Lightening, Clinic and number 6

I can't believe how long it's been since I last updated. It's been a really difficult month for me with lots going on so I'm going to attempt to write it all in a list.

1) I have been struggling A LOT even for me. Everyday things are getting harder and harder each day with me needing more and more help from my mum. Things like getting washed/dry, eating and even walking the 20 steps to my bathroom have been just too much most days. Add to that the hot weather and pollen allergies, and life has been pretty horrendous. I never wish to sound preachy so try to avoid typical "most people don't realise how lucky they are" statements but it has been very hard to watch people out enjoying the sunshine, walking down the street without a care in the world. I feel like I am in a different world. Stuck in my bedroom, curtains drawn fans blazing, lungs feeling swollen and irritated, unable to catch my breath and the air all around me feeling polluted. Whereas I used to go to bed and think "tomorrow might be a bit better" I realised lately that that idea hasn't come true in several months. It has been unbearable trying to come to terms with the fact that tomorrow isn't going to be better than the day before. Some people will think that sounds negative but it's simply the stage that I'm at with my illness now. I am finding it nigh on impossible to cope and a few weeks ago I just cried evry single day. When I first went on the list the hope of transplant was enough to sustain me each day but now, 4 years later it just isn't enough any more. By no means have I given up but mentally and physically it is just worse and worse. My world that was getting smaller is now virtually non-exsistent. I barely go downstairs now, let alone get outside. Just getting my treatment and basics like meals and washing done leaves very little time (and zero energy) for anything else.

2) Last weekend was a piece of bad luck too far. After suffering for a few days with the heat I was praying for rain to make the air a bit clearer. I was so pleased when there were faint rolls of thunder....how wrong I was to be glad! Mum and I were both in my bedroom when a huge bang and flash of lightening lit the sky, at the same time there was a large flash of light in the corner of my room. We were terrified and it took us a second to realise what had happened. Our telegraph pole had been struck by lightening, knocking our phones and internet out. When the engineer came out to us after the bank holiday he said we were extremely lucky. We happened to have a power surge protector fitted where our router plugs into the electric, if we hadn't our whole electrics would have gone too and caused a huge fire: we were at even bigger risk with my oxygen piped all over the house. Our router and phone were completely fried inside and we have had lots of expense/ hassle getting it all back up again which we really didn't need. Very scary experience.

3) To make matters worse, because I had been so ill I had got very behind on my uni work. My tutor had been lovely, as helpful as possible and given me the maximum extension she could 21 days. I had to have the essay in by Tuesday midday or else the online system would no longer accept it. Then our internet went down with the storm. It was absolute hell! I was writing right up to the wire trying to get it done, pushing myself and my body past its limits. I felt awful but was determined that I wasn't going to let my CF take away this little piece of normality that iis so important to me. It was completely horrendous trying to think how I was going to get the essay onto someone elses computer to send/ having to push myself even further to get out and over to somewhere else in order to get it sent. In the end my tutor came to the rescue again, letting me send her the essay by post, and I finally got it in on Tuesday morning. Now I have a final 4000 word essay to get done in the next couple of weeks and exam next month. It is going to be a bloody struggle to get it done but I will try my hardest and try not to let it beat me.

4) After pushing it to the limit getting my essay ready for Tuesday, I then had my 6 monthly visit to harefield for clinic. It was a really long day and I barely scraped through it. It takes such a lot out of me. My dad felt really ill on the Tuesday and had a high temperature so to add to the drama we had to find someone else to drive us to the hospital, as I couldn't risk catching whatever it was he had. I had the usual ECG, heart scan, x-ray, lung function and blood tests. During my lung function I thought I was going to black out with the effort involved, I saw spots dancing in front of my eyes. I told the doctor exactly how bad I've been feeling, but left feeling dejected; they were still trying but obviously there was no new news for us. I was exhausted and could barely move all evening and the pain in my lungs from all the exertion was terrible.

