merry christmas everyone!

Hey,

i have clinic tomorrow (Wednesday 20.12.2011) but wanted to give a quick update, spread some christmas cheer and give everyone a wave before i go.
i'm also very privileged to be playing 'santas little helper' tomorrow on ward 85 at the children’s ward. we held a huge charity event earlier on in the year and we have spread the money out between 4 things.
• One was the 'Cystic Fibrosis Trust' - A charity which uses the funds raised to be put to research for CF
• Two was to the 'Starlight Children Foundation' - a charity that grants wishes for children with life threatening illnesses.
• Three was to Thomas - a local charity for a lovely young boy named Thomas Lees
• And finally, we decided to take £500 of the money we raised and buy loads of toys and DVDs for the children on ward 85 which is the ward i used to go on in the Royal Manchester Children’s Hospital.

Cystic Fibrosis patients spend allot of time in hospital and it's not just for a few days and a couple of nights, it can be up to 2-3 weeks and sometimes even longer. this christmas we wanted to put a smile on their faces for those of them who won't be making it home for christmas this year.
we are taking those presents tomorrow before my clinic appointment so i am SOOO excited it's unreal. can't wait to say hi to my old team and nurses and to be the barer of gifts for all the children on ward 85. here is a piccie of all the presents in the shopping trolley...







well this year is coming to a close very quickly :)
however, first of all..
"It's the most wonderful time of the year...."
ITS CHRISTMAS :) :) :) :) :)
.... well, nearly.
it's close enough. i think everyone says this every year, but i feel like this year has shot by. it really has.
going to have a quick re-cap of the year at some point before 2012 arrives. i like to do that you see, just so i can look back and remember certain things that each year brought.
there have been some really sad times and then some really good times this year... but first...

'the best way to spread christmas cheer is to sing it out loud for all to hear' - Buddy from 'Elf'





that is one of my favourite christmas songs :)
i feel like the oldies get forgotten about and replaced with the like of 'Slade' and 'Wizard'
Slade's, “Merry Christmas Everybody” is one of my favourites too but thought i'd share some love to the real christmas songs.
i hope you all have a wonderful christmas with your families or friends. i really do.
lastly, i'm going to leave you with a beautiful poem someone had posted on a friend of mine's wall. personally i'm not a religious person atall but i truly feel like this is beautiful. i think it is a perfect and lovely ending to this post.
Merry Christmas to you all reading this.... make it a good one.
Thanks for reading,
Soph xoxo


"My First Christmas in heaven.
I see the countless Christmas Trees around the world below,
with tiny lights, like heaven’s stars, reflecting on the snow.
The sight is so spectacular, please wipe away that tear,
for I am spending Christmas with Jesus Christ this year.
I hear the many Christmas songs that people hold so dear,
but the sounds of music can’t compare with the Christmas choir up here.
I have no words to tell you, the joy their voices bring,
for it is beyond description, to hear the angels sing.
I know how much you miss me.
I see the pain inside your heart,
but I am not so far away.
We really aren’t apart.
So be happy for me dear ones.
You know I hold you dear,
and be glad I’m spending Christmas, with Jesus Christ this year.
I send you each a special gift, from my heavenly home above.
I send you each a memory of, my undying love.
After all “Love” is the gift, more precious than pure gold.
It was always most important in the stories Jesus told.
Please love and keep each other, as my Father said to do,
for I can’t count the blessing or love he has for each of you.
So, have a Merry Christmas and wipe away that tear.
Remember, I’m spending Christmas, with Jesus Christ this year."

