Tuesday, March 31, 2009

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!

Tuesday, March 24, 2009

Look, it's me. Back when I was small and cute.

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 can only really answer for myself on this one; I blog because I like to write. And, let’s face it, I like others to read what I write. I blog because I find it cathartic, I find it helps unjumble the spaghetti of my mind. I have used it as an outlet when the words are too frightening to say out loud, as a method of communication, as a diary, as a soapbox, as a notepad, as a canvas.

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

Sorry for the long delay between posts yet again...

You can always tell when life is going well as I am around less to write long waffle, so yet again do take it as a good sign :)

On Friday 6th, Oli and I went and spoke at a day organised by Harefield for Transplant professionals. It was a fascinating day (I attended some of the other talks) and it was wonderful to get to see so many members of the Transplant team that I don't really come into contact with any more. One of the weirdest moments was sitting on a chair having a cup of tea during one of the breaks when two of my transplant surgeons came and stood either side of me; the last time I was looking up at their faces together was when I was in ICU fully ventilated so it was a very bizarre feeling!

Things have been pretty manic really; I mentioned below, we had a busy but wonderful day on Saturday with a LLTGL meeting. I have a huge work thing coming up; my choir, which I started up in a local High school back in September won a competition at Christmas and consequently have a rather large concert coming up. They are working so very very hard but it's a huge mountain of a challenge and most of my time is going into preparation for it at the moment. At some point I think I'm supposed to be fitting a birthday in this week.

On Monday I was back up at Harefield for a checkup and I'm pleased to say it was shiny gold stars all round (whoop whoop). Sats monitor bleeped merrily at 100%, lung function is STILL creeping up, kidney levels were much better, in fact so much so that I was allowed to bipass Mr Kidneyman and head straight home! A glowing report and a fond "don't come back anytime soon" to send me on my way. Couldn't ask for any more than that really could I. I cannot explain how wonderful it is to be so busy and to still be well. I don't think that will ever stop being a novelty.

I shall try and write again a bit sooner but for now here's a picture of my mother demonstrating her delight at her favourite birthday present; memotoast - a plastic toaster which pops up toast-shaped memos for you to write notes on. Clearly nothing like my calm and mature self.

Saturday, March 07, 2009

I was at a LLTGL meeting all day today. It went really well and was so fantastic to see everyone and catch up; I do love what I do and the fantastic people I get to know through doing it.

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.

View this montage created at One True Media
A day in the life of Jessica Wales

Thursday, March 05, 2009

wooaaah, where did the last week go?!

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.