Blog Q&A

I know, how much blogging am I doing?! 

I'm actually loving writing again and it's part of my plan to get out of a pretty dark place I've been in. Anyway I've been enjoying thinking up ideas to blog about and taking photos of what I'm up to 😊

I've had some lovely comments and messages from you guys. One actually reminded me that I kept saying I would do a Q&A session here with anything you wanted to know. Well I'm all organised now, I even have a book I'm writing ideas etc in so if there is anything you fancy asking, fire away. 
I think there is some wariness about what you can and can't ask, what might upset me etc, but please, let me be the judge of that. When I get enough questions I'll do an answer blog. You can tweet, email, comment on this post (you can also do so anonymously if you'd prefer). This blog has always been a very cathartic and healing place for me so it seems that this might be a good idea. If you know someone waiting for transplant or anyone who needs support, send them here to ask anything they want to know, I might not know the answer but I'll try my best. 

Also, doesn't have to be transplant related! 

Right, steroids are keeping me awake with nightmares (hence blogging at 02.15am) but I am absolutely exhausted so am off to try and sleep 😴😴😴😴



  1. I don't really have a question but an idea for yout blog have ever heard of Desert Island Discs well is a BBC Radio 4 programme

    Guests are invited to imagine themselves cast away on a desert island, and to choose eight pieces of music, discussion of their choices permits a review of their life.
    At the end of the programme they choose the one piece they regard most highly. They are then asked which book they would take with them; they are automatically given the Complete Works of Shakespeare and either the Bible or another appropriate religious or philosophical work. Guests also choose one luxury, which must be inanimate and of no use in escaping the island or allowing communication from outside. I though of you because I know your love music and it sounded a lot better that asking a lot medcial questions hope you doing well

  2. My wife has breathing troblems as well and we are intimate I have to take things very slow I what know if thats the same for you

  3. Hello, I am the Anon from last time whose words were seemingly a little inspiring. ^///^ Actually, I don't have to stay anon, I am Carola from Germany, my mail ad is Chepseh@web.de, I also send you pre-transplant an encouragment mail with a quote from Marie Antoinette - but I think this feels ages ago for you and me both.

    Well, if you really really real-ly want my unfiltered questions ... here they are, or at least those that come to my mind right now:

    1) Following your twitter it reads mostly like you're still having a pretty bad time most of your days - not breathing-wise anymore but pain-wise. Are really "good" days still rare, or do you use your twitter also as a bit of a "vent", and there are more good moments than we might think?
    I mean this as objective as possible, I know it sounds a little like "Come on, tell us you are better! Tell us!" :( - and it sucks if people demand that.

    2) Sorry for the ignorance, I still don't quite get why it is currently very important for you to take steroids. To build up muscle mass? More reasons? Other reasons?

    3) I read keeping pets is a health risk for post-transplant people, yet you got a dog. Is the risk a myth, or do you -want- to risk the risk because dogs are awesome? :)

    4) Is there something like a severly handicapped pass in the UK? Have you got one? Is it beneficial, or actually not that helpful?

    5) Who decides on your medications? Reading your last blog post I got a bit of the impressions that it's "joined" through the opinions of several doctors, not just one?

    6) Does Harefield offer something like support /self-help groups for CF and/or transplantation patients? Did / Do you partake? Or are you more connected with fellow sufferers through Internet & Co?

    7) Do you still plan on making a book out of your blog posts one day?

    8) Looking back, what do you think made you endure, what helped you the most in waiting for so long for a transplant? If I remember correctly, nobody before you, at least in the UK, could hold on for so long in their waiting time for a new organ?

    9) Even though you suffered and still suffer so much, even though you witnessed so much suffering, some of your blog posts seem to imply you still got some sort of spiritual belief. If the answer is yes - how come? (Ooof, does this sound harsh? I am not one of those rabid new atheists. The question is inspired by the debate Gay Byrne and Stephen Fry recently had, some things Fry said about illness made me think of you)

    10) What are you goals for the nearer future?

    Ok, enough of snooping around in health issues, some other questions of mine would be:

    10) What are your favourite places in London in general?
    11) What is your favourite museum in London?
    12) What is typically British in your eyes?
    13) Who is your favourite comedian?
    14) Who ist your favourite actor?
    15) What are your favourite movies?
    16) Jane Eyre or Pride and Prejudices?
    17) How do you find your customers for your cake decorations? Internet? Word of mouth propaganda?
    18) And OF COURSE: How do you think of "Love never dies"? Horrible? Bearable? ... Likeable, even?