Little things

I'll start off on a positive note, the response of you lovely people to my article in the Guardian. It is so fantastic to read all of your inspiring comments, they have kept me going over the last couple of weeks. I really hope the article has made some people think and sign up to the donor register. I must thank the wonderful Caroline who wrote the piece and was fantastically caring from start to finish, she also lent me her PDF so you can view it online here and in the awareness section.
Since I last posted I haven't been feeling great nothing major just the little things that wear you down, from continuing to pain, to sicky, nauseaous days, to sleepless nights, bloating, body draining exhaustion and all the little things that add up to make things a little bit worse. My hospital visit was ok, breathing slightly worse although not worryingly so, I was given another prescription for pain relief and discussed palliative care massage which might help with pain too. I have had terrible nights with little sleep lately and although I was given sedatives they didnt help much. I am now back into a slightly better sleep pattern but been told there isn't anything else I can have for sleeping, which isn't incredibly helpful. When your not sleeping till 4am then getting through each day on very little lung function its very draining and not good to my overall health.
Anyway none of this has made me particularly cheery, and I've been having a few hard times during the last couple of weeks. I dread these times as its so difficult to drag yourself out of them. To cut a long story short today I have reached a low point. It's devastating to face the end of another year. As many of my friends battling serious health conditions will tell you, Christmas is a milestone and when you are very ill sometimes milestones aren't so good. I loved (and still do) Christmas always have done, but it makes me desperately sad not to be involved as much as I want. Believe me I am the queen of "things will be better next year", and adjusting tasks to accomodate my health but this is my 4th year not being able to be properly involved and I can't brave face it at the moment. Yesterday I managed to put 3 baubles on my tree before getting breathless and giddy. It makes me intensely angry and upset to hear promises that next year I can do the whole tree myself and everything else I long for, I have said the same thing for the past 4 years, maybe things will never be better than this. Every night lying in bed I imagine having a call for transplant, and it breaks my heart that the phone doesnt ring. I don't want another year of worry, constant struggle, and being scared out of my mind. The hardest thing to bear is that someone could change this for me, someone could literally give the chance to achieve all my dreams and wishes. Thats all I want, a chance.
I have always said I will be honest, how else can you know what life waiting is like? Today my christmas tree broke, a silly thing but it just opened the flood gates of woe. I am sad for my uncertain future, my perhaps futile hope of a better life, the fact that Christmas my favourite time of year is not as happy as it used to be, the pain, struggle and breathless exhaustion that will accompany any festive cheer, that most people will take so much for granted without realising how much I would give to spend a day in their shoes and having to keep trying every minute of everyday for no reward. Today I spent most of the morning in an angry rage and most of the afternoon sobbing, until my eyes were puffy and I was enveloped in a cold sweat. Watching Les Mis concert DVD and allowing it to squeeze every ounce of suppressed emotion from my body and soul. Do I feel better? Not really, I just feel numb. I don't have a choice, today has been self indulgent tomorrow I must try to pick up the pieces and carry on. If you haven't signed up to the donor register please consider it, you do have a choice and you could change a life in more ways than you could ever imagine http://www.uktransplant.org.uk/ukt/how_to_become_a_donor/registration/consent.jsp


  1. I hope you manage to get a new Christmas tree, everyone needs a tree at this time of year.
    I read your article through the BBC a while back and I am amazed at your determination and attitude. You are an inspiration to everyone, no matter what they are going through. Organ donation is something to close to my heart, having lost close, healthy, family members we were sure to make sure that their organs were donated.
    Keep up the positive attitude and I hope to hear more from you, Laura xx

  2. I just signed up to the list. 99% sure I was on it already but doesn't hurt to update the information!

    I fervently hope that you get a transplant soon. You deserve to live a normal life. Every time I read your blog it makes me appreciate what I have.


  3. Tor, In January I'll hopefully be launching a creative project in Brighton to raise awareness of the need for more registered organ donors.

    Would really love your input on images, media, etc - if you are
    interested. Is it ok to facebook you or something and get the ball rolling? I couldn't find a contact email on the blog.


  4. 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 or any of those words that too often really mean i-could-never-be-so-strong-which-means-you're-different-than-me-so-thank-god-i'll-never-get-your-disease. 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.


  5. Hi Tor,

    I've got a broken leg, and am feeling a bit sorry for myself. However I stumbled across your blog, and reading it puts things in perspective a bit.

    I followed your link, have signed up to the donor register, and will encourage as many people as possible to do the same. I really hope you get that phone call soon.

  6. Sounds like a really shit day. Hope you're feeling a bit better today and got your tree sorted, sure it looks lovely. Looking forward to that hug...and the Christmas lights tour. Love you sooo much xxxx

  7. Hi Tor
    So sorry to hear how you are feeling. Have had a nasty bout of depression and feeling very sorry for myself. How dare I?

    Have registered on the donor list and wish you all the best

  8. Hi Tor

    I stumbled across your article on the BBC website and have been following this blog ever since. I just wanted to say that I'm sorry to read that you're having such a shitty time at the moment, and I really hope things improve for you. I'm already on the list but I will post a link on my facebook and try to encourage others to sign up.

    Wishing you all the best


    Rosie xxx

  9. Hi, Tor! I read about you in a magazine...You mite be thinking that your story has reached some parts of Britain and the US but it has reached here 2...Saudi Arabia. I don't really know wat 2 say--I'm amazed by your constant determination and hope.
    You are an inspiration to all of us.
    I will keep you in my prayers.

    Cheers, Sama'
    P.S. I luv ur blog!

  10. you are amazing.

    i dont know what else to say. just by being able to pick yourself up the next day and carry on.

    everyone has bad days - but u do deserve a cry and a rant - u need to! just get it out!

    i wish i could come see you!!

    i know you love christmas, and you deserve a good one.

    text me anytime xxxxx

  11. Dear Tor,

    I was on "the list" for a heart for 7 years and called in 5 times when I was finally transplanted in January, 2007. I got sick when I was 19 years old, and was transplanted when I was 58. I know what you are going through.

    Be encouraged. Miracles DO happen. God bless you and keep you in the palm of His hand.

    Blessings - Tom White

  12. Oh, Tor. Loving thoughts are with you so often.May you get your transplant very, very soon. From a former colleague, who you didn't know well but who admired you and your mum immensely - two lovely, brave people.