Monday, January 23, 2006

A year ago today my friend Gaz finally lost his battle with CF. It feels very strange thinking about that day exactly a year ago, in so many ways it still feels like yesterday, as I cant believe I will never talk to him again, but in other ways it feels like a lifetime ago. I posted the following on our website:
"Dear all,
As many of you will know, it is a year ago to the day since Gaz lost his battle to CF. I had known Gaz for some years, and over that time he had become much more than just a CF acquaintance. We would chat on the phone, on the net, via text, email and then after being inmates together in the Brompton in summer 2003, face to face.
I am not a religious person, but as Gaz’s health declined, I would sit on my bed before going to sleep with my fingers crossed really tight and wish very hard that that night he would get his call. Then on the 23rd of January 2005, I got the phone call to say that time had run out.
Cystic Fibrosis is slowly being beaten, treatments are improving all the time, the life expectancy is still going up, and children and adults are living full and active lives. But pwcf are still dying. Because CF still has no cure, and because of the lack of organ donors.
Today I am remembering Gaz for his cheeky smile, his silly voice that he put on to cheer me up, his laugh which was so infectious we would both end up dissolving into coughing fits and his warmth and affection which made him one of the best friends I have ever had. I will be in chat tonight, and anyone and everyone is welcome to join me to remember Gaz and all those who have lost their battle with CF.
Love to you all."
A friend of mine pointed out that today is also a celebration. A celebration of how one person can inspire so many others, and his legacy is still living on in so many ways, the T shirt project,, not to mention all the people that love him.
The past week has been incredibly busy, too busy really so I am watching myself this week to have a bit more of a rest! I spent the weekend with my family in Derbyshire, celebrating my grandad's 90th birthday. That man is one of my idols in life; he just loves life and enthusiastically drinks up every possible positive point he can. A good way to live really, yay to that!

Wednesday, January 11, 2006

I am starting off the new year with a new project: T shirts. Well actually I tell a lie, it is not a new project, it's been in the pipeline for a very long time, but we are far closer than we have been to actually making this a reality now so it's all very exciting!

As I have the memory of a goldfish and cant remember if I have already described them, I shall do so anyway: They are organ donor awareness T shirts, designed with two things in mind, 1) To break the social taboo of talking about organ donation and 2) To have a positive statement, i.e I (the wearer) support organ donation, not a nagging you should support organ donation instruction.

So. The final slogan is as follows: "I'd give you one..." With an organ donation symbol underneath. Things really started moving forwards as of yesterday so now I am trying mightily hard to focus on things such as funding, expenses and distribution, as opposed to colourschemes, celebrities and matching accessories, all of which my natural girly instincts home in on. I am working with a wonderful pink lady on this, who is fab, but has similar girly tendancies so we need to be reminded every now and then by business minded folk of more boring and sensible matters to attend to (and I hate to say this but they do tend to be male). In any case, things are moving forward and I am very excited about the whole campaign, pictures and more details to follow soon so watch this space!

This morning I received a letter from Harefield explaining a new type of organ donor, called non heartbeating donors. Basically it allows people who do not fulfill the normal requirement of brainstem death to donate but have suffered a major fatal injury, and everyones wishes is for that person to be a donor after their death.

It is a relatively new proceedure by the looks of things, which makes me slightly nervous, although with donor rates as low as they are at present, I am not surprised they are investigating this option so quickly. I have been waiting 10 months now, with not even a false alarm, and am all too aware of how many people run out of time. It is always so hard to think about it from the donor perspective, but I try to remember that that person and their family are chosing to make the most amazing gift, and their dreadful tragedy came prior to that decision of donating their organs. Someone somewhere is going to make that decision and save my life, I am sure of it.

Tuesday, January 03, 2006

YAY! A very Happy New Year to one and all!

As we are already 3 days into the new year it is evident that neither punctuality nor organisation are new years resolutions of mine. Christmas was fantastic, the whole thing spent knee-deep in family, but that is what it is all about. Christmas eve was as traditional as ever; well when I say traditional I mean traditional within my family. Every Christmas eve as far back as I can remember, we have had home made soups for lunch - carrot or chestut, accompanied by crusty bread and home made cheee straws, made by my mum in the morning, then we all settle down to watch "It's a Wonderful Life" (again, done every Christmas eve, but at no other time!) and then in the evening we go to the local Indian restaurant, which is probably the least traditional bit but I love it!

This was our first ever Christmas spent in our new place, so it was particularly exciting. I managed to wake up in the morning and sneak his presents under the tree whilst he was still asleep, and exchanging presents that morning sitting by our tree was just lovely. The rest of the day was spent seeing families, exchanging presents, and eating far far too much. Boxing day is also fairly traditional in my family, where we all go to my grandmas and eat even more turkey, and the extra special mushroom rolls that only come out at christmas, and are only made by grandma, and eagerly consumed.

New years eve was spent at a party in battersea, and I came up with the cunning plan of wacking up my O2 to allow me to dance for WHOLE songs at a time! So I had a fantastic time. For the first time in many years, I didnt find myself fighting back tears at the stroke of midnight, which I am taking as some sort of psychic preminition that this year will infact be a year of good luck, good fortune and good health. YAY.

2006? Bring it on...