My grandad was an extremely generous, humble and loving man. We had to say goodbye to him yesterday, and though it was very sad, it really was a celebration of a wonderful man who influenced many throughout his 95 years. The number of people there was particularly incredible for a man of his age, and showed, I think, how loved he was.

Grandad quite simply took pleasure in everything about life. He had by no means had the easiest of lives, one of the most difficult periods being when he was captured at war, and held in a prisoner of war camp for 3 years. In the reading given at the service yesterday, it said how incredible it was for someone to come through all of that and not have a shred of bitterness. I completely agree, but knowing my grandad, I am not surprised.

I loved listening to my grandad's stories. He would often talk about his life when he came home from the war, was reunited with my gran, and lived in a little caravan which he bought with all the money he had. He said those were some of the happiest years of his life, because he was reunited with my gran, and they were both safe and well, and able to start a family. Family meant more to grandad than anything else in the world.

My grandad never stopped being facinated in life, and all that it had to offer. He was still going to literature classes at the age of 90, and loved huge Everests of literature such as Pepy's Diaries and War and Peace. He was so knowledgeable; I remember phoning him when I was at university, and telling him about the book I was studying (Candide). He listened with great interest as I told him my thoughts on it all, before quoting the final line of the book, beautifully, and off by heart. He was so humble, that I never even knew till yesterday, that he had been awarded a BEM.

One of my favourite memories is sitting at a pub in Derbyshire with him and A, and he picked up the OAP menu saying "isn't that lovely that they give the old folk a special offer." He was about 87 at the time. One Christmas, we were at his house, arguing about who was number one at the time, and he interjected with "no it's actually the Spice Girls" which was, of course, correct.

The biggest thing that my grandad taught me is that you can be completely satisfied with your lot, and yet still push yourself to better yourself, to learn and achieve more, and to explore the world in greater detail. It seems like two very opposing points of view, but he managed to do them both. He wanted for nothing, except for his family to be happy and thrive, and I've lost count of the number of times I heard him say "I'm a lucky man". Truth be told, I think we were the lucky ones.

"I feel that I cannot vanish, since nothing vanishes in this world, but that I shall always exist and always have existed." - Leo Tolstoy

"Rich is excited about what the future might hold"

That's my mate Rich's facebook status at the moment.

A couple of weeks ago, Rich was in the Brompton hospital where he had been living for the past two months. He was unable to do....well, anything really. He was using a bi-pap (non-invasive ventilator) pretty much all the time just to keep breathing, he was extremely ill, and his quality of life was poor to say the least.

Rich got his call for his new lungs and new life in mid-june and so far, is recovering extremely well. His facebook status brought tears to my eyes as that's exactly the point; Rich is now able to contemplate the idea of a future. Of new and exciting possibilities. Of persuing dreams and ambitions. Of simply being around for family and friends. There's a chance, there's hope, there's more to come.

Yesterday I logged onto facebook to read that Donna Mansell - an avid campaigner who was waiting for a new heart - had died. Donna leaves behind a grieving husband, and a seven year old daughter.

This is the very real reason that we need to keep campaigning for more donors and for improvements to the transplant system in the UK. If it wasn't for my donor, the top of this blog would now read "1984 - 2007".

National Transplant Week starts this Sunday and runs all week. Please take the opportunity to raise Organ Donation with someone who might have never even thought about it before. There are events happening across the country; you can join in in a thousand different ways, and make a difference.

Let's give more people the chance to think about what the future might hold. The chance to contemplate careers, families, mortgages...all those things that most of us take for granted.

Organ Donation saves lives; the lack of registered donors kills. Please, think about it, talk about it, do something about it.

Thank you.

Jess.


I've started rewording this blog now for the umpteenth time so I'm just going to write; I keep worrying as to whether I am saying the right thing or not. I need to just write.

I am missing Jess very very badly at the moment. We texted back and forth most days and it hurts knowing she hasn't made it, that her glimmer of hope came too late. She should have made it, I think I am angry as well as sad, she should have had her call earlier. Four and a half years of clinging on is just not fair, and consequently, her body was just not strong enough.

