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
Showing posts with label best friend. Show all posts
Showing posts with label best friend. Show all posts
Thursday, 10 October 2013
Tuesday, 30 October 2012
Guest blog Transplant from my best-friends perspective
I’m Julie, Kirsties best friend. She has asked me to write a bit for this blog about her transplant journey from my point of view….
22nd May 2010, I wont forget this day, I spent the day with Kirstie at the beach. I got horrifically sunburnt, so that’s one reason I wont for get it, But another is that this was the day that Kirstie and I really talked about transplant, the realistic prospect of it, the process, the outcome (good and bad) and how we both felt about it. Up until then, I knew it was a possibility, but that was it. I also thought before this talk , and I guess after it too, that transplant would be a long way off. One year later it was becoming a reality, very quickly. I was scared.
Nothing can prepare you for seeing your best friend stop doing everything they love, everything you love doing together…including managing to eat a whole rack of ribs and garlic bread EACH!! (Kirstie you know what I’m talking about!!) But it was happening. We still had fun and a laugh, messing around with hair extensions, me trying to push Kirstie around Tesco in Maud, before she got to ill to do that. I was scared to the pit of my stomach seeing Kirstie when she was really ill, hardly being able to walk to the toilet, just 3 meters from her bed. Although I never saw her at her sickest in Harefield.
One of the best thing about mine and Kirstie's friendship is we may not manage to see each other for weeks, unlike we used to a couple of years ago, but when we do it’s always the same, we chat, we laugh and it never changes. We used to talk on the phone every night for at least and hour.
I do have a regret from when Kirstie was really unwell, and it’s that I didn’t see her enough. Although I knew what was happening, and it was totally apparent when I saw her, I don’t think I wanted to admit it to myself. It did hit me one day though, I was cooking tea with my boyfriend and suddenly burst into tears… I didn’t want to lose my best friend. I am a strong believer in gut instinct, my gut instinct was telling me that I wouldn’t lose her. BUT I wasn’t there for her enough, through my own fear. If I could go back, I would change that.
I was texting Kirstie as she was airlifted to Harefield. I remember asking her what was happening, she told me not to worry. I remember reading this, I was in my car in a bit of traffic. That text comforted me for all of a couple of minutes, until my logical mind caught up with me and slapped me round the face DON’T BELIEVE HER, SHES QUITE OBVIOUSLY NOT OK!!!
That was pretty much all I heard from Kirstie for weeks. I sent her lots of texts telling her how much I loved her etc…I knew in my head what was happening but it didn’t seem real.
It was a waiting game.
keeping in touch with Kerrie, Kirstie's sister, by text, by phone, to keep up to date, this was hard. A number of times I had tears streaming down my face, not sure if Kerrie could tell or not really.
Waiting to hear what was happening, knowing what Kirstie was sedated most of the time, was so hard. 180 miles away from her, normally Kirstie would tell me how it was, she wasn’t there to do it this time. Kerrie would tell me what she knew, and what the outlook was, and how long they thought Kirstie had.
Kerrie told me about the doctors talking about ECMO, it sounded horrific, BUT… a life line, to bide some time. I didn’t know all the details, or the risks, but it was obvious there would be some. As long as it gave Kirstie more time, and a rest, which undoubtedly she needed, I tried to stay positive. All this time I kept my gut instinct in mind. Not knowing was very hard, but also maybe made it easier from my point of view. I couldn’t imagine what Stu and Kirstie's family were going through.
There were the calls that came for lungs, but they weren’t any good. I’d get a call from Kerrie to say they had lungs, then another to say they were no good. Tears. Waiting. More tears.
Then on Monday July 11th at about 7:30am, Kerrie called. They had lungs. This felt different, I carried on smiling after this phone call, even though they didn't know if it was going ahead yet. About 15 minutes later, Kerrie called back. I was waiting for the call. The feeling was amazing. WOW. I cried, with total happiness. Then I had a reality check, someone died for this to happen, I felt an immense amount of sadness.
I waited all day to hear how the op went. I work in a children's nursery so I was very busy all day, so it did help to keep my mind off it all. Kerrie let me know it all went well, there was still a long way to go, but Kirstie had done it.
The next few weeks were filled with waiting, I saw pictures Kirstie's Mum was putting up of Kirstie online. I felt of proud of her for making such an effort. I had no idea what was really involved in getting better. Me and Kirstie had sort of discussed it, but to be honest I don’t think she even really knew 100%, can anyone? So that’s why you have to stay positive, everyone says that, but you really do. Look forward, think about all the good things to come. I kept thinking about how me and Kirstie would be able to have our BBQs again, take Kia for walks, go shopping. I couldn’t wait.
A few weeks later, I was on lunch and work, my phone went, Kirstie's name flashed up. I was so excited to hear her voice, we talked for quite a while, and said as soon as she was home I would go and see her. This phone call was the best I have ever had. Hearing her voice after everything. I had tears in my eyes. So happy. Its moments like this that make you realise, like I said before, that you have to stay positive. Be honest with yourself, but be positive.
Kirstie's journey has been a very hard one, but I know that she needed everyone around her, Stu, her family, friends.
I thank Kirstie's donor and their family everyday. Through their devastating loss and sadness, they created so much good and happiness. So brave.
