Thursday, December 31, 2009
I had a wonderful Christmas; our family have these traditions which we’ve done since I can remember and which are described beautifully by my sister here. It’s very much a family affair, which I love, and which I feel Christmas should be. However this blog isn’t really going to be about me, it’s going to be about Jess.
The week before Christmas, Jess was admitted to hospital through her local A&E. She was a poorly girl, and as we got closer to the 25th, it became apparent that she would not be well enough to return home for Christmas day. Following a long chat on the phone, Sarah and I decided that if she couldn’t go home for Christmas, Christmas would have to come to her. We contacted as many of her online friends as we could (in a short and hurried space of time) and donations came flooding in. People wanted to contribute to Jess’ Christmas day; I think the unspoken but shared emotion was that it could well be her last.
I met Sarah, along with her girls Hope and Ellie, up at the hospital, with bags of beautiful decorations, luxury food items, and presents, all paid for by caring folk from the CF and Transplant communities.
Jess' pink purple sparkly Christmas tree
Fairy lights and Christmas nibbles.
There’s a little video that you can view here (if you are a facebook user) of us decorating the room.
Jess really was a very poorly girl, and a few days after Christmas, I got a phone call from her mum saying she had taken a turn for the worse. Four and a half years of waiting and her body was running out of steam; we were out of time.
That night, something incredible happened. Somewhere out there, a family suffered the unthinkable and lost someone they loved. And at that moment, in that time of grief, they decided to consent to their loved ones organs being donated. Jess was called, and the transplant went ahead. I suspect if it hadn’t, I would have been making some very hard phone calls to our mutual friends over the next day or so.
As I have mentioned before, I am not religious. I do not believe in prayer (although I very much appreciate why people do it; feeling helpless is pretty horrible), but I do believe in the power of people. I think it is incredible that so many people have shown so much love and caring for Jess, and have fought for her and along side her all this way. I think it is magical that people at such a horrific time of grief can be big enough to think of others and to hope that through their personal tragedy, some good may emerge. I think it is astounding that Jess has managed to fight this hard, for so long, and survive the impossible. I think people are amazing.
It is very early days for Jess, and she still has a long way to go, but there is a shared feeling of relief all round. She now has a chance, the chance that she’d desperately hoped for and clung on to. All thanks to someone quite ordinary, who never met her, who chose to do something amazing and signed the Organ Donor Register.
Wishing you all a happy and healthy 2010, with one final quote which I look to again and again and will continue to aim towards next year:
"be the change you want to see in the world."
Tuesday, December 08, 2009
The evening was in support of the Millennium Mum’s campaign and invitees were various very active twitter folk (don’t know what twitter is? Check it out, this is my profile). I had my recorder class that afternoon (teaching not learning) and the kids were very over-excited when I told them just why I was wearing a posh frock and suit jacket. I met Sarah beforehand and we walked through the gates together and up to the door of number 10. The sign had been changed to mark the occasion and the Christmas tree was beautiful.
The Love Actually representation of Number 10 is actually fairly accurate! We queued up to get our name badges and I was a tad over excited to see various celeb tweeters on the guestlist. I was pretty determined to network as much as I could (why waste a good opportunity) and so moved round the room chatting to various people. Oli Barrett – Holly’s mentor for her Gift of Life Battlefront campaign was there and did a fantastic job of introducing us to as many people as he could (Thanks Oli!).
We were mingling and chatting when there was a clinking of glasses and shushing as Sarah Brown stepped forwards to talk. She thanked everyone for coming and explained about the Millennium Mum’s campaign and why she was so passionate about it. She then told the assembled that one of the guests was very kindly going to sing for us – the fabulous Beverley Knight! I hadn’t even realised she was there at this point immediately sought her out to thank her for her support in retweeting pretty much every message we went out about the Save Jess campaign. She was lovely, so down to earth, and we chatted for quite a while. She sang “Shoulda Woulda Coulda” and “Gold” with just a piano to accompany her and it was incredible; it brought tears to my eyes. She spoke briefly in between her two songs of her love of twitter, and mentioned the Save Jess campaign then! The woman is a legend.
It was so lovely to get to chat to Sarah Brown and show her how well I was doing. Later on in the evening, Gordon Brown joined her and looked genuinely delighted to see me standing and chatting and looking so well. We had a pic taken with them which amuses me greatly as I think it looks like a family photo!
We chatted to lots of other people including Location Location Location's Kirstie Allsopp (who has been tweeting about organ donation today) and Brian Friedman - X Factor choreographer - (who was really lovely and showed us his US driving licence which has a clear orange circle saying “donor” to mark his wishes – made me think we need a similar clear marker on UK ones...)
The biggest highlight for me? The fact I was standing up, I was walking around chatting and laughing and the only things to be aching were my feet. Whenever I return to somewhere or something I did with my old lungs, it reminds me just how far I’ve come. I’m such a lucky girl, I really really am.
All images courtesy of http://twitpic.com/photos/sarahbrown10
Monday, December 07, 2009
Yep, it's time for me to blog about last Friday evening, when I attended the Downing Tweet Christmas party hosted by Sarah Brown. I am incredibly slow off the mark here as Sarah and Holly have both already written fabulous blogs about this. First of all I want to take you back to November 2005, which is the first time I went to Downing Street, that time, to number 11.
I'd been asked by the CF Trust if I'd do a speech at their 40th anniversary do which Gordon Brown would be hosting at number 11. I was hugely over excited and had bought new shoes and everything (well in advance - a rarity for me) when the week before my already poor lung function took a dive and I was admitted to the Bristol Royal Infirmary. I was feeling really pretty rough, and requiring oxygen throughout the day, something I'd never needed before, but my wonderful team listened to my pleadings (or rather demands) and promised me they'd get me well enough to do my speech.
Everyone worked so hard to ensure I'd be able to get there; oxygen cylinders (a new addition to my entourage at this point) were ordered, taxis booked and a wheelchair borrowed. A day of complete bedrest ensued, followed by tiring and slow attempts to put on my clothes and sort out my hair and make-up, having to sit down at intervals to catch my breath. I was exhausted by the time I was ready, and promptly fell asleep in the taxi, the oxygen helping me catch my breath as I dozed. We picked A up en route and went straight to Downing Street, where Taxi driver and A were searched (amusingly I wasn’t – I can only assume it was a moment of PC going too far) and we were ushered into number 11.
Being new to the whole concept, I refused to take my oxygen in with me and left it in the taxi (how reasonable). I stayed seated as much as possible and did a lot of listening to people chat, in order to conserve my energy ready for my speech. When it was my turn, I stood, somewhat nervously, at the top of the room, Rosie Barnes on one side, Gordon Brown on the other. I cannot remember the speech I made, but I do know that it made people cry. That is the design of my talks; to hit people hard, people who have no experience of CF, and to make them see just why these funds are so vital.
After my speech, I quickly located my chair so I could sit down. People were congratulating and thanking me and there were so many interesting people to talk to but my chest was aching and I felt so tired. In all honestly I was relieved when it was time to go; as soon as I got to the car I grabbed my oxygen and felt my lungs relax as the effort to breathe was reduced. It was an incredible but exhausting day, one which my mind desperately wanted to participate in, but my body did not. I fell asleep very quickly and slept all the way back to Bristol, where I was returned to my hospital bed. I never dreamt I’d get to go to Downing Street again, and how different an experience it would be with lungs that work...
