Friday, November 30, 2012


I have need to write a long and fun update, I know this blog is long lacking a fun element. But right now, I am tired and I should be sleeping. But I keep putting off writing and if I keep doing it, I will never keep up.

I traveled down to London this week for clinic. I wasnt going to go, seemed pointless as there is much they can do. But then, I thought, London hmm retail therapy? And that seemed like a good idea, so I went for it.

I had a big order of craft stuff to get finished and ideally I wanted to drop it off whilst in London as it would save me on postage and therefore mean more profit. So the few days leading up to London, were hard work. I always put demands on myself for things like that, expect to just be able to do it, when in reality it takes a lot out of me, I just dont want to admit it. But I finished what I needed to at 11:30 the night before. I was fairly proud of myself for getting it done, as my stomach decided to play out and so a large amount of time was spent in the bathroom which also left me feeling wiped out. On of those marvellous after effects of anti biotics, they wipe out your natural ability to fight certain things.

But I took my mum down to London with me and we booked a hotel so we could have 2 days. It was fun. Visiting Camden and Harrods on the first day and Oxford street and winter wonderland on the second day. It was a little frustrating in that I had to give in and go back to the hotel on the first day and have a 2 hour nap. Getting there and camden had wiped me out more than I imagined. it was odd as I love Camden a lot and could spend hours and hours there. Yet this time, from arriving, I was watching the clock and wanting to leave. But, I was able to do some of it and after a long rest in the cafe managed back to hotel.

I am getting to know my way around London fairly well now.
After clinic, we visited Winter Wonderland, which is a big market in the middle of Hyde Park. I do love the market. So many nice things for sale, lots of wonderful foods and mulled wine, whats not to like about mulled wine.

There were so many fun things to see and do there including, a carousel bar. It was made to look like an old fashioned carousel with big wooden horses, except the horse were made into tables and the middle was a bar. And yes, it turned the whole time. Only very slow, but turned none the less. Oh it looked so fun. Alas I was the mother and apart from complaining at the price of everything, she gets motion sick and so I didnt get to go have fun. But defo another year I will.

Didnt buy that much whilst in london. Some candle wax and a pair of shoes was about it, though we did have a lovely meal in Prezzo and apart from that, it was nice to spend some time with mum, without the narkiness that usually acompanies time spent with her.

As for clinic, the reason I was down in london ha, well, I am not really sure how that went. Even though I was resigned to the fact that there was no change, my dr insisted on looking down with the scope anyway. Although my airway is open better than it was now I have this other tube in, it is looking very red and inflammed again. This is usually when the scar tissue begins to build up, which is a fact I think we were already resigned to.

He was muttering on about the professor and funding, though, he seemed like he was trying to say something he shouldnt be saying, or perhaps I am just reading to much into it. I think it was about the professor seeking some extra sort of funding or permission and though he thinks it is still going to be 18 months before transplant becomes a viable option, if we go ahead with the next stage of surgery, and put the cartilege into my arm, that dosnt mean my options are closed. If things continue downwards, he is still not giving up.

Its nice that he keeps reassuring me that he isnt giving up, but I dont know. I cant remember if I wrote about when I spoke to him on the subject of giving up. I wrote a big poetic entry about it, but  saved it on to my ipod, then lost my ipod before I was able to post it. (feel free to remind me if i did or didnt post it)

Things are in a big circle. The scaring will continue to form, it however forms quicker the more movement that is put on my trachea. Its possible that the amount of coughing that I do, is part of what make the tissue form so quickly. On the other side, having a trach in, makes me more vulnerable to infection, which makes me cough more.

He wanted to try some new meds or some more IVs but when I told him what I was on and what treatment I have just had, he said you are already under more care than I give you in that respect, but let me know if there is anything that I can help with. I seem to have this effect on my doctors lately. They seem stumped on what to do. My chest doctor, my liver nurse, my surgeon and my gp, all say, tell me what you need and I will sort it. They rely on me these days to tell them when I need treatment, when I need meds and which ones. I know that I am the best expert on my own body, but do I trust myself to make these descisons.

Alas, if all goes well, I shouldnt be in London now until my next surgery at the end of January.

I did want to moan about rest days, but I shall save that for another blog. Arnt you all lucky

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