Monday, 31 December 2012

The last post of 2012

Well this will be the last post of 2012, the year that Ellis deteriorated very quickly and of course the year that our beautiful daughter, sister and friend lost her fight for life. The worst year of our lives. I also lost a very close friend in March and I know she will be taking care of Ellis for me x

However I will look back at the good times we had at the start of the year especially seeing New Year in with friends.

So I hope that 2013 brings comfort to those that are grieving for loved ones, brings hope to those who are sick and waiting for transplants and happiness to those that are sad.

Wishing you all lots of love, peace and happiness for 2013 xxxx

Saturday, 29 December 2012

Christmas morning.

Christmas morning I awake,
feeling emptiness and heartache.
One less present under the tree,
one less person to laugh with me.

What I would do to have you back,
to open gifts, and watch TV tack.
But I know that will never be,
so I hold you tight inside of me.

I close my eyes and think of you,
and remember that you loved me too.
I see your smile and shining eyes,
then I know that love never dies.

Sunday, 16 December 2012

first fundraising event.

8 months ago today we lost our girl and there hasn't been a day go by that we havn't thought and spoken about her. However much we may wish, we cannot change the past, but we may be able to change the future, by raising money and awareness for the Charities close to Ellis's heart.

On Friday as you probably know, we held the first fundraising event which thankfully, went really well. Over 100 tickets were sold and peoples generosity was staggering. I'm so glad that everyone seemed to have a great night. Of course I couldn't of done it without the help of my family and friends, they know who they are.

So how much was raised? Well the money is still coming in and I will tally it all up in a few days.

There are still some Everything Ellis wristbands left, so if any one would like one then please donate £2.50 on the link below or contact me directly and I will post to you.

Here a few pics of the evening x

Friday, 7 December 2012

Why are we having to do this?

So there is only one week to go until the Everything Ellis event, which myself and others are very busy preparing for. Things seem to be going really well and I'm looking forward to it, but and here comes the but, something inside of me is shouting 'why are we having to do this? We should be preparing for Christmas with Ellis, putting up the tree and our reindeers display, going to Winter Wonderland, Christmas Shopping in Westfield, going to the Carousel and taking Cael to Santa's Grotto in Milton Keynes. All of the things Ellis loved to do at Christmas. But we can no longer do these things with our beautiful girl.

She should be picking a dress and shoes to go out with mandy and her mates and doing what other 21 year olds should be doing at Christmas. But she can not do these things because CF took her life and took her away from us.

Then I remind myself, that's why we are having to do this. To find a cure for this bloody cruel, horrid disease and to make people aware of it and to show just how severe and heart wrenching it is. It's one of those horrble 'invisible disorders'. If someone is going through chemo for cancer, the signs are there and people know. If someone has one leg or downs syndrome, people know. The only way people are going to know about CF and the debilitating effects it has is if we stand up and tell them.

So, I guess that is my new path in life, to keep on raising money and awareness until CF is dead and buried or until I am.

Do your bit and spread the word.

Love to you all. Jo.x

Monday, 26 November 2012

Ellis's memory tree

Hi all just a quick update for you all. The Everything Ellis event, for the CF Trust and L&D Childrens wards,  is going really well. Posters have been printed and going up, tickets selling, amazing raffle prizes, from a meal at a hotel to flowers and spray tans! Auction prizes vary from a family day out at Woburn Safari Park to a one of China Cup with Ellis's picture on !

Finally, we have planted Ellis's memory tree, a japanese weeping cherry, in our local churchyard. I know it looks a little sad at the moment but when it blossoms in the spring it will be stunning, just like Ellis x

Saturday, 17 November 2012

Everything Ellis

Well another month has passed by, time is going too quickly. Soon it will be Christmas which I am really not looking forward to then before we know it, it will be coming up for a year. A whole year, it just seems so unreal! I had found myself wallowing a bit so I finally pulled my finger out and with a little help of some friends, set up 'Everything Ellis'.

