Something iv been thinking about is when do you go back to work post transplant? Especially double lung transplant?
Well my first transplant is as keen to get back to work, but then I went Back to fitness pole dancing 3 months post transplant it was at my leisure, I could choose when and how often I taught. I enjoyed it and it was enough to keep me occupied, but not stress me out and over work. I think they were both important because I was still recovering mentally and physically after the trauma of ecmo and transplant. I'm happy I did that.
This time I was forced back to work as I wasn't entitled to incapacity/esa benefit and with being homeless because our rented house was full of mould (not good for lung transplant, especially newly transplanted lungs) we had to put our dream, buying a house, into fast forward. Living with my nan and then in my mums annex when she was able to move into her house as she had just bought and was renovating. Therefore I had to go back to work to be able to afford rent and bills. So exactly 3 months post this transplant, despite being heavily depressed and anxious which I was seeing the phycologist for, I went back to work.
Let me explain a little about my mind set at the time, I was anxious because as you may know I'm still at high risk of chronic rejection, I was trying to get over another dance with death, saying goodbye to my family and friends, grieving for my donor whilst feeling forever grateful to them and dealing with the confusion that I had said goodbye to the lungs that had saved my life although my connection with my first donor is always in my heart. I didn't know if I'd recover or how well I'de recover. My doctor suggested I didn't go back to work yet for medical and mental recovery, feeling maybe. The last two years had caught up with me.
I didn't want to go back, getting out of bed on some days was hard, I was still extremely physically tired and having various other recovering issues i went back and It was hard at first I'm not going to lie. Sometimes I wish I had had 6 months to recover but being back at work gave my Mind other things to think about and then buying our home and being busy with that to, there wasn't time to think and that was just what I needed.
So I guess when people ask me, when should I return to work? It's different for everyone but most important thing is when is right for you and in my opinion whether you go back to work or not having something to keep your mind from Everything can be really good, but remember all our thoughts and fears have to be dealt with in the end. The phycologist gave me a specific time and day I could think about it all deal with as much of it then and then lock it away till the next week so I could function as a human being and be happy.
- Posted using BlogPress from my iPad
Monday, 6 January 2014
Thursday, 2 January 2014
A years review
Here's an article I wrote for the express and echo.
http://www.exeterexpressandecho.co.uk/Kirsite-Tancock-year-review/story-20383633-detail/story.html
AT THE start of this year, I would never have thought it would turn out the way it did.
I set aside my goals for the year. Put together 10 charity hospital packs to go to chronically ill people, buy a house and concentrate on my career and what I wanted to do now I had settled in to life with new lungs. I was working part time at Next, teaching fitness pole dancing and in the best shape of my life.
But things didn’t go to plan, my life did a 360 and I was back at square one.
After a belated honeymoon, I came back to England knowing my health was declining. I was admitted to hospital and diagnosed with chronic rejection.
Nothing could have prepared me for the fight I would have to face and the pain I would endure.
Back on oxygen and non invasive ventilators, I knew time was running out quickly.
By the end of July I was told my only option, a second double lung transplant, was not a possibility. Around me my world was falling apart and I tried to act dignified in the face of my death, knowing my family would be the ones left with the pain of it in the end.
I grieved for the dreams I would never live – my house, my career – but asked my mum and husband Stuart to finish one of my goals for me, the hospital packs, while I tried to do as much as I could in and out of my exhausted haze.
In the corridors of the hospital conversations were being had, phone calls made – my team still working very hard to give me another chance.
The next day I was told I would go back on the list but with little time left and high antibodies the chances seemed impossible. The following day they were proved otherwise – I had a set of lungs. I went down to surgery the next day and received my second double lung transplant.
I could never have imagined these events at the beginning of the year, but even though my life took an unexpected turn still my dreams and goals are coming true.
Recovering well, I bought my first house with my husband Stu, we have renovated and decorated and now have a home; a place to live, love and to enjoy our lives together.
I received an award from the Express and Echo for hero of the year showing me that my campaigning is being recognised and hopefully making a difference. I finished the hospital packs and they were sent out to 10 deserving people.
I was able to give them a small piece of happiness in their dark times and I’m truly humbled that I could do that.
One of them was a great friend and fellow advocate for the charity I work for, he had supported me through my rejection as he was also in rejection.
