Friday, May 26, 2006

I went to that quiz on Saturday night, and had a really good time. It was very therapeutic in the way that it immersed me in the real world, that keeps on turning no matter what happens. It was held in my old school, and it is so strange going back there still! My whole family went and we joined forces with another family who are very old friends.

Aptly naming ourselves "Eat, drink and be merry", we were most definitely the most raucous team there! I am atrocious at quizzes, but somehow round by round we excelled, and it began to emerge that we were clear contenders for first place. Actually when I say somehow I know exactly how, my dad is incredibly clever and seems to know something about everything, and my sister is following suit with that ability to remember random facts and trivia. I do not have this ability, in fact I think I am the complete opposite where even quite simple facts and bits of knowledge just seem to drop out of my head. Sadly the round I excelled in was the Kids TV round - not my proudest moment, but at least I contributed!

I have been to the cinema twice this week, seeing Confetti and the Da Vinci code and thoroughly enjoying both. This is another perk of me doing much more walking in training for September as I have gained a lot of confidence in how far I can walk. It sounds stupid but I sometimes have visions of me walking through somewhere like a cinema, which if you add up the number of individual paces is fairly large, and then becoming too puffed to leave, therefore having to live there and survive merely on pick-and-mix and popcorn. Actually that sounds quite enjoyable, providing the pink and blue fizzy bottles which are my absolute favourite in the whole wide world are there...there werent any on either trip this week, but I was very brave and didnt return home immediately in disgust.

Other than that (and FAR too much talking, but I blame the interesting and fun people that keep visiting me for that) I have done very little this week in anticipation of this weekend. It is a very dear friends hen weekend and I am far too over excited about it all. I am unusually organised and have ordered double prescriptions of oxygen cylinders etc so that I am able to participate as much as possible; bring on a weekend of laughter fun and festivities! YAY!

Saturday, May 20, 2006

Chris, aka Clockwatcher passed away this morning, 10 days after his transplant.

It has been a difficult and sad week for the CF community with a few people going through critical patches and two deaths. My thoughts are first and foremost with their families and friends at this sad and trying time.

My msn name at the moment is “stop the ride, I want to get off.” I am sure everyone has felt this at some time or another, in relation to a certain aspect of their life. That life is hurtling forward and there is nothing you can do to slow it down or to control the direction.

For some reason I feel the need to justify (more to myself rather than anyone in particular) my wishes to undergo transplant. It is a risky operation, and a big one. It is not a cure. They explain all these things when you go for assessment. But for me, it is vital that I am listed for it, that I then have this sort of suspended half life whilst I wait, and that I face those risks head on. For one central reason really and that is that I have to have something to aim towards and fight towards. I always do, that is why I set myself strange nonsensical tasks and embark on scatterbrained projects, because I need an aim to drive me forward. I need to focus on that transplant, and the possibilities which follow, in order to find strength when things do get a bit tough. And that is what works for me personally.

Either way, I think when receiving the sad news of someone’s passing, you should always take one specific thing from it: that you are still here. And I am. I am still here, still able to see friends, to talk and to laugh and to live. And whilst you cant change the past, and you cant predict tomorrow, you can take today and grab it and dance around a lot until you are thoroughly exhausted, (both in energy and in money if necessary!).

I am going to a quiz tonight with my family. We are meeting some family friends there, and we will have a great time and a good laugh and I will come home shattered and ready to sleep! Part of me doesn’t want to go out, I want to sit quietly and reflect and think and ponder my own future. But I will go and I will do so in memory and respect of those who have lost their fight, because I can and I should.

Thursday, May 18, 2006

First thing and most important thing I want to say today: People rock. They really really do. No I havent seen Love Actually to many times, people are just lovely. I got so many lovely responses and messages from people after my last slightly self wallowing post, and well people are just lovely (I know my vocab is rather limited at present, bear with me!) If I said thank you to everyone every time their support perked me up, I would be saying it all the time. So thank you. And I wont say it again I promise!