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hi i'm sophie and i have CF

hello there :)

i haven't felt myself over the past couple of days.. just abit offish and not so happy, smiles, rainbows and sunshine. me being female isn't contributing to this rapid change of mood at this particular time of the month, may i add, but i just can't snap myself out of it.
it has gotten me thinking about so many things though. things i'd like to just get all out of my head and off my chest.. if that's okay?

i've decided i am going to chat to my doctors about transplant and the whole procedure. i just want to know the ins & outs fully so i don't feel like such a rabbit caught in headlights when the topic is eventually at the forefront of conversation with regards to my health.

for me personally, i don't feel like i am ready to have the ball rolling for assessment etc. i don't know whether that's one of these three things; i don't know if thats me being in denial or i don't know if that's me coping with how things are now and not really knowing any different than how life feels right now or i don't know if i am just right and it isn't my time to be going down that road yet.

the dreaded 'T' word has been mentioned before when i was transferred to the adults from paediatrics, however, after improving slightly.. it's been placed on the back burner as my wishes were to see how things go.
time has gone by and every so often my team leave little hints for me to think about it. they never really say it as such but i pick up on things they say every so often and maybe it's just me but i get the impression they're feeling it's not gonna be too far away this side street i need to head down for transplant assessment. i have always been told by each member of the team that they would never pressure me and that they're always there for if i need them. i feel like this is there way of telling me, i need to talk to them about it?
Obviously, i could seriously be barking up the wrong tree but i guess it's worth asking about?
my lung functions drift from high 20's-to mid 30's (percentage wise) and the highest they've been for the past year or two was (one random miracle) of 38%! that was a while ago now.. i'm slowly putting weight on, but even that is like a sea-saw depending on my health. going off quality of life, i know it could be a hell of a lot worse but i am talking about me so in comparison to how things were around two years ago, i start to notice just how big a decline things have took.
i no longer manage college so i am at home every day with my dog roxie, i come in hospital for IV's every 5-7 week for a 2-3 week course of strong antibiotics, i sleep on 8 litres of 28% oxygen every night, i use the NIV for airway clearance to keep my Co2 gas level from rising and when it does i then have to sleep on the NIV (a non-invasive ventilation system), i manage 5-10 minutes (depending on how my chest feels) on the exercise bike at level 1 using 8 litres of 28% oxygen, i have 2000 calories poured into me via a mic-key button gastronomy tube in my stomach over night to keep my weight stable, i often get viral's & infections that seem to batter my tired little airbags these days, i use a wheelchair to get round big places such as the trafford centre and sometimes if i'm not feeling so good i may take a portable oxygen cylinder out with me just incase i happen to need them for relief.
to some who may have things miles worse than i do, i am in no way complaining and 'bragging' about how 'sucky my poor life' is.
i am just confused as to when i am supposed to think the time is right for transplant?
if i am the one who has to approach my team about the whole thing?
do i wait for them to come to me?
do i feel ready to go through with it all yet if it's what they think is best?
so many questions i have thought about.. so they only way i'm going to know is to ask right?
i could be told i am in no position to be assessed as i'm too healthy yet.. i admit things are doing okay but i'm not going to lie. the tediousness of my life is starting to drag me to the point of tearing my hair out.

i have no motivation & inspiration to be aspiring to.. i am simply getting poorly, to get better, to get poorly, to get better, to get poorly, to get better and that's what my whole life and everyone around me lives revolve around and it sucks knowing i'm the reason there life has to be put on hold every so often because i'm back in wythenshawe hospital. it sucks being a little bitter about friends who have the energy, time and freedom to go out and have a ball and LIVE.
is it possible to be engulfed in a disease? to be totally controlled by it?
i don't want to come across like i'm feeling sorry for myself because my life is awesome... the people in my life are my reason for smiling and being happy and positive on life. i couldn't want or need anything more than i've got but a little more better health would be welcomed nicely.

i know this is my rant over for a really long time but i've felt really gutted this past two month with my health and just needed to express this in the way i know best. i'm crap at talking because i don't get my point across in the right way and i can't really explain what i mean and feel, so decided to blog it instead. might not even post this but then again.. this is what you guys subscribe and want to learn and hear and try to understand i guess?