Sadly, he passed away before he received the pack. In my life this is a common occurrence, saying goodbye to friends too young to die, who have suffered greatly in their lives.
So although my life continues and I am truly blessed, this year has shown me that my campaigning is still vitally important as although I was lucky still my friends are dying around me.
I look forward into the new year, hoping 2014 may bring a dramatic difference to people waiting on the transplant list. I’m starting to make new goals and hoping that 2014 will be the year I can make my way into a career that fulfils my ambition and lust for life.
All thanks to a stranger I will never know, a person I can never thank. But I send my thanks up to heaven for them and for my first donor.
Read more: http://www.exeterexpressandecho.co.uk/Kirsite-Tancock-year-review/story-20383633-detail/story.html#ixzz2pHK3cl9m
- Posted using BlogPress from my iPad
http://www.exeterexpressandecho.co.uk/Kirsite-Tancock-year-review/story-20383633-detail/story.html
AT THE start of this year, I would never have thought it would turn out the way it did.
I set aside my goals for the year. Put together 10 charity hospital packs to go to chronically ill people, buy a house and concentrate on my career and what I wanted to do now I had settled in to life with new lungs. I was working part time at Next, teaching fitness pole dancing and in the best shape of my life.
But things didn’t go to plan, my life did a 360 and I was back at square one.
After a belated honeymoon, I came back to England knowing my health was declining. I was admitted to hospital and diagnosed with chronic rejection.
Nothing could have prepared me for the fight I would have to face and the pain I would endure.
Back on oxygen and non invasive ventilators, I knew time was running out quickly.
By the end of July I was told my only option, a second double lung transplant, was not a possibility. Around me my world was falling apart and I tried to act dignified in the face of my death, knowing my family would be the ones left with the pain of it in the end.
I grieved for the dreams I would never live – my house, my career – but asked my mum and husband Stuart to finish one of my goals for me, the hospital packs, while I tried to do as much as I could in and out of my exhausted haze.
In the corridors of the hospital conversations were being had, phone calls made – my team still working very hard to give me another chance.
The next day I was told I would go back on the list but with little time left and high antibodies the chances seemed impossible. The following day they were proved otherwise – I had a set of lungs. I went down to surgery the next day and received my second double lung transplant.
I could never have imagined these events at the beginning of the year, but even though my life took an unexpected turn still my dreams and goals are coming true.
Recovering well, I bought my first house with my husband Stu, we have renovated and decorated and now have a home; a place to live, love and to enjoy our lives together.
I received an award from the Express and Echo for hero of the year showing me that my campaigning is being recognised and hopefully making a difference. I finished the hospital packs and they were sent out to 10 deserving people.
I was able to give them a small piece of happiness in their dark times and I’m truly humbled that I could do that.
One of them was a great friend and fellow advocate for the charity I work for, he had supported me through my rejection as he was also in rejection.
Sadly, he passed away before he received the pack. In my life this is a common occurrence, saying goodbye to friends too young to die, who have suffered greatly in their lives.
So although my life continues and I am truly blessed, this year has shown me that my campaigning is still vitally important as although I was lucky still my friends are dying around me.
I look forward into the new year, hoping 2014 may bring a dramatic difference to people waiting on the transplant list. I’m starting to make new goals and hoping that 2014 will be the year I can make my way into a career that fulfils my ambition and lust for life.
All thanks to a stranger I will never know, a person I can never thank. But I send my thanks up to heaven for them and for my first donor.
Read more: http://www.exeterexpressandecho.co.uk/Kirsite-Tancock-year-review/story-20383633-detail/story.html#ixzz2pHK3cl9m
- Posted using BlogPress from my iPad
Friday, 20 December 2013
Hospital packs and a update
Iv already written this blog so annoyed it's not here anymore!
The hospital packs I made were sent out last Friday. Iv had lots of feed back from the recipients so here's a few picks and comments from the winners.
The above pics are from Robyn Toseland here's what she said about he packs.
Today the postman delivered the most wonderful gift, & I am completely & utterly overwhelmed!
The lovely Kirstie Tancock has cystic fibrosis, & recently had her second double lung transplant. She is absolutely amazing, & even though she is still recovering from her most recent lung transplant - she continues to do all that she can to put a smile on the faces of others suffering chronic illnesses.
