Huge apologies for lack of posts lately, I haven't forgotten you but as I said last time there just haven't seemed to be the right words. Usually when I write a blog post it just flows without me thinking about, I speak honestly and from the heart and most of the time don't even read my work back. But every time I have tried to get something down these last few weeks it's been stunted, difficult and I've given up.

I'm not exactly sure why this is, nothing major has happened but things have been very hard. I don't like how things are going or the person I'm becoming and maybe that has something to do with it. I have been thinking about what single word would sum up my feelings over the last few weeks and the word that seems to come close is scared.

Uni has finished for the time being (more about that another day) but rather than the relief I expected to feel once that huge stress was lifted never really materialised. Instead I have become bored very quickly and long for something with meaning to fill my days. I'm caught in a viscious circle because while I crave something meaningful, my body craves rest. I am reduced to watching tv or tapping away on my computer; when I'm not doing treatents I'm too tired and breathless to do anything other than rest. It hurts me terribly to have to face that my life has come to a shuddering halt. I don't go out anymore (I've not left my house in 6 weeks), I can't apply myself to workk because my energy and concentration don't stretch to that anymore. 90% of my day is sitting in my room and even then I am often gasping for breath just sitting still. Life is so far removed from anything I actually want to do that its really an exsistence and to write those words is like sticking a knife in my stomach. Forcing me to realise how bad it's become.

The heat that everyone else enjoys so mcuh is abysmal to me. I sit in my room with a fan directly on me, ice packs, cold drinks the works but nothing eases my breathing and I long for cooler days. Its hard to know its only going to get worse for me heat wise from here on in. I had to cancel my clinic appointment from last Monday as there was just no way I could survive the ordeal of getting dressed, down the stairs, into the car etc and spending all day in the hot when I couldn't draw breath sitting in bed. My oxygen levels in my blood are lower than usual and I'm actually using a higher flow of oxygen as I can't manage on my usual amount. I'm dragging myself to the bathroom, and back to my room and that is about it. Friday morning I woke up with a rumble in one side, sat up and proceeded to cough up blood, something I never do that is terribly frightening. All these things are harsh reminders that things are slowly but distinctly getting worse. My hospital are always asking if I have any new signs of infection and I can honestly say I don't, that just means there isn't anything that can be done. I worry that I don't say the right words to the people that need to know, to get over just how bad things are, to make them understand that there isn't much more to cut out of life. Eating and talking leave me so breathless, pausing inbetween words, choking on food. It's scary.

My little yorkshire terrier Scruffy has been really ill this last week. She is 16 and has had a full and happy life, loved and spoilt by us all. She has been up and down on a day to day basis and there have been many times when we have thought about taking her to be put down but couldn't bring ourselves to do it, she is eating drinking and in no pain and while she remains so we will do all we can to keep her comfy. I have been very fortunate to never experience a family loss, but Scruff's condition has stirred all sorts of emotions in me. It sounds silly but when her breathing was very bad and she was having coughing fits her little face looked so scared. As I looked at her it hit me, this could be me one day. Locked in my own little world, unsure what was happening and relying on other people to make decisions for me. Would I be laying in a hospital frightened, scared? I have always been frightened in hospitals at the best of times but would I want to spend my final days there? I hate feeling out of control and if I can possibly manage a procedure without sedatives I do, so to imagine myself so scared and helpless in a frightening place tears me apart. From the other point of view, seeing us all so upset about a dog, how would my family manage watching me slowly wither away? How would they cope if they lost me? It makes me feel physically sick.

I don't want to feel this way, as though everywhere I turn is a scary prospect that I can't bear to think about. It is an isolating and terrfiying feeling. MEanwhile transplant shines like a beacon of hope in the sea of darkness around me. If only it will come in time.


  1. I only found your blog yesterday but i've read or skim read right from the beginning. Firstly i'd like to say your motivation and fight are truly inspirational. Also i think it is admirable the work you do to highlight the need for people to join the organ donor register, i think i signed up when i was about 13/14 and its something i never understand why people dont do it. I understand the importance of the register as my cousin who's 3 years older than me (21) is only here today due to the two liver transplants that he was fortunate enough to recieve. Keep up the blog + i'll try + spread the word!

