Monday, 7 November 2016

Final chapter

Every song has a ending, every book has to close, my story is coming to its finale and I'm here to tell you all just how beautiful it all was.


I'm 27 a age I never thought I would get to see but due to miracles from medical practitioners and my donors I have been kept here to enjoy what have been the best years of my life, experiencing things I could barely of dreamt of. I'm so grateful for every extra second Iv had with my family, friends and all the amazing people I met and those I got to teach and lives I got to influence, mostly I hope for the better.


I always wanted to make a difference with my life, leave a positive impact on the earth. I like to think Iv done that, whether with my Cystic fibrosis awareness, organ donation campaigning or the more simple ways of teaching my students love and self worth. This in the last year has been one of the most rewarding things to see my students grow as individuals and give them a space to be free from all the problems we each carry with us day to day. A small thing but I hope it left my mark.


I decided it was time to tell everyone my prognosis as it were because it has become a burden to hear, so your better then? And I hope your back on your feet soon? All ment with love and hope but I then feel I'm being false in my replies. The truth is my lungs are severely damaged, I do have BOS a type of chronic rejection but I do also have this RAS which I have spoken of. My lungs are shrinking upwards and squashing the upper lobes of my lungs. I have recovered from the pneumonia as best I can although the infection still lingers and this will be likely to linger due to patterns of rejection and infection being closely linked. All the other problems over the last few months, acute rejection and organised pneumonia can become part and parcel when you have a diagnosis of chronic rejection. Although to clarify if you have infection, acute rejection or organised pneumonia it does not in anyway mean you have or will get chronic rejection! I must emphasis this!


Why have I had this fast acting type of chronic rejection twice? I don't know. Statistically I just fit in  with all the other statistics. 50% of people make it to 5 years, I am of the percentage that didn't or if you add them together I did. Either way I'm just incredibly grateful for what I have had and I want everyone to remember that going into transplant. It's no garuntee but whatever you get from it is so much better then before if you throw everything you can and enjoy every second. 


I feel everyone is going to ask the question about 3rd transplant as they have and in part I have ignored it but I will answer this's I am not well enough to be considered for a 3rd transplant. It's as simple as that and do you know what I'm ok with that, of course I would always want more time but I have discussed this with the professionals and there has to be a point when you trust them to make the best decision for you and I whole heartedly do.


So I am hoping to go home at the end of this week. I will have home health care, mainly because I want my family to be allowed freedom to still live there lives and be there as my family and friends not constant care although they will obviously be involved. I will also be connected with the hospice. Time wise I have 'months' this could be 10 this could be 2 but I want to remain as strong as possible so in the long run the time I do have is better quality. I will be enjoying time with my family and friends making memory's. 


For all those who know me the way I have been dealing with this in private is how I would like to carry on dealing with it openly. It can be uncomfortable for some but it is the 'real' me as much as you will ever see. That is black humour, joking inappropriately, talking openly, my Funeral is Almost planned to a T and I will carry on doing This. In all honesty it's going to be such a event I'm a little sad I can't watch (see this is me slipping a little of that humour in, getting you all prepared) 


Lastly, my aim was to raise £10k in the next year for Harefield hospital. The very place that have done so much to keep me alive, give me a amazing quality of life and in the last few weeks shown me more then ever why they are the lead cardio thoracic transplant centre in the country. They have supported me through every part of this journey and I hope I can reach my target to help them do this work for others.


I am bringing out a t-shirt/vest/top to help raise funds but in the mean time if you would like to donate here's the link once again the total from various people raising money is 


£3924.79

http://uk.virginmoneygiving.com/KirstieTancock1


Thank you to everyone for your on going support, I will update as and when but ask that you also respect my families privacy and my own if we do not. As we have always known this day would come this doesn't always make things easier. 



79 comments:

  1. Love you Kirstie. You will forever inspire me to be braver x

    You are the bravest! You are beautiful xxx

    M x

    ReplyDelete
    Replies
    1. My one year old is born with this this story has really touched me 😣😣

      Delete
    2. You were a lovely young girl(Bramble Ward) who was going to be a star, you have achieved that and more. An inspiration to everyone with CF.

