Sunday, January 16, 2011

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 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.

You Might Also Like


  1. You're in my thoughts Tor. I don't pray but I really hope you get your call soon. Lots of love.

    Moll x x

  2. A comment just to let you know you're being read, and treasured.

  3. hi Tor,

    I don't tend to comment but always read and have seen your photos through CF mags etc for years. I really am always hoping for your call to come and I hope that something can finally relieve your pain.


  4. Can't find any words, but praying and sending a warm friendly hug.
    x x x

  5. Praying for you, Tor. (((((big and gentle hugs))))

  6. Hun you're doing all you can do and many people inclusing myself are always thinking of you and hoping that very soon you get the gift you so deserve as do many others. You're very special and your spirit inspires so many :-) xxx Oramorph-I needed quite a high dose too alongside anti sickness tablets...grrr!

  7. You dont have to give up uni, simply put it on pause for a while until you are well again. Then you should be able to pick up where you left off.

    I know how hard it is giving up on something that was keeping you going with hopes for the future, but sometimes, just a break can really help.

  8. I am sitting here crying for you. I am not signed up to the organ donation, I hate the thought of someone precious to me being cut open and taken away before they're barely even dead. But seeing how much your suffering, how young you are and how much a difference it would make has made me want to sign up. Keep up your good work, I hope 2011 is the year for you.

  9. To Anonymous at 10:53...

    Please do it right now or you may forget! Here is the link to sign up online or via phone call:

    Victoria, you and your family are in my prayers. I am so sorry that you are suffering. I am a living kidney donor and it was the best experience of my life. May your pain be eased and your body be healed.

  10. Really hoping you will find some pain relief while you wait for your call and hoping so much that it comes very soon. Gentle hugs and keep us posted when you possibly can. xxx

  11. Tor, I know it doesn't help but I want you to know that you are touching people around you - you've brought me to tears with this post because your pain (not just physical) is palpable and searing.
    I'm not a praying person but I am WILLING your call to come. If I could be a living donor and bring you another chance right this minute I would, I really would.
    I wish there was something I could say which actually helped :-(

  12. You don't know me, but I follow your blog and just want to send you my love and best wishes. I truly hope that you can continue to find the fight inside, whilst we all keep praying for that transplant call.

  13. "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."

    Look at us, Tor, trading quotes.

    I'm the guy who wrote the comment that headed your latest post, and imagine my surprise to see it there. Thank you for that.

    The section of your post that I included above, I wanted you to know I relate, and appreciate your saying it. God, to be able to get away from it all, for even just a day.... I've read about chemo patients taking a "drug holiday," skipping a round to give themselves a rest-- I can't go eight hours without medication to reduce the side effects I experience.

    Wherever I go, I come with me. You said it, sister. Amen.

    Listen, I wanted to send this privately so as to give you my email, but I don't see that option (probably a good idea on general principle). I don't like to publicly post my personal email address, but here's what I can do. I maintain an alternate email, a "spam" account. If you feel like dropping me a line, it's I'll give you my real email from there.

    No worries if you don't wish to, I know you have to ration your energies including online time. :) Just know that, one struggling survivor to another, we're holding hands through the worst.

  14. Tor,

    Sending you well wishes and lots of love. Praying for you and sending gentle hugs for you and your family.

  15. still reading and hoping that when the call comes, everything will work out right this time. You will find a way to manage the pain, don't give up on trying to find the right combination of drugs - hospice doctors are the best ones for this, but it is trial and error to find what works best for you. Hope today is a better day and if not tomorrow will be. Juliet

  16. I'm so sorry nothing has helped you feel better. I think of you all the time and pray your call will come very soon. I was in ICU at new year and extremely poorly and my mum said to me on the worst night, "come on, now is the time to dig deep right down inside and find that fight to keep going". I don't remember much of that week but I do remember her saying that and it has helped me a few times since. lots of love, just hang in there xxxx

  17. Tor, I have CF and an adult patient at Brompton too. I saw you there the other week with your parents but I didn't know if you'd want me to come and say hello as I've only met you via Twitter.
    Just about pain relief. Have you ever tried hypnotherapy? I did a while back as I had severe stomach pain but didn't want to take more drugs. Its a useful idea for CF patients as it helps us take some control back over the pain (something CFers like as we are so good at self-medicating) and lets us manage the pain better. So although its doesn't get rid of it I found it took the edge off and, it does make help you feel more in control of the pain.
    My thoughts are with you