Instead of going on and on about the sadness and the ache which is currently making me feel quite blank and flat (this is my blog, I'm allowed to be selfish) I'm going to talk a bit about what I loved about Jess and more importantly, what she taught me.

Jess was the strongest person I have ever met. Literally. When we went up to decorate her hospital room at Christmas, she was fighting so hard I have no idea how her body was doing it. Mentally, she never ever gave up either. She had a determination in her, a fire that made her so sure of her path and gave her such a focus. It inspired and motivated me to do more.

Jess had a huge heart. She was in hospital having a rotten time when I put up some sort of sulky status about something completely mundane I was annoyed with and the text came through almost instantly "Are you ok? Thinking of you x" Typical Jess always thinking of others; a memory that several other people have conveyed to me in their messages for her condolence book (which, incidentally, if you'd like to contribute to is open to anyone - no matter whether you knew her or merely knew of her and were touched by her - email me for more info). When I was in hospital for IVs this November, I texted her one day saying I was sending her all my mendy vibes and she texted back saying "no please save some for you."

She had a fantastic sense of humour. When Holly and I went to film with her for Battlefront, we spent most of the time being gently reminded by the crew that this was supposed to portray the severity of life on the list. It was hard as Jess' nature was to laugh and smile, and we all kept giggling and gossiping. We did get the filming done in the end and Jess' contribution to Holly's Battlefront episode - her frank portrayal of life waiting for lungs - was a vital one.

She reminded me what is important. Jess absolutely adored her family and her friends, and would tell people that they were special to her. When she decided to do something, she got on and did it, never mind whether it was practical, easy or virtually impossible. I think post-transplant, it is easy to loose some of that spontaneity, to forget to tell people regularly how much they mean to you. I intend to remember that.

I am definitely struggling with survivor’s guilt. I know it’s not uncommon and I’ve felt it before when losing friends with CF, but it’s pretty full on at the moment. Why on earth am I so special that I got this magical chance? I know the answer of course; it’s because there is no rhyme or reason. Just because Jess gave and gave and gave and fought harder than was probably humanly possible...effort sadly does not guarantee who gets the winning hand. Our paths were so similar in so many ways; both pretty stubborn, both fairly high-profile fights, then she decided to do the Hydro Active... I felt like she was a younger version of me. Perhaps because of that, I had a naive subconscious belief that she had to make it through, because I did, so it was only logical. I hate that I was lucky and she was not. I told you, my blog, my ramblings. My thoughts are with her incredible family and those closest to her; I cannot imagine just what they are going through.

Jess fought for what she believed in. She believed very strongly in organ donation, so instead of sitting around she got up and fought. And never ever stopped. Ever. That’s my biggest lesson; to live and laugh, to love those around me, and to fight for what I believe in. And to never, ever stop.



www.justgiving.com/jesswales

Images courtesy of Holly Cocker - thank you Holly x

I think most of you have heard the heartbreaking news about Jess, but this blog isn't about that, as I can't write that blog just now. In fact I'm struggling to write anything coherently at the moment; my words seem to have escaped me, all words, my ability to type and to write. It'll come back, I'm sure it will.

This blog has been triggered by a girl called Tori who is waiting for a double lung transplant. Her post that got me thinking is here. She actually keeps two blogs, the other one can be found here.

Reading her post about sharing her story publically got me thinking. Particularly this bit:

When I talk about my CF I try to emphasize all the positives, tell people what I'm still able to do and how although I might feel crappy now I'll be better in a few days. I decided to submit myself to Live Life to Give Life as a face for their media campaign and am now having to forget all the positives and focus on the hard stuff, otherwise am I a good person to motivate people to sign up to the organ donation register?

I started reading back through my blog to see how I spoke about the struggle to keep going whilst waiting. I think this month gives a fairly good mix. I think (and hope) I spoke honestly, with a mixture of good and bad, because I truly believe that you can give a balanced picture. The illest of ill people laugh and smile and have good times. And maybe by sharing your personality it makes the story even stronger?

