Smiling is my favourite

Today I a much more settled.
Yesterday was hard.
I worte yesterday off.
I rested, recharged and looked to the future.

Today, I am calmer, happier, more at peace.
Yes things are hard at the minute, but they are getting easier.
In fact, today, is one of the easiest days I have had in a good few weeks.
My methods are paying off and the pain in my neck is going.
Today, I have been painkiller free, and I feel so much better for it.

But more than that.
I have begun looking once again to the future, as oppossed to just getting through the present.
There is so much on the horizon.
And, I can honestly say, I am so overwhelemed, by the amount of people pulling for me.
Be it friends, family or doctors.
Things are coming together, good news is just a breath away.
I still cant say much on it, dont want to jinx it so to speak.
But big things are on the horizon.
In fact, lots of big things are.

I am now half way through my first order on comissioned cards.
I have actully enjoyed making them.

Tonight, I feel at ease.
Tonight, I declare, that I am ready for the next war.
I can do this.
I can bounce back.

There are so many things in life coming together right now.
Life is moving forward.

Its a new dawn

I have felt crap all day.
Yet this evening I have begun to feel a little better.
My chest does not feel as weighted.
My heart not pounding in my head.
Perhaps a new start.
And sleep shall help.

I cant help but feel tonight as if the tides are changing.
Perhaps, previous news is sinking in and I am coming to accept.
I know I run that way. That any news makes me feel crap and then after a short while, my attitude towards it changes. I need this change, I need a new injection of positivity.
And this feels like it may be a good one.
That I have ridden out the storm without too much damage and now I can have some plain sailing.

I need some plans putting into place.
Some new ideas on living.

I still want to explore the past.
I feel the need to know more about where I have come from.
I still want to read the diary my mum kept while I was in ICU.
I have searched for it and can not find it.
So it must be in the loft, but I have had not had the energy to clamber up there as of yet.
Soon though.

I have been thinking back about my transplant too.
I think that I want to know more.
At the time I didnt want to know anything about the donor, but I think perhaps I do now.
I dont even know if it is possible to find out after so long.
Nor how I would go about it.
Its also something that I am not going to rush into.
I want to roll it around my mind a lot more first.

I think perhaps its time for a blog update too.
Perhaps a new blog or blog title.
What do you think.

I want to find my own way to make my mark on the world.
I want to find my own path and have it be an interesting path.
Today is the first day of the rest of my life
And life is what you make it
And I want to make mine great.
I have the power to do that.
I can break through these damn moods and I can do amazing things.

Oh look, Mr Bump sweets. How cute are they!

And the tides turn

So I arrived in London about 2ish on Sunday. Took mum out to Prezzo for dinner, it was very yum. I had rissotto and she had chicken.

Got to the hospital just after 4, where I was addmitted to ward C, funny to be on C ward considering the ward I have been on at home was C ward. I was addmitted to what I reffered to as the fish tank! It was like a glass room so that you could be seen easily from outside. Kinda daunting at first as it was technically a HDU/ICU so all the monitors and charts where around the room.

There was a lot of uncertainty about who I was and where I should be and it was decided that first thing in the morning I would be moved to another ward. This was later changed and they decided to keep me where I was as I was booked in for a HDU bed post op.

The next morning I was awoken at 6 to get ready as I was first on the theatre list. My old ward used to insist on a shower with anti bacterial soap and fresh towels, followed by clean gowns and surgical socks on and the bed was changed so that that was also clean. But in this hospital it was more so heres your gown, im going to pull the cutains while you get changed and that was it.

So I sat around for ages and at about 11:45 they finally said ok we are taking you up now. Got up there and they said, sorry not ready for you just yet, we will call you back in about 30 mins. 2 hours later they finally came for me. Canula went in fairly easily and I was off to sleep.

However, I hated waking up. Usually it does not bother me much but this was the worst wake up I have had. When I was first coming around, it felt like there was something heavy sitting on my chest. I tried telling the nurse this, but I just couldnt get my arms to work enough to get my hands near my throat. They kept telling me to relax. Eventually I was awake enough to tell them, so they sat me up and listened to my chest and such. Nothing sounded out of place so they just monitored me. The pain control was better than my hospital at home and soon I was back on the HDU.