I had just finished posting last Thursday, and was sitting trying to feel more motivated and proactive instead of feeling sorry for myself, when the phone went, and it was UK Transplant, asking me if I was available the next day to talk on ITN news about organ donation. Being shy and retiring as I am I paused - for breath - and then (slightly over enthusiastically) agreed to do it. So friday morning Sue Saville came round to ask me some questions, and Friday lunchtime on ITN news, there I was, taking my tablets with a doleful look in my eyes, and looking pleasingly yellow I felt, I normally think I look to well in these things! It went ok, bar the rather abominable piano playing which I was somehow talked into as they like to have clips of every day type activities whilst discussing the rather less mundane topics of transplants and death. All in all it went well, and a huge YAY moment for national coverage, plus of course I was wearing my T-shirt!

Last weekend was lovely - it marked 7 years for me and my man, and we had a really lovely time. My lungs werent complying quite as much as I would have liked, but we bought two new films instead of going to the cinema and had a little home movie session instead. Then went out for a really nice meal on the Sunday evening.

I have also resumed training (yay!) as my physio came round on tuesday to assess how things were going, and we went for a walk together - my first walk using my mask. It went fine, surprisingly ok, and better than that my oxygen saturations were good, and my lung function was also better than it has been in a while. So wooohooo!

I am heading back to bed now as my lungs are screaming at me and feeling rather bruised. Totally worth it though - last night was also absolutely fantastic as I went to watch QI being filmed. Stephen Fry is an absolute comic genius and it was extremely amusing. Brilliant night, but am now heading to bed to recouperate. Laughter is most definitely good for the soul and most probably the immune system, but it hurts the lungs somewhat when they are tiny wee!

Thursday, May 11, 2006

After pondering for a while on whether to post this, I have decided to do so, as the whole point of this blog is to be honest, even when I dont think my own emotions are very good ones!

I found out today two people who I know of have had their calls for transplant in the last 48 hours! This is absolutely fantastic news, and when I read about Clockwatcher's on his blog I was over the moon, and immediately jumped onto the forums to post about it.

It is always such a lift when you hear someone else has had their call, it is a boost of reassurance to hear that another person has receieved those lungs they have been so desperately waiting for, almost like a confirmation that it does happen, as sometimes it can feel like this is all a bit ficticious.

But then I seem to get a slight down (ok, big down) feeling, one of jealousy I suppose if I am being brutally honest. I mean how awful is that?! I think it almost feels as though it pushes me towards that 50% that doesnt get it in time, which again is rediculous and unneccessary.

I think there is only one other person I know who is waiting who has not even had a false alarm, like myself, and whilst this has absolutely no bearing on whether you get your transplant or not, it sometimes plays on my mind. Almost as if the false alarm is the dress rehearsal, therefore necessary for the final performance to go ahead. Completely false belief of mine, as the transplant centre have reassured me, but I cant help my imagination being a tad overactive. But after 14 months of waiting, with absolutely no news whatsoever, you cant help but think about these things at times.

Right. Now that moment of selfishness and self-pity is over (see I do have them, I am normal!) I will pick myself up, tell myself what I would tell anyone else, which is to stay positive as it cant hurt and might well help, and tonight will have a celebratory drink for the two recent recipiants, here's to a fast and smooth recovery and a fantastic new lease of life with healthy new lungs!

Monday, May 08, 2006

Inspired by on which students (I am assuming, as they have the most time and creative energy to spare) attempt to create ubersized versions of their favourite snack, my friend Justin and I got down to business on Thursday night to create our very own contribution, (which we are submitting to the site today) so here we have it: the method for our "Big up Bassetts" (ie gigantic liquorice allsorts).

1.Lay out ingredients. Marvel beauty of untouched individual elements.

2.Open pre-purchased allsorts and examine and scrutinize with great precision. Consume a few for research purposes.

3.Use red and yellow food colourings to create pink and yellow icings respectively by mashing appropriate amounts into fondant icing. Use pre-purchased allsort for colour chart type comparison.

