Sunday, 26 June 2011

My 'Celeb Gossip Style' Article

Kerry was quick to dispell rumours today that she is falling off the wagon. Last night Kerry was spotted drinking shots and triple spirits, before being snapped by the paparazzi, laying 'gracefully' on the floor of her home. Kerry, 20, who has recently come into the public eye, said - "If I do only have under a year left to live, I want to enjoy it. I'd rather be out partying and enjoying myself than sitting in everyday moaning and feeling sorry for myself!"
Kerry, was also reported to have had a similar experience last weekend after another night of heavy drinking, our sources tell us she tripped over a dustbin in her home twice, then proceded to speak to the bin, telling it she would stay there until the bin moved.
Kerry, who suffers from end-stage Cystic Fibrosis said - "I feel a bit more comfortable wearing my oxygen out in public now, which enables me to still have a little dance when out, rather than sitting there bored. I've always enjoyed a party and would hate my condition to stop me enjoying myself and doing what I love!"

Kerry after last nights antics.

When asked about the photo, Kerry said - "It's madness you can't have any privacy nowadays, not at the party, or in my own home! In regards to that photo, I'd just walked from the car, in my stupidly high heels and I was absolutely exhausted! A bed of nails would have probably seemed comfortable."
It is unknown yet as to whether Kerry has gone off the rails and become another victim of the young celebrity lifestyle, or if she really is just 'living her life.'
One thing is for sure, she knows how to party.

Hahaaa. I hope you have enjoyed my little pretend 'celeb gossip' type article ;) Clearly I was very bored! Here are a few photos from the ball last night, which raised £440 for CF!

The wonderful Jo and I

Me, Mum, Matt and a CF balloon

Us 3 again
Josh and I :)

Nanny, Grandad and I

CF balloon and my oxygen, lol
Hayley with the oxygen

Grandad with oxygen

Matt with oxygen

Mum with oxygen
Me during Jo's speech, in which I was mentioned :)


Our "V" poses

More dancing, lol

So there you are :) Into Papworth tomorrow if there is a bed. Wish me luck :(

Thursday, 23 June 2011

Kerry, Do You Want To Give Up?

I had clinic yesterday and to be fair, there wasn't much good news.

My lung function was down and my weight was the same!

So, we've agreed the feeds aren't working for me, I have some form of allergy to milk or something in milk and it's not something that can be easily tested for, we've now ruled out lactose intolerance, so it could be milk protein. Anyway, the feed I was having, despite being the highest calorie one, is not for me :(

I've agreed to go back into Papworth on Monday for 3 days, to test a new feed, probably a soya based feed rather than milk based, which should help, if not we'll try another until we get it right. They wanted me to go in hospital for a couple of weeks and I said no, I hate being in anyway I don't see the need because I'm not having IV's, I don't eat hospital food so the 'feed regime' wouldn't be a true reflection of my life, so they've decided I'll go in for 3 days, then go home with the feed and test it out in my normal daily life, with normal eating habits and sleeping patterns and see how it goes. Then have a week or so out, then back for 3 days etc.

I'm really glad we've come to this arrangement, 3 days will be fine for me if I can see an end to the stay, 2 weeks is a long time and when you are trying to focus on going home, it can seem a lifetime away. 3 days will suit me much better.

I'll also be having a 3-day glucose monitor, which is a small needle inserted under the skin around the stomach area, attached to a monitor which checks your blood sugar levels every 3 minutes. This is so they can keep an eye on my sugars and get an idea of what happens throughout the day/night, without me having to prick my finger 100 times a day lol!

It wasn't all rainbows and butterflies, it was pretty frustrating. The weight thing annoyed me. The fact my lung function is down after IV's again annoyed me. The fact I've got to go back in hospital, annoyed me.

But the worst bit, perhaps the most reality-type-smack-in-the-fact bit, was that my consultant asked me if I was sure I wanted to go through with it all, because it's so much work and with how unwell I am, they aren't sure if it might all be too much for me - so was I sure, or did I want to 'give up now' and they will focus on just keeping me well and preparing me basically, for death..
No matter how annoying, frustrating and difficult this is, I will never give up. I am not a quitter and I don't want to die, simple as that!!

