Thanks for the feedback and thoughts on my last post. Always interesting to read other people’s experiences and beliefs on the matter.

Last night I did another talk, I am doing quite a few now and trying to approach different groups in order to raise more awareness. This one was at a Bupa hospital, and was kindly set up by a friend of mine, who I met many years ago in hospital not through CF but through similarly dodgy lungs all the same.

The talk went really well. They were a lovely group, I was slightly more nervous than usual as these were health professionals so of course my marvellous “and then it went a bit deflatey and sat at the bottom of my chest cavity stubbornly” explanations wouldn’t really do. They had covered all the tables in pink paper (woo!) in my honour too. I did my usual blurb which is to run through my life really, throwing in facts about CF and about organ donation along the way. I love public speaking I really do, but I still haven’t quite become used to making people cry. It makes me feel sad watching them but I know that it means I am getting the severity of the situation across and also that luckily for me my “story so far” has a happy ending. A group of them are running the 10k soon to raise money for Foulis ward, which I spent many many months on as many pwcf do so click here to sponsor them.

I finally heard back from Harefield. I had a CT scan last week to investigate my Wheezy Penguin Syndrome. Essentially what they thought they would see (sciencey goggles on please) is evidence that at the join of the new lungs onto my windpipe, the scar tissue had got completely over excited and over accumulated causing a partial blockage of my airway which would make a wheezey sound like I currently have. Weirdly the CT scan showed no such behaviour, so now I am booked in for a bronchoscopy and possible biopsy to examine things further. I told my mother who put on a pouty face somewhat similar to mine and decided flatly that I could not be spared for a night or so. Good to see where I get my mature streak from then.

Am not too worried, apart from obviously the dreaded ‘R’ word which does crop up when pondering over what it could be. Still I have had a general anaesthetic more times than I have had hot dinners, and it will be kind of nice to be a patient at Harefield and actually be able to walk over to the canteen! Plus A is going to drive me up there on Monday night and we are going to go to a gorgeous little restaurant in the town that I have never been to. So anyway it won’t be a big deal, will let everyone know how it goes once I am back. At least I am only missing rain rain and more rain…

Every now and then, the subject crops up on the message boards about having another child with CF. Cystic Fibrosis is hereditary, and when both parents are carriers of the gene there is a one in four chance that their child will be born with CF. For the majority of parents, they have no idea that they are carriers so the birth of a child with CF comes as a total shock. But once you have one diagnosis, you are aware of the statistical implications of your next born, which brings up the terribly hard question: should you risk having another child with CF?

When I was born, there was no method of testing the foetus for CF. Now things are quite different; there are techniques such as PGD and CVS , which can offer further options and a possiblity to ensure the child does not have CF.

I used to think it was all very clear cut. Having a child knowingly with Cystic Fibrosis was wrong, I was sure on the matter. This was predominantly due to several factors, one of which was several devastatingly sad experiences of young siblings with CF that I knew through hospital. But then I began to grow up a bit, I met several very interesting people, developed close friendships with other pwcf, some who have or have had siblings who also had CF, and who had a completely different view of it all. It began to change my opinion, help me see that perhaps this issue wasn’t as clear cut as I thought.

The one opinion I stand by quite solidly is it does annoy me when prospective parents talk about whether they can cope with two children with CF. As far as I can see, that should not be the issue. Mind you this is not unique to children with CF; this is a frustrating discussion that many prospective parents might have. Yes it is all very well deciding that you can cope with a child and that you want one, but what about the child themselves? Surely the consideration should be whether it is the best thing for them?

I no longer think there is a right answer. Cystic Fibrosis is so unpredictable, you could have a firstborn extremely well child with CF then the next one could be terribly ill. Or vice versa. As for sibling relationships, I am extremely relieved neither of my sisters have to go through what I do, but I also know people who have had life-alteringly close bonds with their siblings and been able to help each other as they both share the same illness.

There is lots more I could say on the matter but I think I will leave it there, open ended. It’s an interesting topic, and I don’t envy the parents having to discuss it and consider all the options. Yes you can have a good life with CF, but it is no walk in the park, it can kill. And there are no guarantees. Mind you there aren’t in any walk of life are there…

Yesterday was my CT scan appointment at Harefield. Seeing as I am feeling so much more normal and now attempting to be a real adult, I decided I should drive myself there, after all it can’t be that hard…my sisters, knowing me far too well suggested perhaps they come along for the ride, and when I picked them up they were armed with directions and a rather large map, which is just as well because apart from “go on the M25” I didn’t really know where we were headed. I stick by the fact that I was in Harefield whilst they trekked up there continuously therefore it is reasonable that they know better than I do how to get there.

They brought some rather good CDs, with loads of songs that brought back memories of when I was younger bouncing up and down to them, and we sang all the way there. We arrived in plenty of time so went to the nearby pub; a place which became a second home to my family whilst I was in. If there was good news, they would go there to celebrate, if it was bad, they would go to drown their sorrows. Abby squeezed my arm gently as we stood at the bar, and said how strange it was to be standing in there with me, strange but in a good way. We sat at quite a significant table, as it was the one they had all gathered round in excitement the night I was called, but had also wept over on Black Thursday. This time it was just me and my sisters, sitting raising our glasses to the fact that for the first time, all three of us were there together.

We had a lovely lunch and then made our way up to the hospital. I was in nice and quick, and I recognized the radiographer so said hello and after peering at me for a second she confirmed delightedly that she had been on call the night I got my transplant, and oh my goodness I looked so well now! The scanner is a new one, funded recently by an appeal Harefield ran. For anyone that has never seen a CT scanner they are essentially like a giant donut, with a slidey bench which, er slides in through said donut (I bet that mental image is much clearer for you now isn’t it). It has a nice polite voice that says “and breathe in, and hold your breath” whilst some little lights flash and the bench moves slowly through the donut, then “you may breathe normally”. We go through that a couple of times, and that is pretty much all there is to it. As I lay there in between scans, counting the tiles on the ceiling, a man wandered in to pick up some equipment. He appologised for doing so and I said that was fine, so he started chatting whilst he was searching through boxes. He was from the surgery team and asked me if I had been to theatre. Stifling a smile I replied that yes I had been, just a few times (I went every other day for a few weeks for my suction pump) and that I had had my transplant in January. “Ah so you must be Emily! Nice to meet you!” Alarmed at my apparent infamousness, I replied likewise, and we chatted for another minute or two before he returned to theatre and I had the remainder of my scan.

