purple

There once was a time when I read all the blogs that I followed, usually within an hour of them being posted. The inspiration, the words, the pictures, used to be what I thrived on. Yet now, I barely find time to update my own blog never mind read others.

I want to keep up with writing. It has proven important in so many ways. it lets me let off steam and gives me a chance to reflect. It also lets me fill in gaps when my memory fails.

I guess this is my apology for not commenting and writing enough. Im not sure where my time has gone really. Well, I guess a lot of it has gone into helping my Dad. We had an extension built on the house before Christmas  Since then, we have spent a lot of time working on decorating and refitting stuff. Mainly the kitchen. the kitchen is a huge task, but it is coming together slowly. And of course if power tools were not fun enough, I get to do the geeky stuff like wiring.

Did I mention that i coloured my hair?

Ignoring the lame selfie shot, you can see the purple. Under some light, it looks bright, under others, more of a brown, but i like it.

Oh and I was in London last week for clinic. That was fun. (enough sarcasm) My surgeon hardly had time to see me, so things were pretty rushed. He had a quick glance down my airway and said it didnt look to bad, but he dosnt want to do anything with it for a while. Basically, I am going to be going back in the middle of May under his care. Between then an now he wants to do as little as possible. Then when I go in, he is going to take the trach out and leave me for a week, so the hole closes up. He wants me throat to get as bad as it can, hence why I will be in hospital to deal with an emergencies. He needs to know the areas where things are at the worst, so that he can repair them.

It is a very scary thought, especially as i know how quick i can go down. If i am honest, the thought terrifies me and and plays hard on my PTSD issues. I know that I will be in hospital and i know the team will be aware and keeping an eye on things. But that dosnt take the fear completely away.

I am just trying to forget about it for now. I have 8 weeks to get through first. And next weekend should be a fun one anyway. so yay.

Whilst in London though, it snowed. Not the white fluffy stuff, but the stuff that comes down hard and wet for 10 minutes untill you are soaked and then stops and the sun comes out. It was odd and horrible at the same time.

I took Mum on the eye and you could see the sky change colour across London. Just wish i had had my proper camera with me.

Busy

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

London

Alas, I never did get up to an update last week.

So yeh, last week I went to clinic in London with my surgeon. It started off stressful. I listened to the traffic reports before leaving and I know the route I was taking, I had traveled a couple of weeks before with no traffic. There were no road works and so I set off with plenty of time, but expecting a smooth journey.

It wasnt smooth. The area I had to travel to the station at, involves going over a bridge, you know that pretty green structure on the Cathedral City adverts? Yeh, its not a nice bridge at all. It is a main area that gets a lot of traffic. It is also an area that goes suddenly from 5 lanes to 2 lanes and within a few meters of getting down to 2 lanes, you have to be in the correct lane for your destatntion. So it is often busy and I have previsouly spent more than 3 hours sitting in traffic waiting to get across it. However, as I say, I had checked, it was empty.

By the time I got to the bridge, it was no longer empty. The radio were doing all the travel reports saying how unusual it was for the traffic.I had also had a slight mix up with the times, thinking that the time I had in my mind, was the time it left the city, not the time it left the station I was going to. So all in told, by the time I got to the station and parked, I had missed the train.

My ticket was valid on other trains, but it was an hour wait for the next one. So an hour in the station and 2 hours on the train, had my anxiety levels prickling. I dashed getting across London and was pretty impressed at how quick I managed to do it.

So I got into clinic, in time to see the surgeon before he dashed off, though I only got 10 minutes.

From what we managed to discover in that 10 minutes, is that, my upper airway sounds awful, but he wants to investigate, but the trach tube also seems to be digging into the side of my airway. So to put it simply, I am back in hospital tomorrow, in order for him to have a poke around and see if he is able to move the tube about a bit and to come up with a course of action.

So tomorrow, it is back to London, all set for surgery on Tuesday. fun eh.

Wings

 I have a tshirt with wings on the back! How cool is that.
Though it is a crappy pic, but you try taking a pic of your back.

Today was Liver clinc. I went for my bloods for clinic on Monday, where I was actully surprised. Usually, there are about 30-40 people in front of me in the blood room quee, so i went aromoured with my book and music and such. But upon entering the waiting room, I first noticed how quiet it was. When I sat down, and looked at my number, there were 2 people in front of my. 2!! That has never happened before. I barley had time to remove my jacket and catch my breath. But it was oh so wonderful.

So, clinic, in short bloods are all clear, Liver is working perfectly, kidneys are slightly overworking, but that does them no harm and my med levels are all fine. so yay.

I do however have a few things that need looking at. My pulse and blood pressure are once again concerning.  My resting pulse averages at about 110 bpm, when it should be about 70-80. As I am already on meds, I need to get a review on that one.

I also plucked up the courage to mention my worsening bowel issues, which they found a little concerning. The team are going to review that one and get back to me. It could be a number of things and my guess is adhesions from all the abdo surgery. However it is an area I struggle with and really dont want to go through many of the tests. So, that is one they are going to get back to me on. So could end up with another clinic. In a way I want to say, forget it I am fine. But i know its getting worse and more and more painful. It just feels sometimes like my body is fighting against me.

Apart from that, everything else is going well. Breathing is behaving, though I have had to go back on the painkiller for a day or two as I have pulled a muscle from coughing. I have to keep it as pain free as possible, else I subconsciously stop coughing and thats when problems arise.

Anyway, coughing I can deal with and breathing I am managing. So all good I think.