Thursday, December 03, 2009
A very nice guy called Rob contacted me last month and asked if he could do a 3 minute documentary about me for Channel 4's 3 minute wonders. It was for entry in a competition they're running called "It's good to know..."
The film is now finished and up on 4docs website. It is deliberately hard-hitting so just be warned before viewing! If you can, pretty please can you register so that you can "love" it (by clicking the tab with the heart next to the screen) - the more love it gets, the higher up the list it goes. The winning documentary will be shown on Channel 4. You can view it by clicking here. Massive thanks to everyone who has already viewed and sent such lovely supportive messages; I really do appreciate it.
Wednesday, November 25, 2009
I've been in hospital. It feels a bit weird to write that, and it was even weirder being an inpatient again. I mentioned bits and bobs about not feeling right, naughty left lungbehaviour and paranoia but I will start from the beginning....
Just over a month ago, Dr C noticed a slight shadow on my Xray. I didn't think much of it but he said I had to come back a month later to have it re Xrayed. The week I was due to return, I started coughing more, feeling a slight crackling sensation in my left lung, and generally not feeling "right". I tried to vocalise this to the SHO as best I could ("something isn't right" isn't the most clear description really). I had no obvious symptoms; my lung function was steady and my X ray actually seemed clearer than the last time so whether it was to humour me or not I don't know, but she decided put me on Oral antibiotics and sent me away again.
I followed the course like a good girl but was just feeling worse and worse and then last Monday decided to concede defeat and booked another appointment for the Thursday of that week. I was still torn between thinking I was paranoid and knowing deep down something wasn't right. On arrival, I did my lung function which showed a drop of over 30% (down from my normal 80 odd percent to 50%). It was a bit of a shock to see it as it just felt so sudden; even back in my CF years I tended to have gradual declines rather than large plummets.
I was pretty scared if I'm honest and not overly surprised that they said they'd be admitting me that day. Since orals hadn't worked I was told we'd start IVs that evening as they were pretty sure I had a chest infection. It was so bizarrel being in hospital, back on IVs....drips and cannulas, hospital bed and hospital food, blood tests and wristbands....all these things used to be a regular part of my monthly activities but I haven't been back in hospital for treatment since my transplant. I have decided that having a transplant definitely makes you more of a wuss when you get poorly. I tried to keep fairly good humoured about it really, as things could be a hell of a lot worse. I also experienced a good strong dose of guilt throughout my stay; what the hell did I have to feel sorry for myself about? When there are people like Jess, like Tor, who are fighting hard every day still the other side of transplant?
The plan was that if my lung function didn't improve in any way shape or form by Monday, I'd be having a CT scan and a bronchoscopy - where they put a camera into the lungs and take some tissue samples for biopsy (to look for rejection). The dreaded 'R' is always a bit scary to hear so I focused on the "it's definitely an infection" bit. Which luckily for me, it seems to be; my lung function on Monday had gone up significantly so the IVs are working, and I'm thrilled to be back at home once more to finish the course.
I am feeling a little rough and washed out from the IVs, but as I say, I really do feel bad about whinging because I definitely know things can be a lot worse. And IVs used to be so routine for me, as did hospital admissions I suppose....I'm just so used to being well now, it came as quite a shock.
I shall try and be good and take things a bit easier till I finish IVs. I shall also try and stay away from further infections and out of trouble. Can't promise though...
Sunday, November 08, 2009
Health-wise, I'm still not quite happy about naughty lung behaviour, however am beginning to wonder if I'm just paranoid. Lung func is ok, X-ray was clear...it's just a feeling (as well as the gurgly cough which is still there). It feels wrong to complain about it as it's really nothing compared to what poorly folk waiting for transplant go through on a daily basis. I think it's just that post transplant, I am more anxious about the smallest twinge or change. I'm sure it's fine (clearly talking to self here rather than anyone else...)
Things are moving steadily along LLTGL wise now the manic-ness (it's a word) of Save Jess-tival is over. Jess had to have her end of life talk last week. It's something that the team have to do when you get to the end stages of CF as whilst there is definitely still hope of a transplant, it is only fair to talk through the other possibility. I remember mine so well; mine was actually done after my massive pneumo that nearly killed me. It was essentially a talk to enable me to plan what I wanted to happen if we reached the end. It was a hideous thing to have to go through but I take my hat off to the team member who sat and patiently talked to me and listened to me for what felt like hours, as I asked them endless questions and went over the same concerns again and again. They were so patient and so helpful, and I actually felt a lot better after that; I felt that even if the end came, I would be able to retain a small amount of control. My heart aches for Jess having to go through these discussions and plans. It's so very difficult to face and it makes everything seem a lot more real.
Please keep helping LLTGL spread the word; we're always looking for volunteers and fundraisers so get in touch if you could help! A bit deep on a Sunday I know, but for some reason I've been thinking a lot about back then recently and needed to get it off my chest. (I've always loved how wonderfully suitable that phrase is for CFers).
Keep on shouting about it folks; knowing people are behind you every step of the way is hugely helpful when you're fighting for every breath, and Jess, we really all are.
Monday, November 02, 2009
OK well not quite that drastic, but it's been pretty lengthy, even by my standards. I am, however, still here and fine. Woo!
Quick summary of life over the last few weeks methinks:
Firstly and clearly most importantly, Save Jess-tival was awesome. It was a huge success, thanks to the hard work of Sarah Milne, the LLTGL Trustees, Oli and various other fantastic helpers who worked their socks off before and on the day to ensure it all came together. The LLTGL blog will be updated soon with pics and details of the night so watch this space!
It was then the last week of half term, which was incredibly hectic with various performances in all schools, but all went well (thank goodness). Towards the end of the week, I started feeling a bit groggy and my left lung decided to start playing up. I have no idea why only the left one chose to misbehave, it may well be attention seeking antics however I will not be buckling and shall merely be referring to the naughty step (also known as Harefield) for any further bad behaviour. There's just generally a bit of chestiness and wheeziness going on, and being so used to being so well, it was quite frightening. Luckily on Monday I went to Harefield and came away with some antibiotics which are predominantly to cover all bases, since tests (X ray, lung func etc) were actually pretty good.
On Tuesday I went up to London for a photoshoot for Company Magazine. It was great fun as it was the first shoot I've been on where all your hair and make up are done for you and a vast selection of clothes are presented to you to wear for the occasion. The article will either be out in the January or February edition; I'll keep you posted.
Wednesday saw the pre-launch of the new NHSBT campaign. It was officially launched today; take a look at their website to see the vastly different and much more hard-hitting angle they are taking. I would love to hear what you think so please do leave your opinions in the comments section. I attended the launch and was asked to speak about my experiences to the assembled guests. It was a very interesting afternoon and I felt very honoured to have been asked to speak.
Then A and I went up to Derbyshire for a few days, to have a bit of a (much needed) break and to visit my wonderful Grandad. It was a really lovely few days, Derbyshire is one of the most beautiful areas of the country.