Life isn't black and white, therefore adding colour and texture to the picture you are trying to paint makes it more realistic...doesn't it? Then again, in order to highlight the urgency, it is important to focus on the severity. I know all too well that mask of "I'm fine" that people waiting for transplant painstakingly paint on. You have to, because if you start thinking about how hard life is all the time, it makes daily life pretty hard to face. But if you don't speak the truth about how hard life can get, can people really understand?



Yes that's me in 2006 in a nightclub. With my oxygen on. Looking a tiny bit blue.

I'm not attempting to answer questions here, I'm just very interested and grateful to Tori who gave me something else to think and blog about.

Apologies for the scatty and poor writing; any ideas or opinions on this would be great. And do stop by and say hi to Tori on her blog as she continues to write about her life, her wait and her hope for transplant.

My next blog will be about Jess. I just have to find the words.

ohmygod ohmygod ohmygod.

This weekend I will be in Scotland walking along the coast. I am terrified. Not on my own though....with 170 others, all of whom are walking as part of Team Jac to raise money for LLTGL.

I'm looking forward to it hugely but that is nothing to do with the walking part, that's because I will get to see Jac and chat to her properly for the first time ever. WOOHOO! Last time I saw her was when she spoke at Scottish Parliament for LLTGL; she was looking pretty frail and her voice was very quiet due to lack of breath I'd imagine...I can't wait to see the difference.

Jac has worked incredibly hard to put all this together, if you take a look at her fundraising page you will see just how much organisation has had to go into all this! I am going to try and do some filming and take piccies so we can capture what looks to be a fantastic event. Please sunny thoughts for us all on Saturday!

This week has been very very sad as gorgeous little Ethan lost his fight. There are two beautiful articles here and here about him. All of us at LLTGL are totally gutted for him and his family; a truly inspiring and lovely little boy who, during his short life, inspired thousands to register as organ donors. His family are very much in my thoughts right now.

Ethan and his Robyn's Rainbow.

And yet another week goes by without me posting...

...but let me assure you it was a fantastic week!

The concert (which I had been losing sleep over I was so nervous) was absolutely fantastic. My Choir did me proud, and the performance was full of heart and energy. We have received loads of compliments including a letter to the school from one of the audience members, so it was most definitely a success. Thank you so much to all of you who sent good luck messages or who came to see it.

Very exciting thing this week....back in June 2007, Robyn and I decided to create a booklet on CF and Relationships, as we felt there was little support material out there on this subject. It was Robyn's idea originally and I said I'd love to join her in doing it. Sadly Robyn's transplant didn't come in time and naturally the project ground to a halt.

However after her family mentioned to me how much she would have liked the project to be completed, the wonderful Jac offered her assistance and suddenly we were up and running again!

Around 60 pwcf and/or their partners contributed to this booklet, and after many many MANY hours of work (far more on Jac's part as she fought with all the layout, design and proof reading) it is finally finished!

The booklet attempts to touch on all sorts of potential issues arising from CF being a part of a relationship; from starting out, to moving in, from sex to fertility, to end of life issues. All the content is provided by real pwcf and their other halves, and it is their contributions that hopefully make the finished product such a valuable resource.

The CF Trust have put it on their website for download, which is v exciting recognition of the work that has gone in, and the wonderful Gary Torrance Memorial Fund has funded a batch of booklets to be printed so we can send them to all the specialist adut CF units across the country.

Seeing it all completed made me feel both happy and sad; thrilled that we have completed it and that hopefully this will really help people, and saddened that Robyn will never get to see her idea as a finished product.

Last week of work before Easter hols for me this week - after Friday I am actually quite ready for the rest!

It's been a sad 24 hours as we lost Toria (above) after a long and valiant struggle with CF. Toria leaves behind not only a grieving family but an 8 month old little boy. Take a look at her blog at some point; she was an extremely talented and open writer and it’s well worth a read. Along with feelings of heartache for her family, it has raised some hot emotions and some frank confessions.