just want to tell my mama, papa, beth, chels and arran that i love you all with everything i have to offer and i might not ever say it out loud often enough but THANKYOU for everything you all do individually or all together. THANKYOU for putting your own lives on hold alongside me when i happen to go on my holidays to costa del wythenshawe or just when i'm not feeling so good. i'm sorry i am such a pain in your behinds at times and i don't ever take you's for granted, i know how lucky i am to have each of you. mama, papa & beth you don't have a choice but to put up with me and care for me and love me <3
Arran & chels you guys just decided one day that i could count on you and rely on you to stick by me and look after me and love me! :) <3

soppy stuff over, i feel better already and know this slump is gonna be hitting the road as well as this viral infection :')

take care guys.. thanks for reading.
soph xoxo

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down low and up high

hello :)

just gonna get straight back into it and let you all know that the beginning is going to sound like abit of a rant and then the end will be some good news.. i promise. i just need to vent.

okay so i had an admission around 4 week ago and things were going okay actually, i had my peg tube changed to a button now which i feel alot more comfortable with. it wasn't simple getting it in but we got there in the end.. let's just say my gag reflex is disgraceful and a camera down the throat simply does not go down well with, whether i be sedated or not. i couldn't even manage to pass a NG feeding tube :(

anyhoo.. like i said, got there in the end.

so after three weeks of IV's i was discharged with my lung functions up, peg-to-button procedure successful and weight up as well as my infection level nice and low. i was still a little productive but numbers were up so i just went home.

the first week wasn't too bad and i was doing everything exactly as planned, taking all meds, all nebs, all feeds, doing physio etc and then i had my flu jab....

well things changed, be it coincidence or be it an underlying viral?
i started becoming more productive, i was up coughing during the night, i was achey and felt freezing cold. i left it over the weekend to make sure it wasn't just a side effect of the flu jab which usually takes a couple of days to go through my system but by monday morning i was a little worse so i called my cf nurses. they sent me a two week course of orals and i was placed on 500mg of azithromycin and 750mg of rifampcin.. just had to wait for my GP and chemist now.

as the week went on, i was no better and my appetite was slipping, it was taking close to all morning just to clear myself and feel close to actually wanting to start my day.

four days later, chelsey came round my house and i was still upstairs doing physio this particular morning, as i was feeling crap and unable to talk through coughing and catching my breath, she rang my GP surgery. the secretary insisted the prescription hadnt even been faxed, a little while later she suddenly recalled seeing it and sending it off to the pharmacy, we were advised to give them a call.

so chels did.

on speaking to a women at the chemist, they hadnt recieved my prescription.. so we called my GP surgery again! the rather 'snotty' and unprofessional secretary informed us that it had been sent to the chemist to which chels said she'd just spoken to someone and they hadnt recieved a thing for me; the secretary then changed the story and informed us that it was in a box infront of her awaiting to picked up by someone from the pharmacy along with others.

finally we got somewhere, after my mum calling all week and chels having to ring round oldham to find this prescription that apparently at the start of the morning hadnt even been faxed over from the CF centre, to suddenly being at the chemist and now being in a box on the desk at the GP surgery.

me and chels went down there ourselves and took it to the chemist to try and get me started on some orals.

that weekend i stepped on the scales and after the high of finally reaching my GOAL weight after nearly 2 years.. i was completly disheartned and dissapointed to see i'd lost weight and was back down to below my goal of over 9 stone. i felt like all my hard work was for nothing, had been thrown back in my face as i was catapulted back to square one again. i was doing everything i was supposed to and just 1 week after having 3 weeks worth of IV's i was right back where i started.

totally fed up was an understatement.

i suppose it can feel extremly tedious the ups and downs of CF. i've always known that but sometimes it's a little more prominent than others. this time round i feel like i have took 2 steps forward and 5 steps back. i'm hard on myself, i know i am but this is all i have my life revolving round at the moment, it takes over EVERYTHING.