I was going to write something about "where has half term gone?" but I think I've answered my own question in the above. Am now off to do some LLTGL work to follow up this new campaign. I really really hope it has the desired affect...we know that softly softly hasn't worked, will this be the angle that jogs people into acting and signing the Organ Donor Register?
Monday, October 12, 2009
So, back to the questions, some of these were posted on Facebook, in case you’re wondering where the original questions are:
Why do so few transplants happen and what can normal people do to help the success rate?
I wish there was a simple answer. I think it’s a combination of things, one of the biggest being the lack of donors. However there are many other influences including lack of resources and infrastructure, the need for improved donor management (which links back to resources) to ensure that organs are kept in optimal condition during retrieval and transit, and the fact that transplantation is so very very specialised. Transplantation is not yet a “norm” and until it is, these problems will continue to exist. But I do genuinely believe that one day, the UK will see transplant and organ donation as something that is just part of society and of life and death.
You’ve settled into a new house and job and are still into campaigning. What else would you love to do, other than have your own talk show of course? ;-)
To stay here and keep on enjoying every second. That is honestly my greatest wish (other than to be crowned queen of everything, clearly)
You keep your life with Adam private but can you tell us three great things about him, apart from the obvious ones.
His ability to see the bigger picture, his way of knowing without me saying, and the fact he loves me for being me.
I want to know what keep A going through your darkest moments?? Please don't feel you have to answer this I know it's not about you and A is a very private person.
I did actually ask him about this following this question. He said it’s difficult to answer as everyone is so different therefore the way people handle things are going to be so different. A big thing was definitely keeping his own life going, and I firmly believe the fact he kept a sense of “self” throughout was vital, especially if things hadn’t gone the way they did. I don’t know how the partners of PWCF do it really, and after co-writing this with Jac I was left even more in awe. Which is probably daft as I know people say the same thing about CFers and marvel at how they keep going. I’m rabbiting, I shall stop.
Do you find it hard doing all the tx awareness raising? Do you not sometimes just want to fade into the background and forget about it all?
Very interesting question. When I got my transplant, a lot of people gave me advice on the fact I would probably now want to drop all awareness and shed as much of my post-transplant identity as possible, so I was fully prepared to feel that way. In fact, I’d say I almost feel the opposite. I have a bizarre sort of fear that I will one day forget what it was like to be that ill. I don’t want to forget, I want to always remember what it was like to ensure that I never forget how lucky I am to be how I am now. The first time I realized I couldn’t physically remember the feeling of struggling for every breath, I panicked. Of course I remember it all mentally, but the physical feeling of it plays a strong part and my body finds breathing easy now, those feelings of struggling replay to me as if from a film; like watching someone else experiencing them, rather than myself.
I am who I am now because of everything that has happened to me, and I personally feel that it is vital to embrace each and every experience I’ve been through. I am not religious, nor do I believe in fate, but I do believe that my transplant is a gift and that I do have some responsibility to use it to help others get theirs. I don’t even feel this is a moral responsibility, just something I have to do. And want to do, more importantly. Maybe it helps me tackle survivor’s guilt, I don’t know. But I love what I do, and whilst I love it I will keep campaigning. It’s a massive part of my life, of me, and of who I am.
I was wondering if you've done any singing professionally or in a band or anything as you seem to have a good voice?
This one made me smile, because I don’t have a particularly good voice (not fishing for compliments here so don’t comment if you’ve heard me sing!) I am, however, very practiced and love singing harmonies, I’d say that’s where my strengths lie. I much prefer singing as part of a group, but I enjoy passing on knowledge of techniques to others, which is obviously where the teaching comes in. It’s a love and a skill I’ve developed rather than a natural talent, so no, very little performing (other than in choirs and groups).
What's your favourite film? And why?
Very tricky one. It depends what mood I’m in (what a cop-out!) I do love Richard Curtis films as I love his observations on people and society. I am also a big fan of Dogma. But one of my all-time favourites has to be It’s a Wonderful Life; my sister has written about it’s link with our family in her blog post here.
I wanted to ask - how has your transplant has affected those around you, your siblings, parents and your hubby?
That’s a very interesting question too...from my perspective, the main thing it has done is lift a whole lot of worry off their shoulders. When I was ill, a lot of life revolved around me. It couldn’t really be helped as whenever anything was planned, thoughts that would crop up would inevitably include “Will Em be ok? Is she coming with, if so, how, and if not, who’s around to ensure everything’s fine? Can I get back if there’s an emergency/she gets her call?” etc etc. It’s so wonderful now to get a phonecall from a family member telling me excitedly that they’ve just booked a holiday, no secondary thoughts of concern or worry. Life has normalized drastically, that’s the biggest change I see. But for a more accurate answer, I shall have to appeal to any family readers to insert their opinions in the comments section.
Has your transplant affected your relationship with your husband? Since you used to be so poorly and dare I say dependant on him and now you are equals so to speak?
Good question Gem, (congrats again btw) I think we were quite careful to ensure our relationship always remained a relationship. It was very important to me that he never fully became my carer, although, inevitably, a lot of caring was done and I was hugely dependant on him as I was everyone around me. My personal view? We’ve adapted rather well. We can be a normal couple, do normal things and I can participate in everything – yes that means the cleaning and the washing and taking out the bins as well (dammit). Maybe this was helped by the fact I always remained fiercely dependant in mind, if not in body. To the extent that Christmas 2006, just days before my transplant, I sat on the sofa giving cross instructions to my poor mother and husband who attempted to decorate the tree in the way I wanted it done. I think this links back to the other question about relationships and coping; everyone is so very different in the way they handle things, but for me, me staying “me” and him staying “him” was hugely important, both at the time and thinking of what may lie ahead.
Can you pinpoint the exact moment that pink became such a focal point of your life?
It was definitely around the time my health started getting worse. I used to be quite a grungy teenager (honest!) and was very much into black items of clothing and baggy jeans, although I always accessorised with sparkly rainbow coloured stuff, even then. As I got increasingly more dependant on others I found the princess analogy helped me come to terms with it. I think the pink thing tied in with that. Also, you don’t feel particularly girly and feminine when coughing your guts up, it may have been a bit of a counter-attack on my that. Or it may have just been that it’s a girly, cheerful colour. It makes me happy.
Can you still ride a bicycle? I tried and I can't :D
Do you know what, I have no idea. It’s going on my to do list.
Tuesday, October 06, 2009
We are very very excited to announce our upcoming ‘Save Jess-tival', a fantastic night of music and comedy to honour our wonderful Jess and to encourage people to "think about it, talk about it and do something about it" (organ donation that is!)
Our headline acts are: stunning singer Natalie Imbruglia, and Canadian comedian Glenn Wool and Mock the Week favourite Ed Byrne, with more to announce later in the week.
This star-studded fundraiser will place on the evening of Friday October 16th at The Village Underground in Shoreditch, London. Doors open at 7.00pm.
Tickets are available NOW! Click here to buy.
For more info on our 'Save Jess' campaign, please visit http://www.savejess.org.uk/
All proceeds go to the Organ Donation Charity Live Life Then Give Life, of which Jess is an Advocate.
Sunday, October 04, 2009
What job are you doing at the moment, you talk about it but never really said what it is?
