Day 7

Good evening :)

Back to school for all the kids and teachers today! You could tell because town was scarily quiet and the in Oldham Town Centre there is a man who sits outside Primark with a keyboard and sings songs from back in the day; well he was there today but all last week he must've done a runner to escape the grief he probably gets off kids! :') bless him.

Had a shop around today with my friend Chelsey. Took my wheelchair of course it’s funny the looks you get walking out of the car standing near the boot while Chelsey sets the chair up and the sitting in it. People look and stare as if you’re pulling some sort of prank. I particularly enjoy watching people stare as me and Chelsey (who is 20) pull up in a disabled bay, you can see them staring at you just waiting for two ‘youngsters’ to step out so they can inform them that you are parking in a disabled bay.
The look of disappointment as you pull out you’re blue badge makes me feel quite smug that I proved their prejudice opinion wrong!

It’s also quite funny how people’s reactions and thoughts change once you’re sat in a wheelchair. Once, when I get out of the wheelchair to walk around shops, people stare and some man once shook his head at me as if I was in the wrong for using a wheelchair whilst having fully functioning use of my legs. It saddens me to think that such narrow minded people can be so vocal and public with there thoughts maybe in future if they are too quick as to judge a book by its cover they should keep there thoughts or ‘tuts’ to themselves instead of giving me such a disgusted look as he did. I felt bad for using a wheelchair, something which aids me even though I do have fully functioning legs, my lungs are that of a different story.
On the other hand, some people look down at you and smile all sympathetically and it’s quite patronizing sometimes how people speak to you.
Funny isn’t it how people feel the need to treat others differently.

Day 6 – A Picture Of Something That Has Had The Biggest Impact On Your Life.

Todays picture is a scar from something that has had the biggest impact on my life. My Lobectomy.

In 2008, my health took a real bad turn for the worst. I was constantly coughing up loads and loads of thick, dark green junk from my lungs. Breathing was increasingly hard work and my chest just felt heavy and horrible.
Not many of you will ever be able to comprehend just what that feels like. It’s awful, you just feel so ill and so poorly and sick. Coughing up the gunk was making me heave with all the efforts from my stomach muscles but the taste and texture of what I was coughing up wasn’t helping with the nausea.

I went on holiday to Florida USA in May 2008 and was really struggling. I’d be up coughing most nights with my mum & dad rubbing my back. My appetite dwindled and my energy decreased too. As soon as we stepped off the plane back home I was taken to hospital were I was admitted and put straight on IV’s. Doctor Panicker who was my consultant in the children’s hospital performed a bronchoscopy.
This is where a bronchoscope (a telescope the width of a pencil) is placed down your throat either through the mouth or nose. It then enters your airways and allows whoever is performing the procedure to examine the state of your airways and also allows them to take some specimens. They also gave my lungs a wash out.
He was unable to access my top right lobe as it was blocked by thick sputum. He then made me have a CT scan on my lungs. This showed that his suspicions were correct and that my top right lobe was overpowered with a localized infection.

My options were as follows:
- Have a Lobectomy. This is a high-risk operation that involves the surgeon to take away the affected lobes, leaving the rest of the lungs alone.
- Allow the infection to spread and inevitably not survive to see my next birthday with the rate it would spread.

After a big discussion with my mum and dad I decided to go ahead with the procedure. My surgeon who would have my life in her hands was Miss Humphreys.
She performed the surgery on August 28th 2008. She removed my top right lobe and part of my middle right lobe. I had a blood transfusion and spent a few hours in ICU, spent a couple of days on HDU and then spent the rest of my time on normal ward. I walked out of Pendlebury hospital just 1 week after my op.
Although I did improve for a short while, the improvements weren’t as good as I’d hoped them to be and I am now waiting to be transferred to the transplant team. However, I still see this whole thing being the biggest impact on my life as if I hadn’t of had it.. who’s to say I’d be here now?
It proved to me just how strong and able to fight I am.

I shall forever be in debt to Miss Humphreys and her surgical team at Pendlebury Childrens Hospital.

Take Care, Soph xoxo
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Day 6

Good afternoon :)

Well this seems to have been long awaited as I have had 4 people ask me where my blog is and it’s only dinnertime!
I wish today’s blog was more fulfilling for you but day 6 is just my favourite band. Here it is though:

Day 6:- A Picture Of Your Favourite Band/Artist.

