Disney Paris our wedding anniversary

So again its a catch up by photos, Well Saturday was mine and stuart wedding anniversary and we jetted of to disney paris, a four star hotel, lots and lots of great food, the first time in ages I'v just allowed myself to eat what i want and when I want. It was totally indulgence, We spent 3 days in the disney parks and the evenings in disney villiage. Here are a few snap shots of our first holiday post transplant.

Waiting for the plane

On the coach to our hotel

With Mickey

Me with jennifer a friend who works over in disney





I love scarey rides, but apparently I dont look like i do lol.





Us posing before we go into the wildwest dinner and show amazing!!



I had sucha great time, it feels like everything I have been waiting for is coming together, Im not so worried now about post transplant complications and first year problems, everything is settling down, physically, mentally. Im where I want to be, Im on target. The ball is looming and life just seems good. Im also planning my next holiday to the elysium in cyprus where we were booked to get married, im hoping to go in september for my birthday.





Disney Paris

Well I had clinic on Thursday, previously I was told to wait and see about a holiday and that I possibly couldn't go until September as I'm sure most of you know, me and Stu didn't really get a honey moon, so to speak. We spend a few nights in Cornwall and it was a very grand hotel but dying on your 'honey moon' isn't much fun. So we were hoping to do away for a 2 week break on our first wedding anniversary. Which is next week 16th of June. I decided to see if we could go away for 4 days to Paris or Spain. I was desperate to get away and would just love to go anywhere for a short amount of time. I got the go ahead. We have just booked Disney Paris for 3 days!! I'm so excited I can't believe it, I can't even begin to tell everyone how excited I am, I went into the travel agents today and it just came out to expensive for us £1700+ but I got on the Internet tonight and have sorted out a deal that's less than half that!!! Still the most expensive 3 days of my life but for once when you've got to do something you've just got to do it and we have. I feel so highly emotional and grateful, I'm living and enjoying my life doing the things I've wanted to do, Holidays were such a big part of what I wanted to be able to do post TX, Just to enjoy every second and soak up all that life has to offer. I'm so grateful I feel like I could burst. So on the 16th we fly to paris and stay at the best disney hotel and go to the disney parks!

I'm going to leave it there, a short but sweet post.

Lazy blogging a good catch up

Ok so this is what I call lazey blogging. I have done so much so im goin to upload a load of photos that basicly tell you what I'v been doing. :-)

 

I started my training for my charity bike ride, I havn't really riden a bike properly in years and never done alot of miles. But i felt like I was taking to it really quickly.



I had a root canal, I have perfect teeth, healthy teeth, but due to my bronch things got chipped, a tooth feel out and I got an abcess, hence the root canal, I must have gums of steel because non of it was painful not event he injection.

We held a bake sale to support the ball and raised £180 it was the best set up yet, Me, my Mum and Nan The  three muskateers.





I went to a pole and acro/hand balancing work shop with Bendy Kate from got to dance! It was fab Im now regularly practicing and seeing as I wouldnt do much there I have improved alot!



I went to devpn county show and loved it heres an alpaca teddy, soooo soft, last year I was in a wheel chair and reaching what I call the end, as well as preparing for my wedding, I can't belive how things have changed, last year I said when I had new lungs I would hold a LLTGL stall there, It was a bit to much this year, but hopefully next year.



Heres the biggest iced bun I have ever seen, I LOVE iced buns, cinamon, fruit, cherry any as long as theres heeps of icing and a cherry on the top, there was one on this one, I ate it tho, whoops

I kept the cycling up I cycled all the way to sidmouth and back via ottery and fairmile 25miles in one day. my second week of training I cycled 100miles in one week!!



My Hand balancing got good!

I have been cycling, weight training and hand balancing at every oppertunity, My goal A. to be in the best physical shape i can be in B. to have a very toned body. I feel my hard work is getting there.

Flexibility training as well!!



I went out on a night out witht the girls, I had sucha  good time, I don't go out very often pubbing/barring (i certainly dont go clubbing) I got all glammed up and had a great time, I may have been home by 12 but thats the way I like it.



The Handbalancing kept improving!! At a family BBQ a few days ago.

So This  week I have already cycled 50miles, Im only in my 3rd week of training, Im going to a medical seminar tommorrow to talk about CF and Transplant. Then at the weekend my friend Hannah is coming to stay, she had a heart transplant and we met in clinic after talking for ages. Im soo excited. Then next week the annual check up with harefield.

A reply

I went to clinic on Thursday. It was a great clinic I got to meet Sarah who's from Cornwall, so my neck of the woods and It was great just chatting about things with someone who's been through the same sort of thing. I have to say, I find I have such a connection with other transplant patient especially Lungs and heart. Something about your chest being cut open really brings you together. Which is why I eventually want to set up a Lung transplant Support group for the southwest. Its something I have though about and if theres one already out there, then well there not doing very well as I don't feel very supported. I know It could be a great deal of work as I want anyone in the southwest to know that the group exists and have regular get together, once a month. Iv decided It's my next project after Sept 9th the date I finish my bike ride, that is if I can hold off till then. I've got great ideas to make sure south west patients know we exists and I think It could be a really great thing. My Lung function was the highest yet.

Anyway, as I was in clinic waiting. Rob the transplant coordinator came up to me and asked to speak in private. I knew what it was about, My letter. He said there was a reply and that it was quite detailed and that my donors family also know who I am. I knew I would accept this letter and said yes. He went to go get it. I went back and sat with my mum and burst in to tears. I had been waiting and wondering and now the time was here, suddenly I felt great fear, would they like me? Have I done enough for them to be happy about there donation? What if they were disappointed or upset by anything I had done? Rob arrived back with he letter and saw I was very upset and asked again, 'are you sure?' I was, I knew I would be upset but I had to read, I had to know.