All went smoothly and finished promptly, and I returned to the waiting room where my sisters were sitting browsing the various magazines spread across the table. The whole thing took about half an hour which didn’t really seem worth it for the hour and a half journey we had just made, but it is a very specialized test and hey anything that keeps an eye on these lungs and keeps them working beautifully is fine by me! I should find out the results next week. As we left Harefield, the heavens opened, so we decided to sing “I’m singing in the rain” at the tops of our voices all the way back to the car, and arrived suitably drenched. Thanks to my sisters, I had a really good afternoon. It’s amazing what you can make out of a rather mundane chore when you have the right people with you.

At the weekend, a large group of girlies joined me to celebrate my recent engagement. One of them did point out that traditionally the groom-to-be is invited to any such occasion but I was in need of girly drinks so this small detail was swiftly swept to one side.

The evening was superb. This was not however due to anything I did – in fact my organization skills failed dismally from the word go. The first bar I told everyone to go to was closed when I tried to book it. I then looked up a different one, but it had changed it’s name, and the woman on the other end of the phone had a very heavy accent and after asking her three times for the name I was too embarrassed to ask again. On further investigation, I found a Spanishy sounding bar and decided triumphantly that this must be the one. We turned up there to find the man had no recollection of our booking. I was annoyed at this, as the lady on the phone had said the manager would phone me back to confirm and no one ever had. I pointed this out and firmly insisted that this must be there mistake. Credit to them they immediately set about creating a block of tables for our giggling girly party. It was only when he was putting the finishing touches to it that it dawned on me that we may or may not be in the wrong bar. By that time he had worked so hard to accommodate us I felt too guilty to leave, so we stayed, enjoying a fab evening of pina colada’s, sangria and tapas. Luckily the girls know me well enough to just laugh at me (and one even kindly reminded me to get someone else to organize my hen night).

Sitting there, surrounded by my friends, I just felt so incredibly happy and so so lucky. I haven’t been able to do the whole “bar” thing for years, well in fact I have hardly been able to do it at all, as the smoke has always been too hard to tolerate (come on July 1st) and by the time I was at Uni my lungs really were not complying with my need to go out and party. Honestly this year is a bit of a dream come true so far. Well minus the whole nearly dying bit right at the beginning.

A small group of us returned to mine for coffee and further laughter, and poor A arrived home to find a group of shrieking girls drinking coffee and clutching various wedding magazines. Credit to him, he merely offered to make more drinks and sat down quietly. Although if you ask me he wasn’t actually too fussed to come home to be greeted by a room full of rather lovely women…

I have heard from Harefield now and due to wheezing becoming slightly excessive now creating an eerie whistling affect, I am booked in for further investigations on Friday. My sister who has just finished Uni has volunteered to accompany me so I am sure we will have quite a nice day; there are some great pubs up there so a good lunch at least!

Work-wise we are still ploughing on with preparations to support National Transplant Week. We have a bit of a project currently being planned, which I will disclose as soon as it is all a bit more concrete. I am also currently helping these guys here; about time I gave something back to the NHS so I am more than happy to be involved. Yay for life!

ps - I was going to add please spare a thought for Emmie, who is having great problems with her port. However I have since been informed that due to its continuing disobedience and naughty behaviour, she has now named it Emily and consequently the whole team have taken great delight in referring to it as "Naughty Emily". I no longer feel she needs any pity...

Very sadly, my friend who I spoke about in the previous post past away. My thoughts are with her family and friends and she will be greatly missed. It is sadly another huge reminder of how much work and awareness raising there is to be done.

Onto brighter things, I had the most fantastic day today! It was my mother’s school summer fete and I went along because not only have they been amazing and supportive of my mum since she started there, but they are kindly giving all the money from the Raffle to the CF Trust. Laurence Dellaglio opened the fete, I got to chat to him a bit, he was very friendly and posed for a pic and said he was in awe of what I had gone through.



I accompanied my mother as she set to work on one of the stalls, and I enjoyed it so much I took over her shift and stayed there. People kept worrying if I was ok or if I was wearing myself out but I just love to have something to do and be busy, and I think because I am so used to doing things running on empty I now feel a bit like superman (oh dear the superman complex that Harefield have warned against). It was lovely to chat to all the children, and the parents who have been so sweet and bought me presents after my transplant despite never having met me. The committee had all purchased LLTGL T-shirts and so there was quite a few of us sporting them dotted around the fete. The weather couldn’t make up its mind and kept thundering intermittently but it didn’t spoil the atmosphere at all.

Then as a massive favour to us, Richard turned up to draw the raffle and thank everyone for their support. It was the first ever time he has seen me without oxygen. I turned round to see him, ran at him and he threw his arms around me, lifting me up as he did so, exclaiming “did you just run?!”. I don’t think he could believe it is such a transformation. I chattered away (hard to believe I know) till he had to go but not before taking a video of me on his phone for Judy who he said wouldn’t otherwise believe it when he told her! I jumped up and down whilst he was filming just to demonstrate what a complete transformation it really is. It looks like I might be on their show again in the next month or so, so watch this space…




So yet again today I was surrounded by amazing giving people who just want to help and want to support me and my causes…people in this world are really pretty great when you look closely.

I know this is the second blog today but I just had a really great evening and wanted to share it. Also goes to show that life is made up of ups and downs, variety is the spice of life and all that. Anyway, one of the things I am most grateful to my parents for (I am grateful for a lot of things) is their peculiar habit of saving scraps of paper, letters, bits of work, drawings etc from throughout our childhood and filing them away in a huge metal cabinet. On Tuesday evening my sister and I dug out several of these files (for research purposes, I may or may not be writing...) and the results were hysterical.

All my school reports are in there, dating back from my very first primary school assessment. Weirdly, and for reasons I clearly cannot fathom, sentences such as “Emily sometimes talks too much” crop up rather frequently and throughout all my scholastic years. One of my favourite comments is actually on my year 7 report (I was 12 at the time) which says rather succinctly “Emily can sometimes try to take charge of a situation even when it is inappropriate for her to do so.” Slander, I am telling you.

In my middle school, there was a small box on the back where the pupil was encouraged to write a short self assessment of their academic progress so far. I appear not to have got the hang of that as aged 10 my progress report reads “I am kind (mostly!) and quite pretty”. Obviously no self esteem issues there then.

In all seriousness though going back through these files is a much treasured trip down memory lane, frequented with cries of “oh I had forgotten that” and “oh my goodness how old was I there!?” etc. I would strongly urge any parents out there to create these little folders (or memory boxes as I know some call them) as they are truly invaluable to go back through years later. This file also holds the answer as to how happy I was as a child, with the following sentence on yet another school report. “I am a friendly person and I have a happy life. I want to go on doing my best at everything.” Clearly my parents did something right then.