I don’t really want to write too much on the subject as the most important thing is to remember Toria and what a wonderful vibrant and strong person she was, but to the Anon commenter on Oli’s blog, his feelings were only as judgemental as yours. Humans feel deeply and passionately and sometimes feelings are driven by emotion. No one can help that; that is why you wrote what you wrote and why Oli felt what he felt (which he is shrewd enough to observe about himself in his blog). As far as Toria goes, I’m just so saddened; she was a truly feisty woman who I was privileged enough to talk to on many occasions, and will be greatly missed by everyone who knew her. Thinking of her wonderful family, L and E at this sad time.

Moving on....I had another blood test last week which brought me back down to earth with a bump as my creatin (or apparently creatinine? Did I make the first up?) has risen again to 134 – highest it’s been. Humph. I am awaiting further instruction from Harefield. I’m feeling great (yay!) but I suspect they will want to try this new Immuno and have to confess I’m scared. Scared because I have been so so lucky. No rejection so far (touches wood 1000 times) which is almost too good to be true. And the cyclosporin is the only drug which I have been on consistently since day one, so it’s hard not to attribute my good fortune to this.

As always, the most important thing is to listen to my team, so this is what I am planning on doing. They’ve seen all this before and have told me already it’s a fairly common side-affect of cyclosporin, so whatever they say goes. Even if I do have a bit of a pout about it. My potassium was too high to but a) I don’t know what that means and b) apparently it can be caused by the “trauma” of taking the blood (I had 5 attempts with two people trying) so they’re just going to re-do the blood tests; probably nothing at all to worry about.

Lung-wise? They are awesome. Work wise? I am happy, busy and feeling very fulfilled. Life wise? It rocks and I love it.

I woke up very early on Friday morning. When I say very early I mean I had only gone to bed a few hours before and should have been sound asleep. The culprit was my hands, which were feeling rather odd and throbbing a bit, as well as feeling....well, clownish, which isn't as amusing as the description suggests. Just almost numbish, achy and awkward.

Being a mature grown-up independent woman I promptly woke A up to tell him (as clearly he needed to know at 3.20am that my hands felt a bit funny.) We couldn’t see anything visibly wrong and I eventually got back to sleep.

When I got up for work I jumped out of bed (am still in the process of loving my job) and yelped in pain as I put my weight on my right foot. It felt like I had sprained it, thoug I was fairly convinced that unless A booted me out of the bed as penance for my earlier disturbance, I couldn’t have physically done anything to it.

As I attempted to get ready for work I quickly realised this wasn’t going to happen. I was lolloping along like a doll that’s lost the stuffing out of one leg and couldn’t grasp things as my hands were too sore. A tad worried by this stage I decided to retire to bed and phone Harefield. The on-call wasn’t sure it was related to transplant but couldn’t rule anything out either so suggested I ring in again when the transplant nurses are on duty.

I am not very good at having health stuff going on and not understanding what it is (you can imagine what a joy this made me to treat post transplant can’t you) so got straight online to talk to any other CFers/post transplant people who might have had a similar experience.

I hobbled to the GPs to get a blood test on Harefield’s recommendation and the GP confirmed what a friend of mine I had spoken to online had suggested it might be; “I suspect it’s CF related arthritis”.

I was not amused. I don’t know much about this element of Cystic Fibrosis and anything you don’t know about is instantly scarier. From what I understand, there is no exact diagnosis for arthritis, it’s just if you show symptoms for some time I guess you have it. Today things seem much better, fingers still a bit sore and stiff, and I am a tad limpy still, but definitely better. I shall wait and see what happens, and try not to panic about silly things such as “oh god, how am I going to do the adidas challenge then?!” when we have no idea whether this actually is, or even if it is how it will behave. For all I know it will fade away and this will be the only flare-up I ever have. Or it might be totally controlable....we will wait and see.

On a much more sombre note, the CF community was all very saddened yesterday as we lost Samantha, known to most as Princess Sam. I had known her for some time, in fact she had wandered to my room when I was incarcerated with my old lungs, a chest drain in situ, to offer to order some pizza on my behalf as I was unable to move.

