My Generally bitter ramblings.

Growing and Love

2012-01-28T01:17:00.001Z

Its strange how people grow and change.
Its strange the things you grow to regret and the things you dont.
I went through a big phase of regretting losing my school friends.
At the time, I was angry about it, but I do understand these days.
At 17, my issues, where not comparable with them.
Whilst I dealt with learning to walk, surgery, hospitals and meds, they were dealing with college deadlines, assigments and love. Whilst I worried about things such as rejection, they worried about what to wear and where to go partying.
I have come to piece with that and although I do miss some of them and often find myself wondering what if, i am at peace with it.

Today was one of those days were I was face with a huge pull back to my past.
I stopped for bread on the way home from chemo with Mum and there working in the shop, was a boy from my past. not just anyboy, a boy who holds a place in my memory.

I would say that he was my first and only real teen crush.
Of course, I was one of the dorky type girls that didnt really give much care to apprence in school and so, he was way out of my league. In fact I barley spoke to him for the first year or so.
I used to host a lot of parties through school and he did come to a few of them. Towards the end of school, at one such party, I was alone with him for a while and he kissed me.
I was shocked. I didnt want things to turn sour, nor did I want to undergo the cruelty of gossip and so I never breathed a word of it to anyone, nor did he.
And that is where is things lay for a long time.

I started going out with a boy from a differnt school, who turned out to be his cousin.
On the last day of school/exams, we all went drinking in town. Somehow, I ended up in a quiet part of the club with him. He bought me a drink, we had a short hug and then we both walked in opposite directions.

He was still on my mind though.
So much so, that my most vivid memory from ICU, involves him.
I was in the side room, my nurse outside my door and I was hallucinating.
I was staring at the tiles on the roof and one of them lifted up, he was up there, looking down and laughing.
He was hiding on purpose and I was laughing at him.
As I was laughing, I sent the alarms off on the vent that I was on.
The nurse asked me what was going on and I told her about him being up there.
She looked at me, leaned on the bed and asked who he was.
That was the first time I remember realising that I was hallucinating.
My mind kinda clicking in two. I could rememeber seeing him, so clear, and so there.
And yet, this nurse didnt know him, she didnt know him, because I was in hosptial miles away from home and not in school.
How could two things so far apart exist together.
It was a long night that night. Trying to work out what was real and what wasnt.
But he stayed on my mind.

I have bumped into him a few times. The first few times he said hello and asked how I was. rumors of my close call had spread and a lot of people where curious, so I always put it down to that.

But when I saw him today. All the memories comes flooding back.
I recognised him instantly. Those piercing blue eyes. He hasnt changed.
He saw me, but I dont know if he recognised me.
I turned round and we caught each others eyes, but I quickly turned back.
I do wonder if he recognised me.
But thats more of what ifs. And he is still way out of my league.
Its just strange how you can suddenly be filled with everything feeling from the first time I saw him.

Some more tests

2012-01-27T01:17:00.001Z

Today was respiratory clinic.
Ever get the feeling that a doctor is clutching at straws to diagnose you? I think it irks them when you don't fit neatly onto their little boxes.

My cough is apparently disgusting, but I guessed that. He went into this big long spiel about how even if my trachea were normal, chances are I would still have a lot of chest issues as my lungs are so still scared and permanently inflamed.

He asked me about my sleep and the nurse in the room suppressed a giggle while she told him that I had drifted off in my mums shoulder in the waiting room. He how my sleep was and mum told him about me being able to sleep through things like the phone or my alarm clock.

So the next method of trying to control my body, is to go for a sleep test. Of course my dad has since quipped in about how that's one test I should pass with flying colors.

I hope I don't end up with an apnea diagnosis on top now. I don't know how that would effect things, but another machine in my collection in my room is not what I want. But if it helps then we shall see I guess.