It seems to be another quite tough week for the CF community. I follow the blog of a girl in America who received a double lung transplant, rejected, then went onto receive a single lung transplant, then sadly rejected again. She died a few days ago, and messages of condolence have been pouring onto her site. She was incredibly brave and would talk candidly and openly about death and her feelings towards it. Reading other people’s experiences is helpful and useful as it allows you to feel you are not the only one going through these things. It also makes your experiences seem more normal and less frightening when you hear other people have been through the same and made it out the other side. However the bitter side of that is you watch people in a similar situation to yourself not do so well, and sometimes sadly die. It’s frightening yes, but I am sure it is frightening when anything that focuses your attention on your own mortality happens.

I received an email from a friend of mine today who has been waiting for transplant for some time. She informed me in a calm and dignified manner that she is now too ill to undergo the operation so is making the most of the time she has left.

It makes me sad and it makes me angry. It shouldn’t be this way. Even worse the friend in question had several false alarms, none of which ever came to anything. Thanks to the CF Trust and our Laughter for Life! gig, a new donor coordinator is being employed by Harefield to try and cut down on the number of false alarms caused by non viable organs. But why is this being self funded? And why is it not nationwide? As far as I am aware, in America they have these coordinators in all hospitals with ICUs, and when this was introduced the number of transplants went up threefold. I just feel disappointed for her and her family that this chance has been missed. She is as I said extremely level headed and I am sure she would not want any pity. Instead she is focusing on putting as much quality as possible into the time she has left.

Things with me are absolutely fine, I am happy and content and living a fantastic life. All this is only thanks to the gift of a stranger. It’s just another reminder to me really that I am just so incredibly lucky. Just because it happened for me does not change the fact that for 50% people waiting for double lung transplants it will never happen. National Transplant Week is coming up soon, hopefully there will be lots of media attention on the issue around that time. What about your work place? Could you do anything? Perhaps order a free box of UK Transplant stuff and have it in the foyer of your offices or something? Have a think…

(my that's a lot of weblinks. Check out who thinks she has mastered it)

Yesterday was Ashtead Village day, where we had (very kindly) been given a pitch for free. I gathered together a team of helpers (bless their cotton socks) and the four of us set off for a 9.30 start. As well as a ton of info on organ donation and on CF, we had a few little elements to try and entice people over, such as a raffle, a win the teddy competition and mints (which sounds weird but really worked!) We had a constant flow of people around the table, some just taking donor cards, some stopping to chat, some with their own stories, others just wanting to hear ours.

The two most common myths which cropped up time and time again were:

“I’m too old”. This is nearly always incorrect. The oldest donor so far was 82. There is no age limit, instead they look at quality of the organs.

“I can’t donate I have asthma/diabetes/MS etc.” Again, incorrect, and frustratingly according to several of them their doctors had told them they could not be donors because of it. Whilst these illnesses could obviously affect organ donation, the only two illnesses which categorically rule it out are CJD and HIV.

Another very common phrase we heard all day was “oh I have been wanting to get one of these [a donor card] but can never find one.” This is almost certainly true, and it bugs me. Why is it so hard to find a donor card? And it really is. I don’t know of many shops that have them by the checkout, nor many doctors surgeries which is more worrying. Boots advantage card has a section where you can indicate that you are an organ donor which is great. The new driving licenses obviously, but there doesn’t seem to be a clear indicator on that (I think it is some number in a category or something).

I know the most important thing is for people to join the organ donor register, but I feel that for people themselves and their families, they want something tangible, something that verifies it for them. We had leaflets where you could just send the slip in to join the register, but many people requested “the one with the card on it”. In 1998 the BMJ published this article which talks about the idea of the donor card symbol being on a credit card. After all who doesn’t have a credit card? I have often talked about all store cards following Boots’ example because I don’t think I know of anyone who doesn’t have at least one store card, surely they could all offer the option “do you want to be an organ donor?” on the form you have to fill out?

Anyway grievances with national attempts at awareness aside, the only way forward it to talk to people about it and help them make an informed decision. We left Ashtead with 48 filled in forms to post, and loads more people took them away for themselves and for friends and family. We had a really lovely day, I had no voice at all by the end of it – had been putting my new lungs to good use by shouting about it to get attention! Hope everyone had a lovely weekend in this absolutely gorgeous weather!

Today was an exciting day, for two reasons. First reason is, I went on a train. Again, sounding rather mundane there, but I haven’t been on a train in over 3 years. As my CF progressed and I got more and more breathless, climbing stairs and changing platforms became too exhausting, and once I was on oxygen it became nigh on impossible. But today, I took that next step towards being a bit more adult and restating my independence and got myself to Victoria (I didn’t want to go on the underground, worried about infection risks). I arrived in plenty of time (fear of being late) and wandered over to the ticket booth. As I was buying my ticket, I was thinking “I have two new lungs inside me and you don’t even know” which was highly self involved – I mean the man who was serving me could have had any number of things happen in his life that passengers wouldn’t be aware of…we never know what journey the person next to us might have had.

Taking my seat next to the window, I tried hard not to stare at other people, yet was fascinated, taking in all the little human details. I don’t think you very often get that close to strangers and become that close a witness to their little idiosyncrasies. An old couple, sitting side by side, bickering gently on which line they need to take. A harassed looking mother with two young children, who were taking it in turns to repeatedly ask where they were going and clearly not believing the mothers tired repetitive response. A young trendy girl, earrings and bracelets jangling, playing a game on her phone, a business man, chatting on the phone with one eye browsing the paper on his lap.

On arrival at Victoria, I was slightly overwhelmed by the huge bustling rushing atmosphere. Clealry I have been moving slightly in slow motion still (not hard when you live in a little town) and everyone there seemed to be on fastforward. I was early so browsed Monsoon for a bit (such a bad idea, nearly spent my taxi money on new shoes that I really don’t need but managed to resist) and then wandered over to the taxi rank. Sitting in the Taxi, I was desperate to blurt out “I got on a train and came into London all by myself!” but thought that was a)rather childish and b)may make him think I was weird. The journey was much shorter than I anticipated and suddenly I was there, staring at the doormen in their long coats and top hats, feeling distinctly out of place.

I tried to look assertive and confident and went to the desk to ask where I could wait. They showed me into a seated area with huge armchairs that a duke or duchess would be proud to own. There was a towering vase behind me with the biggest bunch (it can’t really be called a bunch) of flowers cascading out of it; I considered taking a photo but decided against it as I would look a tad touristy.