4.Attempt to create brown icing by adding red yellow and blue food colourings. Create weird grayish pink colour, re-examine colour mixing knowledge you were taught in art GCSE, persevere, and eventually reach a vaguely pale brown colour (which will later be used as “padding” due to not making enough yellow)

5.Time to melt the liquorice sticks. With carefree abandonment chuck sticks into glass bowl above boiling pan of water, in naïve belief that they will melt in similar style to chocolate. 20 minutes later begin to panic as sticks start to mold themselves to bowl.

6.Hurriedly scrape sticks out of bowl into greaseproof paper and replace in bowl. Cover, realize water is boiling over, and uncover.

7.After a further 15 minutes, examine paper parcel hopefully and discover still very solid sticks. In a fit of rage, hurtle entire paper parcel directly into boiling water.

8.Finally achieve some sort of sticky goo consistency, tip onto greaseproof paper sheet and begin to gracefully roll into shape. Discover liquorice is in fact substance of satan and hammer unrelentlessly with rolling pin. Allow to cool and cut into neat(ish) square shape. Use discarded edges to form round centre.

9.Return to coloured icing blobs. Split pink into two balls and roll into squares to sandwich liquorice square. Roll out yellow into long sausage shape, realize it will appear too thin round its liquorice centre and in a moment of genius use pale brown failure icing to pad the centre of the yellow tube (as discussed in step 4).

10.Repeat step 7 with further liquorice strips, but with newly discovered wisdom (having learned how resilient liquorice goo becomes) wrap in two separate packages in required oblong shapes before boiling. Assemble with matching fondant sticks to create checkered allsort.

11.Place “big up bassets” on a decorative surface along with original allsorts, and admire handiwork. Consider becoming professional chef or similar. Far too much effort and energy required for this project, but amusement value and final result definitely worth it.

Tuesday, May 02, 2006

Since I decided to get all over confident and plaster photos all over my blog making updates has become decidedly more tricky, as I am not quite as good at this as I like to think! In my
training blog today I wanted to put up a couple of pics of me walking up and down the road, and managed to post the same one 3 times. Still not quite sure how!

Bank holiday weekend has been and gone, and it was all gorgeous and sunny so I hope everyone had a good one - mine was great! I had lunch out with my parents on the Saturday, which was lovely, and then Sunday and Monday some lovely friendies from Uni came to visit. That was great, as I havent really seen either of them properly since we graduated, so it was great to spend some good time catching up and gossiping!

In some ways I still cant quite believe I am no longer a student, I think because I am in this limbo between studenthood and working grownup I can still con my brain into thinking I am still a student, but also it just doesnt feel like the University experience, which seems so large and daunting when approaching the beginning of it, is actually over. The photo I have included is of me and some of my friends (including the two lovely ladies who came down this weekend) at Graduation. I had been in hospital for 7 weeks, and was still incacerated, trying to recoup after my collapsed lung, its subsequent operations and resulting infections. The hospital wouldnt confirm whether I could go until the day before, as they wanted to see that I was physically ok to do so, but I was given day release and it really was the best day.

We went to Tesco's today, normally a rather mundane activity, but as we drove past the entrance, we saw the electronic scooter style wheelchairs lined up. Feeling emboldened and egged on by a certain man (who I think wanted a laugh at my driving) I decided to test-drive one round the supermarket for the first time. The first 15 minutes were incredibly amusing as I struggled to get to grips with just how sensitive the controls were, and every time I attempted to move forwards in a gentle and sedate style I would rapidly shoot towards some poor unsuspecting soul in a jerky and rather frightening manner.

Eventually I got to grips with it quite well, and managed not to kill/damage anyone or anything. It was really good fun, and I was enjoying the rather empowering feeling of dictating where I wanted to go in the shop (I am usually sitting in Denzel therefore my "pusher" gets to decide) and so I must have been grinning a bit manically as people kept talking to me! Still would rather be a grinning maniac that people feel they want to talk to than go unnoticed. No wonder I studied drama.