The aim is to raise lots of money for the charities that Ellis supported and we are starting with the CF Trust and the Luton & Dunstable Hospital Childrens Wards. We are kicking the events of with a Disco on the 14th December. An old friend of mine, Michael, who is a DJ, has very kindly offered his services for free. We have some great raffle prizes have some great stuff to Auction. The amount of support which we have received has been overwhelming and I am sure it is going to be a fantastic night. Tickets are £5 and can be purchased on line (link below) If you can't make it but would like to donate a little amount you can do that too. I'm sure it will be a little emotional too as it is being held in the hall that Ellis celebrated her 18th Birthday and Daren is going to sing Ellis's song. Get the tissues ready !!

Over the last few weeks I have also met some amazing people online, who sadly have also lost their children due to CF or lack of organs being available for donation. It's kind of sad knowing that others are feeling the same pain as me but also kind of comforting too. I would also like to mention Ellis's friend Kerry who at just 21 is in desperate need of a lung transplant, please spare a thought or a prayer for her.

Finally Mandy, Ellis's sister, was reminiscing with Jodie their lifelong friend, about a game they used to play when they were young called 'what's wrong with me'. So two of them would leave the room whilst the other would put their top on inside out or change their socks and the others would have to guess what was wrong. When it was Ellis's turn she wouldn't change anything and after Mandy and Jodie failed to guess Ellis would just laugh and say 'whats wrong with me - I've got CF' it would get them every time. Just shows what an amazing sense of humour Ellis had even at such a young age.

Monday, 15 October 2012

Keep shining angel.

6 months ago tonight was the last time I heard your voice, saw your beautiful brown eyes and your lovely smile. The last time I got to say "goodnight sweet dreams" and tell you that you had made me the proudest mummy in the world.  I will treasure the memories you gave me forever and will carry them deep within my heart. Your courage, wisdom and love for life is my guiding light, keep shining angel. xxxx

Wednesday, 12 September 2012

Summer Breeze

The view ahead is clouded, the road ahead unclear, how can I move forward knowing you're no longer here. There's an emptiness inside my heart, a gap inside my soul, a part of me left with you and now I am not whole.                                                                

"But life goes on" I here you say, "take one step at a time and I will help you find your way. Don't spend your days weeping and asking why I couldn't stay, I am with you in your darkest moments and in the brightness of the day".

So now I need to dry my eyes, and wipe away a tear, for if I can see clearly I will see that your still here. I will feel you in the summer breeze, in the patter of the rain. I will fill my heart and soul with your love, until we meet again.

Thursday, 6 September 2012

Back on track.

Well, after the last post I am now, once again feeling more optimistic and getting back on track, (whatever that is meant to mean !!)

So at the weekend Ellis's good friend Jenni held a charity disco, in aid of the Cystic Fibrosis Trust. A great night was had by all and I think lots of people woke up with a sore head the next morning x I believe that over £1000 was raised. Well done Jenni.

Ellis's favorite little boy, started school this week and Ellis would be so proud of him and how well he is coping without her.  I know he misses her but he always talks about her with a smile on his face and remembers the fun they had and the songs they sang together.

When we was on the plane and Cael was looking out of the window, he asked  "Are we in the sky" Yes I replied. "Ellis is in the sky with the fairies and angels so can we pick her up, take her on holiday with us, and drop her off on the way home". Oh If only it was that simple.

Finally Ellis was involved in a number of different charities and I promised her I would raise money and awareness for these. So now that I am redundant as a full time mum, I now have more time to focus on getting the ball rolling. So details will follow shortly hopefully with details of a Christmas Celebration.

Note to myself - we don't know what lies around the corner, so just try and enjoy life as much as possible. xxx  Until next time - laugh a lot, love a lot and live a lot. xxx

Wednesday, 29 August 2012

Set the record straight.

This day 2 years ago I was given the chance of a future with my beautiful daughter, who at just turned 19 was dying in a hospital bed, too weak to eat or get out of bed, too out of breath to talk, aching with pain and who was simply ready to die.

Then her chance, that no body believed would ever happen and to be frank without the persistence of Dr Helen Barker who battled through red tape, bureaucracy and the medical team who simply said Ellis should be left to die as she was too ill for transplantation, there it was, the chance of getting Ellis back.

Well you all know the story from here, but I need to set the record straight. I am not and have never been the perfect mum, the strong courageous mum, the one without any flaws. I made mistakes, some bad ones. I made wrong decisions and wasn't always there when Ellis needed me. Maybe I was scared, she was turning into a stunning young lady, no longer my little girl and I don't think I knew how to deal with this.