I’m a teacher. Sort of. I started last year when I was asked to start up a school choir at a local school, and it was a massive success which threw me into singing, music and education. I now teach at several different schools, doing some music and some vocal coaching. I absolutely adore it; with kids you never have a dull day. I also find it vaguely amusing that my job relies heavily on my lungs and breathing. I work part time (well, I try to work part time) as I have lots of LLTGL stuff to do as well.
When you were a student in Bristol where were your favourite places to party?
I wasn’t really that much of a party person! I think because by the time I was in second year my lung function was in the 30% range, I didn’t go out for wild nights very much. I did however love evolution (was that it’s name?!) where the DJ would play Sit Down and all the Bristol Uni students would sit on the floor leaving the UWE students standing (healthy rivalry. Honest.) Our favourite hang-out was a little dingy old mans pub which had a beer garden and patio heaters. And cheap drinks.
OK... how about what's the achievement in your life you are proudest of? And what's the one thing you want to do next more than anything else goal wise?
I think my proudest achievement is probably LLTGL. Em and I invested so much blood sweat and tears into it from the beginning, and to see it flourishing with such a fantastic team is a very proud moment indeed. Aims and goals? To carry LLTGL on to an even bigger and better future, but mostly, to squeeze every little drop of joy out of life and take everything it has to offer. And drink it up all thirstily and get my money's worth ;)
What's your favourite book ever?
My Family and Other Animals. It’s a wonderful, wonderful book that I’ve loved for many years, and return to reread whenever I’m at a loss of what else to pick up or if I’m feeling down. Close second is Life Among the Savages. Read both, they’re fantastic, and both very funny. I also love Morrie in his own words: a very very different kind of book but one I found very valuable when ill and asking myself big questions about life and death.
What is your lung function post tx?
Shockingly I am not sure of the exact percentage. It’s around 80% I believe, slightly lower that many because of the scarring caused by the infections post transplant and the fact that I have no working diaphragm.
How do you feel about having children post tx? Is it a complete no-no for you? I am listed for transplant, and its the one thing that scares me, the thought of not being able to have kids, and what any potential future husband will say about it...would be interested in your view, thoughts or feelings.
This is a very difficult question for me to answer as it’s very personal. Firstly, having children post transplant is not a definite no, I know post transplant CFers who have gone on to have children and who are still around. However there are risks, very similarly to having kids with CF really.
I’ve always had quite strong feelings about bringing children into the world when your own world is not very stable. Pregnancy and then looking after a child put huge strains on your body, ones that could cause harm to you, and potentially the baby. It’s a difficult question, at this time I feel that’s all I can say. But for the person who asked it, it’s not a no-no, and don’t forget there are other options, such as adoption and surrogacy. Try not to dwell on it as there’s every chance bringing up a child be a possibility for you. Somehow.
Before your transplant you seemed as positive and upbeat as you are now (I'm a complete stranger and I was sad/worried for you-but hopeful!). With everything that your CF came with, what did you do or what made you keep so up beat and positive?
Interesting question! I think it was people. I wrote this blog about optimism and genetics when I was very poorly. My fab family and other people I was surrounded by wouldn’t let me get down, or they wouldn’t let me wallow anyway (everyone is allowed a good cry every now and then). People were what kept me going. People close to me, people I’d never met, people who just wanted to make contact, people who had known me for years and kept the “me” part going under all the illness. I think my belief that people have the power to be as happy or as unhappy as they want to be helped; not always, obviously, but a great deal of positivity is about perspective. You can focus on the good or focus on the bad. That doesn’t mean life is that damn simple, but it means you have some control over where you focus your energies. I have always been lucky to have a lot of good going on in my life, but I pride myself on the fact I worked hard to keep the good times going, and to stay focused on them and committed to enjoying each day, just in case it’s my last.
What was your honest expecations in terms of a) actually getting a transplant and b) life after it if it did come?
My expectations of getting a transplant definitely changed along the way. At one point I was absolutely positive I would (I just knew it – that was quite early on) and at one point I knew I wasn’t going to be one of the lucky ones (that was the night I was dying and the family had to come and say goodbye.) The (as it turned out incorrect) realisation that it would never happen for me was really just one of huge sadness and disappointment, but on a scale that you can’t imagine. I wasn’t angry, just very sad. As for life afterwards...I didn’t really let myself dream about it. I figured if it got to the end and I’d imagined all the possibilities and then they never materialised, I’d be even more upset...even more upset about dying than just upset then, god knows where that logic came in! It was part of my “focus on the now” mentality, to try and keep me enjoying the good things that life had to offer at that moment. About 8 months after my transplant, my mum and I were talking about the difference and she said that she still couldn’t quite believe it. She knew we were going for transplant as it would keep me alive but she never imagined in a million years just what a transformation it would bring. My hopes of life post transplant were teency in comparison to the life I’m privileged enough to lead at the moment.
Those are the first few, will work on the rest. I promise :)
Friday, October 02, 2009
And I am going to blog, honest. But things have been, well, rather busy this week. Hopefully should be able to explain fully why next week, but for now if anyone has any media/PR/agent/celeb/musician/comedy contacts, please can you get in touch with me asap.
Saturday, September 19, 2009
Q & A.
Ask me a question. Ask me more than one if you like. Anonymous questions are fine (as can be posted on my blog, for those of you who are reading this in note form on FB it's www.pinkandsmiley.blogspot.com ) and do ask me anything (although I don't guarantee I'll answer anything, even a pinkandsmiley loud mouth has some privacy, honest!)
You have 1 week to question me about life, CF, transplant, LLTGL, me myself and I, all of the above....or anything else for that matter.
Thursday, September 17, 2009
Jess has had a rotten day, which resulted in her being rushed to A&E and from there being transferred to ICU. She is now on the main ward and doing a bit better.
I remember this bit so much. Well actually I can't, I was never as ill as Jess I don't think....well my lung function never went as low as hers if that's any judge. But I remember my last few months of waiting. The effort it was just to keep on breathing. It felt like I'd been walking for months and months with no rest and that one more step felt like such an impossible task...only I wasn't walking, I was breathing. And you can't take a break from breathing.
I know what's keeping Jess going. It's hope; the hope of a transplant, of a new life, of being able to breathe. And people - people kept me going so much. Oh and stubbornness (a fab trait to have when all the docs shake their heads at you).
I don't know what to do. The reality is, there is nothing I can do. I can wish as hard as I can, try and be there for Jess, I can shout about organ donation, I can push myself even harder to try and spread the word. But all that can save Jess is that call. She needs it now. To be honest she needed it yesterday, but now will do. Please.
Who am I talking to? I don't know. Want to do something? Repost this. Or post something, anything, about organ donation and how to sign up (and why) anywhere you can.
Monday, September 07, 2009
The lady in the blue hoodie in the first shot and hugging me in the second is Hannah. Hannah was my physio when I was in hospital training for the 5k back in 2006. Hannah was the one who would come and see me several times a day, would help me mobilise and build up my distance, and who walked with me and another wonderful physio called Vicky, to the finishing line.
So why when Jess announced she was doing the 5k I didn't realise Hannah would have something to do with it, I don't know! Seeing Hannah there was hugely emotional, the last time I was in that park with her I was in Jess' position. It really brought it all flooding back to me, especially when she said "I never thought I'd be walking alongside you like this" whilst hugging me.