Everyone who knows me well will know that my favourite band is muse. I’ve liked them for a few years now. They were the first band I started listening to when I was moving on from liking the usual; S Club 7, Busted, Britney, type of things. I was obviously older and had grown out of the whole pop scene and I started listening to muse and really liked how different they were. There is just no other band like them. They don’t seem to fit into any stereotype and I just love their music. Whether it’s there older stuff from way back in the day or their newer stuff of their recent album.
I think they won’t ever disappoint me as they are the best.. clearly.
I do have a slight crush on Matt Bellamy. It’s not necessarily his looks, I think it’s just who he is! :)

My favourite songs by muse are:
- Falling away with you
- Plug in baby
- Muscle Museum
- I belong to you
- Unintended
- Feeling good
- Hysteria

I’ve never seen them live before and if I ever got the chance to I think I may die from excitement :’)
If you haven’t ever listened to them before, give them a go! I don’t mind sharing my love of muse <3

Take Care, Soph xoxo
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Day 5

Good afternoon all,

Hope everyone is having a great weekend so far!

Did any of you watch the children’s hospital show last night?
Omar was on it! He was one of my favourite physio’s ☺
Once, i convinced him that i was a rugby player as I practically lived in my KIWI rugby league hoodie which I’d had my name printed on the back. He asked if I played and I was like, “yeah I do.. I love it.”
To which he looked a little shocked, “really? Wow never met a female rugby player before. What position do you play?”
I thought he was shocked because he’d seen that my lung functions were abysmal but no he was shocked that I was female!! So I played along and humored him..
“Prop forward” I replied gleefully. My dad was sat reading the paper, peeking at me every now and again, a smile on his face.
Omar said to him, “Is she any good?”
He replied, “You honestly believe her? Come on!!”
Omar started laughing and couldn’t believe I was lying to him! I couldn’t believe he believed me even though he’d seen my lung functions were 18% and he’d watch me struggle in the gym just walking on the treadmill! FOOL!

He was a good laugh and I often used to tease him about not doing anything and I constantly terrorized him for being a ‘people watcher’
In pediatrics, that’s all physio’s do.. they just sit and watch you do your physio or go on the treadmill :)
I’m sure he misses me really :’)

Janice was also on the show, she was my main CF nurse. Apparently she’s been through my care since I was around the age of 2.. I can’t really remember that far back to be honest though.
The brothers on the show both had CF obviously and were having port-a-caths fitted which saves them needing canula’s or long lines every admission etc. I have one of those and have had one for about 6-7 years now. It is a godsend! They’re so much better than canulas and I advice every CF patient to have one. I’ve had two as my first one fractured in 3 different places for some unknown reason but this one is doing good so far :)
Anyway, on with the photo challenge:

Day 5:- A Picture Of Somewhere You’ve Been.


I wish everyone in the whole world could go to Florida at some point in there life as it’s the most magical, surreal, happy place in the world.
Disney World is magic.
Whether you’re 1 year old, 14 years old, 27 years old, 39 years old, 50 or even in your 80’s it will always be just magic. You think of Disney world and you probably think it’s going to be childish and for the younger generation but believe me the shows they put on will take your breath away and there are rides for all ages!

However, if it isn’t Disney world that tickles your pickle, then you have the excitement and amazement of Universal Studios! This happens to be where my picture is taken. If you aren’t really a rollercoaster person then don’t worry they have shows, they have rides that are just out of this world that are like a stimulator almost but believe me it is just mind blowing!

America just do things bigger and better don’t they?
Alton towers and Blackpool pleasure beach have nothing on Florida’s theme parks.
The beaches are filled with surfer dudes and dudesses! The food is just scrummy and portion sizes unbelievable. Everything is cheaper and the shopping is an ultimate nightmare if you have a shopaholic father like mine and you personally despise walking round shopping ‘malls’ :’)

My favourite place in the world that I have been too so far is Florida. I’ve been very lucky enough to go there four times. I’d love to go again and I’d probably take my wheelchair to get around places because you do tons of walking!!
I just think the humidity and temperature would make breathing a bloody nightmare. I’ve always found it a struggle to breathe in such hot, humid places.
It’s a shame but I do hope my mum and dad take my sister there again in the near future. I really don’t mind staying at home and sitting it out.