And now, well I find myself stuck between the life I once had and the future, without Ellis in it, and to be honest I don't know how to move forward. Moving forward may mean I will forget her, leave her behind, but being stuck in this place may mean I will lose my future, my son and my family. I'm not looking for sympathy as anyone that knows me knows that isn't me, I'm just trying to explain the scary feelings that I have and that I don't know how to process.

I have always been an optimistic person and hope that I will find my way back very soon. I just can't trick you all into thinking that life is all rosy because it isn't and most of all I can no longer trick myself.

Thursday, 23 August 2012

Darren, transplant buddy.

Hi all, well one year ago today the lovely Darren Salmon lost his fight for life, just one week prior to his first year transplant anniversary. Darren was a lovely man, one of the best, he had a loving family and 3 beautiful children.

We met Darren, just a few days after he and Ellis received their transplants and a great friendship was born. They recovered together, laughed together, cried together and shared an understanding of what the other was going through. They both always had a twinkle in their eyes, a cheeky smile on their face, a wicked sense of humor and a lust for life and laughter.

When in hospital, they would always be together on what became 'their table in the corridor'. This was their place, to laugh and watch the comings and goings of the other patients and staff. The doctors and nurses would always know where to find them. As time went on, and they grew different infections, they were no longer able to mix, but it didn't stop them from standing in each others door ways, until they were marched back to their room!

A little while before Darren lost his fight for life he told Ellis that, when he had to leave, he would send her a white feather, as a sign that he is watching over her. After saying goodbye at his funeral, whilst understandably upset, the whitest fluffiest feather literally came from no where and landed on Ellis. A sign as promised, he would never let her down.

Ellis always knew she had a friend in Darren, as did I, he was always there for us, even though his health was deteriorating. Well I'm sure their friendship remains as they are, once again, continuing their journey together.
                                          Exercising at the Gym in Papworth.  

                          These are Darren's songs, which Ellis loved listening to.

Tuesday, 31 July 2012

Happy 21st birthday my angel.

Words are worthless today my beautiful, brave, witty girl. I miss you with every heartbeat.I will forever cherish every second we shared together, Happy 21st birthday my angel.

Keep thinking of our verse.

God grant us the serenity to accept the things we cannot change, the courage to change the things we can
and the wisdom to know the difference.

I will love you until I take my last breath and then we will be re-united xx

Sunday, 15 July 2012

Live life then give life xxx

Well I have been thinking about what to write on the blog, don't want to keep boring you all with my shitty stuff. After all it is Ellis's blog and I want it to stay that way.

Then a ray of sunshine came in the way of the attached link. Ellis knew many of the people featured in the link., after watching, it bought tears to my eyes and saddened me but it also gave me joy and hope.

Mike (pictured with wife Claire) had been in the next room in hospital with Ellis for a long period, and sadly passed away just a week or so before Ellis received her transplant. This was the day of the meteor shower so he really did go out with a bang!

Mike, who shared a very unique bond with Ellis, passed away just a few days before Ellis. When Ellis heard this very sad news and after shedding a few tears, Ellis smiled and said "I told you I was doing the right thing,  we always knew he would pass to the next life just before me so he can be waiting with a drink and a big smile on his face"  They had said this for many years, maybe somehow they knew x

Then there are the lovely girls, Kirstie, Amy, Kerry, Sophie and the lovely Chantelle who was Ellis Papworth buddy, often getting into trouble with the nurses for chatting too late into the night or not being around for their IVs.

So please take a look at the link and if you are on or are thinking of joining the organ donor register, please please discuss your wishes with your family.

Saturday, 7 July 2012

A busy week.

Firstly, I went to visit our friend Gary, who on the 24 June had his much needed double lung transplant. I was a little unsure as to how I would cope returning to Papworth. Would I turn into a blubbering wreck, would I get half way there and decide to turn back? Well, I actually felt totally at ease, like I was returning home, I felt uplifted and at peace. To top it off seeing Gary looking so well, with colour in his cheeks and a twinkle in his eye's was priceless.

Secondly, The arrangements for a final resting place for Ellis have nearly been finalized. Yes, I know it's been a long time but it is the last thing we can do for her and we want everything to be perfect. After all Ellis was a very special young lady and deserves only the very best.