      Delete
  2. Sending much love to you all πŸ’•

    ReplyDelete
  3. You have inspired me to focus on what I have and not worry about what might happen in the future...to live a full life every day. Sending you loving thoughts as you go through this difficult journey ��

    ReplyDelete
  4. Sending much love to you all πŸ’•

    ReplyDelete
  5. You have inspired me to live every day to the full and to not dwell on the things that can't be changed. Sending you all my love for this difficult journey ahead πŸ’œπŸ’œπŸ’œπŸ’œ

    ReplyDelete
  6. Beautifully written as always Kirstie. Brought a tear to my eye reading this. I am in awe of what you do and the attitude you have to life. I don't have CF but think of you when I want to give up because I am once again in hospital or intensive care- you have the can do attitude and made so many things possible. You being you is amazing. Just keep doing that!! X

    (Will look out for the tshirts or vests- love a t shirt and even more when it's for a fantastic cause x)

    ReplyDelete
  7. You have become so inspirational to so many people Kirstie and your family and friends must all be so proud. The memories you will leave them with are going to be such beautiful ones along with the sad and I know you will keep on making them for as long as you can. Keep that smile on your face my darling girl but cry when you need to. You have packed so much into your life and made so much of it. Just remember how many people love you. Sending warm hugs and so much love your way xxxx

    ReplyDelete
  8. You have been an inspiration to a lot of people,sending you all my love and wishes x

    ReplyDelete
  9. Wow. I don't really know you, but I am glad to sort of know you - because you are inspirational.
    God bless you Kirstie!
    Harry Pridmore

    ReplyDelete
  10. Kirsty you are such an inspiration. Sending love to you and your family. ❤ xx

    ReplyDelete
  11. Kirsty you are such an inspiration. Sending love to you and your family. ❤ xx

    ReplyDelete
  12. Kirsty you are such an inspiration. Sending love to you and your family. ❤ xx

    ReplyDelete
  13. I've read your posts and followed your journey but have never been able to leave a comment, thanks fb. I feel so fortunate to be 46 and have this disease and still have my own, be it crappy, lungs. You have lived every day to the fullest and done a bloody good job Hunny. I hope that when my number is up I have as much grace as you have, maybe not when my chosen songs are sympathy for the devil and burn by the Cure, I think we all have that sick humour. I can say it's been a pleasure and heartbreak with you in your journey. Maybe we'll finally meet upstairs, if I'm allowed in. God bless. Sharon xx

    ReplyDelete
  14. You are an absolute star and have always given me hope for the future for my son with cf. ❤❤❤

    ReplyDelete
  15. Thinking of you, you are an inspiration to many, sending love you and your family xxxxxx

    ReplyDelete
  16. Kirstie you are such an inspiration to so many. Please keep us all posted with your t-shirt/vest top. Will try and get all my friends to purchase one to hopefully help you smash your total. Love seeing all your photos of your gorgeous smiling face and love your dark sense of humour! Lots of love to you and your family xxx

    ReplyDelete
  17. You have made a huge imprint into so many lives and are the definitiion of 'Inspirational', your 'honest' blogs have really made me stop and think. (Pre-tx) about what matters! Thank you for sharing and making it all a little less scary and taboo! I truly hope you remain strong and well to enjoy every second of the memories you have yet to make! Sending huge love to you and your Family and Friends, Wow, I bet they are proud! Xxxx

    ReplyDelete
  18. Sorry, my english is not very good, I leave in QuΓ©bec , Canada, but I want to tell you that you are an inspiration for a lot of people around the world, send you hugs and love XX
    Nicole Boulet

    ReplyDelete
  19. A job well done my friend! We love you! You have taught us so much. You have shared everything with us. You are the real deal. Death is not the end Kirsty. You have a new journey ahead of you! It will be beautiful beyond words. Have no fear! We will meet you on the other side!