Sam’s health deteriorated and she spent the last 6 months pretty much living in hospital. During this time she held her head up, kept on going, and even did an interview with Cosmopolitan magazine to raise money for the ward she was stuck on at the Brompton (said interview will be in June’s edition and which she told her mum she still wants to go ahead...even though she will not get to see it.)



If you get a minute, please do have a read of Sam’s blog. It’s incredibly open and honest, and frank just tells it like it is really. She was a wonderful girl with a huge heart and will be very very sorely missed. Her family and her friends are in my thoughts right now, and I just wish so very much (and get cross thinking about it) that she had received the transplant she so desperately needed and so richly deserved. As Oli points out on his blog, it makes absolutely no sense why some of us are saved and others die, all we can do is use this sadness to fuel the fight to raise more awareness. Job for today if you are reading folks, please show people this beautiful girl who lost her battle yesterday and tell them to get online and sign up to the organ donor register.

Thank you

Robyn’s funeral was yesterday. It was a beautiful ceremony, but I was just filled with aching sadness throughout. I was determined to be brave but as soon as the cars pulled up the tears started to flow. I was on my own but a few of her friends were fantastic and looked after me, in spite of their own grief. Her family were indescribably brave, filled with dignity, coming over and saying hello, and even thanked me, when all I felt is that I failed.

I am fully aware that I could never have saved Robyn all on my own, but I think with Live Life Then Give Life’s recent successes (Peter, Lisa, myself) I have been on a bit of an over confident streak, that things have turned around. Losing Robyn was a blow to us all, and watching all her friends yesterday clearly a shock to everyone who knew her.

On a truly personal level (this is my blog so if I can’t state it here where can I) two new things happened today. For the first time I experienced survivors guilt. Watching someone who could have and should have been in my position, been where I am standing now. It coursed through me, stinging from head to toe, why was I still here when Robyn wasn’t? It made me ache and her family’s gentle kindness made it even more so.

The other peculiar thing was that I got to see my “alternate ending”. This is what would have been the end of my story if it wasn’t for that one person making a decision. I couldn’t help but relate things I saw back to myself – the friends, the parents, the long-term boyfriend – and it was strange seeing what could have been.

I came home cross and tired. Cross with myself, cross with life, still tearful at the loss of a life that need never have gone. I ached for her family to get her back, for this to be some sort of Hollywood movie where then they turn back time and show what can happen if you change things, but Robyn is gone, another life lost due to the shortage of organ donors.

As I left, Robyn’s mum hugged me and as she was squeezing me tight whispered “don’t forget how precious your life is.” Which will be the key thing I try to take away from yesterday and I hope blog readers will too.

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

If you read this post here you will know who I am talking about. Robyn was a beautiful, petite blonde smiley young lady. Incredibly clever she was working on her Masters whilst battling her CF and waiting for her transplant with a positive and cheerful smile on her face. We were working together on a relationships study for people with CF in the hope that we could produce some sort of help booklet at some point. We chatted via msn and via text, rarely by phone as she didn’t really have enough puff – it’s funny how someone you never see in person can become such a good friend.

When Robyn spoke at National Transplant Week this year you could have heard a pin drop. When she got so breathless someone had to take over, the impact was clear. She volunteered to talk to the media for us to try to get the issue of transplantation an even greater profile. She was on GMTV for Transplants in Mind and was their poster girl for this year’s campaign (click and click).

On Tuesday afternoon Robyn lost her fight to CF. I’m just terribly terribly sad; for her, for her family, for her lovely boyfriend. She waited over two years, she remained positive, but that call never came. For me it’s an even greater reminder of why we continue to campaign and also why I am walking on Sunday in aid of the Cystic Fibrosis Trust. She never let CF dictate her life and will be greatly missed by an awful lot of people. Thinking of her family and friends at this sad time.

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)

A small break in the story here to return to my usual rambling as I need an outlet tonight. Lisa, a friend of mine waiting for transplant is having a very rough time. She has a nasty infection and is currently on a ventilator (she was the other CF girl on Watchdog).