Thirdly it was Georgie's birthday yesterday, (you will know about Georgie from previous blogs) so we lit a candle for her and posted her songs on Ellis' Facebook page. I know that Jordan and Ellis will make sure she has a good time and parties in style.

                                                    Ellis & the Lovely Lisa

Finally, today is the Lovely Lisa's 1st transplant anniversary. After a very difficult recovery she is now getting back on track. Wishing you all the luck and good health Lisa, look forward to joining you in your celebration later tonight. You know the three girls will be looking down on you - watch out for those water bombs and no doing the Macarena.. lol x

Saturday, 16 June 2012

Sometimes you just have to laugh.

Well, it's two months now since Ellis had to leave us. Yes every day is still incredibly difficult, things we can take comfort form one day will not help the next so every day is very different. I think the trick is to not look too much into the future, keep as busy as possible and allow a little time to cry and grieve but not to let it override everything else. So if I feel my emotions getting the better of me I literally try to start the day afresh,   as one of Ellis favourite songs says "pick yourself up and try again".

I now feel able to start compiling Cáel's memory box, following the instruction's which Ellis left for us of course! Cáel has also chosen some pics of him and Ellis to go in his room, so off to buy some frames.

Also wanted to say thank you to everyone who made a donation to dreamflight in memory of Ellis, over £540 was collected.

Lastly I thought I would leave you on a note that I know would have made Ellis laugh and she probably would have used it as her facebook status, so hope it puts a little smile on your faces too.
So Cáel is talking about different parts of the body and asking about the heart and lungs etc. When we get to the kidneys he says "well I have Kidneys now because I am small but when I grow up like daddy I will have adult knees" 

Sometimes you just have to laugh. After all, whatever life holds in the future, life will go on. So we owe it to ourselves, and to those we have lost, to try and make the most of it  xx

Monday, 4 June 2012

The most beautiful gift.

My Darling Ellis, seven weeks have passed since I saw you last and it certainly isn't getting any easier. Some days I cope ok and others, like today I don't. This indescribable feeling washes over me, engulfs and consumes me. I think of the life that you will never have, going on holiday with your friends, getting your first job, your wedding day, seeing Cáel  grow - his first day at school. I think of the laughter, shopping, your beautiful happy face, your witty remarks all things I will never have again.

I find myself asking why, why did this happen to you, I know I promised I wouldn't think this, that I would focus on the lovely life you had and the pleasure that you gave me, but you know what it's so damned hard.

Today I took down all of the cards that people had given us, re-read all the kind words. We put up your photos along with a painting of a daffodil that Cáel made for you and the lovely heart and white feather from The Salmon family.

As I write this I think why am I moaning, what am I complaining about. I was given the most beautiful gift, which I was lucky enough to have for 20 years. Some people will never be blessed to experience the love which I hold in my heart. That gift Eliis is you, you have truly made me the proudest mummy in the world. x

Wednesday, 16 May 2012

One very emotional month.

Well it has been one very emotional month since Ellis had to go, why she didn't have more time with us God will only know. When we get sad and realise we will not see her again, we stop and think that she is now at peace and is no longer in any pain.  xxxx

The farewell ceremony held for Ellis on Friday was simply perfect. Mandy read a beautiful poem which she had written. Mani read words from her Transplant Consultant along with his own tribute. Finally Daren performed a very special song for Ellis, which was simply breathtaking.  Thank you for everyone who attended and made the day truly special.

Ellis carefully chose the music which was played, these and Daren's song are linked below for you all, along with some pictures of Ellis which we had at the Service and some of the floral tributes.

Forever young by Johannaonair -

There you'll be by Faith Hill -

Worlds Greatest by R.Kelly -

Everything Changes by Daren -

Ellis 18th birthday x

Mum & Mani's flowers x

   Cáel's flowers x

Mandy's flowers x

Our brown eyed girl x

It is difficult to find the words that can express our feelings at this time, we just have to take each day as it comes as no two days will be the same. We try to carry the courage and strength that Ellis showed with us in our daily lives, which seems to help. We are all extremely proud of Ellis, and miss her deeply, today, tomorrow and forever. 

Finally, Dreamflight, a charity that took Ellis on a holiday of a lifetime to Florida, was always close to her heart. She swam with dolphins, visited Disneyland  and her dreams really did come true. Donations in memory of Ellis can be made via Neville Funeral Service on 01582 490005. 

