Monday, April 28, 2008

First of all, fantastical (a word? it is now...) news:

My friend Jac got her transplant on Friday! A very modest and quiet lady, Jac has been an absolute source of strength for me for years, talking me through my most insane moments in her calm and rational manner. Am totally and utterly delighted for her and her family. If you haven't read her blog before I do recommend you go and give it a read.

This weekend A and I went "oop North" to Derbyshire, to visit my Grandad. He is now a grand 92 years old and rather fantastic. Derbyshire is a gorgeous place, one that holds many fond memories from childhood. It's amusing how rose-tinted your memories get, as I am sure I would complain bitterly at being dragged out on walks along the Edges, however now I look back on these walks with an adult (well fairly) eye and see them for the beautiful pleasures they are.

Emmie stumbled upon a rather ingenious idea for raising funds for LLTGL, that is the Great British Duck Race. If you hadn't heard of this before don't worry, neither had I, but it sounds like a rather awesome day and even more excitingly we have entered Live Life as one of the sponsorable (more made up words) charities, so by clicking here you can not only adopt a duck to take part in this race, but raise funds for LLTGL whilst doing so. Woohoo!

A final random note: to the nice man who when the heavens opened as the commuters got off of the train this evening, paused to allow me to hide under his umbrella from the torrents which had already soaked me, thank you; my inappropriate shoes are remarkably dry and unbattered considering. To the other five people holding umbrellas that had already walked past however...I toss my damp hair in your general direction.

Wednesday, April 23, 2008

I know I know, I am a terrible person who is ridiculously behind on her blogging and I vow not to let this lapse happen again!

I had to have the day off of work the other week as I had exhausted myself. Now before anyone gets too worried about work being the cause, I am thinking running from place to place (Leeds > Germany > London > Newcastle > London) and not stopping for 16 days on the trot was probably the cause…

So anyway, work (being great) insisted I take the day off, so for the first time in ages, I lay in bed as if I was “poorly” and tried to rest.

And I hated it. As I lay there, flicking from channel to channel trying to find something which wouldn’t slowly kill off my brain cells one by one, I had a very sharp and vivid flashback to when I was ill and this was all I could do, and it panicked me. The feeling of being home and in bed whilst everyone else is at work now for me merely holds bad memories. As A said, I am going to have to get used to enjoying days off again!

Last weekend, A and I decided to do a massive spring clean and essentially remove as much of 3 years worth of contents that we possibly could. In the past, due to my naughty behaviour, the only ever time A got the chance to do big throw-outs is when I was away in hospital (safe from any dust and cleaning product fumes that might emerge) but we had never, both of us, really gone over the whole house.

Having never done a full spring-clean before, what I didn’t expect was the emotional side of it all. Hidden away in cupboards, buried under various documents and letters, emerged traces from my past. A letter I had written to a friend, chatting excitedly about finding “our new house” which never got sent as I had a rather large pneumo the day after which kept me out of action for some time, cards from when I was in and out of the Brompton like a ping-pong ball (how people kept up the patience to time and again write to me I have no idea but I am very grateful), a letter from a beautiful young lady with CF who is sadly no longer with us as her transplant never came, lung function reports which at the time I was pleased with as they’d gone up 2% but I look now and cannot believe the difference. Bitter-sweet memories which are tugged to the forefront of your mind by triggers like a card or a gift, which is one of the reasons I am such an atrocious hoarder; things hold so much significance to me and to various episodes in my life.

I have also signed up (third year running!) to do the hydro active, which now appears to be called the Adidas challenge but which shall always remain hydro active to me. People are already joining the Angels so please do hurry and sign up if you want to help us raise money for the CF Trust. I am looking forward to getting training and hopefully my ankles will be significantly thinner than last year...

Wednesday, April 09, 2008

A while ago the CF Trust asked to give a presentation to BOC (British oxygen company) and didn't think too much of it, however as it loomed nearer it suddenly appeared that I would be speaking in front of the key representatives for 20 BOC related oxygen groups worldwide. Slightly more nerve-wracking than I thought then.