Tomorrow is chemo morning and then I get to see my niece for the weekend before being off to London for surgery again. I have not seen her this year with all the traveling. I can't wait for one of those long cuddles.

dare to hope

2012-01-25T23:19:00.000Z

Today has actully been a good day.
I ventured out for a couple of hours and didnt come home exhausted.
Dare I hope? Dare I think, that perhaps maybe, this time is it, that it has worked.
That the problems along the way are gone.
I know it is a week since laser, so technically I should be good about now, but after last week, I began to think things were so much worse. That I would struggle for the whole 2 weeks between.
I dont want to get my hopes up.
I am still tired, but breathing a little easier today.
Lets see if tomorrow keeps it up.

Arms

2012-01-22T00:12:00.001Z

There is a habbit that I need to get out of.
I have this thing, where I hate having anything on my lower arms. Even when I am wearing a thick jumper, I find myself pushing the sleves up to my elbows.
Normally, this is not a problem, but with all the recent hospital trips, I am begining to look like either a drug addict or a battered wife.
Bear in mind that these are almost a week old.

I am working on tellimg my parents the hard facts of what it going on, but I cant bring myself to say the words direct. I am telling them gently, letting them get used to each step. I think Dad gets the situation more than Mum right now. He looks at me with such sorrow and just says he does not know what to say or suggest. Mum seems to think that I will just keep going as is, that maybe after one of these surgeries everything will suddenly be ok.

I am trying to keep up, but right now it is hard. After 12 hours sleep last night, I helped mum with the shopping day for 2 hours, then came home and slept for another 4. the exhaustion is the killer. Where I used to be able to manage flat ground at an even pace without getting breathless, I find now, that even that leaves me breathing heavy. It cant just be unfitness.

I messaged my niece earlier, about how I was going to try and see her before my next admission. Her reply,Sounds fun, just take care and be careful cos to tell you the truth you mean the world to me and the world would not be the same with out you.

She knows nothing of the newest developments. In one way, I want to hug her so tight and hold her close, while in another, I want to push her way so she dosnt get hurt. To the world, you maybe one person, but to one person you maybe the world.

Right now, the lyrics to this one, seem to be the most prominent.

Glory Playing

2012-01-19T23:42:00.000Z

I cant seem to get the words straight in my head that I want to speak.
What I posted yesterday was correct, but there is so much more.
On one hand, I am so grateful to be here and to have had the opertunties that I have had.
But on the other hand, I am so annoyed, angry and pissed off.
I think its normal to have both lots of feelings, but right now the anger is paramount.
I cant help but feel that things dont have to go this way. That they could and should be different.

I have always had this notion that doctors are meant to fix and cure.
But it feels right now, like they want to fix the easy and gain the glory while the harder to fix are left hanging, maybe given a glimmer of hope every now and again.
But the complex patients are mounting and the staff dealing with them are also getting pissed off.
Some of the best nurses are leaving the ward as they cant deal with the way things are.

When I began this whole look into tracheal surgery, I was promised a cure.
It was a rare surgery, only a handful done every year.
Very complex and very specialist.
I didnt mind that.

But now, there is evedince that it is not working.
But the surgeons refuse to even look at the patients.
Apart from the anesthtic room, I have not spoken to my surgeon in at least a year.
What is more, there is no more of this, handful of procedures a year done.
Last Tuesday, not one, but three reconstructions where performed in the one day.
That would be huge enough, but that was as well as all the other ENT cases.
If I recall, it was 25 theatre cases in one day to one ward, including 3 new trach patients.
How many of these know how things stand?
Are they being told of the new developments that are occuring?
Or do the doctors not even see it as they dont see patients?

I used to have a lot of faith in my surgeon. But right now, if I cornered him and asked him to recite to me any of my surgical history under him, I dont think he would have a clue. I dont think he could tell me what number of radicals I am on, or how often I see him.

To see a new patient come onto the ward, in pain and scared out of their mind.
First ever trach in, no idea whats to come.
While 3 of you sit in the corner of the ward debating how you wish you had never started down this path.
The next morning, the scared patient writes to you and asks how come your in after you have had this miricle procedure. How do you answer that? The surgery is tough, the recovery is grueling. It is a huge adjustment. At that stage, to take somebodies hope away would be cruel. But is it right to lie?

