x Think positive!! x

Yay!! My iv's have finished and Lance took the needle out today and I was finally able to have a proper shower after 2 weeks which was great :)

Havent really done much in general - little bit of shopping, have been playing on the wii-fit plus and sorting out my messy room and the mountain of ironing which has built up seeing as i havent had the energy to do it what with being unwell. I did some today though and plan on doing another handful tomorrow after visiting daddy at the pub.

Oh of course the bestest news - we have finally booked a holiday!!! Woohoo im so excited i need to go now! There is 10 people going and we have all got a villa in Spain right near malaga. There is me and Scott, 2 other couples and 4 other boys who are going for the party side of things (one of them being my little brother!! haha how funny). He cant wait and he will only have just turned 18 when we go in June. Picture of the villa:

Now for the main news - the PEG!!

Well Lance and Jen came round on Monday as i had agreed to have it and they told me that it may be possible to do it next wednesday....at this point, i nearly pooed myself as it was a shock that it would be that quick. We talked alot about it and most of my questions were answered but as soon as they went, i began to panic and rang and texted everyone close to me for help!! Most said it was a good thing to get it out the way but i still needed to get my head round it. However, when Lance came round today, he said it wouldnt be next week but would hopefully be within the next few weeks and that they could hopefully give me a date when I go clinic on Tuesday.

I am attempting to look at the positives at the PEG and try not to worry. I am doing it for the benefit of me, it should help in many areas of my health, and will take of lots of pressure and nagging!! I have lots i could say on the subject but i will leave it for now and try to stop thinking about it as I cant do much about it - its gonna happen so I will deal with things as they come.

x Lots of love x

x Another BIG, unwanted decision x

Lets start on a good note shall we?

This port is bloody brilliant :) yes i did actually say that!! I didnt manage to avoid the iv's and started them a week ago today. I really wasnt well but refused to go back into hospital as i would have gone mad!! I pooed myself allday before going up to the hospital to have the needle put in because I didnt know what it would feel like and i was still healing from the operation so was worried. I put on my numbing cream which went all around the port instead of on it - typical!! I didnt feel a thing and it took 5 seconds - i was so shocked and relieved after that i cried!! Its been a week now and im starting to cough less and have more energy but i keep forgetting im on iv's as normally i am restricted in what i can do so im really happy. I suppose it was worth the pain of the operation :)

Friday, me and Scott went to see a adult puppet show called Avenue Q. He had brought me tickets for xmas. We drove upto London as i didnt want to be out in the cold too much and plus there werent many trains anyway because of the snow. It was so funny and i would recomend it as a great night out - apart from getting lost on the way home as the bloody sat-nav decided to go nutty and kept changing the route so we went round in circles 3 times but made it home finally!!

Now for the big decision - I think i have finally decided to have a PEG fitted. This is a feeding tube which goes into the stomach so that I can be feed extra calories overnight. I have done absolutly everything in my power to avoid things coming to this but i cant do it and i dont see any other options left. It has been exactly 2 years since i lost all my weight and im so fed up of worrying about food and trying so hard to make sure i eat as much as i can. I have tried NG tubes but that was so painful because of my polyps so that is no longer an option. I have tried to have as many supplements as possible even though they are horrid and ive tried megace, which increases your appetite. It will involve having another operation but hopefully only being in hospital for about a week.

I hate the thought of something sticking out of my stomach and that it is going to hurt. I am really trying to look for the positives in it so that i will get myself through it. This is a VERY big step for me and i am quite proud of myself for even considering it. I dont really know what else to say as talking about it too much lately has resulted in tears :(

Will update when there is more news to give.

x Lots of love x

x Piss off 2009 - here's to 2010 x

Happy New Year everyone!!

I am so glad this year is over. What a shit year (healthwise) it has been so next year has got to be better, hasnt it??

Sum up of 2009 - Went into hospital in March and also got MRSA. The drugs used to treat this gave me a big allergic reaction, which was a big rash from head to toe which lasted at least a month after the drugs stopped. Was back in hospital in June for a routine 2 week IV course. In July, my lung function dropped from in the 30's to the 20's with no real explanation. August, one of my best friends Vicky lost her long, hard battle with Cystic Fibrosis which broke my heart and still does to this day. September was another hospital admission of 3 weeks because it was a bad infection and i had to give up my great job at the nursery as it was making me ill. October finally diagnosed me with CF related diabetes. In November, I lost another close friend Anna to CF and finally, December was another hospital admission and a partly collapsed lung. Wellllll.....i think thats everything!!