Whilst I was recently in hospital, Kirstie asked people to nominate those who may benefit from a 'hospital survival pack', which she has spent months putting together with help from local businesses. Little did I know that the lovely Angie Bruns, nominated me for one!
At the end of last month, I was discharged after 17 days in hospital, & came home to find a message from Kirstie to say that I had been nominated for a survival pack, & that I had won one!
I was so shocked & couldn't believe it - & didn't actually believe it until it arrived today! I'm completely overwhelmed & feel so incredibly lucky! I opened the box with tear filled eyes! I literally can't believe that someone felt I was worthy of such a wonderful gift! I really don't feel that I deserve it, but I am truly forever grateful! I have the biggest smile on my face today, & can't stop looking at my wonderful goodies! I'm currently wrapped in my gorgeously pink & fluffy blanket, & am absolutely loving every single thing! Even better, is that there are loads of pink things - which is totally amazing! There's lots of chocolate too, which always makes everything better!
I find it really hard to understand why someone thinks I'm worthy of something so lovely - something which will provide a little light, during the darkness on super poorly days! I can never understand why people sometimes say that I'm "brave", "amazing" an "inspiration", because in all honestly, I feel that I haven't handled my health issues in a way that I should have - there are times where I just didn't know what to do with myself, or how to move forward. Crying into my pillow, thinking that it's all so unfair! I have my dark days, & sometimes wonder "why me?", but then I think, why not me!? I'm not anyone special, & my poorliness can't be helped. It will be, what it will be! It would be so easy to be angry with my body, but I actually think it's pretty incredible for getting me through two life-threatening events - a massive bilateral pulmonary embolism with substantial right heart impairment in 2008, & then in 2011, a retroperitoneal haemorrhage in which I lost six pints of blood. It is unfortunate that I continue to suffer the consequences following the damage that the blood clots did to my body & my heart - but I'm still counting my blessings! It's times like this that I realise how lucky I am, & how truly privileged I am to have so many wonderful people in my life! Feeling very special right now - I'm so grateful to you, Angie, for nominating me! I really do believe that "only in the darkness, can you see the stars!"
I literally can't thank you enough, Kirstie. Your kindness, compassion & determination to help others, is completely inspiring! I'm so overwhelmed & truly touched that you felt I was worthy of something so wonderful! A million pink thank you's to you, & to everyone that helped you put the amazing 'hospital survival pack' together. You've made me the happiest girlie! Your amazing survival packs will totally make poorly days a little happier! I'm now ready for anything that my health may throw at me, & can inject a little pink into every hospital stay! During my recent hospital admission, the nurses called me "pinky" & "pink princess", so everything in the pack lives up to my hospital nickname perfectly!
This is Gemma fearing with all her goodies.
Sadly one of the recipients didn't receive there pack. My friend Gerard who helped me thro chronic rejection and radiation passed away. He was a great friend and a fellow advocate at live life then give life. I couldn't help hi the way he helped me and I hoped the pack would help make him more comfortable in his last few weeks but it wasn't ment to be. I'm thinking of his family at this time and hoping he is breathing easy.
These packs have given some very ill people a small bit of happiness and I'm humbled that I could give that to them. The message of these packs is not only to make them feel happier in hospital, to bring them some luxuries and comfort. It was to let them know that in there darkest moment people are sending them love, thinking of them and hoping they get better. To let them know they are not alone.
I hope to do these packs again next year towards the end of the year. £1100 was raised for these packs, thank you to those amazing people who donated money and others who bought and sent items for them. Without you this wouldn't have been possible and I know that some of those people donated when I was extremely ill and I can tell you it kept me occupied in that time and made me happy knowing I was helping others. So from the bottom of my heart and from all those who received a pack thank you.
A little update on myself, I'm back at work in the admin department and doing over time on the shop floor. It was hard at first but iv settled in and feel happy now although at first I felt overwhelmed and not ready. Most evenings me and Stuart have been decorating our new house that we bought! My dream come true. We have ripped out carpets, painted and worked hard and now our house is our home. I feel so comfortable here, happy and relaxed. It's like it was ment to be my home. Were still doing stuff but have now moved in. It should be ready for Christmas. Here's a picture of the living room.
