Painful

Hey Tor. Been following for a while now, you've done me much good-- oddly enough, most often with posts like these. I have a slow but fatal form of cancer; diagnosed at 24, just when my life was supposed to be "taking off," was told I had 10 years before I really needed to worry, that was 15 years ago. 8 surgeries, countless scans, experimental procedures, innumerable needles, terrible and relentless side effects. Like you I feel the sense of living on borrowed time, of not being able to plan for the future, of hoping for that remote miracle. The frustration of and anger at the trite words of others. (God save us from the well-intentioned.)
I'm lousy at acknowledging my feelings to myself or others, so they tend to get bottled up and add to my own bouts with despair. Finding your blog had been amazing. So often you capture my own experiences, my hurts, my existential rage. I also admire your ability to find so much good in the portion of life allotted to you, and hope to learn to do more of the same myself.
I won't call you inspirational or courageous. Instead I'll just thank you for everything you've ever posted here. Including, and perhaps especially, the darkest posts. Reading them, some of us feel less alone.
I have so many wonderful comments left on my blog and I absolutely love reading and recieving them! I haven't (as far as I remember) ever singled one out before but when I recieved the above comment before Christmas it really touched me and meant such a lot I had to say a special thank you to the person who wrote it. Many of you have shared your stories with me via this blog, sent well wishes and told me how my story has impacted, even inspired you. All I can say is that you all inspire me too, to know there is such love in the world and to keep fighting when I feel I can't. I'm humbled by them and wanted to dedicate my second post of 2011 to saying a huge thank you to my readers.

I hope everyone had a good christmas and festive period. I did, but also found it hard for many of the reasons I've documented before. I am supremely grateful to still be here to celebrate this Christmas, lets face it according to the odds I shouldn't have celebrated my last 2 Christmasses. I am aware others were not so lucky. During our Christmas meal we toasted those that we had lost including the four potential donors that tried to save my life, their families were never far from our minds. However Christmas was difficult for many reasons. The worry of the coming year, the incredible struggle it took to be involved and not being able to do all the things I really wanted to do. It was frightening to realise how much harder it was to do certain tasks this year compared to last. It may be hard to believe but I I was too out of breath to unwrap presents, I needed several breaks inbetween: such a simple task and yet it was too much. I had to wait till the last possible moment to get downstairs and spent most of the morning in bed to conserve energy, dressing etc very slowly so as not to get too tired. Having to lie down in the afternoon because I was so exhausted and not being able to go to relatives as planned on Christmas night because I couldn't move from the sofa. Another problem was the terrible back, and chest pain that I experienced from exerting myself more than usual, popping pain pills every 4 hours to get me through.
That in turn has had lots of secondary effects, not to get too personal but had lots of problems with constipation and bloated sore tummy and in the end the painkillers weren't even helping anymore. Since then things have felt a bit hellish if I'm honest. The hospice that I have been referred to have tried to help me but so far everything has caused more problems and no solutions. I was given a pain killer patch that stays on for 7 days and is then replaced. I was really hopeful that this would help me, I put it on on a Friday night and passed the evening with no effect. ~The next day I woke up but was very tired and couldn't do much without having to shut my eyes and lie down, therein the trouble started. For 3 days all I could do was literally lie down and dose, my eyes hurt to keep them open and my head was achey. Even when I tried to push through the exhaustion I started to get really nauseaous and the only relief was to give in and shut my eyes. Even at my most ill I have never laid about and been so tired. I kept the patch on for 4 days and the sleepiness just got worse, it was becoming more debillitating than the pain, I couldn't even watch TV as my eyes couldn't stay open long enough. After I took the patch off I was still not myself for the next few days. Eventually I cleared my system and was back to square 1 again, the next step I was told was a drug called Oramorph or in other words liquid morphine. I was really not happy about taking this because of all the connotations that morphine has. I spoke to my hospice and my CF team who all assured me that I was ok to take it and tried to allay my fears. After lots of doubt I started taking it, the method was to take a small dose to begin with and work up to a level that would relieve my pain and would then be my regular dose. I did this over a few days, 5 ml took the pain off one afternoon so the next day when my back started hurting I took that dose...no effect. I upped the total to 7ml and although the pain was bearable it wasn't completely gone. Last night I was in pain again so ended up taking 15mls over the course of the evening but it had no effect on my pain and only served to make me nauseaous and sick.
Which is where I am today really. I feel completely lost. Looking back over the last couple of weeks I have cried at some point everyday and just feel so broken down. I want something to help me but to do that I'm having to go through hell to get there. It is an overwealming, frightening time. I have realised in a short space of time what I have known to some degree for a long time. Nothing much will help me now, anything will only do a certain amount it's not going to make me feel much better. I have felt so pulled out of myself, like I am not really me anymore, like I am going through the motions all the time but large chunks of my life are going by without me taking it in. Things have been dire before but I don't think I have ever wished for the transplant to come right now more than I have been lately. You cannot realise just how much I would like to walk out on everyone and everthing, all my problems, just for a few hours. To get away from it all. But I can't even walk out the door unaided let alone leave all my problems behind. Wherever I go, I come with me.

So many people are thinking, praying and sending positive thoughts to me, that my call comes soon. I am astounded by how much support I have, you would think with all that positive energy out there something good would happen, it seems unbelievable it hasn't. Even my uni work which has been a constant sense of frustration, temper, hard work, joy, purpose and most importantly hope for a better future, may have to be given up. I still can't bring myself to make the final decision but I really can't see how I can continue like this getting further and further behind.
I'm not sure whats going to happen now, will try to keep you posted when I can. I'm not sure how much more I can take.

One of a kind x

I lost a very good friend before Christmas, I can't even believe I am having to write these words because deep down I don't quite believe that he is actually gone. When I was diagnosed with CF as a child, my mum especially was inconsolable at the hospital. She was scared and uncertain of what the future might hold for the two year old little girl who seemed so "normal" in many respects. The nurses were kind but she felt as though no one really understood her. Then a young male nurse came in and started talking to me, mum wasn't particularly bothered he was one in a sea of faces, until he turned to her and said, "you know I have CF too". And so Nick came into our lives. He sat and talked to mum for the whole of his shift, convincing her that Cf sufferers could grow up to lead happy lives, he even showed her his legs because she was worried that mine were too thin! I will be forever grateful to him for the support he gave our family at that devastating time. I don't remember much of Nick from that long ago, but I do remember him being one of my favourite nurses, always chatty, friendly, teasing and trying to get me to eat chicken soup which was horrible ( I have never eaten hospitla food!). Over the years we didn't see each other for months maybe years but every now and then he would turn up on our doorstep, no warning and with a big grin on his face. A constant friend who though out of sight wasn't out of mind.
Life didn't give Nick an easy run, he was often in hospital, fought bowel cancer, forced to give up nursing due to ill health and was generally put through the ringer, but he always came out the other side. He seemed indestructable to me. Nick was so strong and independant with a cheeky side determined to fight Cf and live his life on his terms. Even now I can't believe that he's not going to text me again in a few months or randomly turn up one day. He had too much life in him, too much determination to be gone.
On New Years Eve we let off a sky lantern with the names of all the people we have lost to let them know we remember them. Nick had one all to himself (he would have liked that i think!). I'm so sad I didnt get to say goodbye, but Nick you were the strongest, most determined, independant, wonderful, fighter and friend that I have ever known. Thank you for being there all these years, it meant a lot to all of us to have you in our lives, you will NEVER be forgotten. You truly were one of a kind xxxxx