    ReplyDelete
  20. Sorry but my english is not very good, I leave in Quebec, Canada, And I follow you since few years.
    I want you to know that you are an inspiration for peoples around the world. I send you hugs and love XX
    Nicole

    ReplyDelete
  21. So sorry to hear this, I hope your last few months are filled with love and joy. Thinking of you!

    ReplyDelete
  22. Kirstie, you have inspired me to keep fighting my own end stage lung disease. I frequently go through the same emotions as you in facing the final chapter. Before I knew you, I said I would never go for a lung transplant. I've now changed my mind be ause of you and realized that life is worth fighting for even if it's just for an extra few years. I pray that the next chapter of your life will be the best ever and that you and your family find peace in this very sad and difficult situation. I hope you allow yourself to dance, laugh and make special memories. Sending love and hugs. ❤️xx

    ReplyDelete
  23. Ever since my daughter was diagnosed with CF, I have followed you on TV appearances and on Facebook as your an absolute inspiration to me.
    If my daughter grows up to be half as brave as you then ill be one very proud father. I've always admired CF sufferers for there bravery and determination and your one of the toughest.
    When my daughters old enough to understand CF, you'll be one of the people that I shall tell her about to help to inspire her through life. xxx

    ReplyDelete
  24. Wow kirstie what a blog. It must've took you a lot to write tthis but you continue to inspire others with your humour at such a time. You are a fighter and will fight until the end. My prays and thoughts you with you and your family at this time. Whenever the time comes for you to gain your angel wings we not only have lost an angel but heaven will gain one. Lots of love Ashley x

    ReplyDelete
  25. I am very grateful that you are part of my life. A virtual part. But a permanent part. Which always brings me to positive thinking about life.

    "Live life, give life" - that is what you have given on many levels to very many people. Thank you for the time you are here with us.

    It is, as you write, "Every song has a ending, every book has to close."

    Many hugs, my thoughts are with you, your husband and your family. xxx

    ReplyDelete
  26. Kristie you are such an inspiration to all and I know family and friends are so proud of you and all You have done, we have so many friends in common and I often ask how you are,although I've never had to pleasure of meeting you I will always remember you enjoy every moment of making special memories with friends and family Hun ��

    ReplyDelete
  27. Bloody hell girl. The strength you have shown over the years and continue to show now has me beat. We all have our battles but you have truly shown us how to be a superhero. All the hugs in the world to you, your friends and family.

    ReplyDelete
  28. Thank you for sharing your journey. Thank you for being so inspirational and showing what can be done if you really are determined enough. Thank you for being so brave and continuing to show you can fight on despite many setback. Thank you for being so gorgeous and interesting and funny and smart. Much love to you and your family xx

    ReplyDelete
  29. I'm so glad that I came to pole, I met some fab people and you as always were smiling and happy! They where a fantastic few years and I'm sure that everyone you have met through pole feels the same!
    You are an inspiration to a lot of people and I'm sure you will make that target if not raise more!
    I hope that your time is spend with the ones you love and that as always you make the most of enjoying life! Katie ❤️❤️❤️❤️

    ReplyDelete
  30. Wow!! Brave lady.. true ..real..but savage. Bless you..all of your family and loved ones..an emotional read but inspiring one !)

    ReplyDelete
  31. Bless your soul ..family and loved one. You are so brave..true.. real and strong. Savage circumstances for yourself but be of courage that you have helped so many. Very emotional read. Xx

    ReplyDelete
  32. Wow!! Brave lady.. true ..real..but savage. Bless you..all of your family and loved ones..an emotional read but inspiring one !)

    ReplyDelete
  33. Sending so much love to you all, I don't live in England I'm in Australia I have followed you for years, your an inspiration to us all.