I dont know what the future holds for me, but the longer I try to see it, the less I am able to see this surgeon as being the best bet.

Be careful what you wish for.

2012-01-19T00:46:00.000Z

For so long, I have wanted to meet like minded people in the same sort of situation as me.

I have found a few people, yet it has always been differnt, all in differnt postions or places of treatment.

This week, I met two people, all in the same sort of place as me, all with the same views and all stuck.

and after all this time of wanting to meet others, I wish I could take it back, I wish they were not going through this. I want my illusion back that tracheal stenosis is rare and that those whose treatment fails is even more rare.

But the illlusion is shattered and I cant go back now. and it hurts so much to see them suffer. It hurts.

What adds to that hurt, is comparing experinces, I am slightly ahead of them, having had 3 radicals compared with there 1 and 2 and so they look at me for hope and I do try to give it, but this week, my hope too has been broken. And this time, I think it may take a while to repair.

Let me play the last day or so back.

The weekend was shrouded in pain and panic, though I had a great time. I went into hospital Monday evening, you can tell I am a regular as I dont even get shown to my bed these days, just told where I am as differnt staff shout hello.

Monday was a late night. I started talking to the 2 girls on my bay. One is the same age as me, from Cornwall and one is older, with kids and lives not that far from me. We compared stories, not just medical, comments off rude people, excusses we have given, reactions and tales from ICU and hallucinations. We all have very dark senses of humor, but I think most people who go through similer things have that in common.

What we found more so that we had in common, was that we had each been told that things were going to get better with the next surgery, until that fails and you start again. We have each been told, that it is very rare for the radical procedures not to work.

Surgery the next day, went ok. The stent was removed with no trouble. I awoke in the recovery room, I recall asking for pain meds as I was in agony, then I watched the nurse go to get them, whilst she stopped by the nurses station to have a chat and then speak to someone in the staff room. By the time I got my pain meds, pain was the last thing on my mind.

I couldnt get the air in easily. I was using my accessory muscles. I told the nurse this, to which she told me my sats were fine so I was fine. I thought here we go again. I think my problem at this point, is that I remain to calm. I told many people I couldnt breathe, in the end they sat me up more, but I had already hunched over to give extra support to my chest. My muscles were burning so much.

At this point, my surgeon walks past, seeing that I was awake, on his way past he came to tell me that everything looked good. To which I gasped at him and said, in very broken sentence, Great. Just. Wish. I. Could. Breathe. Now. He kinda looked at me and then said, oh lets see who is caring for you. One of the anesthtic docs came in and she wasnt happy with things, then my actual anesthtic doc came in and lsitened to my chest and said I was badly ratteling and had a restictive wheeze. High flow oxygen was started and I had a large adreneline nebuliser. Within 30 mins, things had settled. There had been swelling upon removing the stent which was what was restricting me. By this point, I was exhausted, but had to stay in the recovery room till I got the all clear, so a 30 min stop turned into a 4 hour stop.

Later that evening, I spoke to one of my favourite nurses, who is leaving the ward. I asked her some general questions. The main one being, how sucessful she thought the radical procedures were. She said if the first one works, then great, but if it dosnt, or if its post intubation stenosis, then the chances are you are going to need a more and more radical procedures and the best you can make of things, is dependant on how long oyu can go between lasers and your quality of life inbetween. Why couldnt anyone have said this long ago.

I also found some more info about my last procedure. I was meant to wake with a trach in place, but there were complications. Because of the amount of surgery that has been performed on my trachea, my trachea has now hardened like bone. The fear is, if they put a trach in, my trachea will literally shatter, leaving me no option but the trach.

And so I conclude, that I am rapidly running out of options.

Every radical procedure I have gotten worse after. Every laser treatment takes me longer to recover from and I never gain back what is lost. I cant keep living with surgery every month, its too much, its not way to live, and everyone leaves me more restricted than the last.

Transplant has not been mentioned since.

