5.8.12

Friends, Wimbledon, more Olympics and general reflection :-)


Quote of the week:- Theday which we fear as our last is but the birthday of eternity. ~Seneca

Heya Blogland,
 
30-07-2012
Well today has been pretty much filled with Olympics,watching us come fourth in the diving which was disappointing but they triedtheir best which is all anybody can ask. Then I watched all the Gymnastics andI was cheering our boys on, then we were robbed of our Silver medal… okay weweren’t robbed per se but I’m just miffed that their challenge was accepted.But like it was said it’s the first team medal we’ve received as a country in100 years so it’s an amazing accomplishment and they did absolutely fantastic.

I know my blogs are going to seem really one tracked andit’s going to be me rambling on about transplant a lot and whoever is readingthis will probably be getting annoyed at me, but the thing is when you are onthe list it’s pretty much in your mind all the time. If you ask someone who ison the list and they say they don’t think about it everyday then they areprobably lying.

For me it is always there even if it’s not the main thingI’m thinking about it’s kind of got a little room at the back of my head thatyou always know is there if that makes sense. But anyway the reason I apologiseis because I’m about to go on one of my reflective rants again lol. 

So there’s this woman who is not sure if she would say yesto a transplant if she was offered transplant because she knows the ins andouts of the NHS etc. etc. This got me thinking because when I was going throughthe process of being put on the list I did have second thoughts becausepersonally I am not a masochist and the idea of being in pain terrifies me.Also my brain pretty much hits overdrive and thinks of really implausiblethings like waking up in the middle of surgery, or what happens if the worldwere to end while I was under? Or what would happen if something really badhappened while I was under and it all basically ends up with me waking up inthe middle of surgery. The thought terrifies me, I know it will probably neverhappen but these are thoughts that pretty much are on a constant loop in mymind. Now I don’t work within the NHS so I basically have to go by what myConsultants, Doctors, co-ordinators and Nurses all tell me and I fine withthat. But obviously if you work in NHS you’ve probably seen stuff that nonormal person sees I don’t see people turn from really well to dead in thespace of a few minutes. I also don’t ask as many questions as I should. I knowpeople who ask a lot of questions but I’m someone who in regards to my medicalcondition, I’m on a need to know basis. I don’t know specific numbers; I don’tknow what other people’s numbers are. All I know is what I need to be and whatis good for me. I’m under the firm belief that too much information can be abad thing some times. I don’t like to self diagnose. The only thing I would sayI have become more aware of since being on the list would be when I get colds.Now I have to make sure it doesn’t turn into a chest infection, one that wouldbe damaging, and two it would stop me getting my transplant.  This is why I personally believe children getthrough things that adults could only dream of getting through. They don’t knowhalf of the things an adult does and therefore isn’t scared of it a lot ofchildren I’ve met in my years don’t even really know that they are ill and it’san amazing thing to witness. I was blessed enough in my time at Great OrmandStreet to meet some amazing children. I got to meet a little girl who had had aHeart transplant 3 days before and she was walking and running around likenothing had happened. If you don’t believe in miracles you should have seenthis little girl. I think this is definitely why I don’t ask too manyquestions. If it’s important they will tell me. If it’s something that willmake me worry for no reason then they don’t tell me.

Another reason I pretty much live by this is because I wasgiven till the age of 5 to live and then that deadline came and went, and thenwhen I was diagnosed at 11 with PH I was told that at the moment people wereonly living a few years, that came and went to, so now I really don’t worrywith the deadlines so much. I’m probably living in a little bubble, and somepeople probably think I’m being a bit naïve but it’s got me this far…

04-08-2012  

Oh Dear I haven’t been very prepared this week, I startedthe week with the very best of intentions to write a little something everyday.Only thing is this week I pretty much slept in till noon everyday, and then Iwatched Olympics pretty much all day. I’m really into the Olympics this year,probably because it’s in London and it means that the tv schedule is reallygood for me because I understand our one. When it was in Beijing Olympics I hadno idea what was going on when and then I was basically just watching replaysand never seeing anything live, which totally sucked. So loving seeing it allthe first time it happens :-D.