Also in November I won pride of Exeter hero of the year award here's a video of what winning ment to me.
http://www.exeterexpressandecho.co.uk/VIDEO-winning-means-Pride-Exeter-award-winners/story-20086591-detail/story.html
And finally a few photos I had done for some modelling back in October
Oh and a artical in the daily mail and daily star on me and Katie gammon.
http://www.dailymail.co.uk/health/article-2525174/Best-friends-dying-lung-disease-receive-life-saving-transplants-DAY.html
I will be blogging again soon x
- Posted using BlogPress from my iPad
The hospital packs I made were sent out last Friday. Iv had lots of feed back from the recipients so here's a few picks and comments from the winners.
The above pics are from Robyn Toseland here's what she said about he packs.
Today the postman delivered the most wonderful gift, & I am completely & utterly overwhelmed!
The lovely Kirstie Tancock has cystic fibrosis, & recently had her second double lung transplant. She is absolutely amazing, & even though she is still recovering from her most recent lung transplant - she continues to do all that she can to put a smile on the faces of others suffering chronic illnesses.
Whilst I was recently in hospital, Kirstie asked people to nominate those who may benefit from a 'hospital survival pack', which she has spent months putting together with help from local businesses. Little did I know that the lovely Angie Bruns, nominated me for one!
At the end of last month, I was discharged after 17 days in hospital, & came home to find a message from Kirstie to say that I had been nominated for a survival pack, & that I had won one!
I was so shocked & couldn't believe it - & didn't actually believe it until it arrived today! I'm completely overwhelmed & feel so incredibly lucky! I opened the box with tear filled eyes! I literally can't believe that someone felt I was worthy of such a wonderful gift! I really don't feel that I deserve it, but I am truly forever grateful! I have the biggest smile on my face today, & can't stop looking at my wonderful goodies! I'm currently wrapped in my gorgeously pink & fluffy blanket, & am absolutely loving every single thing! Even better, is that there are loads of pink things - which is totally amazing! There's lots of chocolate too, which always makes everything better!
I find it really hard to understand why someone thinks I'm worthy of something so lovely - something which will provide a little light, during the darkness on super poorly days! I can never understand why people sometimes say that I'm "brave", "amazing" an "inspiration", because in all honestly, I feel that I haven't handled my health issues in a way that I should have - there are times where I just didn't know what to do with myself, or how to move forward. Crying into my pillow, thinking that it's all so unfair! I have my dark days, & sometimes wonder "why me?", but then I think, why not me!? I'm not anyone special, & my poorliness can't be helped. It will be, what it will be! It would be so easy to be angry with my body, but I actually think it's pretty incredible for getting me through two life-threatening events - a massive bilateral pulmonary embolism with substantial right heart impairment in 2008, & then in 2011, a retroperitoneal haemorrhage in which I lost six pints of blood. It is unfortunate that I continue to suffer the consequences following the damage that the blood clots did to my body & my heart - but I'm still counting my blessings! It's times like this that I realise how lucky I am, & how truly privileged I am to have so many wonderful people in my life! Feeling very special right now - I'm so grateful to you, Angie, for nominating me! I really do believe that "only in the darkness, can you see the stars!"
I literally can't thank you enough, Kirstie. Your kindness, compassion & determination to help others, is completely inspiring! I'm so overwhelmed & truly touched that you felt I was worthy of something so wonderful! A million pink thank you's to you, & to everyone that helped you put the amazing 'hospital survival pack' together. You've made me the happiest girlie! Your amazing survival packs will totally make poorly days a little happier! I'm now ready for anything that my health may throw at me, & can inject a little pink into every hospital stay! During my recent hospital admission, the nurses called me "pinky" & "pink princess", so everything in the pack lives up to my hospital nickname perfectly!
This is Gemma fearing with all her goodies.
Sadly one of the recipients didn't receive there pack. My friend Gerard who helped me thro chronic rejection and radiation passed away. He was a great friend and a fellow advocate at live life then give life. I couldn't help hi the way he helped me and I hoped the pack would help make him more comfortable in his last few weeks but it wasn't ment to be. I'm thinking of his family at this time and hoping he is breathing easy.