The meeting itself was with the Simone Cowland Trust, who are holding a charity ball to raise money for Foulis ward (the CF ward I have been treated on for most of my adult life, and that I lived on for much of the last year or so prior to transplant.) Last year they had Martine McCutcheon host their ball…this year they have asked Emmie and I. We are totally overwhelmed and deeply honoured, and are hoping that we will do them proud and help them raise loads of money to support adults with CF who can end up spending so much time staring at those four walls.

I headed home after the meeting feeling sky high, motivated and determined. I am hosting a stall at a village fete this Saturday where we will hopefully get some people signed up to the ODR, and raise a bit of awareness about our campaign and CF along the way. We can’t mend all the problems in the world, but we can do our bit to change it…

It may or may not have been highlighted that I failed to say where I went today. It was the Dorchester. Minor detail clearly.

We have been keeping busy campaign wise. Organ donation has cropped up in the news twice this week, once re the rather scary sounding “Big Donor Show" and then on Wednesday when it was revealed the EU are thinking of launching their own donor card to try and combat the huge donor shortage. I became rather narked with the BBC at this point because not only had the previous days article not mentioned anything about how to register as a donor, but then the latter article, which actually talked about the dire shortage of donors, also had no sign up details whatsoever! After a phone call to complain and the magic charms of a journalist friend of mine, a UK Transplant link was added. A small victory perhaps, but it just seems such a logical place to put one!

Yesterday was my regular trip to Harefield. It was strange for several reasons, firstly my mother insisted I drive (and then took me a ridiculous “scenic” route which means I didn’t actually learn where I was going at all) and secondly because I hadn’t been for 5 weeks, so it felt rather strange. We arrived in good time and set about the routine tests, bloods, X-ray and lung function. We had a lovely lunch together in the pub down the road (which I walked to, yay!) at my mother’s request, as she and my family had spent many a time down there either toasting to a bit of good news, or drowning their sorrows at potential devastation.

Whilst there we phoned Lisa on the internal phone, who is still doing very well but is struggling. It sounded so similar to the feelings of confusion doubt and sadness that I had so I told her I have every faith and confidence that she is going to do this, it brought back not very pleasant memories but at least I was able to say I have been where she was so hopefully I know where she is headed.

My appointment itself went fine, I mentioned my wheeze, which has been growing more and more audible, so much so that other people have started commenting on it and Abby has dubbed me “the wheezy penguin” out of Toy Story. After some examination, the doctor decided it is probably (here is where my vast lack of scientific knowledge and understanding lets me down) some…thing where the scar tissue from the join (where they connected the new lungs to the windpipe) gets a bit over zealous and over tissues, creating a narrowing of the airway. There are 2 ways to solve this, depending on the type of narrowing it has caused, and both require bronchoscopies (camera down into the lungs) therefore will require admission. Apparently he is going to confirm the diagnosis with a rather clever thingamajig (didn’t know this was actually a word until spell check corrected my attempt) which creates a sort of 3D picture of the lungs using cross sections of my CT scan. I may be making this up a bit, don’t quote me on it. Still he didn’t seemed to worried about it and if the only problem is over enthusiastic scarring rather than rejection that is fine with me!

Today was a wonderful day (to be honest what day isn’t at the moment). In the morning I had a photo shoot which is predominantly to be used for my mum’s school, who are fundraising for Harefield and the CF Trust all this year. Being the shy and retiring wallflower I am I thoroughly enjoyed the experience, especially as I got to wear my gorgeous long floaty skirt that only comes out on special occasions, and run through a field barefoot (in fact I enjoyed that bit so much I requested to do it again. And again.) After lunch, my mother and I headed up to the Brompton. I had been dying to go and visit the staff who looked after me for so many years and seeing as my mother is on half term we thought we would take the opportunity. As the lifts opened on the 2nd floor I caught sight of one of the physios who had helped me train for last years hydro active. She shrieked and I ran and threw myself at her, hugging her and laughing (it was either that or cry). My CF nurse was there too, someone who has helped me through the years and who last Summer had to give me my end of life talk, and was now gobsmacked standing their chatting to me, well listening to me as I hardly let them get a word in edgeways.

As we moved through the hospital we found my other favourite physio, who again has endured countless hours of listening to me, comforting me, and most importantly, helping me breathe. We went up to the wards where there was more cries of “oh my god!!” more shocked faces, more smiles and more tears. We then headed over to the High Dependency Unit, where I was for so long 2 years ago, and were reunited with the staff there. The head sister took me downstairs, through some long winding corridors, to see the surgeon who had saved my life twice over doing complex bullectomies and adhesion my lungs to the chest wall to try and stop them collapsing. It was so wonderful to get to see these people when I am not a)terrified b)struggling for breath and c)desperately ill.

I did my calculations this evening when I got home. I estimate that I owe at least 17 people from that hospital my life. Now bearing in mind, those 17 are people I can think of who I am pretty sure I would have died without their direct intervention. As for the number of people that got me through psychologically and physically to keep me fit enough for transplant, it is a huge number, far greater than I dare estimate. It is funny to sit and contemplate just how many people have got me here, if I tried to calculate the total medical care and intervention at pivotal times of desperate need, I suspect I would be nearing 100. There is an advert I have seen for the NHS in which a patient talks about the number of people it took to put them back together again. These people are amazing. I know it is a job, they are paid (generally not enough) and that that is their responsibility but I have found that 9 times out of 10 they go beyond the call of duty, which is why I considered today’s visit to be to see old friends rather than just a courtesy call. Ending with something I say an awful lot; I am a very lucky girl.

I was browsing through some forums earlier which I found as they link our Live Life Then Give Life webpage. One thread was talking about a post we issued about a little girl called Angel, who’s in desperate need of a liver transplant. Several comments surprised me greatly. The general gist of them was “yes that is all very sad but what is the point of this post? What can we do about it?”

This surprised me because it goes against my natural way of thinking. Now I am not boasting, I wish this was a grand self taught ability due to my profound knowledge that this is the right way to be, but actually it is just because it comes as an instinct to me and I can’t help it. When I come up against an impediment, my first thought is what can be done to tackle it. It just never seems to occur to me that there can’t be anything done. I suppose this is a weakness as much as a strength, as it does unfortunately mean I throw myself at sometimes the most insurmountable of obstacles.

I know I am not the only one who thinks like this, there must be hundreds and thousands of people out there of a similar mindset. Is it natural, or have we taught ourselves to try and think like that? That is another discussion entirely. Yes my way of thinking can be tiring. It requires energy and proactiveness both of which take up a lot of time. It also does not always end in success. But the way I see it, if we all sat there and went “well I can’t do anything about it” then the world would just crumble. Medicines would never be discovered, new places never conquered, technology never advanced, the list goes on.