Thank you xxxx            

Sunday, 29 April 2012

Never walk alone.

Well as you readers will know, it is very nearly two weeks since our beautiful Ellis had to spread her wings to watch over us. We also know that we promised to update her blog regularly and keep her memory alive, but it isn't that easy! Our words are not her words, our thoughts are not her thoughts, so we will just have to do our best, here goes ....

The amount of support that we have received has been amazing, not just from family and friends but from total strangers. Some have blogged about "this courageous young woman who could teach us all about life and loss", others have sent cards via friends (some have even managed to find our address, bit scary!). So it is comforting to know that Ellis really has touched peoples lives.

Today Ellis's close family and friends participated in a 10k sponsored walk on behalf of the CF Trust. Well as you probably guessed the weather was rainy, rainy, windy and oh yeah rainy!! But a promise is a promise and trek through the muddy puddles we did, until after about 2.5 hours we completed the task in hand. We also know that we will never walk alone as Ellis will always be by our sides. The money is still coming in so far, between us we have raised about £2000.00 an outstanding amount of money but it could be more so if your feeling generous, touched or inspired you can still sponsor by using the link Ellis put on previously.

Well that's about it for now, please let us know if we are doing good with Ellis's precious blog.

Until next time.

Tuesday, 17 April 2012

Keep Calm And Sleep.

Keep Calm And Sleep,

These were the words that Ellis took to bed with her on Sunday night, quite literally on her PJs, typical!

Ellis was honest and happy throughout, confirming exactly what her wishes were. She remained dignified and in control and her will did not falter.

Her illness gradually took away most of her choices in life but at the end, which is where she found herself,
she made sure that it would not take her final and most important one away too.

It was not a selfish decision that Ellis made, but one that benefited us by giving us the opportunity to see and be with her in a way that we had not seen for a long time, comfortable, happy and at ease. However, as much we knew, as a family, in our hearts that it was the best decision she could make for herself, it didn't make it easier.
Selfishly, we tried to make her change her mind and make her keep fighting, but who would she be struggling on for, her or us?

After several days spending time with the people she loved and after reading all of your kind messages, our most beloved, beautiful and courageous young lady, fell peacefully asleep in the arms of her mum.

We would like to join Eliis in thanking everyone for their heart felt support throughout her short but obviously very wise life.

May her wisdom and courage remain with us all during our time of need and inspire us throughout our lives.

We love you Ellis.

Sunday, 15 April 2012

Roller coaster ride.

Hi all, just a quick update on behalf of Ellis.

Well over the last few days Ellis has remained strong, determined and very up beat. She has managed to spend some precious quality time with family and friends without being in any pain or discomfort and has been totally chilled out. Last night was spent hand and finger painting with Cael, which was lovely. He even shared his special baba (blanket) with her !

She has requested no visitors today as she just needs some peace and quite, however she is reading your posts, when her eyes are a bit blurry, we read them to her. She wanted to thank you all for your support, understanding and kind messages.

Drugs have been fiddled with a bit which have made her a little confused. She woke up a while ago thinking she had been on Stealth, keep thinking those good thoughts sweety. She is now going to attempt to watch Britains got Talent, as she was most annoyed at being too sleepy to watch it last night.

Jo - Ellis' mum

Thursday, 12 April 2012

Ellis's wishes.

Well everyone, Ellis has asked that I (mum) update her blog.

As you may be aware Ellis elected to come to Hotel Papworth yesterday afternoon, after much thought and deliberation Ellis decided that she no longer wanted to continue treatment. Mainly because they have not really been effective over the past few weeks and daily chores have become extremely difficult. This decision wasn't taken lightly, but as you guys will also know, The only way is Ellis!

So Ellis is now chilled, eating ice lollies, relaxing and of course listening to her beloved music & as expected she has been as brave and outspoken as ever, (ashamed to say the same can't be said for us though).

Her beloved little brother Cael is safe and sound at his aunties & Ellis has spoken to him on the phone, telling him how much she loves him and to be a good boy. Mandy, sis, was with her last night with some close family and friends who she loves dearly.

For the first time in quite a long while Ellis is happy, relaxed, breathing easy and in no pain. However hard, we know this IS the right decision.