However the day itself went really well. Firstly I must point out this was the company that supplied my chemist with Cylinders, when Oxygen supplies were good. The changeover (a result of privatisation) was to a different company entirely, although I obviously aired my grievances to ensure that everyone present would be acutely aware that this mustn't happen to them.

I had to speak for an hour, so I chose to educate about Cystic Fibrosis as much as possible, so included a great amount of detail about CF and about life living with it. It was pretty similar in many ways to other talks I have done, but with a lot more focus on oxygen. Obviously.

I was overjoyed to be given the chance to talk to BOC. I think young people using oxygen is a greatly neglected area, and this belief is supported from the very first booklet presented to me when I initially received my oxygen concentrator. There was a nice smiley woman, glamorous looking, but definitely in her 60s, sitting in her armchair smiling wearing her nasal specs with the concentrator behind her. The majority of advice, expectation of needs and service is angled towards older (predominately COPD) patients, which is quite understandable seeing as they make up a vast majority of the customers. However us young folk - not only pwcf but those with lung diseases like Rachel and Nattie have who I have talked about before – we are a significant group too and we have very different needs.

Living as a 20-something on oxygen, you want to go out, you want to carry on living, go to restaurants, out with friends, perhaps even clubbing (only did it once but damn glad I did). I wanted to talk about the psychological issues but wanted to do something which would make the assembled understand a little better what it is like going out for the first time wearing nasal specs. So as I broached this subject, I presented each person with luminous thin strips of post-it notes which they were instructed to stick to their face. An amusing site, but a serious reason behind it; the acute knowledge that there is something on your face which shouldn’t be there but that everyone can see…that’s what I needed them to feel .When I told them all they could remove them several of them actually kept them on, which I saw as a gesture of support and empathy, and I was touched by it. Either that or they liked the luminous colour against their skin...

I met some great people and I hope that I gave them a good idea about what living with (not just living on, but living with) oxygen is like. Whilst I am free of the constraints of 24 hour O2, so many people, old and young, require it 24 hours a day, and for these people it is absolutely vital that they have a good quality service run by supportive and empathetic people who understand their customers’ needs.

Wednesday, April 02, 2008

I will write a longer entry soon (honest) but whilst I am rushed off my feet, here is the article recently published by a national newswire.


Ps - health fab, hence mad running-aroundness. I was in a bit of a car-smash on monday but am fine (car however is not).


Two inspirational young women were celebrating today after their campaign to highlight the chronic shortage of organ donors was given charitable status.

Emily Thackray, 24, from Ewell, Surrey, and Emma Harris, 33, from Pewsey, Wiltshire, both have cystic fibrosis (CF), the UK's most common life-threatening genetic disease which affects various organs of the body, in particular the lungs and the digestive system.

The average life expectancy of a CF sufferer in the UK is just 31 years old, with the majority of deaths caused by progressive lung damage.

In 2005, Emily joined thousands of other people in the UK on the transplant waiting list.

But faced with a 50% chance of dying while waiting for a transplant due to the lack of donors, she and Emma decided to take matters into their own hands and launched the Live Life then Give Life campaign in 2006.

Since then Emily has received a life-saving double lung transplant and the campaign has grown beyond all expectations with high-profile support from celebrities including Richard and Judy, Kerry Katona, Bill Bailey and John Terry.

The pair have now taken on four other young people - all of whom have been personally affected by the shortage of donors - to help run the new charity.

Emily said: "I am only alive today because someone out there not only made the decision to donate, but then took the time to sign up to the organ donor register. I remember my donor with every breath I take and have accomplished a million and one things I never thought I'd be able to do.

"The fact that we have been given charitable status means more to me than I can explain; we have always had the passion, the drive and the motivation to change the current state of organ donation in the UK, and now we have the means."