From the moment I walked onto the field I got very emotional. I always do; the Hydro (as it will always be to me) holds so much significance, and everyone there is full of spirit and determination, doing it for a good cause, doing it for someone they love, doing it for someone they've lost.
Anyway enough about me - I know this is my blog but I'm writing today about Jess' achievement. She did amazingly. She was all clad in neon and smiling constantly.
She looked somewhat nervous and was quite quiet (doing a much better job of not using up all her puff than I did) but extremely determined. Several members of Jess' medical team from Kings were there walking with her, some running ahead to complete their own personal challenges.
Jess was aiming to walk 200m out of every kilometre. She did it (I don't know how) and did it with great style, and in fantastic sunglasses. I've made a video here from footage I took yesterday. I don't mind admitting I cried whilst making it and cry when I watch it back. I so want Hannah's words to be true. They have to be true.
I also got to meet Liz and Jan, a wonderful pair of friends who you can read more about on Holly's blog. Walking 10 weeks after their ops? Pretty damn inspirational. Speaking of Holly, massive thanks go out to her for taking these amazing pictures.
I struggled slightly during the race - partly due to falling down the stairs in the week and bruising various parts of my anatomy quite spectacularly, but to be honest was pretty focused on watching Jess and willing her on. Crossing the finishing line was extremely emotional, and I brushed away the tears whilst whooping with joy and jumping up and down (which is why it appears as if the cameraman has fallen over on the video at this point).
After congratulating everyone and telling Jess to go home and get some rest, I set off for Croydon to support the wonderful Lou. Lou was doing her sponsored tree hug that afternoon and I was determined to get down there and be there for her. A 2 hour tree hug might not sound like much, but when talking makes you breathless and your arms and legs have virtually no muscle mass, it's a huge challenge.
Lou did fantastically well; it was hard work, and she was in quite a bit of pain by the end, but she clung on for dear life. I have some footage of her too and will be editing it and putting it up soon. I am just glad I was able to be there with her, cheering her on.
I am not feeling great today as a result of lots of rushing around, but I am pretty sure that's nothing compared to how Jess and Lou are probably feeling. They did so incredibly well, it's spirit and determination like that which is why both ladies are still here, after all they have been (and are still going) through.
Told you it was a long blog. But a good one I think. Hurrah for fabulous girls achieving huge amounts and rocking muchly.
Friday, September 04, 2009
Health is good. Really good. To the extent that my last visit to Harefield was back in March. I am going up there at the end of the month for a checkup; I just phoned and begged to change the appointment as I have been booked for a talk up in London to quite a powerful audience on the original clinic date, so I don't want to change that if I can help it!
The thing is with feeling so well and "normal" is that I get used to only having to do normal things. The phone call just now brought with it quite an uncomfortable realisation that I haven't been to my GPs to have my bloods checked recently (oh dear, will be in hugefat trouble and deservedly so). When real life is all that takes up your day to day, it becomes harder to remember (or accept) when you have to step out of it. This is all hugely positive, incidentally.
I have been asked to attend an occupational health appointment in relation to some work I'm doing, which, in a calm and reasonable manner, I was instantly infuriated by. But why on earth should I be?! It's for my own protection as well as the employers, and one would imagine that with my, somewhat extensive medical history, they'd err on the cautious and request one. But my instant reaction was one of "there's nothing wrong with me!" which is interesting, and also rather nice.
A and I have been in our gorgeous little house for a month now. I love it. Very much. People used to say to me "being normal isn't all that you know, what with bills and work and responsibilities..." I think it's awesome. Honestly. Maybe that's just because I am constantly aware of how lucky I am to even be experiencing it.
Tuesday, September 01, 2009
The Advocate weekend was awesome, predominantly because the Advocates themselves are awesome. You can read about it all on the LLTGL blog, on Lou's blog and on Holly's blog.
This Sunday I am heading up to London for the day. I'll be spending the morning walking alongside Jess, and the afternoon cheering on Lou.
Please take a look at their pages and consider sponsoring them, they're putting their bodies under a lot of pressure in order to raise money for LLTGL; I'm really very humbled by them both.
Friday, August 21, 2009
Time has gone rather fast. How is it that during the school holidays I'm even less capable of keeping my blog up to date?!
This will be a brief one as I am madly preparing for the LLTGL Advocate weekend. I am hugely excited but a little nervous, as I've organised it so I really hope it goes ok and they get lots out of it. Some of you I know have read the other recent LLTGL news and I just wanted to say thank you for your lovely messages of support.
This week my lovely friend Mrs W and I disappeared off for a bit of pampering at a Spa. We were lucky with the weather (as demonstrated by the pics) and had a wonderful and very relaxing time.
Our little house is feeling well and truly like home. I adore it here and am so happy. I feel very much like we belong here.
Told you it was only a short one! Stay smiley all.
Thursday, August 06, 2009
For the last few months, A and I have been working on getting our very own little home. I have, over this time, learnt that I do not like banks but that I am not quite as inept as I thought I was at all things money related.
A little while ago we found one. A little while later we made an offer. And on Friday, we got the keys.
It's been a truly wonderful experience. When we first moved in to our house with rosesinthefrontgardenandeverything, I wasn't really able to be a part of it, as we'd literally just signed the rental agreement when my lung decided I needed a 3 month vacation chez Brompton. By the time I came out (chest drain still in) I was in a pretty weak state and most of our stuff had been moved in anyway, and it was a bizarre and disjointed entrance.
This time I have been involved in everything. Everything from going in and sweeping and hoovering and polishing to helping move furniture. Well, actually it was predominantly standing watching the guys heave the sofa up the stairs trying to say helpful things and stay quite far out of the way.
When we gave the keys of our house with rosesandeverything back to the landlord I could feel the tears coming, but I managed to hold off till we were safely back in the car and out of view. I cried a lot. I do feel like I have left a lot behind in that house. So much happened there; various events and memories that one will associate with a home as well as some pretty key moments: my almost fatal lung collapse, LLTGL was first dreamt up in that lounge, Emmie and I sat on the floor sorting Tshirts and discussing plans, my call for transplant...then after transplant, A and mine engagement and then marriage....it's seen a lot that little house.
As I say I do feel like I have left a lot behind. Neither in a good nor a bad way. It's just a big change, another big step forwards, and some things now seem further in the past.
A and I are very cosy in our new place. It's still hugely exciting that we're in our very own little house, I don't think I can quite believe it, even though it already feels like home. What a lucky girl eh?
I haven't even felt the need to decorate everything pink. In fact I distinctly heard myself say to A "I'll have to get new towels, pink ones just don't go..."
I must be growing up.
Thursday, July 30, 2009
Is this the reason that Scotland has gone from having poor organ donation rates to being one of the leading regions in the UK?
London is one of the worst. That makes me sad and rather ashamed of the area I live in.
There was a lot of outcry when the Scottish Kill Jill advert came out. I happen to think that controversial/hard hitting might be where we need to head. What do you think?
Thursday, July 23, 2009
(she says stating the obvious).