Now is where we find out how far I am willing to fight for life.

I am back in 2 weeks for laser. If there is scar tissue, I am going to demand to see the surgeon in clinic the next day.

If radicals and laser no longer work, the only other option I can see is to go for the permant trach.

but neither is that straight forward.

If it goes in, it stays in, there will be no chance of it coming out ever. It will be my only airway, so should it accidentally fall out like last year, it would be an emergency situation.

If my trachea split, it would also mean, that my voice would gone.

Is life suistainable, when you cant talk?

But that is not all.

As we found with the trach last time, my body disagreed to it. It was constant infections and the strain on my windpipe made it close more and more.

With a trach, I would say I would get perhaps 18 months.

I am so thankful and so happy to have gotten the chance that I have, but right now, I am running out of options. Laws are not going to change in time.

When I talk to my surgeon, if he confirms all of the above, then I think the next question needs to be, what will happen, how will things progress if I stop treatment. And what support can my family get to deal with that.

As morbid as it sounds, I have to be practicle at this stage, there is no point in prolonging the envitable when it only draws out the pain and suffering of all involved.

Something has to give.

There has to be more.

I have slowly started speaking to my parents about it.

I think my dad gets it, Mum is still holding out hope, along with the thought that perhaps life with a trach and no voice would be enough of a life on its own.

Christmas and birthday in one.

2012-01-16T14:52:00.000Z

Yesterday, I celebrated christmas with a friend. I even got a stocking yay.

We watched Elf and had a roast dinner and a huge pud.

Yes, that was taken about 10pm and yes we are still in out pjs.
It was also my birthday, so I got to do 2 in 1.
It was fun.
Until my friend pointed out that I am no longer mid twenties, but in fact late twenties nowI am 26 eek, where did life go.
Which wasnt so fun.
But its all good as she is still older than me :)

Today, I go back into hospital ready for theatre tomorrow to remove the stent. the sooner the better is what I say. This has shown me, that my body still dislikes stents, even if they are covered in my own skin grafts. I literally havnt stopped coughing for days with the squeak of my breathing waking me frequently, whats more, what is coming up, is disgusting even by my standards. Not to mention, that each day, I feel a little more restricted in what I can do and even changing postions at times curently, can leave me with a quickened breathing rate.

But alas, that is still not my major concern right now. The scar from this surgery, looks pretty good. (Scar pictures with and without staples below, so feel free to skip)

For less than 2 weeks post surgery, I think thats looking pretty good, however, I have developed a slight swelling above it and my neck just looks hugely think.

I guess its just a pocket of trapped air, but it does change size throughout the day. But if I turn my head in certain ways, I get the feeling of pressure on my throat, where I swallow. More oddly than that, and something I am still unsure how it corralates, but if I turn my head slowly right, I get another pressure feeling, in the midst of my chest, close to my heart, as if something is pushing on it. Its all very odd and probably absloutly nothing to worry about. However, that does not quite relieve the feeling of anxiety that comes everytime I move my head and my heart feels odd.

Back to Charing Cross in a few hours, where I am sure they will just laugh and say its to be expected. So here is to the hope, that within the next few days, I come away with a normal airway once again and no longer feel that anxiety nor the worry of being face with an incline to walk up.

And as I write, I am currently laughing at my friend who is looking like a DIY expert trying to build furniture hehe.

thinking

2012-01-11T23:09:00.000Z

The last week, has given me a lot of time to sit and think.
It also gave me a few like minded people to bounce thoughts off and left a few things clicking into place.
Whilst I am still hopeful that this surgery will work, I went into it with a really good gut instnict that this was going to be the one. But as time goes by, that instinct fades and I cant help but think what now.

These reconstructive steps, where always going to be the answer, the fix, but when they have failed me, there has always been the back up, that one day, a trachea transplant maybe an option, with less of the complications that the reconstructive surgery has. But with time also comes knowledge and I know so much more now, than I did at the start.

