIC FLEET. WE ARE ACCOMPANIED BY THREE DESTROYERS, THREE CRUISERS AND NUMEROUS SUPPORT VESSELS. DEMAND YOU CHANGE YOUR COURSE 15 DEGREES NORTH. I SAY AGAIN, THAT IS 15 DEGREES NORTH OR COUNTER MEASURES WILL BE UNDERTAKEN TO ENSURE THE SAFETY OF THIS SHIP.

IRISH: We are a lighthouse................Your Call.