Slowly the IVs came down, as they had been pumping me full or hartmens solution and then the monitors came off. Slept a lot but managed some food and drink then got a major craving for McDonalds. My friend came to visit, which was fun, so I got her to bring me a shake and fries. yum yum

So anyway, I spoke to one of the registras as my surgeon was busy. Bascially they now think that the way forward would be reconstruction using a piece of my rib to graft the cartilage.

They want to fit me in as soon as possible, so there talking of doing it in 6-8 weeks. It will be a day in surgery to do it, IE at least 4 hours and I will have a sore throat as well as a sore chest.I will also be in for approx a week.

I dont know a whole lot about this procedure yet. I have a vague memory of looking into it when I was first diagnosed but it was ruled out fairly quick. We shall see. I need to do some research and see where it leads.

But overall positive. They think they can do this rebuild and think they can get the trac out in about a year. So yeah, good news.

How great would life be if we lived a little of it everday.

So its time to stop being whiney.

Why should I be unhappy about not being ill? (double negative make a positive uh im rubbish at grammar meh)

No I dont have tumor, but I do still have the symptoms, so I am not making it up. I am also recovering from a rather intense few months where I was pretty ill. They dont keep you confined to bed rest in ICU for nothing. Yes I do feel crap at the moment, but I have beaten worse this. I have come far.

Tonight is a night of reflection. Yes I have had some pretty big set backs and I accept that, but what matters is that I keep trying, you never know what is around the corner right? When I was in ICU with my transplant, my mum took photos, when I would let her. Most of the time I sulked and said your taking a photo of me while I look like this, of course I wasnt always awake so it dosnt always work like that. I have 3 of them on my computer, i must find the others and upload them at some point. The three I have are not very good as I think I had to photo them to get on here, again will get around to fixing that at some point. But the purpose of these photos, was for when I started to get better, I could see how far I had come.

These two are from the first hospital I was and so was before my transplant and tracheostomy.

Ha check out the tan, gotta say I didnt look to bad for liver failure. Tube in my mouth was to keep me breathing, one down my nose was to keep my stomach empty of things such as bile and acid. Central line in my neck to give IV medication and such, catheter in my bladder to drain out urine, lots of medications including knock out meds and pain meds.

This was was taken post transplant (which happened on 14 December), but must have been after christmas as I have my trach in. I am also guessing it was before my birthday as I still have a feed tube down my nose in this one, but my stomach could not tolerate food, so I later had a peg tube put through my abdomen into the lower part of my stomach.

                                     

You cant really see it on this, but there is a thick red line across the pillow going to the dialysis machine as my kidneys shut down, which you can see looking at my size difference from the top picture. I just ballooned up in a  matter of days. Oh and the dude in the white coat, nope thats not my doctor, thats Jimmy Savile, not that I even knew who he was, or where I was for that matter. I also have a blood pressure cuff on instead of the usual measurement in ICU with an arterial line, as they had to take out the least important lines when I bled out and started getting clots.

So if I can get from that, to the point where I was able to partake being a full working nurse, I can improve on where I am now. Its just going to take some work and some time. But there is no rush. I will get there when I can.

I will be going on holiday in 28ish days, for almost three weeks. And when I come back? well then it will almost be time to go to London. I am going to try to use the holiday as a rest period. Nothing expected of me. I wont be doing any of my usual online work, I wont have any appointments and I will have time to sit and read, sew, play with my camera and mess around with photoshop. I can rest fully and take care of myself properly. The sun, will hopefully also do me good. Plus, being away with my parents, I will more than likely end up in a decent sleep pattern of a night.

Once, i get back? Then I think it is going to be time to get my butt into gear at getting well. I need to cut the crap out of my diet and lose some serious weight. Ideally I would love to lose about 5 stone, but even losing 1 would make a huge difference, so that will be my first goal. Im not going to go on any stupid crash diet nor am I going to join any expensive club like I did last time. Im also going to try to avoid weighing myself weekly and such as I know if i dont have a good week, I will just throw the towel in. Im just going to cut the crap out, cut down on my bread intake, increase my fruit intake and see where that goes. Im also going to try to force myself to do 40mins on the wii every night, and might thrown some running up the stairs in too.

The doctors can only fix so much, the rest I need to take responsibility for and do myself.