I cannot change the world. No one can, but the tiniest of gestures can make a difference. A smile and a cup of tea with a friend, a card to someone who is ill letting them know you are thinking about them, all these change things for people. And surely it is the minutes in someone’s day that make up someone’s life? Therefore surely you are changing their life in your own tiny way?

I don’t believe in fate. Well actually, I do a bit, but I believe that we are all responsible for our own lives. I had to read a philosopher called Satre as part of my French degree, I think his essay “l’existentialisme est un humanisme” made quite a lot of sense. If you want to do something, you need to get up and do it. Or at least try to do it, not just sit there contemplating whether it is actually all worth it and what if I don’t do it maybe someone else will.

My friend Emmie, who often comes out with more intelligent things than me, gave me a quote from Ghandi which seems to sum up what I am trying to say; “be the change that you want to see in the world”.

Anyway I figure even if I am wrong…at least I tried.

I jumped in the car earlier, to pick up my sisters, who had spent the afternoon being posh ladies who dine out in London. I approached the station and could see them chatting and waving excitedly. The journey home was filled with tales from the day, and they had bought me the most awesome box of marzipan fruits (I swear these things actually look like fruits and veg, and they are strange ones, Melon, Corn etc..!) from Harrods, and had generally had a wonderful time. I dropped them off at home, still glowing, and drove off towards my house.

As I turned onto the main road I started to cry. Cry with happiness. I sobbed thank you, I don't know where to or why, but just overwhelming gratitude to my donor and their family. Without them I would be dead by now, and instead I am driving round, picking up my sisters, going out with friends for the day tomorrow and generally living my life. My family are no longer chained to staying within a phonecalls reach of me, should I need anything or should Harefield call. They have also got their lives back, and this evening was a beautiful demonstration to me of how things have changed.

I still can't believe my luck, I still can't believe it has happened, but my god am I going to make this count.

Verrrrrry short post on here as I have just waffled on for britain in 2 posts on my hydroactive blog

Have had a fab few days, extremely busy still but I still can't get over how much I can do! My favourite thing this week was my walk with my mother down to our local park, and around "the heron pond" so called due to it's stately looking inhabitant who sits on the little island in the centre of the pond, regarding everyone with slight distaste.

It was gorgeous and sunny, and we set off at a good pace, chatting along the way. As we walked back I couldn't believe how small the hill (which was it turns out a gentle slope) now seemed. I remember struggling up that hill at a young age (my mother confirmed this stating that her comment was usually "you insisted on bringing the dolly and the pram, you can push it home") and then in the last few years have only ever been pushed up there myself in the wheelchair.

Excitingly I wasn't as tired as I thought I would be, although I did sleep for 14 hours so perhaps I was rather tired just not in the chronic worn out fatigue way I keep being nervous will return.

Anyway since I said I wasn't going to waffle on this blog I should shut up now.

Huge moment yesterday – I went swimming. OK that may not sound like a huge moment, but I haven’t been swimming for well over two years, possibly closer to three. Even in the run up to me using oxygen 24/7 the sheer effort involved in the whole procedure, walking there, stairs (of which there are often many) getting changed, actually swimming, getting showered and dry (huge issue when constantly breathless) and getting changed again seemed far to huge an obstacle to overcome. Since my transplant I have been building up strength and waiting for the time that the risk (and there is always a risk as I am immunosuppressed) of picking up bugs is at its smallest.

So yesterday, after a significant amount of nagging from my mother who was not moved by me pointing to my diaphragm and reminding her it was paralysed, we drove to our local gym and pool to sign me up – a years membership being a birthday gift from my lovely grandparents. As we pulled up to the centre, I had butterflies in my tummy. It really shouldn’t have been a big deal at all but to me it was another landmark, another sign of returning to a life that somewhat resembles normal. We walked up the stairs, leaving Abby to study in the café but be able to wave at me through the window, and my mother and I disappeared into the changing rooms.

As I child, I used to accompany my mother on her ticket, and so spent many happy hours there splashing around and racing my parents or my sisters up and down the pool. I have always been a bit of a water baby, and used to swim regularly once a week for as long as I can remember; something which I attribute the strength of my old lungs to, and one of the key reasons they managed to keep on working right to the end. Apparently on one holiday very early on, we arrived at the poolside and with a squeal of delight I hurtled myself into it, completely oblivious of the fact that a) I required armbands to stay afloat and b) this was the deep end of a rather large pool therefore had to be promptly rescued.

Anyway back to yesterday. We walked down the corridor and onto the poolside. It was fairly quiet, with only one or two members dotted around, casually making their way up and down the length of the pool or sitting relaxing in the Jacuzzi. I suggested to my mother that I sit and watch her first, which did not go down as well as I would have hoped. So instead I was swiftly cajoled into walking down the steps into the pool, where my mother took off and swam rapidly to the other side. I stood there, with water up to my knees, and looked down at the pool. I am not scared of water, never have been (as my childhood kamikaze attempt demonstrates) but somehow I couldn’t quite bring myself to launch in with carefree abandonment. I slowly edged myself in, bit by bit, the feeling of being immersed in water was strange and took me back to being on holiday in Greece where I would spend hours just floating or swimming in the sea.



I finally decided that feeling though I was as if I was about to launch myself out of an airplane, this was a tad melodramatic and grabbing hold of the edge, I pulled myself into the pool so I was completely immersed. Swimming is like riding a bike, once learned never forgotten, and I quickly found my water wings again. Being in the water was just such a liberating feeling, and in a completely over exited way I challenged my mother to a race (which I won incidentally) suitably knackering myself out by the time I got to the far side. We swam about a bit more until I got a stitch and decided to call it a day, sitting myself on the side of the pool dangling my legs in the water.




The whole experience was just so strange, it was something that took me back to my childhood, to a time where I had little concept of what being really ill was, and then represented something I thought I might never be able to do again. Needless to say, I arrived home exhausted but beaming, and I am looking forward to going again, and this time braving it to the gym (where I really need to start my training schedule to try and work up to this 5k in September!) Freedom. Freedom to walk, to climb, to swim, to talk…to breathe.

We have had a busy week campaign wise – a young girl called Jessica who contacted us requesting to help has had her story picked up by several Media outlets, including her local BBC news and the Sun newspaper. If you click on the BBC article link and look on the right hand side of the page, you can view Jessica's interview online. I was interviewed as the expert opinion (not my own label, I suggested UKT but they said they wanted someone from our campaign) and Jess and her mum were interviewed, putting across a thoroughly powerful and emotive message. I believe that it is only through real life stories that we can really motivate people to understand the importance of organ donation. Emmie and myself are continuously grateful to those who come forward to share their stories, and hopefully save some lives by doing so.