These packs have given some very ill people a small bit of happiness and I'm humbled that I could give that to them. The message of these packs is not only to make them feel happier in hospital, to bring them some luxuries and comfort. It was to let them know that in there darkest moment people are sending them love, thinking of them and hoping they get better. To let them know they are not alone.
I hope to do these packs again next year towards the end of the year. £1100 was raised for these packs, thank you to those amazing people who donated money and others who bought and sent items for them. Without you this wouldn't have been possible and I know that some of those people donated when I was extremely ill and I can tell you it kept me occupied in that time and made me happy knowing I was helping others. So from the bottom of my heart and from all those who received a pack thank you.
A little update on myself, I'm back at work in the admin department and doing over time on the shop floor. It was hard at first but iv settled in and feel happy now although at first I felt overwhelmed and not ready. Most evenings me and Stuart have been decorating our new house that we bought! My dream come true. We have ripped out carpets, painted and worked hard and now our house is our home. I feel so comfortable here, happy and relaxed. It's like it was ment to be my home. Were still doing stuff but have now moved in. It should be ready for Christmas. Here's a picture of the living room.
Also in November I won pride of Exeter hero of the year award here's a video of what winning ment to me.
http://www.exeterexpressandecho.co.uk/VIDEO-winning-means-Pride-Exeter-award-winners/story-20086591-detail/story.html
And finally a few photos I had done for some modelling back in October
Oh and a artical in the daily mail and daily star on me and Katie gammon.
http://www.dailymail.co.uk/health/article-2525174/Best-friends-dying-lung-disease-receive-life-saving-transplants-DAY.html
I will be blogging again soon x
- Posted using BlogPress from my iPad
Sunday, 1 December 2013
Hospital survival packs
So the hospital survival packs nomination period is up and those who will receive a pack have been contacted and iv also attempted and think iv succeeded in contacting those who haven't been successful this time. I apologise if I have missed anyone. I have to say I got so much response for the packs although there were very few men nominated, I wonder why that it? Everyone who was nominated deserved a pack and I'm just sad that I couldn't give everyone one. The best bit of this project has been emailing those who will receive one, there reactions have been priceless and that what I set out to do, to create a smile when there might not seem like many reasons to smile. That makes my heart feel happy. Will I run another project like this one? I defiantly think so, into e new year after a few months I may start the whole process again, but I will wait till I have some spare time.
I also want to thank all those who nominated someone and please don't hesitate to nominate them next time.
I hope I will be able to put up some picture soon of people enjoying there packs!
I will write a update on myself soon, but all is pretty roses and life is not only back to where I left it before my chronic rejection but things are progressing nicely.
- Posted using BlogPress from my iPad
Sunday, 20 October 2013
Tuesday, 15 October 2013
Hospital survival packs, nominations here
A while back now I told you of my latest charity endeavour. Hospital survival packs. They are now ready to go out and I'm ready for nominations.
Firstly the idea of these packs is to brighten the dark boring day in hospital, to relax and pamper you when your not feeling your best.
So what do they include? Here's pictures of the women's and mens pack there will be 10 I'm all to give away.
The women's pack;
Cushion
Fleece blanket
Sleeping eye mask
Bomb cosmetics gift pack including- Love Soaked Dreams Soap Slice,
Crazy After Dark Bath Blaster, Hello Ducky Bath Creamer, Foam Alone Bath Blaster, Herbal High Body Lotion
A travel wash bag
Johnson's face wipes
Medicated lip balm
Dead Sea face mask
Court worlds lavender pillow most
Relaxing massage oil
2x batiste dry shampoo
3x mini tooth pastes
Tooth brush
Paint by numbers
Sketch pad
Drawing pencils
Crayola colouring pens and pencils
Note book
2x mosaic coaster kit
2x mini cross stitch
Decorate your own mug
Creat your own sock teddy
Mini game
Heroes chocolate collection
Lindt desert chocolate collection
Haribo super in
Haribo tang tastings
Amelia's chocolate
Chocolate coins
Walkers shortbreads
The mens pack
Cushion
Fleece blanket
Sleeping eye mask
Clinic mens skin supplies- shaving gel, scruff ing lotion, gel lotion, anti fatigue cooling eye gel, face scrub, post shave healer, wash bag
Johnson's face wipes
Medicated lip balm
Cotswolds lavender pillow most
Relaxing massage oil
3x mini tooth pastes
Tooth brush
Paint by numbers
Scrap foil
Airfix
Sketch pad
Drawing pencils
Crayola colouring pens and pencils
Note book
Decorate your own mug
Creat your own sock teddy
Mini game
Heroes chocolate collection
Lindt desert chocolate collection
Haribo super in
Haribo tang tastings
Amelia's chocolate
Chololate coins
Walkers shortbreads
Not all the items are shown in these pictures but most are.