This was mostly to do with work being so busy. Which I did pre-warn about. I've also had a bit of a confuddled head. Heading out of the mist now.
I was sorting through some old boxes (for reasons that will become apparent soon!) and came across a batch of cards and letters. They were from when I had my rather hefty pneumo which made a good attempt on my life (but failed - ha). I was lost in memories for the next half an hour as I ploughed my way through every single one. It only took a few to have me in tears. People can be so giving, so generous, simply by taking the time to reach out and let someone know that they are in their thoughts.
The support and friendship I was shown at that hugely vulnerable time was incredible and I am still overwhelmed by it when reading them all again now. I think it was a very important time for me to rediscover them as I have been feeling uber-sorry for myself this last week, and revisiting the past was a hugely positive thing as it essentially showed me that I need to get the hell up and slap myself about a bit.
On this note of supporting those in need, I would like to give a little mention to Postpals. These guys are fantastic and I think it's well worth popping over to their website to see what they do.
I am now on Summer holidays (YAY!) so be prepared for slightly more frequent posting! Hurrah!
Tuesday, July 07, 2009
Please do something. Do anything that might raise further awareness. Talk about it, get some stickers, get some leaflets, send an email, change your facebook status, tweet about it...Anything.
People like Jess, like Tor, like Gabriela, are relying on us. They need us to do it now, not to put it off till tomorrow, because their tomorrows are looking very uncertain indeed.
Let's give them a tomorrow. Think about it, talk about it, do something about it.
Friday, June 26, 2009
Am v much looking forward to pausing for breath, although the reason it's been so hectic is only due to success so can only be a good thing!
There has also been another somewhat stressful (but exciting) thing going on however I don't want to blog about that just yet...
Oh and the big kids have not eaten me for breakfast (although one class has certainly tried to) and I'm mostly enjoying the challenge and learning a hell of a lot as I go.
One last thing (continuing in this crazy disjointed manner with far too many brackets) - Please please please could you check out www.lltgl.org.uk/mysisterskeeper and write to your local cinema. It would be fantastic if we could get loads of cinemas around the UK displaying Organ Donor awareness materials and you can help!
Stay smiley all!
Friday, June 12, 2009
Where did the time go!?
OK I am going to consolidate the past 2 weeks into a pacey and consise blog (ha).
- Oli and I did some more filming with William's family. Sarah and his big sisters Hope and Ellie spoke really well about life with William before transplant, and about living in hospital and every day being so fragile. Wills ran about bursting in every now and then whilst we were filming, which was just a joy. We also discussed the Gifts of Life project which is going fantastically, so if you haven't done already, do go and have a look.
- My youngest sister had a birthday which resulted in us three girls heading up to London to watch Sister Act at the Palladium (well done Abs for being born as we had a fantabulous evening).
- LLTGL had a fascinating weekend which involved some amazing guys who had come over from the US to do some training with us. It's all part of our exciting new project which is currently being developed....more info to come on the LLTGL blog soon.
- I nearly missed the above due to a chicken pox scare which resulted in various blood tests whilst they ummed and ahhed about my immunity; first result suggested I wasn't immune, lots of initials (IGG, IGM) were banded around and then a follow-up bloodtest at Harefield revealed that actually I am immune and it was a bit of a panic over nothing.
- Work has been stupendously busy and will be even more so until the summer holidays as I have taken on some extra cover work (so if this blog suddenly halts it's because some pupils who are taller than me have eaten me for breakfast).
So life continues on in its bewilderingly rapid and schitzophrenic way....but all is good. I shall, at some point, sit down and write a proper blog that does not consist of bullet points. Honest. But just wanted to reassure one and all that I am safe and well. Life just gets in the way sometimes. How fantastic is that :)
Saturday, May 30, 2009
It's been another very busy but very good week. I've been on half term so obviously in my brain that meant I could cram three times as much into the week as usual. There's logic in there somewhere.
Monday was the most exciting day; a visit to the gorgeous Manoir and lunch in its 2 Michelin starred restaurant. It was my birthday present from A and it was an absolutely stunnning meal. We wandered round the grounds which are beautiful, and the vegetable and herb gardens (I never knew there were so many different types of mint) and generally had a wonderful wonderful day. I felt like a real princess.
On Wednesday night, Oli and I headed oop North to film Bethany and Gabrysia. There's an update about this on the LLTGL blog as well. Both families were lovely and so welcoming. It was wonderful to see Bethany so full of energy, bounding around and playing with Eloise. Her glowing skin and bright eyes was a brilliant contrast to previous photos I'd seen of her. It was lovely to see the whole family looking so relaxed and happy.
I found Gabrysia's shoot sad; Gabrysia is the most urgently listed person in the UK for a heart. Every single minute is vitally precious, and that was clearly evident in the incredible bond her siblings and her mum demonstrated. Watching siblings go through the transplant journey always hits me really hard. When I was ill, talking or thinking about my sisters in relation to worst case scenarios would inevitably make me cry, even when I was able to talk about myself without doing so.
I always love meeting transplant families so the whole day was lovely. It also reminds me how incredible my family was during that time; I've said it before but things return to normal so fast. I'm off for a family BBQ today and thoroughly looking forward to it. Am off to slather self in suncream so I can enjoy the sunshine.
Friday, May 22, 2009
Completely lax blogging-ness yet again. Sorry. Life just never seems to stop at the moment. Well actually, I've paused today - first day off in weeks - and it's rather nice not to be traveling anywhere this weekend!
Last weekend I was up in Manchester to do some filming with Oli. We filmed the lovely Holly Shaw and also attended Team Ethan's fundraiser. It was a wonderful event; there was so much laughter and friendliness and warmth, but everything was tinged with sadness. The Collins family are just incredible; I don't really know how to sum up how much admiration I have for their strength and spirit. It was quite clear to see where Ethan got his ability to smile through everything came from. Oli has put together an awesome video of Team Ethan's weekend, which you can view here.
Whilst there, Oli and I had to stand up and speak. It was one of the hardest speeches I've ever done, as usually we go for the good old "look at this, this is what transplant can do, it's amazing" but of course that was not a possibility given the circumstances.
Jumping a bit (but it's related, honest)...there's some strange creature who calls herself "Kate" who has been raining down criticism on Holly, both about her Battlefront campaign and about her as a person (charming). "Kate" claims her biggest problem is that the whole story isn't being told, that transplants are not the miracle they are made out to be.
Firstly, whoever said they were a miracle? If transplantation was a perfect solution then anyone born with something like CF would be listed at birth. It's not perfect, it has risks, it has complications. But what aggrivates me about "Kate" and her opinions is that she is missing the whole damn point. Transplants are not offered to people who have other options; they are a last-ditch attempt at saving ones life. Not only that but my god is my quality of life 20 billion times better now than it was before. I didn't even realise how my illness affected everything I did until I was able to experience life this side of the looking glass.
For me though, transplantation holds as high a significance psychologically as it does physically. When I was waiting for transplant, I was able to keep going and to aim for things and to try and continue living my life (even by making tiny steps forwards). This was because I had hope. I had hope that this call would come, I had hope that I'd get a second chance at life, I had hope that someone out there would sign the organ donor register and in doing so save my life.