It was one of the loveliest letters I have read, So many beautiful memory's of my donor, things I could only wish to know. I feel so lucky to have been given this information, I already owe my donors family so much, but this was just that one step further. I can never say thank you enough to them. The letter was left open for me to write back. I'm sure I will, when I have had time to absorb the many facts.

Its leads me to a film I was watching earlier, based on a real story, I can't remember the title I was to absorbed in the story. I switched it on and little did I know It would lead to organ donation. A teenager had died in a car accident and the family were approached about organ donation. I burst into tears, thinking of what my donors family went through and the hurt they must of been feeling. The deep pain I felt watching this, just made me feel so grateful and thankful to them.

So I will leave my post there today.

Thank you for reading.

BBC Radio Devon Interview

I did a interview with BBC radio devon yesterday Heres the link and a break down of my interview, im first on at 1hr20mins intro, 1hr 40mins my story, 2hr10mins attachment to human body, how many ppl in our room were on the register, opt out why i dont support it, speakers project , 2hrs 25mins, how to sign the register step by step, bme, organ donation & medical science, 3hrs 43mins The Ball theres a few other things i talk about and bits through out the show.
http://www.bbc.co.uk/programmes/p00r3khc

Hope you like.

My Name is Kirstie Tancock and I will not be defined by one thing, but an everlasting list of things

Have you ever read the hunger games? Especially the last book Mockingjay. Reading this book I felt a great number of similarity's to the main character, Katniss Everdeen. Why? Katniss becomes a symbol of hope a person that people look up to; she goes through huge trials and great trauma. Now I'm not saying I deserve to be a symbol of hope, but I receive a great lot of emails of people saying I'm an inspiration. To me I am just doing what I have to do, kind of like Katniss was. Just trying to survive and part of my personal survival was telling my tale. Katniss goes through a lot of trauma during the hunger games, a lot of loss and generally a hard time, I relate to this as going through my transplant. It was a great trauma. How her trauma was portrayed brought back a lot of feeling and memories and thoughts that I still feel but suppress.

Some days, I feel completely recovered and like I am ready to fight the world other days things feel like they have shifted and changed so much, I have such a great loss of identity, Who I am now and Who I was before transplant has changed, I still feel like me, but I think peoples ideas of me have changed, I guess parts of me I always knew where there, weren't so obvious to them, I was just the sick girl with CF. But I'm not you know, I'm so much more. So I have changed in peoples minds and that has left me feeling very isolated, do I fit into the CF community? Am I normal? No I am neither, I fit into this very small minority of people, transplant patients, not even transplant patients really mostly cf transplant patients as I feel like it is only this small group of people that get me. Thing is I personally would quite happily fit into all the groups, but it feels like they just wont have me anymore.

So on days when I am feeling like everything has changed so much and I am not sure where I belong, Like Katniss says 'My name is Katniss Everdeen, I am 17 years old, my home is district 12.' I say to myself, 'my name is Kirstie Tancock, I am 22, I live with my husband Stuart, My dog Kia, in a small town called Honiton' Some times its just saying the simple things and not let all the complicated stuff define me. But instead of focusing on the stables in my life. My husband, my dog. Because everything else is so changeable. Transplant as much as I knew it wasn't a cure, I hoped it would provide me with normality, Normality is something I am never able to reach, I don't fit into a box.

Have you ever wondered where you belong? The answer is in your loved ones arms, with a few simple stables. Stop trying to define yourself, stop trying to be so keen to fit in and belong, yes we as human beings need to connect to people with similar experiences and mind sets but this isn't us full stop. One part of me doesn't define me. I am so much more and so are you. Because really you can be who ever you want to be.

And you have just been Kirstie'd

So today, day 2 of the charity ball company Attack! Yes me fully armed with my mother went round business's of Exeter trying to sell company's a 'coporate table' basily a table of 10 discounted ot £450. The Key to an interesting business that makes me want to sell you tickets, 1. a intelligent, vibrant and on the ball receptionist 2. A bit of flash your cash, in other word make your company smart pretty its all about presentation 3. I know in the first 5second if your intrested, your tone is crap, your eyes aren't engaged.

These aren't just important for me selling you tickets there also key to why your business isn't doing as well as every one Else's on the road and let everyone know not to go there as other people obviously aren't.

We hit about 20 company's fully armed with the organiser that is my mother, she brought the file of intresting bits of paper, We had ECMO pic, A letter of information on whys, hows, wheres and A ball poster. Then there was me, hitting the facts out, telling the story and engaging where ever I could.

Its hard running a Ball especially in the financial climate, but without the events like this Charity's would be now where.

So here I am trying to sell to you. Do you believe in organ donation? Do you enjoy a good party? Like to dress up? Well what are you waiting for? Its time to buy you ticket now!! You may be thinking its a awful lot of money, but for what you get is it really?



Its going to be an amazing night and will end National Transplant Week. Please support me, support Organ donation. If you've been reading this blog surely you know by know how important it is, if not well I don't think you've been paying attention so I will just have to shout louder!
To buys a Ticket email me on kirstiemills@hotmail.co.uk

Money for tickets need to be in buy the end of May.
Please listen out for me on heart radio tommorrow morning talking about ODR.

I would also like to say if you are a transplant patient in the Exeter area and would like to get involved in the ball or other projects I have going please email me on kirstiet@lltgl.org.uk I am looking to build a strong team to help make the south west count when it comes to ODR.