Transplant, is a new procedure, with no firm records of success. However, there have been more surgeries than are currently mentioned. The successful ones get the attention, but in the back waters of journal articles and research papers, there are mentions of unsucessful ones, or ones that worked, but other complications still resulted in death. In all, there is reason why it is not a current viable UK surgical option, it is its high mortality rate, which sits at about 50% for the average person with no other medical complications. However, the biggest complication is infection, which was the result for many of the deaths. Give my health status, my immunity to antibiotics and ability to infect anything quickly, my success rate would be below the 50%.

Take out all the aspect of law right now, if I were to be offered the surgery tomorrow, given the above factors, would I take it? I guess that would be the million dollar question. To say yes, I would have to go into it, knowing there was a very high chance I would not come out. Would I be ready to die? I craved it for so long. But in the last year I have built a life I love, relationships, hobbies, achievements and goals. Could I just drop all of it. right now, I dont think I could. I would have to say no to surgery, if it became available.

I am rapidly running out of long term solutions. The reconstructions are not working and as I have discovered, monthly surgery, is not a real option I could live with. This would leave me with two other options that I know of. A permant stent would be one. Right now, I have a stent in. It has lasted a week until my breathing has detoriated rapidly, I will be pushing to make it to 2 weeks.

The last option, leads back to the trach. I do stand by what I said in the past, I think if I had stayed with the trach, the chances of me still being here would have been slim. Again, the rate of infection and hospital addmissions would be silly.

At this point, I dont know where I stand. I think, I really need to talk to my surgeon and see what the next step holds.

Im not ready to give up, nor ready to say goodbye. But there must be more options. There has to be. I need hope to be restored. I need a goal.

Free

2012-01-10T22:47:00.000Z

I still stand by my last post, but the last couple of days have really tested those feelings.

I awoke yesterday with the worst migraine I have ever had. I went from being fine to not being able to open my eyes within 5 minutes. Dark and quiet on a hospital ward is impossible. I took the painkillers, blocked my ears and burried my head under the pillow. Doctors came for ward rounds and I particpated with my hands over my eyes, only opening when I had to. After more meds and drifting in out of sleep, I was thankful that the docs had given me plenty of nausea meds, the thought of retching, while my neck was still held by staples terrfied me.

By mid afternoon, I began to lose the pain yet still felt rough. I ventured out for tea as my parents were visiting, but I didnt cope very well with it and spent most of the time trying not to pass out. Both perantels noticed that my breathing was worsening, which says something, but I kept hoping to put it down to having not moved as much in the morning. I doubled up on all my nebs before snuggling up in bed.

I actully had a great night. There is something to be said for sharing a bay with 3 like minded people, all 3 of you wrapped in blankets, sipping hot chocolate and just having a good old joke. I laughed so hard. They were amazing people, same mind set, all been through hell, yet able to smile and yell whats next world.

So they decided today, I will be going back to surgery next week to get the stent out, so it was upto me, if I wanted to wait in the hospital or go home till then. I opted for home. I think that choice maybe harder than first thought.

So tired. I went up the stairs too quick when I got home without thinking. My sats dropped to the low 80's, but I found myself curled up in the fetal postion on my bed. It felt like I had a knife going through my heart. The pain was agony. I must remember to slow down.

Its so differnt getting my head around this. Usually after a big op, I have the whole adjustment of a trach to add in and it takes me about 2 weeks to begin to feel human again. This time I had a mini trach that was taken out after 24 hours. There was no adjustment and by 4 days post op, I was itching to get out and could not understand why I was still on the ward. I felt great and I felt more like I had had laser than a big op. It wasnt until I began to feel rough again, that the nurses kept reminding me that it was normal to feel rough, I had just had major surgery and a spell in ICU. I was taking to much for granted.

So I am home, and I need to keep reminding myself to slow down, to rest and to try not to let this fear get the better of me. Its ok for things to be hard now, it dosnt mean things have not worked, when the stent is out, things may get better. I am not going to have the same issues with this stent as I had with my last stent. Its less than a week, in less than a week, I will be safe again. I can do this. It is so worth it.

lies

2012-01-08T23:30:00.001Z

I told a lie today. It was only a small lie, the same one I have told so many times before.
But once I finished telling, i didn't feel the same careless shrug I usually feel. I was smiling, reflecting.
It was upon this discovery that i stopped and thought. Perhaps it wasn't a lie. Maybe it's the truth. The thing i have wanted to be true for so long, now seems so natural.

