Wednesday, 3 December 2014

One Year!!

Has it really been 3 months since my last post?? Oh dear im very sorry lol 

To be honest, noting has really happened in the 'hospital world' which is a great thing so i haven't had anything to update you all about :) 

Iv had a clinic in that time, which was all well. My Lungfuction is a lovely 90% and everything else is very good :) They want me to have a CT scan in January just to make sure that the 'mass' i had on my chest in August is still at bay, and i also will have my yearly bone infusion..i really hate it lol 

In November i planned a Day Of The Living party for awareness of Live Life Give Life which i am an advocate for. It was a Sugar Skull theme, and everyone done really well in helping me raise £551.89p!! Amazing for one night! I have a few photos of the party which il add at the bottom :) 

So tomorrow is a very special day..Its my One Year since my transplant!! can you believe it? Because i really can't, its gone so so fast! This year has been one of the most amazing but truly hardest years of my life. Its been a hard year in a way of coming to terms with dying for so long and knowing i haven't got long left to then having a brand new life, it is for me, really hard to deal with. Obviously im so so grateful but being told if this call doesn't come that's it. I never thought for one second i would get my call. Its hard to understand what im feeling unless you have been there yourself. And also this year my beautiful Nanny passed away. I live with my Nan and Gramps so it has been very hard having her here all then time and then not. Its been a really tough six months for the whole family. 

But all the good stuff that has happened to me this year, iv been able to go away for weekends, go on days out, plan days months ahead (which iv never been able to do!) and really just do anything i fancy :) Spending lots of time with my family and seeing my little brothers and sister too just getting on with their lives :) And iv also fallen in love :) .. So it has been a good year too. 

My transplant day is even more special because the same time i was getting my lungs a lovely lady got her heart from the same donor, even better is we have been in contact and have even met up a few times, im so very pleased to call her my friend now she is a lovely lady and im honoured to have the same donor as her. 

I not sure if you have seen lately but im in a calendar for Live Life Give Life, i am Miss January! the calendars are £10 and all the profits go straight to LLGL. So please please buy one (or two) there for a great cause

So here are a few photos over the last months :) 

Thursday, 3 July 2014

a good day.

Well todays clinc is probably the best clinic iv ever had!! 

Me and gramps set off at 7 to try and be the first there (the earlier you get the the quicker you get out) but we were about the 3rd ones there, which still wasn't too bad. 

I had all my usal tests done, bloods, lungfunction and xray..i saw a friend there too so was nice to catch up with her and also i met a guy who had his transplant around the same time as me and i heard about him from nurses around the ward, so was nice to put a face to the name and have a little chat.

I saw my doctor about half 10-11 i think.. she said that she was very impressed with my lungfucntion, she said that if she hant met me or known about me by my readings and xray she would of never know i had a transplant! woo!! my lungfuction is now 90%! it hasn't been that high since i was around 9-10? maybe younger! So im so so happy about that!! 

I asked about me flying and holiday trips but she said as im doing so well she doesn't want to risk anything by going away earlier than i should...which is completely fair. I also found out about my donor today, was a bit nervous waiting to hear and was thinking if i am ready to find out but im glad i did, now i sort of have an idea of who they were. After clinic was all done me and gramps went for a pub lunch :) 

This week i have been working hard on my exercising which has really paid legs are killing though!! its strange but wonderful that its my legs stopping me from working out instead of my lungs..its a good feeling. 

so all in all today has been a good day! And to make it even better my sister got her apprenticeship she wanted in painting and decorating! 

Its nice having good days for a change..

Wednesday, 2 July 2014

fault in our stars

I just want to start by saying thank you for all the lovely messages you have sent me over these last few weeks, its been very difficult but we are a strong family.

Since my last clinic i have been very last clinic was now 5 weeks ago! i haven't done that long being from hospital in about 2 years!! I do have clinic tomorrow and il finally be asking about my donor.. im feeling very nervous about this but i do want to know about them, i think of them everyday so it would be nice to have some sort of idea who they were. I think its too soon to be writing to there family but in time i will.

Im also going to ask about when i can go on holidays too.. im not desperate to go away and im not going to put my body at risk if i cant. But my gramps has a place in turkey and he needs to go out there in a few months so going to see what they say.. there is also a few little places id like to go too but i can get to them by euro star or ferry.

Since my last blog i have read a book...yes an actual book!!

