Monday, 20 June 2011

What a washout....literally

Ive been pretty busy actaully since Harefield so this post may be a longish one!!

The day finally came that i had been looking forward to since xmas. I had brought my daddy tickets for me and him to go to the MotoGP to watch the motorbike racing. He loves motorbikes and i've never been, and after the start to the year that we have both had, (me going through the transplant journey and him having radiotherapy treatment) it was time for us to have fun. To sum it up, it was SHIT. It rained hard the whole day. Its making me upset just thinking about it as i felt soooo disappointed.

It was at Silverstone course which took us 2 hours to get too. We got there and everything was outdoor apart from a few shops and stalls so we went under them for shelter and I brought a t-shirt and drink. The main race started at 1pm so we walked about to find a space to stand to watch it and we actually found quite a good place. The race started and we watched it and i loved it!! The bikes were so loud and exciting!! We left after the race and had the 2 hour drive back and were home at 4pm. We were both soaked, cold and tired. It was supposed to be a lovely day event that finished at 5, that had lots of entertainment, things to see and do, look at all the bikes and different races, and the weather just completely messed it up. It was one of the worst 'weather' days this year (typical) and although its no-ones fault and there is nothing that could have been done, it still doesnt mean I cant be really angry and let down by it.

I cried in the car on the way home and most of that night to be honest. My dad was fine about it and it brings a slight smile when we think of how we both must of looked on the day, but it still hurts and i want to re-do the day all over again. Apparently there is racing in august at Brands Hatch which is much nearer to us, so i think we will try that one.

My portable oxygen is great and much easier than my concentrator as its lighter, less obvious and lasts longer. Other than my lungs being in a permanant state of crapness, im feeling fine. I think the constant oxygen is helping as I have more energy, have more colour in my face and am not always worrying about what my breathing is doing and whether I need to go on the oxygen. I just have to accept its part of my life now. Although I dont think i will make it to transplant if these bloody wires have anything to do with it. The amount of times i have wrapped the oxygen tubing around my legs or got it stuck under a door and walked and practically ripped my damn head off. Im a danger to myself!!

I had my pelvic scan on Friday. That was fun - not! Appointment was for 9am which put me in a mood straight away, as I dont do mornings. There are 2 ways to do the scan but I thought I had to have it the 1st way so I didnt say anything. I had to have an empty bladder but whilst doing the scan, it wasnt able to get clear enough results so therefore, the 2nd way would have to be done. I didnt mind until I found out you had to have a full bladder for this to be done. FOR GOD SAKE!! It then took me until 12 to drink enough water and juice in order for the scan to take place. A mixture of my overnight feed and the fact that I was sick in the night for no apparent reason added to the problems as both these things make you dehydrated, so the amount of water i was drinking wasnt going into my bladder, it was being absorbed by my body. Anyway I finally got home at 1pm and slept. The results will hopefully be through this week and then I can be put on the transplant list!!

Lets finish this post off with some good news. I won my court battle!! I was due in court on saturday at 11am. They rang at 10.15am, just as we were getting ready, to say that the judge had thrown my case out and that we had won. I didnt need to attend and that they would send written proof this week. Of course, i was happy as now i shouldnt have to worry about not getting the benefits and they will leave me alone, however, i was really angry that they have left it until last minute as i was all ready to go. Lance, my nurse, had even got on the train and was waiting for it to leave the station when we rang him and told him, he had to jump off!! So at least this week I can concentrate on other things, rather than look for a job ;) haha!!

x Lots of love x


  1. Hi, my name's Victoria, I'm in the US, Brooklyn, NY & I just started following ur site, plz do the same for me, I am a pre-liver transplant patient who's in need of advice & support!
    Thanks! Feel free to invite your friends to become followers!

  2. BTW, I LOVE ur "The Signs" page, except for liver disease it's, we fit in maternity clothes, ppl always ask "Is it a boy or a girl?" or "When are you due?"! I should make a page like that! lol

  3. Lst comment, I swear! I read "The Girl" and we all feel that way, but these are things we have to accept. I was raised STRICT Catholic, had religion shoved dwn my throat, considered myself an Atheist for most of my adult life, but YOU NEED SOMETHING TO BELIEVE IN, HON! Everyone's scared to die, but I've accepted that these may be the consequences of my illness & if God wills me to live, I will. If he doesn't, then it's time for me to go. Believe me, I don't speak of this lightly. I have a 10yr old kid to live for. But dwelling on those thoughts were destroying me! You can't hold all the weight of these feelings alone, you gotta let God take care of that, cause he will, regardless. WE ALL DIE! Some earlier than others. I know u may not want to hear this, but I read it,& I saw a part of myself in those words. Also, you should add the "tweet" button to your pages, so I don't have to leave comments, jst look at my blog and see how it's set up.I set it up so ppl can comment on whatever page their on, you just gotta know the HTML codes. Click on "add Gadget", add an HTML/TEXT Gadget, here's the code to copy & paste, and put it in the bottom of ur page. You gotta set it up at , follow the "Get It Now" instructions, personalize it, & it will show on the bottom of all ur pages, so ppl can comment easily! If you have prob's w/it,send me a tweet! I hope this talk has helped a lil! BTW, wibiya is a free gadget, just follow the instructions.