Saturday, February 25, 2006

I am having a rather fearful day today. One of those days when all my hidden fears seem to surface and pummel me all in one go. I think it has been triggered by finding out a few things recently, namely hearing about someone who recently passed away post transplant, someone who recently passed away pre transplant, and that the transplant rate at harefield is still slow.

All of these factors have pushed me into one of those panics, where I feel like I am on a rolercoaster hurtling towards oblivion, and all I really want to do is stop the ride and get off. But that isn't an option, you have to ride it out, whatever the outcome. And of course I don't just want to stop, I have so much going on, I think it is just my ostrich reaction which surfaces periodically, and I am sure it will be gone by the end of the day. Of course I am cross with myself for feeling this way, as what I should be doing is keeping the families who have lost loved ones recently in my thoughts, and reminding myself that I am SO lucky to have got this far...and to still have that chance. Where there is a chance, there is hope. And the odds that I will get called tonight are as high as any other possibility. (Check me out, talking myself out of a fearful emotional moment which has sent me back to bed at 12.30pm - shocking).

Other than my emotions going a bit doolally (great word) this morning, the week has been ok; T-shirts are now progressing nicely, and we are SO nearly there!! On Thursday, 2000 Ts arrived in liverpool, and with press releases being written and the website pretty much complete...we are so nearly there! I cant believe this campaign is actually going to happen, I think when I first see someone out and about in one of my T-shirts I will cry! Incidentally the website address is or (whichever is more memorable!) so PLEASE check it out. Oh and tell absolutely everyone you have ever met about it. Thanking you muchly!!

Saturday, February 18, 2006

The other day I read in a bird book (the big book of birds or similar) that Robins are pugnacious creatures. I took an imediate like to the word, despite not being entirely sure what it means. I have since discovered that pugnacious means "eager of quick to argue, quarrel or fight" which amused me even more, as Robins are seemingly such tiny sweet creatures.

I decided to take inspiration from George and co when dealing with the suits at the top who, yet again, brought up issue no. 49650 with the T-shirts. This time with a minor panic that they will be a sold item and that it looks like we will get national press coverage. I find it all very hard to understand as surely national coverage of the campaign is a good thing?! It seems to me that sometimes the people at the top get so bogged down in rules, regulations and red tape, that they forget why they are doing the job in the first place. The end result of the conversation was to continue as we are anyway, which is good news, so we are still aiming to launch 1st week of March. Getting close now, scary but also rather exciting!

Yesterday was exactly a year since Harefield confirmed that not only did I need a transplant, but that I was unlikely to survive beyond a year without one. And 12 months on, I am still very much here, and I felt that yesterday was a day to be very smiley indeed and appreciate that fact! I am really extremely lucky, my rate of infections have slowed slightly, giving me more of a chance, and I survived that horrific lung collapse in the summer, and have come out the other side. Being that I am still on IVs and not feeling great I didnt go anywhere to celebrate, but some friends came over in the evening which was really lovely. Also wore my favourite earrings in celebration. Am going shopping with my mum this afternoon, I feel the need for something new and sparkly. Yay!

Friday, February 03, 2006

It is 7am and I am up far too early for my liking, with T shirts on the brain, as at the moment I seem to live, sleep and eat T shirts! Things are going really well, but there still feels like such a long way to go, which is slightly concerning as we are hoping to launch first week of March (eep). It seems to be weird things that are taking up the most time; who would have thought for instance that there was so much to chosing an actual plain T shirt? There are hundreds of them, all different makes, sizes and prices, and it has been a rather complex task to chose our final Ts! Emmie, my "co-pilot" of the project, brought her dog daisy with her last week, who got terribly over excited and helped us by intermittently sitting on T shirts and then running around knocking things over with her enthusiastically wagging tail. After an hour or two she wore herself out and fell asleep for the rest of the afternoon.

However just when I am flagging, as admittedly I was last night, I get another harsh reminder of why I am doing this. My friend Chloe, who was just 19 lost her battle with Cystic Fibrosis on Tuesday night. Chloe was a lovely warm, friendly clever girl, she wrote the CF definition on mine and Gaz's
site. She had been waiting for a transplant for nearly 2 years, and it just never came. It is another horribly real reminder of why I am doing this; there is a chronic shortage of organ donors in this country and I am sick of my friends dying. Not to mention that horrible cold realisation that grips my stomach when I remember that my time is also running out.

On February 17th, it will be a year since I was given about a year to live. I am actually looking forward to it, as I feel it is a positive marker, I am obviously still so much more well than they anticipated, so I think it will be a time for celebration, of achievement of cheating CF for just that bit longer. And the longer I can fight it, the better my chances of getting a transplant. And in the meantime, watch this space for the launch of the live life then give life campaign...