i needed to snap myself out of the slump so i went to knowsley safari park with my bestest friend chelsey .we had a good chat and we got talking about transplants. we decided to make a little plan up of what i'd do post transplant (note: we were talking about if i need one, if i HOPEFULLY get one and also if i HOPEFULLY have a successful one)

i always thought i'd go to college and uni and get a great job and then things took a turn for the worse and as you all know i had to drop college and stay at home as it was getting too much, when me and chels were talking, i realised that if i had the very lucky chance to have a second go at things post transplant, i'd get a part-time job in a cute little sweetie shop and the rest of the time i would LIVE and LOVE every second of the life i would be living :)

it sounds absolutly perfect.

that following wednesday was a VERY important day, it was the day of my driving test and i am very pleased to inform you all tha.....
I PASSED........... WOOOHOOOO.

so here is where i stand right now, i have passed my practical driving test, i am better than i was when i started orals but i am back in costa del wythenshawe now on IV's so hopefully, i can try and fix myself a little. whilst i am being fixed, my motability car will be being made, wanna know what it is?...

A BLACK MINI COOPER

just like i have always wanted :D

its all very exciting.

well this is just a little update for you all while i did my physio. it's bedtime now for me though.

goodnight... thanks for having a read,

Take care, Sophie xoxo

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this blog was looking dusty...

Ola amigos!

I know, i know i am totally rubbish and i have quite possibly lost most of my readers by not blogging and simply disappearing off the face of the earth however, the fact of the matter is . . . . i don’t want to become the boring diary blogger that is telling you what i have done with my day instead of writing a blog that is (so i'm told) a 'good read'
I finally managed to get my blog looking just how i wanted it after all day of stressing and getting very irate! I shall stop rambling on with myself and get on with the blog :)

Well i have a few things i have up my sleeve but didn’t want to bombard you with a tearjerker or a huge “IN YO’ FACE” opinionated blog so thought i’d take an inspiration from an old blog from the 24th of April 2009.
Now i had two ideas. . . one was to copy a link to this post so you could have a read of the old one and get the drift of what i’d be writing today’s blog on and the other was to copy and paste the whole blog into this post and in a different font, add some refreshed things as a ‘how i see things now’ and compare the two together. . . this failed miserably so instead i am going to go back to plan A and give you the link so you can come back to this point and read my comparisons now we are in the future!
Once you have followed the link and read the blog, come back here and we can continue with today’s instalment!

HERE GOES ALOT OF EFFORT & EDITING ;)..............

*** BACK TO 24/04/2009 *** <---- click there to see the blog from April 24th 2009!

HI . . . . welcome back to the future!!

I’m now going to take little snippets out from that blog and comment on things that had a pretty big impact on me when i was reading through the old blog.

“It’s weird to know that i have only a couple months left in school and then i’ll no longer be a school kid. The weirdest part will be, not seeing everyone every day. My best friends, the group of lads that hang around with us. The people i have known since nursery. I’ve spent most of my life with the majority of those people.
That’s all coming to an end and i more than likely will hardly ever see them anymore. It’s kind of sad really.”

Well i remember thinking it was going to be dreadfully unbearable that i was going to lose contact with people but it kind of happened and i had alot of stuff i had to deal with that brought my attention off losing friends. It did happen and i only talk to two people from school regularly and one of them happens to be my boyfriend so not sure if he counts or not :D haha!
Either way, i guess i was a little bitter when i read this, it made me think to that point in time where my friendships and bonds with the girls & guys was a real close one . . . is it selfish of me to feel a little resentful that they all seem to have just gone?
After a while, i had alot of stuff i had to deal with that brought my attention off losing friends and focused on health issues which is still my main focus at the moment. . . i guess part of me still longs to be as normal as i seem back then? :/


“Cystic Fibrosis is a disease that doesn’t get better it gradually gets worse. This is something i am thinking about more.
I know that i am nowhere near as bad as some people with CF, my lung functions are on the up and at the minute i’m not doing too bad. The thing is though, who knows what it might be like two years from now. Swing and roundabouts right? Good times and bad times?
My CF might be unpredictable but i won’t let it walk all over me and i certainly won’t back down and let it prevent me from achieving what i hope to do.”