Finally, Ellis wants me to express her gratitude & love to you all for your support & comments, as this helped her through her journey greatly.

Thanks all.



Wednesday, 4 April 2012

Just what i need :)

So today i found out i'm going home tomorrow, as it's easter they wanted to get me home for the holidays. I had a good chat with the physio therapist, and she is keen for me build up my muscles, and has been on the phone to my local rehabilitation/physio team, to send someone out to my home to help me with an exercise regime, obviously nothing crazy just light work-outs to keep my leg muscles working, which should also theoretically help my lungs. Nothings confirmed yet but it's worth a shot and may be just what i need. I am going home on iv's and will be going back to clinic next Thursday. Really happy to be going home!!! 

I'm feeling quite positive actually, although i'm still getting more breathless than normal, i just have that feeling that everything's going to be okay.
I have such amazing supportive family and friends. Yesterday my sister Mandy, my very good friend Jodie, and our best mate Deano came up to see me, they always make an effort to come see me whilst i'm in and bring me goodies, and i'm really grateful to have them in my life, the 3 of them are all doing the 10k sponsored walk for CF Trust on April 29th, they all signed themselves up and i'm proud :) they all came to see my do the walk last year, but i am obviously too poorly to participate this year, so they felt the need to step up to the challenge instead. Love you Guys!!! If you wish to sponsor please go to 
Today my good old college friends Joane & Scott came up, and it really is was great to see them, I've known them for 4 years now can't believe how time flies, and i know they will always be by my side. It was lovely to see them, they even took me to McDonalds :) There visit was just what i needed, and reminded me not to shut people out. Love you guys!!
My mum is just the best, she comes up nearly every day when i'm in hospital, despite the hour drive each way, she rubs my back when i'm in uncomfortable, puts up with my mood swings when i take my anger out on her, does my iv's when i'm on them at home, takes me out when i'm bored, she's not just my mum, she's also my carer and best friend! Some times i wonder how she can stay so strong, but then everyone says i'm strong, so i guess i get it off her. My mum is my rock, and i really don't say it as much as i should, but i love you mum!!! My mum is also doing the sponsored walk :)
Anyway i'm just saying thanks to all my family and friends, the online support, the messages, and my all the feedback from this blog, i do feel so lucky to have the support and am feeling the love, you all keep me fighting and helping me get through..

Peace. \/

Monday, 2 April 2012

Pluck, Thread Or Wax?

So I've been in hospital since Thursday, came in as i had started to feel extremely tight chested and breathless, my appetite had disappeared. Been in 4 days now, my chest isn't as tight but I've still not really improved much, still waiting on the antibiotics to kick in i guess.
Yesterday was not a good day at all i felt really down and angry at the world, once i get myself in that mood it's hard to snap out of it. Plus my left lung was being a bitch and would not stop rumbling, driving me crazy. Been a bit more chirpier today although my lung is still rumbling and i'm still not where i want to be after 4 days of iv's. Anyway enough of the boring stuff, the staff were laughing at me earlier as i was laying on my bed with my mirror in one hand and tweezers in the other, plucking away. Eyebrows were looking a bit dodgy so had to sort that out because it was annoying me, feeling better now they're done and look nice again, also every pluck seemed to take away a little bit of stress haha. I then caused a debate about which is best plucking/threading or waxing.... opinions?
Was flicking through my magazines yesterday and spotted Jessie J wearing the exact same tiger jumper i've got,
come on Jessie get your own style ;) haha!   
Well i'm off to have my dinner now by that i mean a tuna melt panini lol. 
Oh and i just want to say my blog has had over 1000 views which i'm very happy about. So thanks everyone who reads and all the great feedback it makes it seem all worth while :)

Monday, 26 March 2012

General Update!