Dont get me wrong I have had such good times in 2009 too. I graduated university with a 2:1, I got a new car on the disability allowance, I had a great 21st, my daddy took over a pub :) and I got fitted with a portacath, which i hope will be easier for me to have IVs and less hospital admissions!! I am also thankful that everyone I love in my family is still around and my brilliant boyfriend of nearly 4 years is still by my side and amazing as ever.

Havent really got anything more to say or i cant think of anything else lol....hoping 2010 is much better healthwise. I am trying my hardest and will continue to do so as its quite scary when you really think about things :(

x Lots of love x

x Christmas x

I havent wrote in ages!! Ive been so busy!!

Managed to come home on Monday 21st as planned as was looking forward to seeing everyone from home but then the snow decided to show itself!! No-one could move or come down apart from my fabulous boyfriend who walked down here with the doggies!! The run up to xmas day was made as i had to wrap everything, check everything that i had ordered online from hospital and get the last little bits and pieces from shops.

Christmas day was great!! Was spoilt by mummy, daddy, scott and his family. Scott picked me up from my house at 11am (still couldnt drive as i was too sore and stiff) and we went to his and came back to mine by 1pm. We had xmas dinner mmmmmmm.... and then went up to see Daddy and spent xmas evening in the pub!! How great :) By boxing day, i was knackered and did absolutly nothing!!!

Since leaving hospital which is just over a week ago now, i have already been coughing alot and its really got me down. Sometimes you just think 'give me a break!!'. I had clinic yesterday anyway so went along sulking and not looking forward to what they were going to say. Turns out it wasnt too bad - my weight was the same which i was happy with considering how shit i was feeling and i didnt do lung function. The coughing is due to when the top bit of my left lung had collapsed and now it had expanded back, it was still clogged up from before - great!! Got some oral antibiotics to help so am really hoping they work. Lance took the rest of the plasters off from over the stitches and they look fine - im actually pleased!!

Also on a CF matter, I spent most of Sunday night quite teary.... A girl called Jessica Wales, 20 years old, has been waiting for a lung transplant for 4 years. She was taken really ill just before xmas and spent it in hospital. On sunday, it was said that she had taken a turn for the worse and people were really worried she wouldnt make it through the night. Just before i went to bed, i looked at some facebook statuses on my phone and one of them said that she was having a transplant! I went to get the laptop and had a look for myself and it was true. She had been called in the evening to say that there were some lungs for her and it turns out they were a match and she was currently in theatre! As i write this, she is in intensive care but stable. I dont even know her that well but have followed her story but it still made me teary and it just shows you, never give up and miracles can sometimes really happen.

I am looking forward to New Years as me and Scott (and hopefully my best mate Steph and her bf) are off to Canterbury to dance!! Will let you know how it goes!!

x Lots of love x

x My little port x

I did it!! I actually went ahead and had my operation for my port!! I know its not a major operation and its fairly easy to do but im quite proud of myself for agreeing to it and actually going through with it. I didnt sleep at all wednesday night due to nerves and then everyone started turning up at my door from 8am onwards. First the anesthetist lady turned up at 8am to ask me questions and tell me what would happen and she was lovely but then the surgeons registrar came in to talk about the procedure. He kept talking about me having it put in my arm and i started to panic as i wanted it in my chest. I know some people have it in their arm but because of my struggle with weight, there is a risk of it pushing through the skin and coming out your arm - no thank you!! Thankfully, Lance came in and saved the day by demanding i had it in my chest. He actually looked really angry with him and if i hadnt have been so scared and drained of any sense of humour im sure i would have laughed!! The surgeon came up and he was lovely and agreed the chest is an easier place and he was very happy to do it there.

I had to change into a lovely backless number which touched the floor lol and then was collected at quarter-past 9 by a porter who wheeled me down in my bed to theatre, along with mummy and lance of course. At this point I said i couldnt do it but they didnt listen to me and connected the drip to my line. First the painkiller is pushed in and then the anesthetic, however, i was told that i made them all laugh because the painkiller started to go in and i fell asleep before the anesthetic went near me. I dont remember anything apart from feeling very lightheaded for 2 seconds and then waking up in recovery.

First thing was me asking for a drink as my mouth was soooo dry and then Lance turned up to get me - typical Lance first words were: "How does your new peg feel?" and which point i promtly and loudly told him to piss off!! Mummy was waiting for me on the ward and then Daddy turned up and then Scott came after work. I had lots of texts, phone calls and emails from people asking me if it went ok which i tried to answer as soon as possible. I had been back on the ward 10 minutes when Lance came to rip out my line as i no longer needed it in my arm and change the dressing over my port as the needle wasnt protected. These both really hurt!!