It’s this one that stings the hardest. I have bit the bullet and copy & pasted this one, i wanted to leave it and keep this one to myself but what’s the point in writing this blog if i don’t put my heart into it?
Well how right was i?
Two years down the line and things did go a little sour as far as health is concerned. We all know that it was 2010 when i really went downhill but things are more stable now and even though i am nowhere near the health i was at the time of the old blog. . . i am far better than i was this time last year and i’m proud of myself for achieving that!
This is Cystic Fibrosis, it is very unpredictable and i have deteriorated as expected. Now i’m not lying to you all and saying i have been perfect and took ALL meds and gone in the gym EVERYDAY religiously but who’s perfect?
My CF team are brilliant and they know everything that goes on with me. I’m at a place which is really good right now. Using NIV as airway clearance, PEG feeding overnight to maintain weight, exercising more frequently and i even have less nebs so it’s easier to maintain and handle!
I don’t feel like CF rules my life as much, it just tries a little harder but i am still fighting on, i don’t doubt that for one second!


Next up is the 20 years from now list that i wrote 2 and a half years ago.. things have changed and some have been done and dusted so i’m going to go through each of them and add a comment as to whether it’s still something i want to achieve or not.
The ones i want to still achieve shall be in red, the ones i have acheived shall be in green and the ones i no longer shall be blue. Things change all the time and i am not as ‘heads in the clouds’ as i was back then, a little more realistic i guess you could say? ;)


• I want to have got good grades at college and uni – One Day!
• I want to be doing something i love and enjoying my job - <3
• I want to be in good health (hopefully) – ALWAYS!
• I hope to have made it in the writing industry – ALWAYS!!
• If i’m not a writer i want to be a child psychologist – ALWAYS a writer. . . if not, interior design!
• I want to have my own house – One day!
• I want to be in a good relationship or even possibly married – Always <3
• I don’t want kids just yet – Not for me i don’t think.
• I want to be extremely happy - ALWAYS
• I want to have been to New York, LA or Australia – One day!
• I want to have a car named Betty : ) - One day i shall have a black mini named betty but for now, Val does the job just fine <3
• I want to still be writing my blogs – maybe not every day but still going ;)
• I want to have a dog – 09/07/2010 My Roxie Puppy came into my life <3
• I want to be able to bake a yummy cake - ONE DAY!
• I want to be able to make my grandma’s chicken soup and my mum’s sheppard’s pie – Too yummy!
• I want to own a piano – Still and shall always be my favourite instrument
• I want to be good at playing the piano -Not my forte
• I want to have learnt Italian ... i love that language for some unknown reason – 18th birthday prezzie off my cousin’s chrissy & lyndsey! :D
• I want to still be writing music. – Again, not my forte . . . however check the link i give you at the bottom of my page and have a wee listen to a very talented guy i happen to know!
• I want to have seen Beyonce live in concert. – AMAZING!
• I want to have gone on a big holiday to Florida with a big group of friends and family. – One day!
• I want to have gone on a cruise. – One day!
• I want to still be in touch with at least more or less all of my school friends or at the very least know what everyone has achieved – DREAM OVER! :’)
• I want to be as close to my mum and dad as i am now - ALWAYS
• I want to still be going to my nana wheeler’s flat on a Saturday : ) – Just not possible to continue this when i spend so much time in & out of hospital! Every Saturday is definatly out of the picture! :(

Thanks for reading!
Here is a video of the talented guy i was talking about. . .



If you’re interested to hear some more. . . here is a link to his youtube page
MR ARRAN BARNES . . . share the love people! ENJOY GUYS!!

Take Care, Soph xoxo

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onwards & upwards!

Hi everyone,

Okay i'd just like to say that i'm writing this on my new blogger app on my phone. Therefore, if there are any typo's.. i do apologise (uncle neil)
Before i begin, I've had a special request to spread the love to all my lovely blog readers from my best friend in the world.. Miss Chelsey Thackeray! <3

It's been a really tough couple of weeks. Quite possibly some of the worst weeks this year so far. In the space of two weeks, i've lost a very dear friend, heard that an old friend got the life saving transplant she needed badly at just 16 and then devastatingly watched, heard and greived a close friends death.