So secondly nomination rules. If you think you or a loved one would like one of these packs then you can nominate yourself or them by commenting on this blog or private emailing me on kirstietancock@icloud.com I could like you to include your full name, your age (must be 17+) your illness/condition which causes you to spend a lot of time in hospital and if you could tell me a bit about yourself and your condition. Also please leave a email address so I can contact you if you have won.
You can have any condition/illness this is not specific for cf or transplant patients, the only stipulation Is that you spend a lot of time in hospital, these packs are created for people who are having a long admission or in and out of hospital. perhaps a rehabilitation from an accident or a life long condition.
Please share this blog, the more nominations I get the better so I can find somebody who truly needs a smile put on the face. The deadline for nominations is the 1st of December as I hope them to go out before Christmas.
Best wishes and thank you to all those who donates to this project, I'm so proud of it and looking forward to the smiles it will create.
- Posted using BlogPress from my iPad
Firstly the idea of these packs is to brighten the dark boring day in hospital, to relax and pamper you when your not feeling your best.
So what do they include? Here's pictures of the women's and mens pack there will be 10 I'm all to give away.
The women's pack;
Cushion
Fleece blanket
Sleeping eye mask
Bomb cosmetics gift pack including- Love Soaked Dreams Soap Slice,
Crazy After Dark Bath Blaster, Hello Ducky Bath Creamer, Foam Alone Bath Blaster, Herbal High Body Lotion
A travel wash bag
Johnson's face wipes
Medicated lip balm
Dead Sea face mask
Court worlds lavender pillow most
Relaxing massage oil
2x batiste dry shampoo
3x mini tooth pastes
Tooth brush
Paint by numbers
Sketch pad
Drawing pencils
Crayola colouring pens and pencils
Note book
2x mosaic coaster kit
2x mini cross stitch
Decorate your own mug
Creat your own sock teddy
Mini game
Heroes chocolate collection
Lindt desert chocolate collection
Haribo super in
Haribo tang tastings
Amelia's chocolate
Chocolate coins
Walkers shortbreads
The mens pack
Cushion
Fleece blanket
Sleeping eye mask
Clinic mens skin supplies- shaving gel, scruff ing lotion, gel lotion, anti fatigue cooling eye gel, face scrub, post shave healer, wash bag
Johnson's face wipes
Medicated lip balm
Cotswolds lavender pillow most
Relaxing massage oil
3x mini tooth pastes
Tooth brush
Paint by numbers
Scrap foil
Airfix
Sketch pad
Drawing pencils
Crayola colouring pens and pencils
Note book
Decorate your own mug
Creat your own sock teddy
Mini game
Heroes chocolate collection
Lindt desert chocolate collection
Haribo super in
Haribo tang tastings
Amelia's chocolate
Chololate coins
Walkers shortbreads
Not all the items are shown in these pictures but most are.
So secondly nomination rules. If you think you or a loved one would like one of these packs then you can nominate yourself or them by commenting on this blog or private emailing me on kirstietancock@icloud.com I could like you to include your full name, your age (must be 17+) your illness/condition which causes you to spend a lot of time in hospital and if you could tell me a bit about yourself and your condition. Also please leave a email address so I can contact you if you have won.
You can have any condition/illness this is not specific for cf or transplant patients, the only stipulation Is that you spend a lot of time in hospital, these packs are created for people who are having a long admission or in and out of hospital. perhaps a rehabilitation from an accident or a life long condition.
Please share this blog, the more nominations I get the better so I can find somebody who truly needs a smile put on the face. The deadline for nominations is the 1st of December as I hope them to go out before Christmas.
Best wishes and thank you to all those who donates to this project, I'm so proud of it and looking forward to the smiles it will create.
- Posted using BlogPress from my iPad
Thursday, 10 October 2013
Is it ok to want more?