Hope is a huge thing and cannot be underestimated. Without that knowledge that I was aiming for something, I can guarantee I would not have lasted those 22 months. I was fighting for that chance, that hope and that's why (and how) I held on.
How anyone can suggest that because your hair can get thinner and you might get acne that having a transplant isn't worth it is completely beyond me. It just shows a complete lack of comprehension of the whole picture. Ethan's family are so movingly grateful to have been called, despite their sad ending, and their amazing graciousness makes me even more angry at people who make sweeping generalisations about how transplants aren't worth it.
A transplant offers hope. It offers the chance (sadly not the guarantee...not yet) of a new, better quality of life. It can save lives when nothing else can. And it is the most beautiful most precious gift anyone can give.
Tuesday, May 12, 2009
I would write a lengthy blog about it but have somehow thrown myself into a rediculously busy week this week.
So instead I shall cheat and link to Jac's blog.
I've only ever seen Jac face to face once before, and that was when she spoke at Scottish Parliament for us. She was extremely quiet, and sat very very still, two things which she is definitely not now ;) We talked and talked and talked and talked. And talked a bit more. And did a bit of walking as well.
I had a wonderful wonderful time and am so very very glad I completed the course. It was, most definitely, the hardest challenge event I've ever done (knees and ankle joints are still causing me grief), but I'm glad I did it. Massive thank you to Jac and her wonderful friends and family who made the whole event so enjoyable. And to the gorgeous Seb for following me around constantly to check I was ok!
Thursday, May 07, 2009
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.
Friday, May 01, 2009
It's everywhere. And I mean everyyyyyywhere. No not the infectious sort silly, the hype and the Media "round the clock, this may or may not happen" reporting.
I'm very torn on the subject. I actually think the UK is being very responsible taking it so seriously (better safe than sorry) but the media is annoying me somewhat. There is a lot of scare-mongering going on for something that has resulted in 13 deaths worldwide so far. Yes 13.
But it is natural that people are getting a bit concerned; news of a new flu virus is never really going to be good news is it?
For any transplant patients who are concerned, this discussion thread offers some useful advice.
I've come down with a beautifully well-timed cold, complete with swollen throat, aching limbs and everything. Tad worrying when on every single website you read there is advice about contacting a doctor with any flu-like symptoms, but seeing as I haven't been to Mexico in the recent...ever, I'll take my chances*.
Stay well and non-panicky folks!
*obviously contacting Harefield should there be a change in Lung func, as is the normal advice. I'm not that daft. Honest.
Friday, April 24, 2009
Well technically this is "after the weekend" - just quite some time after.
The Ball was fantastic. It was organised by Lorraine, mother of 2 boys with CF, and publicised quite widely within the CF community. Because of this, I was aware there would be quite a high percentage of parents of children with CF and other relatives of CFers, so I was more nervous than usual as I needed my speech to be hard-hitting yet positive. Erk.
A and I drove up on Saturday afternoon and arrived in good time for A to make use of the lovely Spa facilities. On his return to the room he informed me that everyone knew me (or new about me) including (by sheer coincidence) a lady who was not attending the ball but who was a journalist who I'd spoken to on several occasions.
We got ready (I may or may not have had a strop about my hair before deciding it was probably ok and I wouldn't shave it all off) and headed down to the drinks reception. I was overjoyed to see Suzie looking radiant and sat chatting to her and her friend. I sought out Lorraine who was in a gorgeous read dress and doing a very good job of not looking harrassed! We moved into the main room for the meal which was beautifully decorated and had a stage all set up ready for the live band which would feature later in the evening.
After the rather yummy dinnner, Lorraine and her husband spoke briefly to thank everyone and to explain how CF affects their family, and then it was my turn. As always with these things, what I actually said turns into a bit of a blur afterwards, but I got a few laughs (intentional - not due to failure to speak English I hasten to add) and quite a few tears, so hopefully it did the trick.
I then donned a sash to help with the auction, and went round shaking a bucket asking for people to empty their pockets and wallets of any loose change in a (hopefully) sweet and non-menacing way.
Money-relieving duties over, it was time to start dancing, and the fantastic Amy and the Aviators (who I'd thoroughly recommend) got everyone up from the first song and most of us stayed on the dancefloor till the very end.
All in all it was a fantastic night; I had great fun and it was lovely to meet some of the parents from the boards, and to chat to Suzie and Lorraine not in a muddy field for once! Bring on the next one...
Friday, April 17, 2009
I'm heading up there to attend a CF Ball, organised by a mother of two boys with CF. I'm doing a speech, and weirdly, I'm quite nervous.
I'm not exactly sure why; I think it's because I'm very aware that a lot of the people in the audience are parents of CFers. Therefore I want to balance it right and not give anyone sleepless nights! But at the same time the hard side of CF needs to be told to ensure that people understand why the money needs to be raised.
Don't get me wrong, I am also very much looking forward to it, especially seeing some familiar faces. And wearing my lovely green dress (woo)
I just hope I have aimed my speech at the right level and that the ball is the success it deserves to be. Will blog about it after the weekend, have a good one all.
Wednesday, April 15, 2009
Jess was only 15 when she was told she needed a double lung transplant. Almost 4 years later, Jessica is still waiting.
She has managed to survive beyond all expectation and has doubled what doctors predicted when listing her. But not even Jess is superhuman, and I am getting very worried now.
Jess has had a lot of false alarms, where the transplant could not go ahead due to a problem with the organs. Very recently, she got called again....and was too unwell to undergo the operation.
Jess is now back in hospital, and the team are fighting hard to get her well enough to undergo the operation hopefully in time for another call. Jess' time is running out.
As she was in hospital and far too ill to come and support Holly's Donor Day in person, Jess was determined to support her in any other way she could.
Please pass the link on to the below because if this doesn't kick people into action....I don't know what will.
Why support Donor Day?
Monday, April 13, 2009
Things have been crazy, and I was going to write about it, but a)because I'm lazy and b)because she's done it so well I suggest that you read Holly's account of Donor Day and the days surrounding it.
The whole thing was an incredible success and she did so very very well.
Shall write more in the week. But all is good :)
Sunday, April 05, 2009
Friday, April 03, 2009
Tuesday, March 31, 2009
...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!
Tuesday, March 24, 2009
So I am now a quarter of a century old. A bit scary, but mostly very exciting that I got this far. That sounds incredibly melodramatic (and is a touch) but in all seriousness, if you look back over the years, it is quite miraculous that I am still here to whoop and dance around a lot.
To me, the biggie is 31. That's the age I really want to get to, and when I do, I shall have the biggest party in the history of mankind. This is for two reasons; firstly it will be 10 years since I was told I would only survive another year without new lungs, and secondly, and more importantly, I will have beaten that god-awful CF statistic: the Average Life Expectancy.
It can really hang over your head that one. Ironically, my rapid decline in later years meant it didn't actually bother me at all as I began to look upon it as a favourable target rather than an expiry date, but I know it’s a number that many people in the CF community focus on. Therefore I’d rather like to smash it up a bit when I get there.
Life for me at the moment continues to flow in the calm and rational manner that water does when hurtling over a rocky precipice. I have a huge concert coming up on Friday and I am both terrified and wonderfully excited. I hope it goes well; for my pupils more than anything…but also because I’m the one standing at the front if it all falls apart.