Andy Ashworth battled his fight with cancer till the very end! He proved them wrong time and time again by bouncing back and fighting tooth & nail.. he managed to renew his wedding vows to his lovely wife lisa, he went to a couple of matches of his favourite football team and he spent as much time as possible with his gorgeous sons, Curtis & Gaz.
He used to say that i was his inspiration! A grown man who battled from his diagnosis to the end of his life.
Funny really because he is a huge impact in me motivated to conforming with treatments, doing physio, working hard and enjoying life!
Your wife and two sons are doing you proud with both there bravery & stregnth. Thank you Andy for everything you did for me & all the little chats and conversations we had.. i hope your getting the well deserved rest up there Mr Ash <3
I was unable to make it to his funeral due to being in hospital but i understand it was an amazing send off for an amazing man! He shall forever be remembered! Sweet dreams Andy Ash <3

I heard soon after that an old friend from the childrens hospital had recieved her double lung transplant. She had it in Great Ormand Street Childrens Hospital. The day before her 16th birthday she had the life saving op! It was successful but she hasn't had it easy. A few complications have set her back abit but things are finally picking up for her and of course she is still smiling & happy. I'm glad she got her call.. she is one of the lucky ones. Shouldn't be a case of luck though i believe.
Anyway, i wish Alethea a very speedy recovery and hope there are no more hiccups along the way. She'll soon be chasing that gorgeous little sister of hers around and that makes me overwhelmingly happy!
She is 16 and will now get her life handed back to her after it cruelly being put on hold.
Good luck Miss Petrides!! You can do this beautiful girl <3

So this leads me to the biggest shock, impact and emotion filled part of the blog.
My friend Laura Varey lost her life last Friday. It was stolen from her.
21 years old and she's just gone.. it's heartbreaking.
Laura was my first friend on the adult CF ward here in wythenshawe. She saw my name on the door, had a nosey in whilst on a walk with physio, then waved and added me on facebook. She helped me settle in on this new ward. Helped me feel less alone as a youngster surrounded by older patients. Was a fellow 'kid' (her words not mine!)
She was 21, so mature; yet so young and fun at heart!
When i was transferred over to the adult centre, my health was deteriorating and fast! They were considering refferal to the transplant team and so i underwent the full transplant MOT! It's filled with every test you could possibly think of!!
I was thrown in at the deep end with a tank filled with sharks and other sea creatures.. you all know i have the biggest fear of sea creatures! I'm simply metaphorically speaking but you all get my drift?!
I was utterly and totally in out of my depth and scared. I was scared.
Laura helped make me understand and come to terms with everything having recently been placed on the list herself. I was so thankful to have someone understand and know exactly how & what i was both thinking and feeling. She too was young and was also wanting to be able to focus on her life away from CF, but unfortunatly had no choice but to concentrate on her health for the moment in time.
I quickly formed a close bond with Laura Varey and found myself talking to her all the time via facebook. I'd wave at her across the corridor or she'd wave at me as she went past my door in her wheelchair and panda woollyhat! :')
After getting really ill near christmas with a nasty virus, laura found herself facing the hardest months in her life. Her whole energy was thrown into battling and fighting the disease that was overtaking. Cystic Fibrosis can be so cruel!
A friend of ours passed away in February, her name was Holly Morgan and although i talked alot to Holly.. Laura was closer to her. I imagine it broke her heart when she died. I remember being at home when i heard about Holly and trying to imagine what that must've been like for Laura, I mean, she was on the same ward and more than likely simply across the corridor from her. I had no idea i'd be finding that out for myself.

I found myself getting a little closer to Laura after that. I also realised i was a little more conciencious about her health. Constantly checking in on how she was and forever wishing her call would come.