Living with cystic fibrosis I always thought as a child and teenager I would be ready to die when death came. That I would be tired of the fight for life and ready to role over and let death happen. How naive I was. Me and my best friend Lou were on our way back from London yesterday and while we were driving along we started to talk about my transplant, as I often do at the moment. It's my way of unpicking at the seems of life, rummaging through the memory's, deciphering the codes in my head left from the trauma of it all. Because when your told your dying, when your so poorly you can barely stay awake, your brain starts to loose pieces of information along the way. It's like it decides what it can deal with and starts to throw out all the other stuff until you are back on the road to recovery and then you start to find all these lost memory's.
Memory's such as ringing my nan and telling her I wasn't going to get a second transplant and I wasn't going to make it. Nothing can prepare you for that conversation, not even your delusions as a teen that when death came you would be ready. Starting to relive those memory's, it's so painful, so raw, it's like going through them for the first time because each time you remember something else and it's all new again, the pain slices through you and the tears sweep my face.
I can only just remember the howling cry of my brother, even as I write about it, it feels so fresh so new and I want to reach Into my memory and wrap my arms around him And tell him how it all turns out ok.
I still don't remember all those conversations I made to so many of my close friends and family that day. I wonder if they will ever come back, part of me hopes they will stay hidden. Am I ever ready to deal with these moments of pain. There are still things I cannot remember from my first transplant and i am sure if they were to come back to me they wouldn't benefit me in anyway, they are hidden some where in the deep fog of protection, possibly just dropped out of my brain forever never to be found.
There is something else I have learnt from this experience, not only am I not ready to die but I'm finally ready to live. Now this may sound confusing for everyone, iv never shied away from life or walked away from an experience to be had but iv never thought I wanted to live to be old, joked about the fact I don't want wrinkles and simply thought that 50, 60 or 80 sounds to old. Sorry for those who are that age, but being young those ages do sound so old to me. Until the penny dropped, stu said to me today about sorting out his retirement fund. My reaction was to well up, I want to be there! I want to be with him when he retires, sending him off down the golf club in the day while I natter away to my friend Lou and go to the spa or some retirement like leisurely thing!
This may sound selfish of me, it does to me. It sounds like I'm simply wanting to much and I should just be grateful for every day I get, god I promise you I am. Sometimes though I catch myself wanting more and hoping I never have to relive those conversations with my friends, not just in my memory's but in real life.
- Posted using BlogPress from my iPad
Memory's such as ringing my nan and telling her I wasn't going to get a second transplant and I wasn't going to make it. Nothing can prepare you for that conversation, not even your delusions as a teen that when death came you would be ready. Starting to relive those memory's, it's so painful, so raw, it's like going through them for the first time because each time you remember something else and it's all new again, the pain slices through you and the tears sweep my face.
I can only just remember the howling cry of my brother, even as I write about it, it feels so fresh so new and I want to reach Into my memory and wrap my arms around him And tell him how it all turns out ok.
I still don't remember all those conversations I made to so many of my close friends and family that day. I wonder if they will ever come back, part of me hopes they will stay hidden. Am I ever ready to deal with these moments of pain. There are still things I cannot remember from my first transplant and i am sure if they were to come back to me they wouldn't benefit me in anyway, they are hidden some where in the deep fog of protection, possibly just dropped out of my brain forever never to be found.
There is something else I have learnt from this experience, not only am I not ready to die but I'm finally ready to live. Now this may sound confusing for everyone, iv never shied away from life or walked away from an experience to be had but iv never thought I wanted to live to be old, joked about the fact I don't want wrinkles and simply thought that 50, 60 or 80 sounds to old. Sorry for those who are that age, but being young those ages do sound so old to me. Until the penny dropped, stu said to me today about sorting out his retirement fund. My reaction was to well up, I want to be there! I want to be with him when he retires, sending him off down the golf club in the day while I natter away to my friend Lou and go to the spa or some retirement like leisurely thing!
This may sound selfish of me, it does to me. It sounds like I'm simply wanting to much and I should just be grateful for every day I get, god I promise you I am. Sometimes though I catch myself wanting more and hoping I never have to relive those conversations with my friends, not just in my memory's but in real life.
- Posted using BlogPress from my iPad
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