    ReplyDelete
  34. Kirsty, you're such an inspiration to so many. This is not the end, your journey is only just beginning. Such a brave and strong woman. You have my utmost respect and love. ��

    ReplyDelete
  35. Hi Kirstie, i have been following your story, i also knew katie gammon as i am friends with her mum... This is a horrible disease, i wish you all the best with the time you have left.... take care
    Sharon

    ReplyDelete
  36. Good Luck Kirsty. A very brave, powerful young woman.Amanda

    ReplyDelete
  37. We'll love you always, and will never forget what you did for us, you incredible lady, you should be very proudπŸ’œ

    ReplyDelete
  38. We've never met but I've been following your journey... I wanted to write to you so many times but never knew how to put my thoughts and feelings into words... well, now I'm typing through tears... you kept me going so many times... 'you gave me a kick in the a*se and told me to stop moaning and carry on'... you showed me what it means to be brave, happy and positive... you are one incredible girl... thank you for everything you are doing for us xxxx

    ReplyDelete
  39. We've never met but I've been following your journey... I wanted to write to you so many times but never knew how to put my thoughts and feelings into words... well, now I'm typing through tears... you kept me going so many times... 'you gave me a kick in the a*se and told me to stop moaning and carry on'... you showed me what it means to be brave, happy and positive... you are one incredible girl... thank you for everything you are doing for us xxxx

    ReplyDelete
  40. We've never met but I've been following your journey... I wanted to write to you so many times but never knew how to put my thoughts and feelings into words... well, now I'm typing through tears... you kept me going so many times... 'you gave me a kick in the a*se and told me to stop moaning and carry on'... you showed me what it means to be brave, happy and positive... you are one incredible girl... thank you for everything you are doing for us xxxx

    ReplyDelete
  41. You are such an inspiration Kirstie and the world is a lot wiser and happier for having you with us.
    You live everyday to the fullest and your attitude to life and wanting to live so much is so heartwarming ♥️
    I don't know you personally but I am so proud of the strong lady you have become and continue to be ��
    I wish you nothing but the very best Kirstie, I am thinking of you and send hugs and the deepest love ❤️
    Susan xXx.

    ReplyDelete
  42. Oh Kirstie, I am so so sorry and saddened by this, although I suspected it might be coming. I hope you have many many months to come to make those lovely memories. Your positivity amazes me. Much love x

    ReplyDelete
  43. You are such an inspiration Kirstie and the world is a lot wiser and happier for having you with us.
    You live everyday to its fullest and your attitude to life and wanting to live so much is so heartwarming ♥️
    I don't know you personally but I am so proud of the strong lady you have become and continue to be 😊
    I wish you nothing but the best Kirstie, I am thinking of you and send you hugs and the deepest love
    Susan xXx.

    ReplyDelete
  44. Hi Kirsty. We met briefly once when u were training at Taylors & my friend Michalina & I were scared to join in cos u were so awesome but u were so lovely & told her that we shouldn't compare ourselves to others. We saw u compete at Pole Theatre & ur dance was so beautiful & touching; you are truly an inspiration xxx

    ReplyDelete
  45. Hi Kirsty. We met very briefly once when u were training at Taylors & my friend Michalina & I were scared to train cos u were so awesome but u were lovely & told my friend we shouldn't compare ourselves to other people. We saw u compete at Pole Theatre- ur dance was beautiful & touching; you are such an inspiration xxx

    ReplyDelete
  46. You are such am amazing woman and a massive inspiration to me and many other people. Wishing you and your family all the best for the future ahead of you all xx

    ReplyDelete
  47. You are an amazing woman and a inspiration to me and many other people. Wishing you and your family all the best for the future ahead.
    Siobhan

    ReplyDelete
  48. Thank you is what I will say. Thank you for teaching me about spoons for giving me a small insite in to CF. Now time to kick butt complete that bucket list and save the world. Your brave strong and I wish I could bottle it. Katie Noonan

    ReplyDelete
  49. You are a beautiful soul and I'm so happy I had the honour of watching you perform. Your performance brought tears to my eyes. We don't know each other well but I feel honoured that our paths crossed on this little blue dot in space xxx

    ReplyDelete
  50. Jesus loves you and he wants you to take home, it is his decision when it will happen. Each of us will have this point of time in our lives. Some sooner and same later. And we can decide, if we want to meet him I'm heaven. But you have to meet the decision. I have been following your story a long time and I feel so sad now reading these news. You are such a strong and positive person! And I am sure that you have helped so many people with your story! God bless you!