I've been out of hospital now for 12 days so far and i would say that i am doing pretty well and i still feel okay :) I've also been feeling a lot more happier within myself as well. I've been getting out the house, and keeping myself busy when i can. I seem to have found a great mix of 'drugs' that help me stay comfortable whilst i'm out and also let me actually enjoy being outside and not stressing! I take 1.25 mls of oramorph which keeps my lungs free of pain and also calms my breathing down a lot, and a lorazopam for anxiety, and it really does help. I think half the battle before was if  i was out and then started to get sore/breathless i'd start getting anxious or panic as i wasn't home where i should be when i'm 'sick'. So if i take a small bit or oramorph and lorazopam before heading out i seem to do just fine. As my breathing is better i'm in no pain and i'm not anxious about being away from home and out of my safety guard.
So what have i been up to i hear you ask? Well I've been making sure i get up dressed, and ready most days as even that itself makes you feel more human, I've been trying to get out as much as possible, taking my little brother to school and picking him up (even if i do just wait in the car) it's nice to see him running around with his nursery friends. We have had lovely weather here in Luton as have many other places, so i have taken advantage of this as best as i can, on Saturday me, my mum and little brother Cael went to Woburn Safari Park where you drive around in your car and get a close look at tigers/lions/zebras/giraffes/bears and monkeys, one monkey was comfortably sunbathing on top of a car roof for a good 5 minutes lol. And then they have a bit where you walk around and they have penguins, sea lions and lemurs .It was a great day out, i really enjoyed it. A few pics for you :)

Yesterday i popped into town to get my car washed by the lovely mall car park man lol. Whilst waiting i had a look around the shops and met up with my great friend Jodie, and had a cola float (Coca-Cola with ice cream) incase you didn't know, and then Our friend Uncle Deano come to meet us, but i didn't stay too long as stupid me forgot to take my oramorph and starting too feel a bit crappy! Wont forget that again. I do have a lovely clean car again though :) 

Had a phone call from Papworth today, blood test has shown my crp has increased a little (inflammation markers) if it's high it means infection basically. But consultant wasn't too concerned as i have been off iv's for 12 days, he said he wants a repeat blood test in a week or 2, but as i'm doing so well i don't need to go in yay :) Still hoping to spend longer than 16 days at home, and plan to keep enjoying every moment while i can. 

Now unfortunately for some bad news. 
A fellow CF friend of mine Stuart Gailbraith, passed away Sunday morning. He was just over 2 years post transplant and had started to decline, he was a real nice chap, and was always asking how i was doing although he was going through a lot himself. He was a right character and into his garage music! We had plans to meet, but unfortunately now that wont happen until our worlds collide again. Breath easy Stu, will miss out chats <3


Saturday, 17 March 2012

Jordan & Georgie, my inspiration.

Jordan Carissa Caprani 29/07/1995 - 10/03/2011 

My inspiration in life is my friend Jordan, she really was one of a kind. Beautiful, funny, feisty and strong and loved by everyone. Jordan was only tiny but made up for her height with her huge personality!! If she didn't like something she would tell you, she spoke her mind and wasn't afraid to be her own person. She really was one in a million.

I've known Jordan since forever really she also had Cystic Fibrosis, i used to see her in clinic when we were younger she'd always be wearing her stripy tights lol! Then we used to be on the ward regularly together, ooh how we used to keep the nurses on their toes. We would run around playing back to base. We would sneak out the ward and go up and down in the lifts, play hide and seek (jordz would take it a step further and hide for hours from the nurses when she was meant to be going to school) lol tut tut. I used to push her around in a little spare pram they kept on ward she was small enough to fit in it lol! We used to throw water bombs out the windows using rubber gloves, she taught me how to play the dance matt she always beat me though and also thrash everyone at scrabble, and complete all the play station games before anyone else i'm sure she was good at everything lol! I really looked up to Jordan she dealt with so much but always stayed strong and determined, although she was younger than me i really admired her. It's hard growing up especially with CF and we were a great support system for each other. I was so proud to see her grow into a beautiful young lady.

Georgie Stedman 06/07/1992 - 09/12/2009/

Georgie was also a close friend of mine and Jordan. She was pretty, confident,  popular and funny. We would all hang around the ward together in our own little CF gang causing mischief! I remember we were doing the old water bomb trick out the window but little did we know we had hit a hospital security guard, he come up to the ward and told the nurses that two young girls had been seen throwing water bombs at passers by and one had hit him.. -OOPS. Nurses told us not to do it again, but you could see they saw the funny side :) Georgie and Jordan were very close, they went on a shopping trip once and Jordan looked up to Georgie as a big sister. I miss them both dearly, and it still causes me great pain that they're gone, i hate CF for taking them away from me but without out it wouldn't of met 2 such amazing ladies.