This admission, i came in and quickly figured Laura wasn't very good atall. Her family, friends & fiancè were around all the time (more than usual), she was never on facebook and there was generally a horrid atmosphere on the ward. It got worse as days went by and when i went for a walk i saw her door was open so waved at her as she waved at me! :)
I was happy to have seen her and for her to look content and as close to being well as i thought she could be. That was the last time i saw her.
Days went by and her family and fiancé were here constantly! The atmosphere was close to being unbearable now and i was told that Laura had requested i be told what was happening. She'd been told she was too ill for transplantation and that there was nothing they could do for her anymore.
I was so devastated.. more so for her & her family & fiancé. Selfishly, i was gutted for me to.. i was losing another friend.
My first friend who had helped me so much and the only friend i had left on here.
She battled on and fought till she could fight no-more. Her room was filled with so much love. I'm told she was content, happy and that she had accepted everything. So like Laura to be so gracious and brave.
Her battle was over on Friday.. the day was filled with tears, love, laughs, cuddles and snuggles all for Laura. The nurses were feeling just as devastated as i was and so we kept each other going with laughs & cuddles all day! Just what laura would have loved!
Saturday i wrote her a letter, stuck it on a helium filled balloon and let it fly away up to the sky where she rests now.
I hope she got it and had a good laugh at the stories i wrote :)
Sweet dreams dolly!
Forever missed and never.. EVER forgotten matey <3

I have lost two friends from the ward now. The only friends I had made and i found that hard but i'm accepting that now. They've both become my inspiration and motivation :-
To LIVE & LOVE every single second of life.
To fill the time i have in this world with the things i love and the people i love.
To do things i want to do because i want to do them.
Finally, To stop doing things to please everybody else because i need to squeeze everything i possibly can out of this life.
It really is too short and there is no time to loose!

I hope both Holly & Laura can be everyone's motivation to live life and give life?
Time ran out for my two friends but for Alethea.. well she proved it can be done! Her life was saved by an angel who selflessly lived there life and then gave life to somebody else.
What an amazing gift and way to leave your mark in this world?
Join that organ donar register.. please!

All my love and thoughts are with Andy's family and Laura's family <3
There aren't any awards for bravery in this life so i'm hoping they are resting and dreaming sweet dreams in another world.

Love you Andy <3
Love you Laura <3... Miss you mate!
xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

Take Care, sophie xoxo

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CF WEEK.. I DARE YA!

Hey :)

My blog has had a makeover! A few people were struggling to read it as it was sending there eyes loopy so I kept changing the font but that did nothing, I realised the font wasn’t really the problem.. the background was so I am hoping that this is better for everyone.
The sun is shining and it looks nice outside for a change, weather has been abit crazy in Oldham over the weekend eh?

This week is CF week! 8th of May-14th of May!

I have a triple dare for you all, I want everyone to ask just one person at work if they know what cystic fibrosis is and if not.. explain it to them in your own terms :)
Go On.. I Dare Ya!

You could also help by getting EVERYONE in your workplace, right there in front of your eyes, to donate some money to The Cystic Fibrosis Trust. No matter how little or large there donation.. it all adds up!
There are tons of ways of doing this but the best way I know which is quite special to me is by going to Natalie Frenchum’s just giving page as she is my best friend’s mum and my second mum :’)
She is doing a parachute jump in Kent on the 11th Of June 2011!
The minimum donation that anyone can make is £2 by going to:-

www.justgiving.com/natalie-frenchum
I’ll also be posting a link to that site on my facebook for those of you who have me as a friend :)

Thank you to those of you who have already donated, it really does mean a massive amount to me, it should do to you too because when they do find the cure to CF. You will have all contributed to that, piece by piece every time I have asked you to out your hands in your pockets, whether that be at a outside charity concert or pestering you all on this here blog!

Thank you but its time you become the pestererer (Keith Lemon for you there) and mither your work pals, they can spare a couple of quid surely.. IT’S CF WEEK!!

Hey, I still dare ya, don’t think I’m forgetting!


I want this post to all stick together with my CF week flow.
I thought today’s blog could be about someone who is very special to me and who always seemed to be there at both the best of times and the worst during my time in the children’s hospital.