So I shall leave it there - I'm Still positive. Still focused. Still determined. Still very hopeful that all the hard work will, eventually, pay off.
&Then I don't even mind if I don't get a transplant, I'll just be so pleased and proud of myself that against all odds, I was on the list and I'd made the (in their words) 'not impossible but very unlikely' actually happen :)

If you are reading this and are faced with difficult things in your life, hard decisions, tough times, situations that seem like they will never sort themselves out. I have one message for you... :)

(Photo taken form

Thank you.

Sunday, 19 June 2011

The Press Ball, Generosity and Bloggers Block!

Sorry I haven't blogged for a while, I'd open up the page, think about writing and then my mind would go blank. I think I've had, what I can only describe as - 'bloggers block' :).
I suppose I could have bored you to death with the ins and outs of my, not so, exciting life, or I could just wait for something to happen that was worth writing about.
As you can see, I chose the latter option and here we are :)...

Friday night was the Evening Star press ball, which was a very glamourous, black-tie event. It was raising money for the CF Trust along with a few other small charities.
I was considered the 'special guest' or the 'guest of honour.' To begin with we went into a room with various people, including the mayor of Ipswich, who we met straight away and had a photograph with, we were greeted with champagne and it was very odd because people were saying they were honoured to be meeting me, it was all very surreal!!!

The event itself took place in a hall which had been very elegantly decorated to the theme of 'Atlantis,' think lots of greens/blues, colourful drapes and fish haha! I guess it actually sounds pretty weird, but I can assure you it looked amazing, almost fantasy-like!!

We were seated on a table with the girl who did my Evening Star article, a few of her collegues and a couple of business men. It was a 4-course meal, for starters was salmon (which I don't eat, lol - very fussy I am!) So Josh had 2 helping of starters. Main course was guinea fowl, which at first I genuinely believed was guinea pig, I'm also gullable lol, which was very tasty and I really enjoyed it, I was glad I braved eating it! Dessert was a trio of desserts, lemon syllabub, chocolate mousse and banoffee pie, I only like the lemon so did a few swaps and had a trio of lemon syllabubs, lol! Then followed my a nice cup of tea :)

There was plenty of wine and champagne flowing all evening, when I got home I realised I was actually quite drunk because I fell over a bin. Twice...

There was an auction, a raffle and then a Queen tribute act, who appeared on The One Show about a week ago.

Firstly there was a game of heads or tails - where you had to stand up and put your hands on your head, or your bum and if you won you stayed standing with a chance of winning a brand new TV. Anyway, I was rubbish, Josh, however, did well and got into the top 8 or so and was called up onto stage, unfortunately he didn't win, but a lady who was my 'hospital teacher' when I was at Ipswich won it and she immedietly said on the microphone she wanted to give the TV to me... I started crying because I thought it was a lovely thing to do and a very very kind gesture :):):) She is a wonderful woman!

If I thought it was going to end there, I was very wrong! Firstly, during the raffle I was given a prize of a weekend break in a cottage/barn type thing!

Then, during the auction, an anonymous person, bid £3000 on a diamond bracelet and gave it to me, also he bid on a box at show - gave it to me and a family photo shoot, which he also gave it to me.
I was in floods of tears, I was so humbled and it showed me that there are people in this world who are so kind, so thoughtful and amazingly generous enough to do something like that to help bring a smile to my face and some enjoyment during these difficult times. I obviously know who the person was, but they wanted to remain anonymous, I cannot thank this person enough and I am a very lucky (and happy) girl at the moment! :)

I was congratulated many times on my work recently raising awareness by various people, including our MP, a guy from the TV, the Mayor and many other wonderful people. I met some people from the CF Trust which was cool and I felt the evening really was the cherry on the top of the hard work I've been putting in just lately, in my campaigning.

The ball has currently estimated that on the night, we raised £16,000 but the total amount will be announced tomorrow!

So the night was fantastic even though I had to use my oxygen in public, even though I couldn't dance all night like I usually would, even though the reason I was there is because of how unwell I am and even though I do still have CF and still need a transplant - I was there, I danced (a bit) I cried, I laughed, I ate, I drunk, I smiled and I really enjoyed myself.. Despite all the rubbish that is going on inside my body, with all the difficulties and tough times I have ahead, an evening like that really made me feel brilliant and allowed me to (almost) forget what stage I'm at in my life right now.

Here is a picture of Josh and I, just as we walked in :)..