    ReplyDelete
  51. Jesus loves you and it is his decision when he will take you home. For some of us it comes very quickly, but other ones are lucky to prepare themselves. The only conditions ist that you have to decide whether you want to meet and stay with him!
    I have been following you a long time and I love your positive thinking and energy. I am sure that you have helped so many people by sharing your life story. I wish you and your family all the best in this hard time!

    ReplyDelete
  52. Dear Kristie I wish the best final chapter, time and strong to make all your dreams come true, love and happy memories. I wish you a "happy" end, without pain, without anxiety.
    You inspired me, you gave me motivation to live enjoying every second, you gave me reason to be happy and thankful with my life.
    Thank you for all.
    Hugs from Ecuador.

    ReplyDelete
  53. I don't know you personally but I've followed you on Facebook for 5 years. I've read every blog post, every status, lots of the comments, and even though I don't know you I still feel proud to have known "of" you - if that makes sense. You have been, and continue to be, a complete inspiration, and I hope that the months ahead are full of love, joy and laughter. You deserve all the love in the world, & my thoughts are with you and your family xxxx

    ReplyDelete
  54. Life is not about how much it last, it is about what you make out of it... You have done a lot more for other people in your 27 years than most of people will do in 100 years...
    Thank you for all your dedication and love... The world needs more people like you!!!
    As we say in my country "Pura Vida" (it is a way to say thank you, it means Pure Live and that's what you have had)
    Hugs from Costa Rica

    ReplyDelete
  55. Kristie,
    I want to thank you. Your documentary changed my life. And I will always be greatful. You taught me alot...to never give up and not to let CF define who I am. You lead by example and are someone I truly admire. When things get tough I think of you and feel inspired to stay positive, live life to its fullest and to never give up. Thank you for changing my life.
    I will pray for you and your family. I hope you are able to cross everything from your bucket list and more. Sending much love and many hugs from Louisiana.

    ReplyDelete
  56. I have never met you but you are the strongest person I have followed my entire life of 55 years, and I know some amazing people here in the States. I feel the Angels have surrounded your life and your family's and you are in the best hands possible. Prayers and thoughts will be with you forever, Kirsten, as you have touched my life and many others. If I could send a pic of me sticking my tongue out back at you I would, but cancer has made me look far scarier than you :). Live in Peace lil darling!! From Illinois.

    ReplyDelete
  57. I've been recently told I have 6 months to a year and placed on hospice . I don't qualify for a transplant and i also have cf. I'd really like someone to talk to and we could be support for each other even though I'm in USA. Please email me skatersurfchic23@gmail.com. I'll hope to hear from you. Stay strong beautiful lady.

    ReplyDelete
  58. You don't know me, however I have followed your story ever since I saw your documentary on the Telly. I was sad to read this blog post as I was hoping you would pull through for many more years, but I guess it wasn't meant to be. I know you are scared as anyone would be, but take comfort in knowing that we all will die one day, some sooner than others, but all none-the-less. There has to be a point to all of this, life I mean. I have to believe we all will go to a better place where friends and family will go too when it is their time. I have to believe this is the case, otherwise what's the point? It does not make sense for it to be any other way. When I go that is what I will be thinking about, the better place, I know it exist. I has to. I hope your transition goes smoothly and without too much suffering. I know you will reach that place and in time your friends and family will follow to be reunited with you again. You have friends that are already there to greet you when you arrive. Take care and remember death is just the beginning.