'The fault in our stars' 

My friend Stacie told me about it and said i should read it, but for ages i put it off because the story is about a girl with cancer and whos on oxygen all the time...i thought reading it would just depress me and bring it all back to me. But i read it any way... once i started it i couldn't put it down and read it in that day. It was so beautiful, i mean i cried and it broke my heart but i loved it at the same time. Some of the lines were exactly how i felt at times, i was reading it thinking how can someone who hasn't got a lung disease be so right on the things we go through. One line was 'im like a grenade' and i 100% agree with that, thats what i felt like at times. After reading this i went a saw the film, i sobbed the whole way through... its the most honest film iv ever seen about an illness, it doesn't hide or just show the girl wearing oxygen once or twice in the movie, she wore it the whole time, her clothes were to baggy for her, she struggled walking, she didn't want to eat and it just goes on.. i just really love it.

Monday, 23 June 2014

A very hard day ahead..

So today is the day.

We are saying goodbye to my nanny.

To be honest im really not sure what to say about it, there isn't much to say. I v written something to say but im not sure if i will be able to read it, if not they or my mum will read it for me.

I went with my mum and gramps to see nan again and do her nails, this time instead of being on a bed she was in her casket, white willow with Ipswich town blue on the inside. But as soon as i saw nan i couldn't do it. It was just to hard to see nan like that, but mum done nans nails for me.

Nans favourite colour was Red, so alot of us are wear that colour. Iv got a red dress i know she would love. And my nails are the brightest red for her.

Today is going to be the hardest day of our lives. But were a strong family and we will be there for each other. And really its not a goodbye, shes always with us.

Thank you all for your messages and cards.. we have had so many so its hard to thank you all individually but we are very touched by it all.

Monday, 9 June 2014

My inspiration

On Friday my Nanny finally came home...but she wasn't well at all. She had been in hospital, the hospice and a nursing home. In total she had been away 5 weeks. We were all so excited to get nan home. As some of you know i live with my nan and gramps so i was so exited. My mum is staying with us and my aunt too.

Then on Saturday morning my mum woke me up to the worst news my beautiful Nanny had passed away. My Mum, Aunt and Gramps was with her, so im so glad she wasn't alone. I am just heart broken. Iv never felt pain like this.

My nan is my hero, she made me want to be well and carry on fighting...She was there for me through everything. All the years i had clinics, stays in hospital, when i was feeling upset, happy, we had so many laughs and jokes. I moved in with her and my gramps about 6 years ago. So i am so lucky iv got to spend everyday for the last fews years with her. i wouldn't replace them for the world.

We went to see Ipswich Town play every Saturday for 10 years together. The best days of my life.

I used to do my nan nails alot, so this week me and Gramps are going to say goodbye one last time and il be doing her nails for the last time. I love her so much and miss her even more.

My hero & best friend.

Wednesday, 7 May 2014

A long two weeks

It has been a long while since my last blog and im sorry for that, but these last two weeks have been very hard. 

So two weeks ago was my clinic, it went well they are all happy.. but mu lung function was down 10%, its now 79% but they really weren't worried. I was haha i was sitting in the waiting room panicking for hours until i got seen too. My consultant was happy with how i am, my xray hasnt changed at all and bloods are good. She said my LF being down is normal for the first 6-9 months, its my chest finding its base line.. I have clinic tomorrow and have my fingers crossed its gone up! :D 

I have also been to London for the weekend with my bestie, she lives there so i stayed with her. We had such a fun time! We went and saw McBusted!! When i was on telly for the ITN to say thank you they got me two tickets to see them and we were in the Friends and Family section! was amazing! we were so close and we saw all the wifes of the boys! Emma Willis too! 

When i got back from London my nan was in hospital, i haven't really spoke about my nan on my blog before but she isnt well. She was diagnosed with Lung Cancer 3 years ago and then a year later we found out it had spread to the brain. She has been fighting so hard, She is my inspiration. My Gramps has been looking after her with no help from carers. In the last year she has gotten much worse, and last week she just got very bad and we called an ambulance out ( i live with my nan and gramps) the ambulance got here and we went to addenbrooks. We were there for hours! It turned out she had fluid around the lungs and had an infection. She had a chest drain out in and was put on IVs. Then a few days ago she got moved to the hospice behind west suffolk hospital. They told us that it looks like she has weeks left. Its very heart breaking. My gramps is staying with her all the time now and im at home with my aunt. We are up the hospice everyday, its very emotionally draining. By the time i get home i just want to pass out im so tired. I hate seeing my nanny like this, she is my best friend. I love her so much.