I will be posting my director mels blog on filming the documentry in the next few days and also write about the friendship we formed.
- Posted using BlogPress from my iPad
22nd May 2010, I wont forget this day, I spent the day with Kirstie at the beach. I got horrifically sunburnt, so that’s one reason I wont for get it, But another is that this was the day that Kirstie and I really talked about transplant, the realistic prospect of it, the process, the outcome (good and bad) and how we both felt about it. Up until then, I knew it was a possibility, but that was it. I also thought before this talk , and I guess after it too, that transplant would be a long way off. One year later it was becoming a reality, very quickly. I was scared.
Nothing can prepare you for seeing your best friend stop doing everything they love, everything you love doing together…including managing to eat a whole rack of ribs and garlic bread EACH!! (Kirstie you know what I’m talking about!!) But it was happening. We still had fun and a laugh, messing around with hair extensions, me trying to push Kirstie around Tesco in Maud, before she got to ill to do that. I was scared to the pit of my stomach seeing Kirstie when she was really ill, hardly being able to walk to the toilet, just 3 meters from her bed. Although I never saw her at her sickest in Harefield.
One of the best thing about mine and Kirstie's friendship is we may not manage to see each other for weeks, unlike we used to a couple of years ago, but when we do it’s always the same, we chat, we laugh and it never changes. We used to talk on the phone every night for at least and hour.
I do have a regret from when Kirstie was really unwell, and it’s that I didn’t see her enough. Although I knew what was happening, and it was totally apparent when I saw her, I don’t think I wanted to admit it to myself. It did hit me one day though, I was cooking tea with my boyfriend and suddenly burst into tears… I didn’t want to lose my best friend. I am a strong believer in gut instinct, my gut instinct was telling me that I wouldn’t lose her. BUT I wasn’t there for her enough, through my own fear. If I could go back, I would change that.
I was texting Kirstie as she was airlifted to Harefield. I remember asking her what was happening, she told me not to worry. I remember reading this, I was in my car in a bit of traffic. That text comforted me for all of a couple of minutes, until my logical mind caught up with me and slapped me round the face DON’T BELIEVE HER, SHES QUITE OBVIOUSLY NOT OK!!!
That was pretty much all I heard from Kirstie for weeks. I sent her lots of texts telling her how much I loved her etc…I knew in my head what was happening but it didn’t seem real.
It was a waiting game.
keeping in touch with Kerrie, Kirstie's sister, by text, by phone, to keep up to date, this was hard. A number of times I had tears streaming down my face, not sure if Kerrie could tell or not really.
Waiting to hear what was happening, knowing what Kirstie was sedated most of the time, was so hard. 180 miles away from her, normally Kirstie would tell me how it was, she wasn’t there to do it this time. Kerrie would tell me what she knew, and what the outlook was, and how long they thought Kirstie had.
Kerrie told me about the doctors talking about ECMO, it sounded horrific, BUT… a life line, to bide some time. I didn’t know all the details, or the risks, but it was obvious there would be some. As long as it gave Kirstie more time, and a rest, which undoubtedly she needed, I tried to stay positive. All this time I kept my gut instinct in mind. Not knowing was very hard, but also maybe made it easier from my point of view. I couldn’t imagine what Stu and Kirstie's family were going through.
There were the calls that came for lungs, but they weren’t any good. I’d get a call from Kerrie to say they had lungs, then another to say they were no good. Tears. Waiting. More tears.
Then on Monday July 11th at about 7:30am, Kerrie called. They had lungs. This felt different, I carried on smiling after this phone call, even though they didn't know if it was going ahead yet. About 15 minutes later, Kerrie called back. I was waiting for the call. The feeling was amazing. WOW. I cried, with total happiness. Then I had a reality check, someone died for this to happen, I felt an immense amount of sadness.
I waited all day to hear how the op went. I work in a children's nursery so I was very busy all day, so it did help to keep my mind off it all. Kerrie let me know it all went well, there was still a long way to go, but Kirstie had done it.
The next few weeks were filled with waiting, I saw pictures Kirstie's Mum was putting up of Kirstie online. I felt of proud of her for making such an effort. I had no idea what was really involved in getting better. Me and Kirstie had sort of discussed it, but to be honest I don’t think she even really knew 100%, can anyone? So that’s why you have to stay positive, everyone says that, but you really do. Look forward, think about all the good things to come. I kept thinking about how me and Kirstie would be able to have our BBQs again, take Kia for walks, go shopping. I couldn’t wait.
A few weeks later, I was on lunch and work, my phone went, Kirstie's name flashed up. I was so excited to hear her voice, we talked for quite a while, and said as soon as she was home I would go and see her. This phone call was the best I have ever had. Hearing her voice after everything. I had tears in my eyes. So happy. Its moments like this that make you realise, like I said before, that you have to stay positive. Be honest with yourself, but be positive.
Kirstie's journey has been a very hard one, but I know that she needed everyone around her, Stu, her family, friends.
I thank Kirstie's donor and their family everyday. Through their devastating loss and sadness, they created so much good and happiness. So brave.
I will be posting my director mels blog on filming the documentry in the next few days and also write about the friendship we formed.
- Posted using BlogPress from my iPad
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