Quick musing (plus somewhat blatant plug) before I go; this post, is worth a read. I like it for several reasons; firstly it mentions me. Secondly it discusses the phenomenon of blogging; a topic I’ve chewed over a few times on here as I am truly fascinated in what attracts people to blog and to read blogs.
I read a variety of blogs myself. Mostly those of people with CF or transplant patients. Others I read for entertainment value or because of their writing style. I read them to keep up to date with people, with situations, and to educate myself. And if I’m honest, because I’m nosey. I love blogging, and it’s a fascinating and ever-growing phenomenon. Whilst we’re on the subject, do feel free to jot down any of your favourite blogs so I can go and nose over there too. And please, wish me luck for Friday…
Sunday, March 15, 2009
Saturday, March 07, 2009
But here's a serious reminder of why we all do what we do and why we are constantly asking for support and help in spreading the word.
A day in the life of Jessica Wales
Thursday, March 05, 2009
So yes, Mauritius. It was incredible. It's somewhere I have been wanting to go for a very very long time and to be honest I never thought I'd manage to get there. To say it lived up to my expectations would be an understatement.
The last picture incidentally is me doing something called Deep Sea Walking. The space helmet traps air in so you just breathe normally, and there is an oxygen tube coming through the side which keeps you topped up with fresh O2. I opted for this rather than scuba diving as when I had been snorkelling last summer I got very nervous at the sensation of breathing through the snorkell as it reminded me of my trachi. I didn't want to pay for a scuba session and then find I was too scared to go through with it, so this seemed like the perfect option :)
One of the nicest things about coming home was how much I was looking forward to going back to work. It's such a wonderful feeling to want to get back to a job that I love....I'm a very lucky girl.
I am off to do a talk at Harefield tomorrow with Oli; I am quite nervous which is daft, but only because the people who actually physically saved my life by caring for me pre and post transplant (and the surgeon who did my op) will be present so I want it to be good! It's so weird to think that if it wasn't for two people we will never meet, neither Oli nor I would be here now.
And lastly a quick plea: Holly Shaw, a LLTGL Advocate and a very good friend has been going for Gold in her Battlefront campaign. She is holding a Donor day on 7th April and there are lots of ways you can support her in this, wherever you are. To find out more pop over to her website and say hello. Thanks muchly all.
Friday, February 27, 2009
Sunday, February 15, 2009
Sunday, February 08, 2009
Thank you so much for all your feedback and opinions on the comment posted by “Dave.” As promised, here are my opinions and the reasons behind them.
The idea of LifeSharers – the business which was promoted in this comment section here is an American organization which effectively asks people to sign up as members of a group which wants to only donate their organs to fellow LifeSharers. Their reasoning is that this way, people who are signed up on the ODR will be prioritized, which according to them is the way it should be.
It’s a very interesting theory. Basically utilizing a principle of exclusion - “if you don’t then I won’t help you” attitude rather than leading by example.
I can see the idea behind it. The desperation which those waiting for transplant feel when thinking “if you needed this transplant you’d sure as hell be more proactive about carrying a card” but the iea and the reality are extremely different and this principle is not workable in real life.
LifeSharers claims “There is a simple way to put a big dent in the organ shortage -- give organs first to people who have agreed to donate their own organs when they die... Giving organs first to organ donors will convince more people to register as organ donors.”
This doesn’t really make any sense. The only way that would happen is if the law was changed to say that you could only receive an organ if registered as a donor. Which is not the case; this instead is a small group of already pro-organ donation people who have agreed to prioritize each other, not a national movement which will cause a shift in mentality.
The group claims “It will also make the organ allocation system fairer. People who aren't willing to share the gift of life should go to the back of the waiting list as long as there is a shortage of organs.”
Again, I do see where they are coming from. That frustration and anger definitely hit me when I was waiting; knowing that people who would shun the idea of signing up giving something like squeamishness as a reason would have the same priority as me, but that was merely a desperation to survive, fear of not making it. In reality, I feel Organ Donation has to remain a freely given gift. The minute you start attaching conditions it becomes something else.
Other than any ethical issues, the system itself is simply not workable. Emma and Jac in particular have made some great observations on this on the comments section; do have a look at all comments if you can. You might find it hard to believe that some people don’t know how to register or even understand what organ donation is, but every time I do another talk, I meet people that don’t fully understand it all, even though if they sat down and thought about it and knew what to do, they’d probably be willing to donate.
Some of the comments on this very blog have exposed myths still believed within the transplant community. Just to clear those up now: anyone can sign up as a donor – it’s up to the medical team to decide whether the organs are viable. It is not helpful not to sign up because you suspect your organs would not be useable. All the major religions support organ donation. Those infected with HIV cannot be organ donors.
Organ donation is so complex, with so many issues and questions, myths and facts, that if we cannot clearly define it how can we judge people who have not had any personal experience and assume they know enough to be signed up or to miss out?
And on a more emotional level, I just don’t like the idea of it. I find it somewhat spiteful and selfish, and completely contradictory to everything that, to me, organ donation represents; giving, selflessness, bravery, generosity…a gift.
Do keep the feedback coming if you still have opinions on this one; I find it all very interesting indeed.
Thursday, February 05, 2009
Wednesday, February 04, 2009
So I went to see Seven pounds at the weekend.
I haven’t blogged about it yet as I wanted to let it all settle first. I did actually wake up that night thinking about it. If you haven’t seen the film but want to, don’t read the rest of this post as it contains spoilers.
The premise is that the main character (Will Smith) wants to set out to help seven strangers. Organ Donation is the overriding theme of the film. Rather than lay out the storyline I’m just going to assume readers have seen it and talk about my reactions to it.
Firstly I must state; it is not a perfect film. There are inaccuracies, twee parts, unnecessary elements and errors from a person-who-studied-film-at-uni perspective. However my main interest (and reason for going to see it) was to see the handling of the organ donation content.
The main female character Emily had the most impact on me. Same name only highlighted further the similar circumstances she portrayed, and I found her convincing to the point of feeling my toes curl when certain gasps of breath or looks of fatigue took me sharply back to my past.The film is one filled with sadness and pain. Organ Donation, whilst the predominant thread, is not the only subject matter here; psychological issues and coping with loss and guilt are also explored.
But back to Organ Donation. Overall I think it was handled well as a subject. It was taken for granted that the viewer comprehended the severity of the donor shortage but I think the lack of weighty facts made it stronger by making it less preachy. Emily’s predicament was striking and could only really create a feeling of empathy and sadness from anyone watching.
I'd probably say that from my perspective, the best bit about it was the insight given into Emily’s ordeal. Because of this I think a great many people have been given an insight into life on the list; not a wholly accurate one, but a good one nevertheless.As I say, the film is a sad one, and by the end I couldn’t stop the tears streaming down my face. Part of that was due to the plot and where it was going, part of it was reliving extracts from my past as they were played out on the screen. It made me think a great deal about my donor and their family. A lot of my sobs were for them.
I’m glad I went to see it, I’m glad it was made, and I’m very glad Will Smith took the role as it has heightened the Film’s profile a great deal. But I found it so very emotional...I don’t think I could watch it again anytime soon.