Me waking up looking very attractive!

I had an xray as soon as i came back and it showed that i had a numothorax, which is trapped air in my lung as far as i have been told. It is small so i have been put on loads of oxygen to try and blast it out. Highly annoying as its a mask with a big tube so all weekend i have looked quite like a baby elephant, a smelly one at that as it is hard to wash at the moment.

The next day was very sore and i slept alot because of the painkillers and the swelling and bruising had began to show. Now it is a few days after the operation and im doing ok. Still sleeping alot which is annoying but ive stopped the painkillers and am trying to manage on just regular paracetamol. Still sore and stiff but thats to be expected for a while. Am going home tomorrow so cannot wait but am NOT looking forward to seeing Lance - he is going to take off the dressings and take the needle out my port and i have already been warned that it will hurt!!

Me with my trunk and port which is covered

Am glad most of it is over now and surely (in the words of D: Ream) things can only get better!! Thanks to everyone for your messages and to some CF people who have given me much needed advice!

x How bored am i x

God - been in here two weeks and i have been soooo bored! Ive had enough of reading, watching tv, colouring and eating - what else is there to do apart from live on the computer allday but then i just end up 'looking' at things on website and before i know it i have spent more money!!

Not really much to say as im still in hospital and nothing exciting has happened apart from my appetite is back fullblown and i am addicted to nandos (we have been 3 times in a week!!). Bearing in mind i have been eating lots my weight has stayed roughly the same - what more can i do!!! NO i dont need a peg as i am eating and wanting to eat and if i just have feed on top of that it will just make me sick. I personally think it has something to do with the diabetes cause since being diagnosed i have lost weight and the insulin - i was told - is supposed to help with the weight. Im only having it with my main meal but my sugars are up and down so it needs to be sorted. I had a reading of 2.8 the other night so they wouldnt let me sleep until it went up incase i went into a coma. After many jelly babies and nasty glucose tablets, 2 hours later i was allowed to sleep!! Fun times!

On the other hand, my lung function has gone up alittle. To be honest, it wasnt an earthshattering amount but its going in the right direction. Ive been going to the little hospital gym in the afternoons which involves me walking there, doing 7 minutes on the bike and walking back. Yay me!! :) Id just got back from the gym when i did lung function so i reckon it could have been more if i wasnt as tired!!

Next thing is my operation on thursday and im pooping myself....sometimes im fine but then sometimes i panic. Hope it goes well and im not too bad afterwards...keep me in your thoughts please!!! Speak to u all once im home!! xxx

x Hospital has come early x

Argh!!! Where do I start...cant believe i havent updated this thing in 2 weeks nearly but hopefully u will forgive me once i tell u why!!

First of all I have to mention that on Saturday 28th November morning, my beautiful friend Anna Le-Ontour lost her battle with Cystic Fibrosis aged just 22 - due to be 23 on 1st December. She fought so hard over this past year which included her being ventilated twice and her heart stopping many times a day for a few weeks. Despite this, she pulled through and managed to get home. However, her lungs had been damaged and at the end her lung function was only 9% and it was all too much for her. Right up until the end she refused to give up and kept smiling and in good spirits for her family and friends. I miss you so much already Anna but ive got my card from you and the memories will never leave.

Without that weekend being hard enough, my chest got worse and i was getting more and more breathless but was due to come into hospital on the 7th anyway. Icouldnt hold on the extra week as it would have been spent just sitting at home anyway so, with alittle pushing from mummy and lance, I came in on Monday. After a week of ivs im starting to feel human again....i havent been online much as its so busy in hospital and the ivs make me sick before i get better but my chest is clearer so its going the right way.

This weekend I managed to meet up with the girlies from work to have our xmas meal. I cant say how nice it was to see them all again and how much i miss them all. Also dragged myself out of bed early this morning (sunday) to complete a 5km walk for Cystic Fibrosis around Greenwich Park. We did it in an hour and a half with the aid of my wheelchair!! It was brilliant and so funny to see hundreds of santas. The weather was terrible when i woke up but by the time we got there it had stopped raining and the sun actually managed to pop out!! Pictures and videos to come soon.

I think thats it for now as im tired and off to find something to eat in this place...just want to send lots of love to some other CF girls who are having a tough time at the moment too...lots of love Gemma, Victoria and Jenni!!!!