The frustration is unbearable. I am so lucky, I have had my life saved by that gift of life and now face a possible future full of quality and experience, possibilities and opportunities and yet 50% people who are in exactly the same position as I was will never ever get this chance. I campaign as hard as I can but I can’t reach everyone and tell them all what a miracle organ donation is. She deserves this transplant, everyone waiting deserves it, it just doesn’t make sense. Tonight I am writing to two very wonderful women, both mothers of people with CF who never got the chance of a transplant and yet still sent me wonderful messages of support and congratulations when I received mine. Some people in this world are so big and so full of dignity and courage it makes me feel very small indeed.

When thinking of friends waiting, or friends I have lost who never got the chance, the self-centred part of me is filled with a quietly despairing “why did I get the chance and not them” which is silly as there is no rhyme or reason, just chance and luck and then we must make the most of what we are handed. I almost feel guilty.

All I can do I think is make sure I appreciate the hand I have been dealt and take every opportunity offered. I have been given a truly wonderful gift, and I am determined to make every minute count, for me, for my family, for all those waiting, those who have lost their battle and most importantly, for my donor. Please keep Lisa and all those waiting in your thoughts tonight. Thank you.

www.livelifethengivelife.co.uk
www.uktransplant.org

One of the people I was referring to who I was on the ward with lost his battle to CF on Saturday night. He was a member of the CF community who use the message boards, and I had been in hospital once or twice with him. Sadly it is the same story; he waited, hoped and fought for a transplant which never came. I spoke to his mum quite a bit on the ward as when I saw her sitting in the corridor, all I could see in my head was my mum having to wait outside the room whilst they worked on me when I was so ill in the summer, so I just sat with her and we talked about anything and everything really. It is always very sad when we hear of a fellow pwcf’s passing, and I think particularly poignant at this time of year. It makes me all the more determined to enjoy and appreciate my Christmas.

What I omitted to mention in yesterday’s blog was the tremendous busyness that has been the last week. Someone (ahem - Emmie) came up with the bright idea of launching a Christmas Live Life Then Give Life campaign – a sort of mini-media hit revolving round the idea that this is the season of giving and goodwill, and linking that in with the gift of life. We are already working on quite a big project (all will be revealed…) but Em’s ideas are usually good ones and we like to keep busy, so true to form we stumbled forward enthusiastically without really stopping to think it all through.

We emailed various people we know who have been touched by transplantation and a whole host of them wrote back saying they would be more than happy to take part. We then came up with the bright idea (the majority of bright ideas associated with me are followed subsequently by the phrase “it seemed a good idea at the time) of learning to write press releases ourselves, as our Media Guru who usually does them for us is juggling about a million and one projects at present. So under her careful guidance, we attempted to sit down and write a press release for each person. Seemingly very simple; in reality, oh so not. Actually I don’t know why I am trying to make it sound as if I didn’t enjoy it because I did, I loved every minute (apart from the late at night minutes where I couldn’t get the wording to sound right and wanted to drown my laptop in the sink). We worked pretty hard on them, as these are not only important to us because of the awareness raising potential, but each individual story is about someone’s life, someone’s struggles and someone’s emotions therefore you have a responsibility to do each one justice. Excitingly every single volunteer had at least one result from their press release, be it a local paper, radio station, or TV. One of them even made the community presswire (a national newsfeed) and can be viewed here. We are overjoyed at this response, and of course very grateful to each and every volunteer, as without a "face" there is no story therefore no awareness (the family featured in the community presswire release won't even benefit directly from this which makes their effort all the more humbling).