Take Care, Soph xoxo
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Day 4

Good Afternoon,

I advise everyone reading to watch ITV1 tonight at 8pm as the Manchester Children’s Hospital TV programme should be showing my old CF team from when i was under paediatric care :)

I like being able to see them on TV every now and again as i do miss them all. Especially my old CF nurse Jo and Doctor Panicker. All three physio’s, Catherine, Nicola and Omar too!
They keep a professional boundary throughout your care but you spend more time with them then you do your friends in school so some sort of bond is formed and it’s sad to leave them behind but I have improved since being under the adult CF team at Wythenshawe.
Miracles haven’t happened but my lung functions have risen from 19% to 36% so that is so much better. Weight has also started to be gained and maintained which is also a plus thanks to my PEG feeding tube I had inserted in November 2010.

So don’t forget guys, ITV1 at 8pm! On with the photo challenge:

Day 4:- A Picture Of A Habit You Wish You Didn’t Have.

Okay so I don’t bite my nails or anything like that but one thing I do a lot is gently stroke people’s arm.. it’s proper weird I know but it just relaxes me and I can’t help but do it; especially if I’m tired. I do prefer someone to do it to my arm but will quite happily sit there and do it to somebody else without thinking :/
Now I don’t have a picture of this so I am going to choose something else I do a little more frequently.

I think it’s a little bit of OCD that contributes to this but I arrange my sweets into colour order and then eat them in order of colour and say there are more orange than green.. I’ll eat the orange first. I don’t really realise I’m doing it until I’m half done and then I cant stop myself because it doesn’t feel right to just stop, it’s annoying and I wish I didn’t do it as I get stared at quite a lot. :(
In that particular photo i have arranged them into colour order as well as whatever object they happen to be. IE, stars, bananas etc.
I clearly have alot of patience but i happen to think spending so much time in hospital bored has also contributed to this habit of mine.

Take Care Everyone, Soph xoxo
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Day 3

Good morning everyone,
we have builders next door at the moment and they're doing my head right in!
it sound's like they are trying to make there way into my room every morning at twenty to eight!! FRIGGIN' RIDICULOUS.
anyway on with today's photo:

DAY 3:- A Picture Of You And Someone/Something You Miss.

I haven’t lost anyone i was close to so i decided that the picture I’d choose would be of my old horse smudge and me.

When i was younger i was a really keen horse rider, i never really enjoyed equitation or dressage but loved working hunter and show jumping. I was a member of Saddleworth Pony Club and i thoroughly enjoyed being part of that. My first horse was called lucky and he was a horridly stubborn pony that i first started riding lead rein which means i had my mum stood at the side of me holding a lead attached to my pony. As i got bigger and better we got a new horse and he was called smudge. He was a from a horse/pony school and was excellent. I started jumping on him and was very good at it. In shows I’d rarely come home with anything but a first or second. My main rival also being my best friend at the time, Lizzie Sloane. She was very good too and her horses were horses trained to show jump. Her mother Dianne was a ferociously competitive person as was my dad so as me and lizzie smiled and enjoyed our time jumping my dad and her mum would be taking things very seriously shouting from the sidelines.
Smudge and me were a good team and therefore picked to represent Saddleworth pony club at show jumping events along with lizzie and her horse obviously. I loved being part of that so much more than anything as i felt like i must've been REALLY REALLY good to be picked by the committee to represent the whole club! :)
I was proud of that.

Eventually as i got older and after a while of competing i fell out with horse riding and it's ferocious competitiveness, it took the fun out of it and i no longer enjoyed it and so retired at the very early age of 13! :D
YES.. Yes i did all that show jumping under the age of 13! :)
I jumped 4ft9 at my best point, which is good going for someone not even in her teens.

We sold smudge to my auntie Diane who was an avid rider and absolutely adored animals & still does. It was sad but it wasn't fair for me to keep him if i no longer rode him.
Unfortunately the new yard he was moved to didn’t seem to like him and smudged was 'bullied'
One day he was chased round & round the field and had a heart attack. Smudge died that day.
It was heartbreaking. It was the first pet I’d ever had that made me cry my eyes out. He was a great horse & very much loved.

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Day 2

Good morning everyone,
i hope you are all well and happy! Here is day 2 of the photo challenge:

Day 2:- A Picture Of You And Someone You Have Been Closest To For The Longest.

I found this one a hard one, i didn't really have anyone who i immediately thought of. I didn’t have a best friend of 10 years and most of my school friends seem to have fizzled away so i was stuck as to who i would choose.
Then i thought about Chloe. Although we aren't as close as we were and we don't see each other very much; she is the one friend from school who has stuck by me and still talks to me, visits me, does stuff with me and i for one am very appreciative of that.