I was talking about the past. About everything really. And i said I was so lucky. That sure things may not be ideal, but I was thankful to be where I am now.

It is true. For so long I resented being saved. I hated that things were hard. But right now, I am filled to the brim with love and gratitude. I could have lost much, yet here I am.

I will always want more but that doesn't mean I am not Damn grateful for what I have. I have so many opportunities and so many prospects that i can't wait to try out.

Hospital wise things are going so well. There are bound to be small hicups but i know i can beat them. I have a wonderful life ahead of me, filled with such amazing people, that I can't wait to get on with living it.

Oh and this was the first skin graft where there was no new or open scars to be discovered. Everything is on the up. And i can breathe a deep breath and admire the view from the top.

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alive

2012-01-06T21:18:00.001Z

I'm still here.
I was last to go to theatre as i have a known bacteria so I didn't leave till almost 4. From what I can tell there were a few issues in theatre with the method they wanted to use. This meant that I ended up with a mini trach and i mean mini. It was decided that they wanted more careful monitoring for the first day or so and so an icu bed had to be found. They did find one but it meant that I was nursed in theatre recovery on my own till about 3am.

Cue a panic mother and such. It was odd coming around as my surgeon was still overseeing things so he was talking to me. I also had to wear 2 oxygen masks, one on my trach one on mouth to keep my sats up.

I am back on my usual ward now and the tubes are coming down. Both iv leads have gone, trach is out and oxygen is only for sleeping. Ng tube is out znd I so eating and drinking and managing meds.

I have a good feeling about this one. Fro. The the start I have. And although I have my reservations about using a sent, i know i am in good hands.

Just working on balancing painkillers now. Atm I'm either in agony or in a very deep sleep. Finding the balance is hard. But i see no reason. The against not going home soon.
Yay.

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New year

2012-01-02T10:07:00.001Z

For some reason I feel stuck on what to post. I know that it dosnt matter much in the long run but I don't know.

I'm not one to do the whole resolution thing. I say if you are going to do something why wait till the start of a new year.

I also don't feel much like doing a review of the year. It could have been a more tragic year, but that dosnt mean it was an easy year. Far from it in fact. It has been a tough year. Between a failed second surgery, the big C and family stress, there were times when I wondered if I would ever feel able to carry on.

But carry on I have. And I have grown from it. I have learnt so much this past year. That's not to say I would want to do that again but I do prefare the person I am now.

And now I hope for an easier year. A year of success and getting well.

And that begins now. I am on the train to London. Still on 2 sets of antibiotics and feeling a little rough. But here is to hoping it is 3rd time lucky. This will work this time. It has to. Soon I will be breathing free.

Although nerves are beginning to settle in now. Thoughts of pain and confussion plus annoyance.

It will be different this time too. On my own for a large bit. But I can do that.

So here is to the new year!
Let it be all I hoped it would.

Le mother

2011-12-31T01:00:00.000Z

I had a kinda mini argument with Mum today, its odd, but kinda shows me how differnt our views our and perhaps why we irk each other often.

I cant recal how we got onto the subject, but we were talking about the end of the year. I said its been a good year, to which she looked at me and, oh thanks! I said what? She said, I got Cancer this year. To which I replied, you survived cancer this year. To which she said, you dont know that yet, not till I get my next scan. To which I replied, well you look pretty alive to me and unless you drop dead within the next 24 hours, then you survived cancer this year.

I then continued with, there has been no unexpected or untimely deaths, I have been to theater 14 times with no real issues and gernally things are going ok. To which she kinda grunted and said, you hardly had life threatening surgery. To which I replied, and its hardly minor surgery. For a while, I have no viable airway, my airway is open to the world and there are a lot of risks to it. To which she kinda made one of those whatever faces and walked away.