Last night I gave a talk at the 41 club – a club for ex Round Tablers. They were a lovely group and it went really well, with all members taking at least one donor registration leaflet afterwards, and many taking several for friends and family as well. I have had two further requests stemming from this talk, so hope to increase my reputation as a guest speaker and continue to spread the word in this way. I think I am lucky that I do not mind (in fact enjoy) talking about my situation and therefore should use it to help others have the same chance as me.

Surprisingly (well I found it surprising) there seemed to be quite a few requests to learn a little more about the mysterious ‘A’ (you romantic lot you). Unlike me, (a born drama queen who enjoys spilling her life to anyone and everyone and could talk for Britain) A is a far more reserved and private person, therefore for his sake I would like to be vague about…well pretty much everything really.

I have known A for many years. We have grown up together as people, and the obstacles we have encountered throughout our relationship have just strengthened us I think. People think I am brave to have gone through the past year or so, but I had no choice. He could have walked away but never ever did.

Monday marked our anniversary. On Monday evening, on our way to a restaurant in London, A got down on one knee and proposed. I may have cried... A lot.

I am the happiest girl in the world right now. I cannot believe my luck so far this year, I am spoilt beyond comprehension and keep thinking that this is all a bit of a dream and I will wake up with a sharp jolt back to reality. A has always been there for me, he has been my rock, and now I get to spend the rest of my life trying to make him as happy as he has made me.

It strikes me that how others perceive you has a dramatic affect on how you perceive yourself. My parents have never ever allowed me to feel different, and I was most certainly never allowed to feel “ill”. One of my mum’s biggest fears is that people would tiptoe around me, treating me differently, leaving me out of activities and letting me get away with things due to my illness. They wanted people to get to know me as “Emily” not as “that girl with CF”. Consequently my parents decided not to tell anyone I had CF when I was born. At all. The other main reason for this was they wanted me to have the choice of talking about it to whoever I wanted, whenever I wanted. When I commenced primary school, they informed the headteacher (for safety reasons) but instructed that no one else was to know, and the good woman that she is she kept her word. I merely took my tablets to school in my lunchbox (something that would be grossly frowned upon now with all the health and safety regs) and no one else really needed to know - I could line up, run around in the playground, do PE and every other thing a normal infant had to do at school.

One day on the way to school (which was incidentally nearly a mile from my house, probably what stretched my lungs to be so strong and withstand all the pummeling CF gave them) I was skipping alongside a fellow classmate whilst our mums chatted, and we were talking about cartoons on television. She asked if I watched Captain Bucky O Hare or some such classic, and I replied casually “yes, actually I watch it before school whilst having my fizz” (which was my name for Physio). This left a rather confused friend and an appalled mother with the idea that my irresponsible mum allowed me to sit with a can of coke in front of the TV every morning. I believe she left them with this image for amusement purposes.

As I grew up, it quickly became apparent that I was perfectly happy talking to anyone and everyone about CF, and it became much more public knowledge. But by now I had a reputation for other things, for being good at English, enthusiastic about pretty much everything (whether I knew what it was or not: “I joined the choir today….mummy, what’s a choir?”) and for being undoubtedly the most talkative member of the class. So CF merely became a part of my personality, which people seemed to quickly accept as they already knew I wouldn’t fall apart and break at the slightest cough.

As I say I was never allowed to think of myself as ill. My parents were also fairly strict. Weight gain is a very difficult issue with CF and my parents would not tolerate me not eating at meal times. There was simply no other option. If I didn’t make a good enough attempt, the kitchen door was shut and I was left in there alone till I had eaten sufficiently. Whilst I rather suspect this is not in the CF Trust’s guidelines of how to deal with fussy eaters, it appears not to have done me any harm, and I have never needed any form of artificial feeding (NG Tubes or otherwise) as I am exceptionally talented in the force feeding area. Missing school was an absolute no no, unless I had an arm missing or similar. Again in my opinion good, as I quickly learnt that having CF didn’t allow me to get away with anything, however this also taught me that it didn’t disqualify me from anything either.

I am positive that my parents’ attitude and behaviour has made me the person I am today – all the good and the bad bits. Even the bits which caused me to howl with rage in my bedroom and write viciously about in my diary (well like any child really) don’t seem to have done the long term damaged that at the time I was clearly convinced their tyrannical behaviour would. I suppose I am in a round about way attempting to praise my parents here, but hopefully they won't read it. Particularly my mother as she will become impossible.

Just to ensure her ego doesn't jump too high, I will end with what I find an amusing and classic example which occurred today of why I perceive myself the way I do.

Scenario: Have just picked up my mother to drop my prescriptions into the doctors whilst I hover in the car.

Me: Hello! Did you have a lovely day?
Mother: Yes fine thank you, (serious tone) although I did have to leave work early to go and see the doctor.
Me: (somewhat alarmed) Why is everything ok?
Mother: No, I have had this REALLY BAD rash covering my face for about a month, it’s terribly serious. (proudly) I have been given a real prescription and everything for some important face gel.
Me: (somewhat confused) Really? (trying to be reassuring) I haven’t noticed it at all, honestly.
Mother: (in a fit of indignant rage at said rash not being taken seriously) that is because you are completely involved in your own health and haven’t managed to notice my serious MEDICAL ISSUES!

Cue stupefied pause followed by gales of hysterical laughter from us both.

I love my mum; she really does know how to bring some perspective to ones life.

Now I have finished telling the Harefield part of my story, (and enjoyed telling it) I am looking for other things to write about. Seeing as I am not convinced my life is all that interesting, is there any “chapters” people are particularly curious about? Otherwise, as you may have noticed, I shall just rabbit away randomly about anything and everything (surprised "surely not" faces please....)

Bit of a long entry here, sorry about that...but it is the end of my Harefield journey! Clearly not the end of the story though, as a whole new chapter in my life has now started, one I could only dream of being lucky enough to have.

Life on the ward was vastly different from the Intensive Care Unit. The atmosphere there was one I was much more accustomed to, of a more general ward with constant comings and goings of staff, but essentially a lot more privacy and also responsibility for me as a patient. I was still attached to the bi-pap via my trachi, but was able to spend increasingly longer periods on just oxygen, which was given via a high flow mask directly into the trachi. After a few days on the ward, I tried nasal specs for a short time, which was another huge step for me, as I was accustomed to wearing them and had been for the previous to years, so this felt to me like a move towards normality. My family were able to all come into the room (it’s two at a time in ICU) and we were together the five of us for the first time in months.