I’m so glad I have this to keep myself busy with, as my lungs have been struggling a bit since I got home. I was feeling so much better when I escaped from hospital therefore dived back into life with a great deal of enthusiasm and energy which they were incensed by and are having an almighty strop this afternoon. It’s hard, very very hard, not to get despondent about this; I disappear off into hospital and somehow in a child-like naivety I still expect to come out better. However the team did say to me that this might not be an infection it might simply be my new “level” in which case I need to learn to manage it, rather than focus on improving it, and a hugely simplified way of managing things is doing less. Easier said than done when talking is the ultimate problem…I think I am quite lucky it is talking in a way, it creates a rather odd situation where at one end of the scale ultimately the most frustrating and difficult to comprehend thing to find labouring, but at the other those exact points create an amusement factor based on the irony of the whole situation which I think keeps me sane. Or insane depending on your view point. This is turning into incomprehensible waffle, I think I should stop. Now all I need to do is take that piece of advice and self-discipline and apply it to my every day talking habits…

Even pink people who are made out of pretty strong stuff (the stuff brighton rock is made from or similar) reach a breaking point, and I reached mine today. It was an imminent cracking to be honest, I have been feeling increasingly more down despite attempts to pep myself up and knock myself out of it (not in the unconscious sense although that is something I shall bear in mind).

Due to having lots of time to think, I usually try and work out why I am feeling the way I am, psycho-analyze myself I suppose, and I think I worked out the root of my inability to sleep today. This thing of not being able to relax and to rest, and jerking awake every time I start to drift off – you know that feeling you get where you are falling and then you suddenly start and snap awake – it is happening with regular monotony. What should be a pleasant feeling of relaxing, muscles easing, breathing slowing, is somehow making my body click into an alert and fighting state, and I think (after a long and very cathartic conversation with a friend) that it is linked to the day I was transferred to ICU. As I said in my blog describing that day, I felt incredibly calm, peaceful and comfortable really, and yet of course was fully aware that I was actually fighting for my life, and at that point was very much losing the battle.

I think that this experience of feeling so comfortable juxtaposed with the knowledge that at that point I was in danger of dying has instilled a new fear of me, which I managed to vocalize to a doctor today (despite feeling thoroughly stupid and melodramatic whilst saying it) I think my body is scared of falling asleep and never waking up. There. The second time I have said it, well written it, and it brings on the tears again, but followed by a nice lift of weight from my shoulders. I do feel ridiculous saying it, as clearly I am nowhere near where I was 9 weeks ago, but my brain is struggling to cope with it all. These inbedded and unresolved fears, plus tiredness caused by them, coupled with todays X-ray revealing that just 24 hours after coming off suction my lung has started to deflate again meant the tears finally flowed today. Quite significantly.

I think that is a good thing, everyone needs to have a good bawl now and then, it’s healthy, and helps you pick yourself up and brush yourself off again afterwards. I am not going to be any kind of martyr however and am enlisting a bit of extra help and support. The team here really is great, they are going to work hard to help me get back on track, and if that means a team of people help me, denzel (my wheelchair), the O2, the drain, and the suction pump sit outside to have a coffee, then so be it! I am also going to speak to the psychologist here, think it will do me some good, and there’s quite a bit of the last 9 weeks that I haven’t really worked through yet. Lung wise, due to obstinate sagging of lung, the suction has been re-attached which of course throws a spanner in the works of the whole injecting the germanpowderstickyuppydrug, as the lung has to be up and touching the lining in order for the drug to stick it, otherwise I will just end up with a furiously inflamed and sticky lung waving wildly around a small airspace or something similar but more scientific and slightly less dramatic. We aren’t quite sure what to do about that yet, but the doctors are working on a new plan, and I will just stay on suction in the meantime, in order to keep the lung as upright and well behaved as possible.

The most important thing I have decided is to allow yourself a good howl, then look at ways of combating the difficulties, alleviating them as much as possible, and slowly moving forwards slowly but surely. Everybody has these moments; all will be fine I know it.

After writing the above I listened to a radio interview by Alan, Mary’s boyfriend, and two other people who knew and worked with Mary. The interview was fantastic, gave a wonderful insight into Mary and her hard work, but most staggering of all for me was Alan’s courage and strength in speaking so openly so soon after losing her, and still managing to plug organ donation, and to carry the torch for those of us still waiting and hoping for that gift of life. There is having to be brave and pick yourself up, and then there is phenomenal and selfless courage and strength as has just been demonstrated and has totally humbled me. Alan, Mary would be beyond proud.