It just makes me think, how differnt our thinking is these days. I do wonder where I get my thinking from if the person I spend most time with is so differnt. Or does it then become a case of, well I dont want to turn out like that so I will try hard to be the opposite.

It also make me think about how I put things to my mum. I do downplay things such as surgery, always sugar coat and higlight benefits whilst skipping risks. Is it wise. Im not sure. On one account, its almost as if she belittles some of my issues as pettite almost, perhaps that is my fault. But if she knew more, if things were said straight, what would happen then? I think she would stress more, get more depressed and so on.

But then, my head goes back to the summer, when I thought she was begining to understand. A few times, it seemed like whilst she was ill, she sort of knew some of the issues I struggle with, and when I mentioned that I was still holding on to hope that I wouldnt be ill forever and therefore wouldnt need to live close by forever for her to look after me, she teared up, as if thinking dream on.

Its not that I want sympathy or pity or even think my life is tough, its just that I never seem to know where I stand with her or how she views me. One day, she is telling me what I cant do and that I need to look after myself more, the next day, that I am not doing enough and should be doing other things at my age.

I know I have always had difficulty with my sense of self, I have no idea who I am, which is what has lead to some of my issues in the mental health setting. I cant help but think, that perhaps mum has the same issue, maybe thats why I feel the way I do.

I dont know, I guess I am rambeling. And whilst I do think I am a lot differnt from my mum, I also see a lot of the parts I hate most about myself in her. Espcially the competitvness, even in things that shouldnt be a competition. I know she spends a lot of time compering her ills with my ills and on a discussion with Dad last month in regards in to travel insurance, she near took his head off for suggesting that I am sicker than her. I am just not sure, at this point, how I can persuade her to look at herself as not being sick. She has had the surgery, she has done chemo and radio and the only thing now is a anti cancer drug once every 3 weeks. She should be improving, moving on and getting her life back. They would expect by now, for the average person to be back at work, back at life and moving out of the ill catergory. Yet she seems to be clinging to it. She has a tablet she has to take once a week. You take it and for the hour afterwards, you cant lie down and you cant eat or drink. To my mind, it wouldnt be a problem, you would take it, then go shower and dress and such and by that point, carry on with normal routine. But to her, its this huge deal. She tells everyone how hard it is and how much it gets in the way. Really, if your going to complain at something like that, then its nothing.

I'm just bitching and rambeling at this point with no real purpose. I just wish I could wave a magic wand and somehow know here I stand and who I am. Just finding things hard with her at the moment I guess. I frequently seem to find my Dad and I rolling ours eyes behind her back. But i guess she is just as hard on him and that hurts too.

At this point, I want to run away. I want to be well enough, to go escape, to run far far away start fresh and build my own life and my own self and know exactly where I stand in the world.
One day.
Next year.
This year, I am going to get well.
Next year, Im going to rebuild my life.

Christmas Markets.

2011-12-30T01:10:00.000Z

I am having trouble with my humdifier and I am unsure on how I can go about correcting this one. The nights I sleep with it, it is held in place across my face by a piece of elastic and then a second clip around the neck. the last two nights however, I have awoken with it in my hand. It wouldnt just pull off as it would have to go over the head, so the only assumption I can make, is that while I am asleep, or even half asleep, that I am pulling it off. So not sure on how to get around this one. However, the coughing is not really getting any easier and at one point today, I was almost in tears when I coughed as my muscles are hurting so much. So tomorrow I have a GP appointment, though I have no idea what I need this time, as I dont have a temp and I still have good air entry to all parts of my lungs. It dosnt feel like an infection, more like an irritating cough. We shall see.

Anyway, as I wanted to post, my photos from my hols.

After traveling through the night, we caught an early boat across the channel and stop at Lillie Market in France. It was only a small market, but the smells were wonderful. Mulled wine was served everywhere with many other drinks and goodies.

There was a fair ride and a large Ferris wheel, that would become another common thing amongst the markets.

