Wow!!! One long blog coming up, so get comfortable!!!

First of all I must just quickly say thank you to everyone who replied to my last post, you made me feel much better!

Right.... yesterday was The Breathing Life awards, and it was ABSOLUTELY AMAZING!

I've been thinking about life post transplant recently. The whole idea of life afterwards is exciting, amazing, scary and daunting all at once. I am used to having Cf as I have dealt with it for 21 years, but when I have new lungs I will be in a whole different world of sensations, feelings as well as a new medical area to have to learn about. As you can imagine thinking about all of this in any detail is rather overwealming.

Over the last few days I've been focusing specifically on something I hadn't really thought about. Apart from being in a completely unfamiliar world physically and mentally, my body will change in its appearance too.

I will have a scar accross my chest, probably under my breasts running from one side to the other or possibly straight down the middle, it depends on surgeons preference. I will probably also have a few smaller scars on my upper body from the chest drains I will have in.
My skin will probably have quite a lot of spots etc because of the shock to my system and of course the barrage of drugs that I will need afterwards. Hopefully this will calm down as my body adjusts.
I am hoping that my back which is quite curved at the moment, something I absolutely HATE and really upsets me, should straighten slightly. I was unaware of this until recently but apparently it can happen, and for me would be a real bonus as I have tried without success to get help with my spine for years.
One aspect that does bother me (even though I know it shouldn't) is that of body hair. One of the anti rejection drugs can make hair on arms, legs,face etc grow much more and quite dark. As I am very dark haired naturally this may make it worse. I know there are lots of ways to remove or bleach hair, (i cant use electrolysis due to infection risk) but I hate the idea of either having to put up with the problem or constantly struggling to cover it up.

These problems are not big in the scheme of things and I feel bad for even blogging about them when some others have to put up with so much worse, but it does bother me and sometimes these issues as well as everything else can just make it seem very very hard and as though there is no end in sight, just new problems.

Rest assured I will face anything that comes along, and hopefully find solutions with the support of others. I suppose this is the very reason I shouldn't give myself too much time to sit and think....
x

Sorry for going AWOL on you dear blog!

I have been struggling to finish current uni work and made a deal with myself (probably the first sign of madness) that I wasn't allowed to blog until essays were finished. So for those of you that are interested, my first course is now finished but I wont know if I have passed for another few months. I have just finished essay 4 of 7 for my second course, and the next one is due in 3 weeks so not much of a rest there!

Apart from that, I'm pretty much the same as usual. My stomach has been misbehaving lately, leaving me feeling and being very sick. This isn't unusual for me, just not particularly nice.

I am very much looking forward to the awards, they are just a week away now. It seems like it is going to be a fantastic night, which I will blog about in detail.

This isn't a very long blog because I'm finding it quite hard to put what I want to say next into words. Its not particularly imporatant or anything but its just not sounding right and is making me frustrated! I'll leave it there for now and write again when I feel I can get it right.

Hope your all ok xxx

The first thing I saw when I opened my eyes were three big pink star balloons with "happy 21st birthday Tor" written on them in glitter, and tied with various pink sparkly ribbons. My mum and dad brought all my cards and presents into my bedroom so I could sit up in bed to open them, with a cup of birthday tea! My mum plonked a rather large hat on my head that was shaped like a birthday cake with candles on top. As you can see I looked damn sexy in it! (excuse the bed hair i had literally been awake for 5 minutes)

My mum and dad had bought me lots of lovely presents including a links of london sweetie charm bracelet and 21st charm. I also had loads of cards. Some of the people from where I used to work had all put money together to buy me some theatre tokens which I was really pleased with, such a lovely thought. My friend Becky sent me some beautiful flowers, and some bits and pieces from her trip to Florida which again were lovely.

I then got up and started to get my treatment done etc, my nan came over and gave me her presents (a beautiful ring) and then went downstairs to help my mum get things ready for my party in the afternoon. We had invited my family and friends over to share my special day. I spent the rest of the morning staying fairly rested so I would have energy for the afternoon.

After lunch my best friend came over to give me her presents and to fix my hair for me as I find this really tires me out. She arrived in a flurry of helium balloons (it realy is a wonder she didn't blow away!) and brought me some great presents. She is such a special friend, and had put so much thought into everything she had done, I truly am blessed to have her in my life. She had handmade me several things which were wonderful and had obviously taken a lot of time and effort, and bought me among other things a hand charm to go on my bracelet, which she informed me is making the symbol for "I love you" in sign language! She has also given me a voucher to visit her house for a beauty treatment day (shes a trained beauty therapist) and 3 course lunch which is something to look forward to in the coming weeks.

I had a visit from an old friend which again made things very special and then rushed about getting my second lot of physio done and getting dressed in my party frock. I was still getting ready when people arrived and the rushing about completely winded me so i had to calm down a bit before coming down, but we got there in the end. Everywhere was decorated with balloons, 21st banners decorations and confetti, even my oxygen cylinder had a large 21st badge stuck to it! My mum had surpassed herself by making a huge buffet and had a photo cake of me as a baby. Everything was so special.

Loads of people came to see me and it was great to spend time with everyone, I have some wonderful friends. It was lovely and suny so we adjourned to the garden. I have so many photos taken by various people and also had little cards that guests could write a birthday message on, the plan is for me to include them all in a scrapbook of my 21st when I have time.
All in all I had an amazing birthday, spent with fabulous people and I am a very very lucky girl. I have to say that my parents had worked so hard and put so much effort in, especially my wonderful mum. She made everything perfect, and I cannot put into words how grateful I am for what she does all year round (let alone my bday) and how much I love her.

Me and my lovely mummy!

By the end of the day I was absolutely exhausted, but very happy. Thank you to EVERYONE who facebooked me, texted,sent cards, presents and came to my party.You all helped make it so brilliant, and it was very much appreciated!

xxx

I'm very sad to say that Sam, an inspirational young lady who had cf and was waiting for her transplant passed away last night. It was because of Sam that I started this blog, she had begun writing one and encouraged me to do the same, since then I have found great comfort in getting my felings down.
Sam had been ill for some time, but the pure strength, optimism and courage she showed were a testament to her. She always had a smile and kind word, we used to chat online alot and she offered me a lot of support. I hope in some way I did the same for her.

Sam, I will miss you so much. I am so sorry that you didn't get your happy ending, you fought so hard and will be an inspiration to me forever. I will miss our chats, and have lost a good friend in you. Breathe easy now, no more fighting.

Thinking of her family and friends at this sad time.

If anyone reads this who hasn't signed up to the donor list please consider it. If there were more donors things could have been different for Sam.