It wasn’t that I couldn’t think of anything sensible to add last night (honest), it’s just there was no news as such so decided to wait until this mornings X-ray etc before updating.

Last night I found out a friend, Mary, who was waiting for transplant like me wasn’t doing so well. We have been emailing back and forth a lot, sharing the highs and lows, the fears and hopes, and generally supporting each other along this rather rocky road that is the wait for a transplant. As always the fantastic CF community rallied round and messages of support began flooding in, so I was relaying them to her boyfriend Alan via text then via email. Feeling entirely helpless and knowing she likes to read my blogs, I sent some similarly waffley emails, as I had that awful itchy feeling of must do something, anything to help, and these were read to her and she would squeeze Alan’s hand to show she could hear and apparently even managed a smile.

Mary and I had this thing in our emails, where we decided we were going along this rocky road hand in hand, as our stats were pretty similar, and so whichever one was struggling at the time, the other would gently remind them that they were holding their hand, pulling them along. Sounds strange, but it was comforting. This morning, aged 23, having fought and fought till the end, Mary ran out of time. There are no words when this happens, because there is no rhyme, reason or fairness. All my thoughts are with Alan and with Mary’s family, it is just very very sad.

This has put my news into context; I would have probably been stomping on here today as after going down for my 55930th X-ray (actual number may vary from melodramatic guestimate given) I have just been informed by the team that I am definitely not looking at home before next week; lung is still decidedly deflatey and not even attempting to sit up and take notice at present, and until it starts moving in the right direction, it is not safe for me to stray too far from the hospital. Having reflected on this a little, and taking into consideration today’s events, I consider myself in quite a fortunate position. My lungs are obviously incredibly precariously balanced right now, however I am feeling well, I am not in any immediate danger, but due to unstable and generally naughty lung behaviour I remain urgently listed for transplant.


I am planning a shopping spree (will carefully ignore all envelopes that look like bank statements when my post is brought up) and a picnic with my family in the nearby park, perhaps a Sunday lunch out too, so a good weekend lined up. I still have that chance ahead of me, and as Alan reminded me what I need to do now is concentrate on fighting hard myself. And I will.

Lots of love Mary the fairy xxx

A year ago today my friend Gaz finally lost his battle with CF. It feels very strange thinking about that day exactly a year ago, in so many ways it still feels like yesterday, as I cant believe I will never talk to him again, but in other ways it feels like a lifetime ago. I posted the following on our website:

"Dear all,

As many of you will know, it is a year ago to the day since Gaz lost his battle to CF. I had known Gaz for some years, and over that time he had become much more than just a CF acquaintance. We would chat on the phone, on the net, via text, email and then after being inmates together in the Brompton in summer 2003, face to face.

I am not a religious person, but as Gaz’s health declined, I would sit on my bed before going to sleep with my fingers crossed really tight and wish very hard that that night he would get his call. Then on the 23rd of January 2005, I got the phone call to say that time had run out.

Cystic Fibrosis is slowly being beaten, treatments are improving all the time, the life expectancy is still going up, and children and adults are living full and active lives. But pwcf are still dying. Because CF still has no cure, and because of the lack of organ donors.

Today I am remembering Gaz for his cheeky smile, his silly voice that he put on to cheer me up, his laugh which was so infectious we would both end up dissolving into coughing fits and his warmth and affection which made him one of the best friends I have ever had. I will be in chat tonight, and anyone and everyone is welcome to join me to remember Gaz and all those who have lost their battle with CF.

Love to you all."

A friend of mine pointed out that today is also a celebration. A celebration of how one person can inspire so many others, and his legacy is still living on in so many ways, the T shirt project, pwcf.net, not to mention all the people that love him.

The past week has been incredibly busy, too busy really so I am watching myself this week to have a bit more of a rest! I spent the weekend with my family in Derbyshire, celebrating my grandad's 90th birthday. That man is one of my idols in life; he just loves life and enthusiastically drinks up every possible positive point he can. A good way to live really, yay to that!