So this is Chloe and i at our school prom.
She is the ditzy blonde who says what she is thinking, she has no filter and therefore has to be stopped every now and again whilst talking to my younger sister!
She is lovely and would do anything to help you if she could. We have been friends for 4 years now. She loves nail polish, she loves Mcdonalds and she likes meaningful songs because they could make her cry. She is studying to be an air hostess and works in poundland. She likes a drink, especially the wine. She has a boyfriend called jonny and he’s nice and takes care of her and she is very much in love with him so I’m happy for her!
She makes me laugh with some of the things she comes out with & her random texts telling me she’d like a brew or that her shampoo smells nice today. :)
I love her very much <3
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30 day photo challenge!

Hi all,
a few of my friends have been doing this 30 day photo challenge on facebook so i thought i'd join in but do it on my blog instead. It let's you have a tiny little insight into a few things that you possibly didn't know and hopefully it'll be the kick start in to writing my blogs regularly again :)
So here are the things you should be expecting over the next 30 days:

Day 1 – A photo of you with 15 facts about yourself.
Day 2 – A picture of you and someone you have been closest to for the longest.
Day 3 – A picture of you and someone/something you miss.
Day 4 – A picture of a habit you wish you didn’t have.
Day 5 – A picture of somewhere you’ve been.
Day 6 – A picture of you fave band/artist.
Day 7 – A picture of someone/something that has had the biggest impact on your life.
Day 8 – A picture of someone who makes you laugh.
Day 9 – A picture of someone who has gotten you through the most.
Day 10 – A picture of you when you were little.
Day 11 – A picture of your celebrity crush.
Day 12 – A picture of something you love.
Day 13 – A picture of something you hate.
Day 14 – A picture of you doing something that makes you happy.
Day 15 – A picture of your family.
Day 16 – A picture of you and someone you do weird things with.
Day 17 – A picture of your favourite song.
Day 18 – A picture of your biggest insecurity.
Day 19 – A picture of something that inspires you.
Day 20 – A picture of somewhere you’d love to travel.
Day 21 – A picture of something that makes you happy.
Day 22 – A picture of something that confuses you.
Day 23 – A picture of something you crave.
Day 24 – A picture of yourself and a family member.
Day 25 – A picture of your favourite memory.
Day 26 – A picture of something that mean’s a lot to you.
Day 27 – A picture of something you’re afraid of.
Day 28 – A picture of you last year and today with a description of how you’ve changed.
Day 29 – A picture that can always make you smile.
Day 30 – A picture of yourself.

I'll start that today :)
That's it for now really, nothing to report as of yet!
Thanks for reading and i shall do the photo challenge below :)
Take care, Soph xoxo

------------------------------------------------------- DAY 1

1) i lose things alot
2) i have a fear of fish being close up to me and swimming around. i don't like them. i haven't always been like this.. i seem to have grown into it.
3) i'm not a fan of chocolate but LOVE gummy sweeties
4) i hate the taste of coffee but love the smell of it
5) i automatically assume the worst when a loved one doesn't text me back after a long period of time (that being 30-40 mins)
6) i get called dolly off a few people at the CF centre because i'm the baba & dainty
7) i really detest the smell, look & taste of mushrooms!
8) i'm not particularly a great eater of meat but i do love chicken
9) i wanna be able to sing to my hearts content again one day
10) i prefer darkness to light
11) i love steaming hot bubble baths
12) i have a keen interest in interior design
13) i think candles are pretty
14) my two favourite films in the world are 50 first dates & practical magic
15) i love to laugh but hold it in alot of the time in fear of coughing uncontrollably afterwards.
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.. sweet dreams Holly xxxx

I know I’ve been terrible and I haven’t wrote on this for a while.. a really long while but could you forgive me and just allow me to get this out?

You all know I’ve moved to the adult CF centre. I made friends with two fellow cystic fibrosis patients.
Laura & Holly.
Obviously due to cross infection we were never allowed to mix and meet face to face. However if you left your door open you could see patients going for a walk with physio or bobbing out somewhere for abit.
I got speaking to Laura first as she added me on facebook, she was lovely and it was just nice to speak to somebody who completely understood. COMPLETELY.
Laura is on the transplant list and is waiting for her call. I thought I’d ask her a few questions and just talk to her about the whole thing for my own curiosity with the whole transplant situation being so ‘real’ to me now.