5) Yesterday I was lying watching tv just before dinner at about 6.30. My mobile started to ring and it was Harefield. The co-ordinator that I'd seen the day before was chatting away and my first thought was, " Oh no there must be a problem with one of my blood results". Imagine my suprise when I was told that they had lungs for me. All the tissue typing had been done, it was a great match and I should come up to the hospital. We got together our things in a daze, could this really be happening so soon?! Every call is different and this time I was extremely calm. As the evening went on I began to think this really could be the one. I didn't need any of my tests done as I'd done them the day before. I met one of the surgical team who was so kind, I felt instantly safe and like he would take good care of me. The Dr on call was lovely and put my canula in with little fuss, I met my anestetist and was told about what I could expect to happen. My pre-med was written up and I signed my own consent form. Then my hopes came crashing down again. I saw the co-ordinator reflected in the mirror, just as she came through the door, I knew from her face that it was bad news. The donor lungs had been examined inside with a bronchoscopy ( small camera) and they were no good. Her words were " theres no point in putting in rotten old lungs when you already have a pair". Since then I have just felt numb, empty. I can't describe the disappointment, gutted doesn't come close. I wonder if it's ever going to happen, will everything ever come together just right like it needs to? everyone says that 7 will be my lucky number and well it might be, but they don't realise that so many people have said the same thing for number 1,2,3,4,5 and 6. I need help so badly now, life is becoming undoable. At the moment I can't think of words strong enough to express how I'm feeling. I have never felt more run down. Everything written in this post plus all the problems with antibodies last month, I just haven't had time to recover from any of it. Bad luck keeps on coming and I nevr seem to do anything but struggle from minute to minute. Having a call reminds me that life has the possibily to change but false alarms knock you down so hard; taking the thing you dream of most away in an instant. It gets more and more difficult to get back up again and keep on "keeping on" every single second of every single day.
As always please keep the amazing donor family in your thoughts,they are suffering in ways I can't imagine.


  1. (((Tor))) I can't put into words how much I feel for you after reading that post.
    You wrote that it's getting more difficult to keep on keeping on, but you are doing it, and that in itself shows what an amazingly strong person you are.
    I truly hope that you get your call soon
    Dawn xx

  2. As usual your blog has moved me so, so deeply. I cannot imagine what it's like to wait upon something that is so out of your control, but I can only pray that your day will come soon.

    Ever since I first stumbled across your blog during my CF Fundraising efforts, I've tried to persuade people to sign up to the donor register. I have got 6 people to sign up so far which might not seem like much in the grand scheme of things but you only need ONE match to totally transform your life.

    I hope you find your lungs soon. I don't know you, but from what I've read you're so inspirational and deserve this chance.

    Hopes, thoughts and prayers,

    Gemma xxx

  3. Thinking of you and hoping, hoping, hoping....

    Reiki hugs to you


  4. Hi Tor
    This is the first time I've written anything to you - I saw your twitter after someone retweeted you and I have followed you since!
    I am so sorry that you haven't had the call you so need yet, and I will remember you in my prayers.
    I recently read a brilliant book called 'Code Red' by Andrew Drain - it's about a surgeon who gets leukaemia and about his battle to come to terms with his illness. It has a Christian spin on it; every other chapter is one of his sermons on a book called Job from the bible, but the rest is quite easy to read from a non-Christian perspective. I found it immensely encouraging and inspiring, and I just thought it might give you that bit of encouragement to keep going.
    I just wanted to send you a few positive vibes and to let you know that there seem to be an awful lot of people around the world (mainly via twitter!) that seem to really care for you and hope that you get the call that you want. I pray that you continue to have the strength to get through each day, I give thanks for your family who seem to be so supportive for you, and I pray overall that you get that call soon xxxx

  5. I don't think there's anything helpful or reassuring I can say Tor but I'm thinking of you.

    Take care,
    Moll x x

  6. The calls, seem to be coming closer together and each time you get further with it. You have to be pretty close to the top now. It sucks having to wait so long, but with some luck, perhaps it wont be so long now. You can be out enjoying the sun once again. (with the right sun cream of course =] )

    Do you speak to any friends who live close by? Maybe you could have them come see you for short periods? I find that often breaks up the day for me, when i am up to it.

    Thinking of you

  7. (((((Tor))))
    I have never posted before but just wanted to say how much you are in my thoughts. My husband is suffering from cancer and sometimes it seems there is no hope or good times ahead. I am always surprised that we just keep on going - hoping and wishing for better times. We have to mentally pick ourselves up and start again. So hard but you are very strong inside and you are an inspiration to all especially to me - healthy but watching someone i love in so much pain. I hope that the right call comes soon. Anna x

  8. Thinking of you loads, can only imagine the extent of how you feel but stay strong and keep fighting, you are doing so well xxx

  9. You inspire a lot of people. Good luck

  10. I know I wasn't on the list nearly as long as you but I do know how it feels to get so many false alarm calls and have people tell you the next one is the one, god I even kept telling myself that. As time went on though it became harder and harder to cope and I thought all my calls where going to be false and it would never happen to me. It did though and I really think it will for you. Keep hanging in there Tor your a strong girl and you have gotten so far, your strength will carry you through!!

    V xx

  11. Hi Tor

    I was really sad to read this - sounds like you're having such a tough time. I was also amazed by your strength in the face of this. Wish you all the best and hope you get that call soon!
    Sending love, strength, hope and positivity your way.

    "till now/ we had not touched our strength" - Adrienne Rich

    Rosie xxx

  12. You are an inspiration to all.

    I do hope things get a lot better soon for you.

    Stay strong. Big hug.


  13. Just to let you know I'm reading. That call will come and they will be the right ones to give you the best chance. Keep on with your uni work and stay mentally focused. It's just as important as you know. Just keep going tor!! Rick