I would still await eagerly for the physio to come and take me out, and as I was spending more and more time off the machine, I was pushed to walk increasingly further along the corridor, with two physios in tow, one supporting my arm (I was still incredibly unsteady on my feet) and the other pushing a wheelchair so that when I became too exhausted they could push me back to the room. There was a white circle on the floor of the corridor, and I was informed that this is where people aimed to get to, and would then be made to do a little dance of celebration once they had achieved this distance. Having been told this I instantly decided I would reach it by the end of the week, and did so, triumphantly, my wobbly legs only allowing a short wiggle of a dance before I sat hurridly down in the wheelchair with a bump.

By now I was eating fairly normal foods, although everything still had to be soft and moist, as the trachi meant swallowing was still difficult. My family began to bring in bits and pieces of food for me – my grandma made a vegetable soup and drove it up, the cook at A’s work would prepare me little lunchboxes with a variety of salads and fresh foods – the home cooked taste was indescribably luxurious and helped increase my appetite and eagerness to eat.

My confidence increased with my progress, and I would try and stretch myself a little, by getting out of bed myself (a long and laborious procedure but I learned little tricks like rolling onto my side first before attempting to move to an upright position) and brushing my own hair. I was attempting to move back to the bed, a nurse next to me to ensure I didn’t slip, when I began to feel funny. Assuming it was a panic attack (which I hadn’t had for a while now) I told the nurse I needed something to calm me down and that I was struggling to breathe. Before I knew it another nurse was in the room, he’d been watching the monitors outside and my heart rate had spun out of control. As the two of them moved me back to the bed, I lost consciousness. I came round to find about 7 people in the room, attacking me from all sides, and the bagging mask on my face. Apparently I had passed out and my CO2 and jumped through the roof. Whilst they attempted to get an arterial line back in the doctor had bagged me, and as soon as she did I began to regain consciousness. I lay there, my eyes refocusing slowly and heard the doctor say “sorry I called you back, I thought we were going to have to shock her”. I glanced sideways to see the crash trolley primed next to me.

My mum had been called and arrived about 20 minutes later. Weirdly, in spite of what I (and everyone else) feared, this episode didn’t knock my confidence as much as it should have. The team investigated everything they possibly could, and several different specialists came to see me, but it was decided that this was probably (and hopefully) a one off weird reaction, and that it wouldn’t happen again. With this evaluation of events, I narrowly escaped returning to ICU for closer monitoring, and decided to try and continue moving forward as quickly as possible, to prove to them all that this was a mere blip in my recovery and I was actually still progressing nicely.

In spite of early hopes that I would be well enough to attend Laughter for Life, March 4th loomed and it became obvious I would not be up to it. As upset as I was (we had worked long and hard on this and I wanted to see the fruits of my labour, let alone meet Bill Bailey and Dara O’Briain!) I knew how lucky I was because at least the reason I was missing it was due to my newly instated working lungs. Adam’s sister came and sat with me for the whole evening, we watched Will and Grace and munched on a takeaway and had really quite a pleasant evening. After the show was over, Bill Bailey phoned me to let me know it had gone fantastically well and that it was one of the best charity gigs he had ever been involved in (due to still only being in the early stages of relearning to speak I managed not to squeal down the phone at him).

On the 5th March, it was decided that I had managed to spend enough time on oxygen alone to warrant a sleep study minus the bi-pap. I was slightly nervous but by now was enjoying the feeling of breathing unaided, even though it was still slightly hard work, and was much more confident in my new lung’s abilities. The following morning, the team strode into the room. “Well your numbers look fine, let’s get that trachi out shall we?” the doctor said, rolling up his sleeves. I immediately panicked at the idea of this new change in the amount of support I was receiving¸ but the SHO reminded me gently that they wouldn’t do anything they weren’t convinced I was ready for. So the neck collar and the fastenings were loosened, I was instructed “big cough”…and out it came. As I breathed in I could feel the air whistling through the hole in my neck (not particularly pleasant but not painful at all) but they stuck a plaster on, informing me that the hole would heal itself within a week or so. As we sat waiting for me to become accustomed to the lack of tube protruding from my throat, the doctor glanced at the monitor. “Your sats are good, 98%...ok let’s loose that oxygen shall we? And the NG tube whilst we’re at it.” The NG tube was removed, making me cough a little, and then my nasal specs were taken away from me.

I felt almost naked, that there was something essential missing, I suspect you would feel something similar if you went out without shoes on or something. I had been wearing oxygen full time for 2 years by then, and over night since 2003, so suddenly having no tubes at all felt incredibly weird. After about 5 minutes I tried to suggest that perhaps I did need it for a little longer and would they please give it back, but the doctor merely laughed and replied that I no longer needed it…my lungs were working. Once the team had left, I got off the bed and wandered slowly round the room. No tubing to hold onto and to watch that I wasn’t pulling too far or to tangle round the bed, just freedom to move. That evening my sisters arrived and saw me tubless for the first time in years. They instantly clambered on the bed with me, able to get close to me without wires and oxygen getting in the way.

The following Thursday marked the birthday of a rather special mummy, and all she wanted was for the whole family to be together. We discussed the idea of all getting a takeaway and squeezing into my room, but it was clear this would be a)near impossible and b)require great skill as people would have to stand up balancing their plate and another dish as there was virtually no surface space either. As we talked through the options, I toyed with the idea of leaving the hospital. I was terrified at the thought, I hadn’t yet left the hospital grounds, and the idea of being further than arms reach from a nurse was not a comfortable thought. However my mummy’s special day overrode my fears, and I cautiously agreed to accompany them all to a restaurant. We took two cars, incase I needed to return quickly, and sped off to a small Indian restaurant in the village. As we drove out of the gates my stomach flipped over. I was setting off with no oxygen, away from medical intervention, to have my very first independent experience with my new lungs. I was still lying down for the majority of the time so sitting up in the restaurant was hard work. The meal was lovely, my mother was beaming from ear to ear, and we all toasted to my first attempt at freedom.

The next week, the team strode in as usual to ask their usual questions and perform their usual tests. A and I sat there half listening, half continuing to chat when the main consultant said “well things are looking really good. Best possible outcome judging on today; discharge next week.” Stunned I muttered something along the lines of thank you, and they swept out the room closing the door behind them and leaving A and I to say in unison “oh my GOD!”. I phoned my mother immediately who became somewhat hysterical and even louder than usual. It had gone from looking like I would be in for months and months to suddenly talking about me being at home, full time, with my new lungs.