Got to see my two very good friends this week. Rosie andGina. I went to Bingo with Rosie, her boyfriend Sam and her sister Lucy. It wasso much fun but some of those old biddy’s get really into it and if you madethe slightest noise they would pretty much give you glare that said “shut up,or die” LOL. We didn’t win anything which sucks but hey ho it was free so I’mnot complaining.  Me, Meg and Gina had aevening of pizza, Olympics and chatting. This was really good because Ginalives all the way up in Manchester so I don’t get to see her too often but thisdid mean I got to give her, her Birthday present. We are off to see “Wicked” onthe 17th October which I’m really excited about. I’ve already seenit, last year with Megan, but it is such a good West End show, and if I couldafford it I would pay to see it over and over and over again until I got fed upof it LOL. I’m going to have to find a cheap hotel because it’s a 7:30 showingand we are not travelling late at night out of London. Also that gives us anopportunity to do a bit of London shopping. I haven’t been to London recentlywhere is wasn’t for hospital, so I’m going to drag Gina to Harrods where I willEat my weight in Harrods ice-cream, it’s that good!


I got a call off of the foundation that I applied to. (It’sa foundation that grants “special” days for terminally/seriously ill adults). Ioriginally asked to have dinner with the cast of the Vampire Diaries which mysister and I would have really enjoyed but they rang and said this was littleout of their reach because it would have cost a fortune. To be honest when Iasked it I knew it would have probably been a bit unrealistic, but if you don’task you don’t get, so it was worth a go. So they’ve given me the weekend to thinkit over and ask for something else. It has to be in the UK and literally theonly thing I really want to do in the UK that I can’t afford to do myself is goto a Wimbledon final. I have wanted to do this since I was about 12 years old.I’m desperate to play Tennis but due my condition it’s pretty impossible. So onMonday I will give them a ring and ask if me and my family could have a tour ofWimbledon and get to go to next years Wimbledon final. I’m not sure how much mysisters will enjoy it because they aren’t the biggest Tennis fans, but I’m surePimm’s and strawberries and cream will make up for that. Also if Murray makesit to the final again next year I’m sure they will get into the spirit ofthings LOL. So lets hope they can make that happen because that would be awesome! 


You know when I got told I was going on the list, I gottold I had to continue living. It sounds very simple, and when they say it toyou, you kind of wonder what they mean. Of course you’ll continue living whatelse would you do? I’ve been on the list 3 and half months now and I think Iget it. When your on the list all you do is wait, the reason they tell you tokeep on living is because most of us know that we may never get that call, mostof us will die and that’s the way the world works. So they tell you to keepliving because do you really want say you spent your last moments waiting forsomething that would never happen?

So... Me, I deal with it by creating other mini things that Ifind more exciting and look forward to more in the moment. I know thatessentially the end goal is transplant, but I try to look forward to somethingthat I know will happen and I’m far more likely to make it to. So for me I havea shopping trip in Cardiff this month. I’m going to get my Open Uni stuff thismonth to start my level 3 modules. I’ve got my nephews birthday in September. I’mgoing to go to the PH conference in October followed swiftly by “Wicked” withGina. Mine and Megan’s Birthday, Christmas, the birth of my new little niece ornephew …. The list goes on… these are little goals that I set myself and if Iget the call for my new heart and lungs in the mean time then that’s just anamazing bonus.

Essentially I am always waiting, kind of waiting for my lifeto begin but in the mean time I’m keeping myself busy. I’m bored of waiting forsomething that may never happen, so for right now it’s just going to sit in theback of my mind.

Have a wonderful Sunday everyone
Stacie xoxo

4 comments:

  1. Stacie, I really understand how you feel, I've been waiting for ten months now and it is always there knowing you might get a call and having to deal with your illness at the same time. They said to me that a year post transplant , if I am doing well that is the time they will say go and do everything you really want to. After they told me this, I made a firm decision that I wouldn't wait til then and I would be making most of every day now, that's why Rob and I are always going away and out and about. Often my illness restricts me, but I love to see new things and places and that keeps us busy while we wait and gives us lots to look forward to, you are right to make plans and have things to look forward to, as you say if the transplant comes in the meantime then that will be a bonus!

    ReplyDelete
  2. I think going on the list sort of makes people wake-up, it's a horrible way to do it but it means we realise we have to live :-) xoxo

    ReplyDelete
  3. I think your mini goals to look forward to are great. I'm kind of trying to do that. I try to plan something to look forward to every weekend even if it's just little. It helps break up the time too. I hope you get to go to Wimbeldon that sounds like a lot of fun. Also congratulations on your exams!

    ReplyDelete
  4. I just read your post congratulations and really good luck! I'm hoping it happens too it would be amazing! It's the one sport I actually follow LOL xoxo

    ReplyDelete

Thank-you for commenting <3