Soon after I had another friend request off a girl named Holly, now this one I recognised. I’d seen her popping out for abit with her boyfriend. She’d be sat in her wheelchair with her oxygen mask on and her woolly hat while her boyfriend pushed the chair. I’d also seen her going for a walk with physio, oxygen mask intact and drip stand being pushed by either a physio, friend, boyfriend or family member. She’d always smile as she walked past my room.
I accepted her request and got chatting to her straight away. We never really spoke about CF, we mainly talked about online shopping as I was an online shopping virgin and had never even contemplated shopping on the internet before.
She told me I should create a paypal just to be safe before I spent any money.
She introduced me to truffleshuffle :’)
Both Laura and Holly were in rather frequently. I tend to be in every four week for 3-4 week on IV’s but Holly & Laura’s admission lasted longer and their time out of hospital was much shorter.. usually lasting weeks or even days. I was admitted onto the ward end of November with swine flu and so I was in hospital for 5 week. Sometime in December I decided I’d start a facebook craze and made all my friends turn there profile pictures to the organ donar card till the clock struck midnight on new years eve. All in order to raise awareness of organ donation and the generous and selfless Christmas present of all .. the gift of life.
It went phenomenally well and I even managed to get onto local news on Granada reports ITV.
My two new friends and I really appreciated everyone’s dedication and both Laura & Holly joined in my campaign by changing their profile pictures.
I got out in time for Christmas and so did Laura.. however, she had to go back in soon after due to picking up a nasty virus. I’m unsure about holly.

Sadly, Holly passed away last week, she fought so very hard right till the end. She had her close family surrounding her and therefore was in a room full of love and devotion. I know she is no longer suffering or having to fight and that she’s now a shiny star in the sky.
But it still leaves an ever so bitter taste in my mouth about how cruel and unfair life is. Holly was just 19! NINETEEN years old.
That’s two years older than me. That’s far too young.
It’s made me very resentful to the people who disagree with organ donation or those who don’t sign up. Does that make me a bad person?
Everyone is entitled to there own opinion.. I am fully aware of that.
I just don’t see how someone can even have a second thought about saving somebody’s life. In such a selfless act as donating your organs once you no longer need them. I just get told to ‘hush’ with my feelings though as it’ll upset people who are just expressing their matters of freewill.
I have a strong opinion on ‘Freewill’……. I want to just warn anyone who may disagree with organ donation that they may find my opinion on the matter a little abrupt & blunt. Apologies.
Allow me to express my matter of freewill…

Why just sit and let people die for the sake of allowing your organs to then rot underground or burn when you get cremated? It’s blunt but it’s true.
I wish so hard that people realise how serious the whole thing is. Organ donation should not be an option we choose to take it should just be a general thing that is carried out when someone passes away. How many lives would be improved? How many people would live much longer & fuller life?
Yes I know that transplantation doesn’t always have a happy ending but isn’t it worth the risk?
It isn’t fair. Holly worked her arse off all her life to get some new lungs and she never got them.. where is the freewill in that?

Yes I am probably very biased in my opinion. However I’ll be honest with you all and lay out everything on this blog..
It scared me.
It scared me knowing how young she was, knowing she didn’t get to live life to her full potential post transplant as she never got the chance.
I was shocked.
It shocked me as I really did have it in my head that Holly would get that call she’d been waiting & fighting for. I really did believe that it’d come and she’d be able to carry on living a better life without the horrid lungs. I had no idea she was so ill.
I was sad.
It was a big shock to my system.. true I didn’t know Holly very well atall and I didn’t meet her or know her very long but when you share something like the understanding of being a young person who is so ill and having there life put on hold, I think a bond is created.
I was determined.
I’m determined to make every single person I know fully aware of organ donation and how crucial it really is.
I think if everyone put their self in my shoes, in Holly’s shoes, in Laura’s shoes or in my friend Victoria glen’s shoes.. you’d soon be more than willing to save lives.

I am keeping a smile on my face and my head up as Holly is no longer suffering or having to fight and she is now breathing easily and spending a fortune online shopping somewhere in her dreamland ☺
I also know that there are some very happy endings with regards to transplantation ☺
Victoria Glen is my inspiration to keep fighting for that phonecall and those brand spankin’ new shiny lungs as she is doing ever so brillianly. Her blog is:-

Thank you for reading & allowing me to just let it all out.. I feel better now.
Much love to you all. <3
Take care, sophie xoxo
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