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.

Advocates weekend

Ok so this week I had to get a cough swab in to see if I was still growing pseudo, the reason? The Advocates weekend. This is an event I got told about just after my transplant, I was told if I decided to become a advocate from ambassador of Live Life then Give Life then I would go to the advocates weekend. So as an advocate I started to look forward to the event. Meeting lots of people I had talked to online, many I had received advice from and also who I looked to for inspiration when raising awareness.

Friday was the day I was suppose to head to London, but my sample results hadn't come back. 3pm came and I received a text all clear! I couldn't actually believe it. I was convinced It was going to be pseudo.

I headed home from the gym with Stu and started the manic pack to leave for Emily's chief exec of LLTGL as we would head for the hotel the next morning.

The weekend, well It entailed lots of talks from the trustees of the Charity, discussions on ideas, what we as advocates should do and how the trustees can help us. We also discussed up and coming events and individual projects we have, such as my cycle ride and the Charity ball. Please email me on kirstiemills@hotmail.co.uk for ticket info. There was discussions on what we were putting money into as a Charity such as the perfusion machine, speakers project and Robyns rainbow. Do you know you could nominate anyone for a Robyn's rainbow who is involved in transplant and having a tough time. I received one when I was waiting for my transplant nominated by another CFer waiting Sharee Mcphail. I'm glad to say she is also post transplant now and received hers around the same time as me. A Robyn rainbows is a balloon with the intention of letting the person know you are thinking about them in there difficult time and hopefully make them smile. Maybe you know someone to nominate.

Also there was lots of laughs and giggles and we all had dinner together, still the main topic being organ donation.

The weekend was intense, Lots of information to process and ideas to thing about. I feel like I have had the fuel injection I needed! I am ready to go, hurricane Kirstie Is back. I'm ready to create a Storm!

What Iv been up to

Its been a while since I blogged, so I thought I would come and tell everyone what Iv been up to.

My lungs are on there way back to best. My lung function in CF clinic was 98% 101% the figures are slightly higher on there machine so I'm not quite back best but pretty damn good. I feel pretty good health wise although I still get odd wheezy patches, so I know the fungus is still lurking around, trying to P me off but not succeeding.

I have been getting back to the gym the last week and have to say, I have been pretty miserable without it. I've found motivation hard, but as soon as I got back in there I realised what I was missing and how much better I felt for going. Its a therapy to me. It makes me feel happy. If I'm stressed a good work out does the trick.

I've had problems with magnesium and had to have a infusion for a day, pretty annoying as it was on my day off and I spent the whole six hours in the hospital.

Other things Iv been doing, well I'm getting into doing nails for fun. I like doing funky manicures and nail art. I find it really therapeutic, Its something you kind off switch your brain off to everything else and have to concentrate on the one specific task. Here's a few pic's.

Other than that, Iv been working and had some lovely days off, I went rock climbing with Stu and the twinners, The twinners are SAM and Simon Holmes, there both twins and Simon was Stu's best man at our wedding. We had a great time messing around. We then went to woodbury and I went to the gym while they played golf and then we all met in the swimming pool and did silly things like trying to swim the full length of the pool under water. I was a meter off with a dolphin swim, I can only do a dolphin swim as i need to hold me nose. The boys could all do it on a normal but could barely get half way on a dolphin swim. So I'm going with I won ;-)

Then me and Stu went round to my best friends Julie's and had dinner with her and her partner Sam who Iv also known for years. We had such a good time and ended up staying late and having a drink and getting a taxi back. I think Stu and Sam are going to have a bromance, they get on so well and its scary how similar they are! Julie and Sam have been together a few more months then me and Stu but we haven't done alot as couples together, defiantly something we will do more of!

I also went to a pole Jam last Saturday and then held my own on the Sunday here's a few pics.

Then today me and Julie walked Kia down the beach and in the woods and played around with instagram!! I'm going to see it I can link intagram with my blog like I have twitter, but otherwise theres lots of fun pics of us on there!

There been a few other things going on, things that have made me very sad, My friend Alan who I blogged about before Here passed away. He never made it to America. Alan was a huge support for me when i was being listed and he was going through the same process, unfortunately it never worked out for Alan and he had come to terms with fact that with out one he was going to die. It seems very cruel that it should work out for me and not him. Alan was a great support to many with CF and will be greatly missed.

Also I just want to link you to this blog, another friend of mine, if you read its all self explanatory Ellis.

Iv been stuggling with some other stuff, but things im not ready to share with the everyone, somethings have to be kept private until I am ready.

Well next week I'm only working two days!! The rest I'm having off with my hubby, I'm hoping we get to do lots of fun stuff!