There have always been 3 specialised Cystic Fibrosis nurses but Jo was the one who showed that extra dedication, care and compassion. She didn’t just care about the task in hand and as you as a patient, but she cared for you as a person too. A person, who was dealing with all the hospital side of things but was still a teenager with some big dreams in her head!

She never, ever, EVER will forget the first time I saw her.
She was doing my port flush and she was fairly new to the team. She was asking me questions and getting to know me and she asked what I wanted to do when I got older. I, being me, went on with this massive speech about how I change my mind with regards to that more often than I eat sweets and by the time I’d finished telling her when I was 10 I wanted to be a paramedic, when I was 12 an interior designer etc
I had forgotten what the name for the profession I wanted to get into was so I tried to describe it and the best way I could was, “you know, one of those paper ladies!”
She looked a little flabbergasted but kept a straight face and proceeded to tell me I could be one of those now at 14 if I wanted.. so I looked at her quite strange and said, “No you need a few qualifications and degrees and things first!”
Jo looked really confused, as did I so we tried to work out where the confusion was coming from.
My mum came back from the pharmacy as we explained to her what we was talking about and how confused we were. She started laughing..
“She means she wants to be a journalist!”
Jo was in stitches because she thought I meant I wanted to do a paper round. :)
She tells that story to everyone we meet when we are together.. little bugger makes me look real stupid! Haha.

Jo has been like another mum when mine couldn’t be there.
I loved how I felt like I could tell her everything and anything and she’d understand and help and re-assure. She was an amazing listener and a great storyteller too. She was ferociously good at her job though!
I think I was having my port flushed again one time and it was around 6ish so Jo was already working late. She flushed my port but it hurt so much I shouted at her to stop because it hurt, so she took the needle out and inserted it again making sure she’d hit the back plate so it was defiantly in the right place, and began to flush again. “OUCHH!” I shouted.
It stung all across my collarbone and my chest!
She had a feeling that my port had blown and that I would be needing an operation to take it out and have a new one put in but she had to get a radiologist to perform a quick procedure first using some form of dye to see if it had fractures in the line.
The woman who was qualified to do it had gone home so Jo, rang her and I remember her telling this lady that she had to come back to hospital as it was an emergency!
In the end, the lady came back and Jo’s suspicions were right :)
I think Jo probably didn’t get home till 10 that evening!

On my last admission in the children’s hospital, Jo had come up for a chat after work one day because I was on my own. It was around 5pm because we were sat watching come dine with me on channel 4! I was just telling her I was a horrendous cook when I got a pain in my chest when I took a breathe in. It got worse very quickly and was very sharp! I was panting it was that painful to breathe in so she placed oxygen on me as my sats were going low and my heart rate was soaring! She placed the emergency button near my hand just in case before she left the room to try and get hold of the doctors before they left to go home. I had virtually every part of the doctoring team in my room within 5-10 minutes. The 3 consultant CF doctors were discussing what to do in abit of a panic I think. Jo was sat holding my hand and playing with my hair. I remember thinking, “oh my god, this must be bad if Dr Chan, Dr Panicar and Dr Thomas are all here!”
I had an ECG, an x-ray and a CT scan. Everything came back fine though and we never really knew what it was so the doctors said it was a form of trapped air between the chest wall and the lung cavity. All I know was that it was painful and lasted a couple of days before settling down.
Jo stayed for a little bit and then finally went home, LATE again! I bet her husband hated me, haha.

When I left the children’s hospital I bought Jo a me-to-you nurses watch to have on her uniform so she could never ever forget me :)
I still see her now & again when she gets chance to pop by and see me. She wears the watch I got her on her uniform and she even came to two charity do’s last year so I got to see her then too!

She is a very special lady who is strong and courageous. She can and will overcome anything. I miss her and I think of her everyday. She is always in my thoughts and my heart. I hope she feels strong, happy and beautiful because she is the most brave and positive and beautiful lady I know.
I love her <3

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