Thank you for reading.

If you wish to read the article write-up on the evening star website, regarding the press ball, here is the link.


Saturday, 4 June 2011

Home and Reunited with Foxxy :)

I've actually been home since Tuesday but I didn't have much to say. I was quite content in hospital this time, which was shocking for me (and everyone else lol) normally by the week stage, I am ready for a fight with anyone, tearing my hair out with boredom and feeling so fed up I want to hit self-destruct. I'd be ringing family/Josh crying saying I was fed up, I'd be horrible to talk to on chat because I would just be constantly moaning..
This time, was really different and I don't think I moaned much at all, except for the pain perhaps!

I was actually fine, I listened to loads of music which kept me occupied, had lots of chats on facebook/msn, kept seeing Josh and Foxxy on webcam, I had great phone signal for the first time ever, so spent lots of time on my phone, facebooking and general other amusing things.
I think the pain from the PEG took over from boredom a little, I could still walk around, make cups of teas etc. But I think it definitely took my mind off other things.
However by the weekend I was ready to go, I'd been put on 3 IV antibiotics, for the first time, which seemed to do me good, I felt less breathless, coughed a lot less (which with the pain in my stomach, was a blessing in disguise!) and just had a lot of energy, too much energy to be cooped up in hospital for 2 weeks. Annoyingly, it was bank holiday Monday so I had to wait until Tuesday to drop the 'can I go home' bomb.

It was funny, I told anyone who would listen, physio/dietician/nurses that I was going home Tuesday. No matter what. I said I had planned all the reasons why I would be going home and how it would be more beneficial for me to be at home -
Firstly, eating, I don't enjoy hospital food and during a period in my life where gaining weight is vital, spending a few weeks without food I'd eat is pointless.
Secondly, I felt really well, too well in fact, I thought somebody would make better use of my bed, I know how annoying it is when you are waiting for a bed, especially feeling so well, so I'd have felt guilty staying when somebody could have been sat at home, begging, like I usually am, for a bed to become available.
& Finally. The stay had gone okay, normally when I get to the two week mark, I'm so fed up, I swear to myself I will avoid it like the plague, which includes playing down how unwell I am to avoid being admitted - Never a good thing. Whereas, I have left relatively happy, so when it comes to the next 'we think you should come into hospital,' I will think, look back to the last stay, decide how it went, then make my decision. If I was told, I needed to come in, after the week I was content, so I wouldn't say no.

Anyway, all the people I spoke to 'reported' to the doctor our conversations, what they thought was best for me - physio was very happy with my chest, dietician was happy with my weight gain (WHICH WAS 4 POUNDS BY THE WAY!!!!) and we arranged a home care plan until my feed delivery arrived. &The nurses totally understood my reasoning.
Basically, I was ready, all guns blazing, to fight my corner against the consultant. But I was shocked to find, a registrar doctor came into my room and said "Hello Kerry, I'm here on behalf of your Dr.. Would you be happy if I said you can go home today?" Biggest smile on my face ever gave away my answer :D YES! So hope I went.

&Here I am now, unfortunately IV's are similar to that Bullseye show in the sense of 'look what you could have won.'
It's basically like 2 weeks of false hope, you think to yourself WOW I feel great, the IV's are fantastic. Then as soon as you stop them, literally for me it's 2-3 days later, i.e now :( you realise that it's a temporary high, a lot of people who are at the same stage as me are on permanent IV's, however, at the moment this is not really an option for me, when I am on IV's despite feeling well, my lung function tends to drop, at the moment while I can still function off them, I don't want to have constant drops in lung function, when it is this low already, a small drop could become quite significant.

You know I always like positivity and happiness in my blog, there is one thing I am very glad of and that was being reunited with my little baby Fox.
Of course in hospital, I missed Josh, Mum and all the rest of my family (and poker grrr!) But they could come and visit me, they could speak to me on the phone, but I could only see Fox on webcam!
So the moment I came in the door she went absolutely insane, I've never seen her so excited to see somebody in her little life, she was squeaking, jumping up and down, running between my legs and this carried on for a good 10-15 minutes, I couldn't sit down because she kept jumping at me trying to lick my face and with my tube pain, I was nervous!
I missed my Princess so much!!

I'll leave you with some pics of Fox on webcam :).