Me and Jordz together :)

Visiting Jordz just after her one year anniversary 

Monday, 12 March 2012


I've been feeling a bit down and a little bit lost recently, like I've lost control of my own body and mind. I'm loosing myself in my 'illness'and letting it define me, and honestly i don't like it. As much as i convince myself i'm the one still in control, i just feel it's taking over.

When i have good days i try to get out of the house whether it be just a drive, go on a shopping trip or to a restaurant etc but it just makes me realise how little i can actually do, i feel weak and loose a sense of pride when i'm seen in wheelchair/oxygen all though i'm not ashamed of it but when you get people give you 'the look' as in "aww look at that poor girl" I'm not that poor girl, I've had and have a good life, i'm just the same as anyone else, I've probably experienced a lot more than some of them in fact, the only difference is i don't have working lungs like theirs.

Some people have said to me "you've been in this situation before haven't you" does that make it easier to deal with? No. In fact adjusting is always the hardest part. Before transplant i was very ill, i was dying and i was prepared, then when i got my new pair of  lungs i had to adjust to the idea of health as it was a whole new way of life for me. Now i'm adjusting back into my old way's it's not as simple as oh it's alright because you've lived like this before, it's a lot harder living like this second time round once you've experienced living a 'normal' life.

Despite this though  i was having a chat with 2 CF lads yesterday and i did say to them transplant was still the best thing i ever done, and i still can honestly say i have no regrets.

Now in other news, even though i'm a bit emotional at the mo i'm quite happy too and this is why. I am feeling the best i possibly can be, my health has really taken a step in the right direction these past few days and i'm feeling the best I've felt for a while. It has been a very successful hospital stay hence why i'm still not complaining that I've been in too long although i am getting rather itchy feet (signs of getting better that) I am now confident that i'm going to manage at home, and am going to be able to do a few fun things that I've been planning to do whilst i'm home! So health wise things are looking up for now and i'm hoping my emotions will follow it's footsteps.

Thanks for reading, Ellis x

Friday, 9 March 2012

Welcome :)

Hey guys welcome to my blog :) My first post eek! (Sorry if it's a boring one not got much to report)
I decided to create a blog to keep friends updated, and also for my own sake, sometimes i feel the urge to just shout out what i'm feeling without hurting my throat and i figured this was the best way to do it. I have created a few pages which basically tells my story so far so please read.

I'm in hospital at the moment, have been in for 8 days now having iv's and physiotherapy and also succeeding in my mission to gain weight, put on 2kg so far woohoo! Not loads but a good step in the right direction. The extra weight should get me a little stronger, and help fight off my infections easier and hopefully keep me out of hospital longer than 2 weeks at a time!
On ward round this morning my consultant said he will think about home on Monday. I'm not listening to that, I've learned never to believe that your going home until your in the car about to drive away. lol.
Anyway i know when i'm truly ready to go home as i'll start getting itchy feet, moody and bossy! That's not quite kicked in.. YET.

This admission has not been too bad actually i know a few people who are in at the moment too so it's nice to have someone to talk to. It hasn't particularly dragged either. I think it's bearable when you can see your improving. I'm walking a lot further than i could manage before and i am not breathless when i'm just sitting. I even managed to go for a drive yesterday only to Tesco's which is 15 minutes away but before even the thought of driving would just tire me out., so yay for me. I also finished my Jodi Picoult book i was reading called 'Change Of Hearts' read it within 2 days, i was quite impressed with that considering I've not read a book in years, well other than one of my 4 year old brother's Gruffalo or Bob the Builder books to him, does that count? lol. I've stocked up on my book collection now and i shall try to keep up the reading.

I have my lovely friends and family coming up tomorrow which is good, weekend's can be rather boring in hospital, especially when it's quiet. For now though i have chocolate, coke,  marshmallow's and DVDs including the first series of 'Miranda' everyone rated it so thought i would give it a try. This shall keep me occupied until my little brother gets here with mum, not seen him for over a week!! He has gone to nursery dressed as his favorite book character this afternoon (Harry Potter) haha look forward to seeing him, will add pictures if he is willing to stand still long enough for a photo lol.

Like i said sorry if it's a bit of a boring post, been working on my blog all day, still not how i want it but tired now and my bum is getting sore from sitting in the same chair for a few hours as it's the only place i can get  good internet signal.    

Harry Potter himself :)