Monday, 12 March 2012

Feelings of Holidays :(

Been a few days since iv last blogged...didnt have much to say, dont wanna write crap on here or just repeat myself constantly!

So last week i spent the begining of the week recovering from the weekend, majority of the time sat on oxygen, was still quite productive! i had my mates over for a "baby shower meeting" for miss hackett, she was very well prepared we all had booklets each, felt like we was back at school!- fun school tho! its all very exciting cant wait for baby bella to be here!!

Then ended up driving miles up north to take Lee to buy a new van! so made the journey worth while for me and made a little de-tour to manchester and stayed with my cousin sally!! was so great to see her, not seen her in ages!
My chest seemed to hold out pretty well, wasnt on oxygen much..bit of a good job as iv run out of liquid oxygen so back to using my old portable oxygen compressor which is tempermental, bloody thing just bleeps for no reason, right pain in the arse!

Weekend i spent at Lees, was beautiful weather, i returned to me favourite saturday night hobby of Gala Bingo in Basingstoke!! I love it!! iv lost my touch tho as i won sod all, so im techniqually £40 down :( you gotta be in it to win it tho aye ;) typical tho a girl that was pregnaunt who was with us won £30!! second time thats happened now!! lol chest wasnt great but didnt want to let on, dont no why but dont feel comfortable using my oxygen around people im not use to! its so ridiclious and i need to stop being like this, lee always gets the hump with me! just cant help it! its not that im embarrassed about it, as most people now no whats wrong with me, but i dont want to make anyone else feel uncomfortable or worry about me! really i should just be worrying about myself! oh well :)

Something thats really bothering me at the moment, and not everyone understands how i feel...

so its that time of the year where everyones booking or talking about holidays for the summer! now im a complete tanoholic and i love my holidays!!
I know some people dont get the chance to go on holidays, but i dont work and its what i like to spend my money on usual. on average i usually go on at least 2 holidays a year and in 2010 before i started to drop alot i had 4 holidays!! would have been 5 if i hadnt fallen so ill in may 2010 for turkey!!
and last year in may i managed to go to spain with my auntie uncle and two cousins and amelie, i had the wheelchair which was great to helpand still managed to get around obviously i was alot better than i was now, if only id realised that it would have been my last holiday!! :(. and had planned to go back to spain for my 21st with family but as my lung collapsed the week before my 21st in july and spending 5 weeks in hospital after having a chest drain in etc i was told i wasnt allowed to fly for at least 6 weeks and my mum was too scared to take me away incase something happened!

so you get the idea i just love holidays!

well now that im on the transplant list holidays are well and truely out of the question...or are they?
when you go for your assesment at harefield and you are told your good to go on the list they say you must live your life as normal, as there is a 50/50 chance of getting it! now as positive as i am, like iv said before im still very realistic about life and my circumstances!

when your on the list, you can choose to come off for example to go away for a week or something, so you get taken off the list and even if lungs come up for you, your not told about this, as it would be like before joining the list, once your back you go straight back on the list!

now i no most people who might read this will be thinking how crazy would you be to even think of coming off the list!? and i should be lucky to be on it! and i totally get that and to be fair if i was hearing this from someone else i would prob disagree with myself but what people dont think of is the bigger picture....

just because im on the transplant list it doesnt mean i will get my chance of receiving new lungs its not like there in a lab somewhere with a name tag hanging off them waiting to be allocated to people...im waiting for someone to die to get them! and not only that, but they have to be on the donor regisiter and/or there family are willing to agree! and at hard times people dont always agree!
its not something simple as a straight forward operation to fix a broken leg!

i might wait 1,2,3 maybe 4 years iv im lucky and my body is strong enough to wait that long, for new lungs and be great if i get them!...
but i still consider myself well enough to handle alot of things, iv changed so much in this last year and i no this time next year i wont be as well as i am now, and because of this its my reason for wanting to go away this year, my family disagree and lee gets angry when i mention it, as what happens if lungs come up when im away, but my point is i wont no! or they say ul spend the whole week thinking about it..and truely i wont, il be spending my week thinking how amazing it is that iv managed to get away and it might be my last chance of a holiday ever.

i just dont want to live my life with regret, if i get 3 years down the line and im so ill and i still havent had a transplant and il think cor why didnt i go on holiday when i was half well enough, why didnt i take the chance, because i no i will regret it! my lung function is 16% but my sats are between 93-95% so i no i could handle it!
and theres also things that arent so important but they still matter, if i do get a transplant, i wont ever be able to tan again due to the anti rejection tablets cause skin cancer, and i cant eat seafood...and i absolutely LOVE gambas pil pil lol :(
either way it will be a last minute decision and if i do go il book a few days before i fly out etc.

i want to talk to harefield about it at my 6 month review in june and see what there feelings are about it and if they support me etc, last thing i want to do is upset them or them think im not serious about all this as thats really not the case!
i just dont want to be waiting around for something that might never happen!

enough about depressing moany old george back to some good stuff!

i have two Amazing friends who have done some charity events for the Cystic Fibrosis Trust!!
firstly my best Friend Daisy Miller did they Nuts challenge with Ruth and someone else! which i think you can still sponsor here http://www.justgiving.com/teams/thenuts and as crazy as she is i think shes doing it in the summer aswell so please sponsor and follow her on twitter to keep updated @Yummydoo. and heres some pics below!!

and this weekend my buddy Mickey did a half marathon in silverstone and again for Cystic Fibrosis!!
1st one of this runs he has completed, please sponsor him for the rest http://uk.virginmoneygiving.com/fundraiser-web/fundraiser/showFundraiserProfilePage.action?userUrl=MichaelPark can also follow him on twitter at @Mickey_Parker so you no how he gets on!!

thats all for blogging today

love love

1,950 hours on the transplant list xx


  1. hey babe, i think you should just go for it! if you're having an amazing few days in a row, then book a holiday! :D you only live once! <3

  2. Hey hon!
    I love the honesty in your blog! I can completely understand your feelings about holidays and so on. Harefield have always stressed to me the importance of living as normal a life as possible and if that involves going on holiday or doing something that requires your being taken off the list for a weekend, or a week, so be it. We will hopefully (and we have to believe it) be lucky and get our transplants, but as you said this could not be for a very long time. (Also, as you say, if the call came when you were 'off' you would be none the wiser. There's also the possibility that it would be a false alarm too!)
    I've never personally asked to be taken off the list, as my husband's work committments have prevented us from taking any decent amount of time out, but we have had some great breaks in this country.
    Sorry to ramble on, I just really wanted to let you know that I can completely empathise with you - as well as I can see how my parents would empathise with Lee and your parents!
    Hope your call somes soon! Sam xx
    PS - Can't believe you were in Basingstoke - such a small world eh?! x