On Friday 16th March, my mother arrived at Harefield and entered my room for the last time. Two HCA’s had been in all morning, painstakingly removing my cards one by one from the walls, and helping me gather my mess into relatively organized piles to transport back home. We attempted to act as though this were a normal visit, both of us secretly afraid to say anything about home incase someone came in and suddenly told us there had been a change of plans. As my mother took the final bags to the car, I began my final slow amble down the corridor, hugging various nurses and promising to take good care of myself. I pushed the door open and the cool breeze hit me hard as I stepped outside. The car pulled up and I slowly eased myself in and fastened my belt. As we started moving forward my mum looked at me, grinning manically. We drove through the gates, shrieking, a cross between laughter and tears; the initial part of this journey was over, and life with my new lungs and a wealth of opportunities, experiences, triumphs and challenges was about to begin.

Oops, not quite the promised next day update then!

Harefield went fine. I was dropped there early in the morning and went and performed the obligatory tests. As soon as I saw the lung function numbers (which were considerably higher than my readings at home) I knew I would be ok to go home that day. Which I duly was, sent away with the warning that if the wheeze doesn’t disappear and the lung function continues to be silly then I will need a bronchoscopy for further investigation. If my memory serves me correctly I spent the whole of the last one I remember begging them to take the camera out, so good luck whoever has to perform that.

This morning was great fun, with Watchdog coming to film a very short “what’s happening now” clip for Wednesday’s programme (there no one can say I don’t tell them now). I will probably appear for all of 30 seconds so really not worth setting your video for. The crew took me to my local park – the last time I went there I was sitting in Denzel, with a cylinder of oxygen by my feet, wrapped in layers and glowering as I was cold and did not wish to be outside (charming patient I know). Today I walked into that park, across the grass (Denzel was never a fan of grass so it’s quite a novelty) and we filmed me sitting on the swings; something I haven’t done for a long time as I suspect a Clairette (oxygen cylinder) flying at a child’s head would count as a slight health and safety liability. There is something about sitting on a swing, I think it takes you back to a happy carefree time in your life and just makes the world seem bright, safe and accessible. I may or may not have swung back and forth like a child until I was asked to remain stationary for filming purposes.

So the filming was fantastic fun, and I got a little outing whilst doing it. And as always when I do these media things I got to meet a group of new people; I love meeting new people, although I now tend to talk so much not one of them can get a word in edgeways.

My main task next week is to join the gym. I now have clearance from Harefield to do so (they mentioned something about taking it slowly but I don’t really remember what they were saying) and I just have to pluck up the courage to go and join. It’s a fairly daunting prospect as I have never been sporty (it was a lung transplant, not a personality transplant) but I am excited at the idea of training properly for the Hydro active (for which we now have a team of over 40 Angels – places are filling up fast so hurry and get in touch if you want to join us!) As much as I try and convince myself, I am not sure that shoe shopping really counts as hard-graft…

Incidentally, I have discovered the perfect excuse for purchasing yet more new shoes. Wear completely impractical ones that hurt your feet within 10 minutes of entering the shopping centre, complain loudly, and your other half instead of berating you for filling the only shoe cupboard in the house to the brim, will be only too pleased to accompany you into a shop to purchase yet another pair…

Quickest of quick posts to say that Harefield went fine today and I am home (yay) and will write more tomorrow when my eyes are not insisting on closing of their own accord!

I had the BEST weekend (mind you I seem to be starting the majority of my sentences with “I had the BEST…” recently).

A had clients to see/business to do up in Manchester, and for the first time, I was well enough to go with him. As we planned the weekend, scheduling in when he would be busy working and where I would go and what I would be doing, I began to get quite nervous; I haven’t been an independent adult before really, not since my first year at Uni anyway. In recent years I have always had people around me to help me and to accompany me, and have never really been anywhere I don’t know, as hypothetical problems would arise such as “what if I get into difficulty breathing or get tired? What if I run low on oxygen? How can I get back quickly if I am in unknown territory?” Due to these questions being fairly foreboding and unanswerable, I tended not to stray to far from familiar ground. Not to mention of course the mandatory “stay two hours from Harefield” rule which penned me in somewhat.

Anyway, I was most definitely scared of going, just a general fear of the unknown and of behaving in an adult fashion (something I am really not accustomed to doing). The drive of people I would see up there and things I would do however was enough to override this (along with A’s reassuring words of “don’t be silly you’ll be fine”) and we set off “oop North”. Our first stop was Liverpool. The first night we stayed at a beautiful Hotel, which overlooked the huge expanse of the local park, green as far as the eye could see and uninterrupted except for the odd early morning dog walker or jogger. The next day I joined my friend, an ex-flatmate of mine who knows me so well it’s annoying and who now studies in Liverpool. It was fantastic to get to actually see her life up there, what she is up to, meet her friends, go out to some of her local haunts…all things I never thought I would be able to do.

On the Saturday, I rejoined A, and we headed over (notice I use the word “over” instead of a geographical direction as I don’t have a clue where abouts I was in the country nor where I was headed) to Derbyshire, to visit my granddad, who is one of my heroes in life, and who incidentally is 91 and just got a mobile phone. It was an absolutely glorious day, the sun was shining and Derbyshire is just so picturesque. We sat basking in the warm sunlight and talking until late afternoon, when we set off back to Manchester for the final leg of our journey.

We stayed with A’s friend (I was last able to visit him over 4 years ago) and I was spoilt rotten and treated like a princess - two things which I am quite comfortable with. On the Sunday I was able to meet up with Mr Pimpdaddy of pimpthatsnack fame, and his lovely lady, both who have been incredibly supportive to me and the Live Life campaign (see people are just awesome, I know I say it all the time but it’s true). This meeting resulted in the taking of muchly photos near a tree which was adorned with paper flowers and butterflies (I liked the tree and insisted that all pictures be taken with it included.). they dropped me off on the main road, and I wandered back towards the flat. I hope no one was watching me because I may have looked like a madwoman; I was beaming from ear to ear and laughing to myself, just the sheer overwhelming pleasure of being alive and being able to have all these experiences. Life isn’t about the huge stuff you know, major aims, aspirations, ambitions…those are important of course but it’s all the little bits, the moments which are happening right here, right now, that make it what it is.

After a truly spectacular weekend, it’s back down to earth with a bit of a bump today as my lung function, which has been beautifully behaved so far developed a mischievous streak and dropped by over 10% today. Dutifully, I telephoned Harefield and have been asked to come up tomorrow to be checked out.