    ReplyDelete
  59. I love you Kirstie. Thank You very much for being You and for openly sharing your life. You will be on a different journey, but I am sure we will all still be connected. I will be thinking of you. I will miss your inspiring, raw and insightful writing. I came across your documentary a few years ago before I was diagnosed with a chronic illness myself, and you have helped me in my darkest darkest days even though you have never met or spoken to me directly... But your words and writings spoke deeply and directly to my soul. I love you. Thank you and sending you the biggest, tightest virtual hug I could ever give (a lot of imagination and visualisation required here :) ) take care dear. Xxx

    ReplyDelete
  60. This comment has been removed by the author.

    ReplyDelete
  61. Kirstie, you don't know me but I have followed your blog. I was so sad to read this, you are truly an inspirational young woman. I hope you can fill your final chapter with as many beautiful memories as you can. Stay strong, thinking of you, your husband, mum and family, with lots of love. πŸ’œ

    ReplyDelete
  62. Kirstie your the most Amazing lady I know. Im so very sorry to read this.you have achieved more in the time you have had than alot of 80/90 year olds get to achieve. Were all trying to think of the right words to say to you kirstie when all we can really say is were all so Sorry this is a tragedy. Your to Beautiful to ambitious to die. I have send all the love in the world to you and your family sweetheart xxxx

    ReplyDelete
  63. I am thinking of your sweet girl <3

    ReplyDelete
  64. You are a true inspiration to us all. It was great meeting you at the Henfest in Wimborne this year.
    Kindest regards and wishes, take care.

    ReplyDelete
  65. My heart goes out to you Kirstie you are a wonderful young lady, God Bless you and keep you always. You have been my guiding light since I first heard your name and started following your trials and tribulations. I will be praying for a miracle. Lots of love, Kelvin. xxx

    ReplyDelete
  66. Thankyou for sharing your feelings and keeping us up to date with where you are. You are an inspiration to us all and I hope your final chapter is filled with treasured and happy memories shared with the ones you love. Big hugs to you.with love. X x x

    ReplyDelete
  67. Hi Kirstie, you don't know me, but a friend of mine Alex who also has CF showed me your blog. I just wanted to wish you plenty of special times with your family and friends and to say how inspirational it has been to read your words. Love and peace x

    ReplyDelete
  68. Kirstie you are such an inspirational person. I am a mother of an 18 yr old with CF and we both have your sense of humour.
    Love to you xx

    ReplyDelete
  69. Kirstie you are such an inspirational person. I am a mother of an 18 yr old with CF and we both have your sense of humour.
    Love to you xx

    ReplyDelete
  70. Heart-breaking as this blog has been to read it is at the same time a testament to the human spirit and inspirational stuff. I have made a small donation and signed up as an organ donor On-line....It took all of 3 minutes to do...I'm sure you will smash your target and wish you all the best...:-)

    ReplyDelete
  71. Wow, you are an inspiration! I have No more words, just sending love & strength xx

    ReplyDelete
  72. You remain amazing till the end, I will remember you for everything you have achieved, for helping me before I face this journey with a close friend, I hope you can find comfort. May the end be as kind and gentle as it can. The world will miss you so much xxxx

    ReplyDelete
  73. I know how tough a life with cf can be, but yours has been so very much worse than mine. You've fought hard for a long time and I'm so sorry to read how things are for you now. I hope our donation helps towards your target for RBH. X.

    ReplyDelete
  74. Kristie, your story has touched me to my core. My son's sitter has CF, and her type affects her pancreas moreso than her lungs. Her suffering has been great, and they have reached a point where they can't really give her any answers or treat her pain. Throughout that she has remained, like you, very upbeat and strong. I have come to realize that God truly does give His toughest battles to his strongest warriors. Your fight, your journey, your story are not in vain; your reach is far further than you realize. I am so glad that you will be home with your loved ones and making memories, sharing each others joys and triumphs and living your beautiful life to its fullest. I have no doubt that you will do just that. Thank you for sharing your deeply personal struggle with all of us and allowing us to pray for and with you. I am profoundly humbled by your grace. You truly are a shining star. XO from California <3

    ReplyDelete
  75. You are beautiful. I'm so sorry to see you struggle with this, from one pole sister to another. Thank you for sharing your story.

    ReplyDelete