  2. Tor, please know that there are people out there like me who have never met you who check your blog every day in the hope of reading about a successful call for you, who think of you daily and who are promoting the transplant message because of you. I can't even imagine the fear you feel, but just want you to know that there are so many people out there thinking of you and praying for you. Katie x

  3. I love you so much ,thats all i can say after reading that.
    Its so amazing how many people you touch with your story ,really proud of you xxxx

  4. Tor. Your articulate, honest, and soul bearing entries render me speechless. I spend hours imagining how you must feel and honestly wishing I could just come around and cuddle you! For those of us who have (Or had) life threatening conditions we all empathise and feel/felt the same.I am proud of you and your honesty, bravery and optmism. Much love, Matt X

  5. Tor you know you are my hero, right? I can't take on your pain or worry, and I can't actually do anything to physically help you, but like many, many others I can care about you and add my prayers for a speedy transplant. You are on very special lady :) x

  6. I have been reading your blog for a few months, and I can't say how much I admire your will and strength, even when things are so dark. You are truly an inspiration. Many hugs xxxxx

  7. Tor, thinking of you every day. I can't imagine what you are going through but I hope that you can receive some little comfort from all the people who check your blog every day (like me) in the hope for good news. I have shared your video message on my facebook page in the hope that it will prompt people to sign up to the organ donor register. Hold in there, we are all thinking of you.

  8. I have been following you on twitter for a short amount of time and can i just say you are in inspiration. I myself am an organ donor and after reading your blogs a good friend who has been considering it for some time has signed up to become an organ donor. The work yu do surrounding your illness and transplant week is phenominal. I wish you all the best and keep you in my thoughts and prayers.

    Lots of Love
    Emma xXx

  9. Hello Victoria (feels weird saying my own name!) I'm not suffering from lung disease, but I'm suffering from Liver Disease, and I have these same thoughts you do. My ankles have gotten swollen, I'm in pain when I eat, I can't be on me feet for long, I look like I'm 7mths pregnant, I can actually FEEL my spleen! All I can say is there is always a silver lining in the clouds. I have a child, he doesn't live w/me, he lives w/my ex-husband & he's going to FL tomorrow. I hope he has fun. About the only advice I can give you is I'm 30 & I feel like a 110yr old woman. All the things in life I've enjoyed I just can't do anymore. I, too, feel chained to my apt, I don't go out, for what? So ppl can stare at me ask me stupid questions like "Are you ok? Are you in Labor? Is the baby coming?" I got so tired of feeling that I had to explain myself to ppl by telling them "No, I'm not pregnant, I need a new liver", then have to go into the whole mantra of my illness, which, to be honest, is none of their business! I didn't want this message to sound negative, but I just want you to know that you're not alone, even though you feel alone, in your apt. They're countless ppl who are in their appt's too who wish they can go to the beach, run in the sprinklers, and on better days, I watch children play outside my building and get lost in thought. I have started another blog and I will be more than happy to share it w/you, and it has helped me feel like I'm accomplishing something without having to do physical activity, and, in a way, I feel I am. I have a blog & webpage, the blog I have (other than My Pre-Liver Transplant Journey that I tweeted to you www.pre-livertransplantjitters.blogspot.com) my blog is www.victorias-bestknits.blogspot.com & website is www.victoriasbestknits.freewebspace.com I would be more than happy to stream some video lessons for you and share them w/you via YouTube.

    I hope I'm not chatting on...but, please keep faith & know that God has you here for a reason & you're a strong woman who will see this through, and it won't be a bitter end, cause once those thoughts start coming, they will destroy you&consume you. I've almost succumbed to those thoughts & I cried so hard I could not stop shaking, I was a mess. Please keep the faith & if you ever need someone to talk to...we are here for you ;-)