From Lillie we headed to the boat, where our luggage loaded and we were shown to our rooms before being served a four course meal. The tables were set to seat 6, but ours just had 5. To my right were two sisters who were traveling together and to my left, where an older couple. Over the course of the holiday, I really hit it off with the older couple and spent most evenings in the bar with them. He had chronic COPD and until recently was pretty much house bound on oxygen. Doctors had told him there was nothing much more they could do to help him, but a few weeks before he had had a heart attack and when they looked at things, his arteries where mostly blocked. Since then they had been repaired and he was now able to breathe a lot better than he had. So he was making the most of it and had booked a last minute get away around the same time I booked. It was funny the amount of stuff we had in common. As I spoke more to them, they told me that they had a son, who had died a long time ago, but he was born with airway problems and so had a trach in most of his life. They joked that if I were to get ill, they could fit me a trach, having had to perform an emergency one at one point. He was also a camera enthusisast. He used to own a lot of expensive cameras, but sold most of them when he thought he was dying. He gave me a lot of advice on lens and loved looking back over my photos. He was a very old fashioned gentleman and wouldnt let me buy drinks and such. I could have spent hours talking to him.

On the second day, we had to be up early. So after a buffet breakfast, we went onto Valkenburg in the Netherlands. They have a underground cave, that used to be used as a secret entrance to the castle. Now they host a market in the cave, all lit by fairy lights.

They had themed it as Father Christmas bedroom and the elves chasing through the caves. There was lots of drawings on the walls of the caves. amazing art work. All done with soot from the fires, mostly from the time of the war. Very sureal some of it.

The town itself was also very pretty, though it was very wet the morning we were there. After going back to the boat for lunch, in the afternoon we went to Liege.

There market was very spread out. I got so lost and it was wonderful. No idea where I was, yet so much to see and do and it didnt matter that I didnt know where I was.

Again they had a ferris wheel.

I also visited their Catherdral whilst there.

I lit a candle whilst there, in memory of those lost and those in my heart. Eva, Bree, my Nan, my donor and spent a few moments peacfully reflecting on how each has touched my life.

That night was clear and dry. After taking some pics from the top of the boat.

And talking in the bar for a while.

I decided to go for a walk across the road to Maasterich, where I fell deeply in love with the town.

The ice rink was right next to the catherdral and the mood was wonderful.

Again they had a ferris wheel.

I spent a while just sitting here. Cup of Mulled wine and perched on a stool watching those on the ice rink. Christmas songs where playing and I just felt so content and relaxed.

The next morning was to mostly be cruising on the boat, but everyone was mainly in the bar where there was a quiz and other games. I planned to go back to Maasterich that morning instead of cruising, however, I had difficulty waking up and had had a bad night sleeping. In the end, I stayed in my cabin and slept, to let my body catch up and I think it was for the best.

That afternoon, after lunch, Aachen in Germany.

This was a huge market, spread around a catherdral. More stalls here than anywhere else and so many hot baked goodies you would not believe. The shops were crowded with shoppers and the window displays wonderful.

Gingerbread seemed to be the biggest seller

It was so pretty, though very wet and windy.

That night after tea, I ventured back to Maasterich to soak up some more atmosphere for an hour. I took some pics of the boat but generally just chilled out.

When I got back, I sat and drank cocktails in the bar with some of the people I had been talking to. It was the night of my transplant anniversary and I thought this was a suitable way to celebrate.

The next morning was an early start to begin the journey home, with just enough time to stop at Bruges on the way past.

The buildings all decorated and the hourse drawn carriages carried such charm.

From there we began the long drive home. I said goodbye to the people I had met on board the boat and on the excursions and off we went, where I arrived home at 6am. It was exhausting, but wonderful and I cant wait to do it again.

Merry Christmas

2011-12-29T01:02:00.000Z

Whoa 5 days since I last posted eek.
But, you will notice that I am posting at my usual time, which means I am currently sitting on my bed typing yay.
I fixed my laptop. Well kinda, but it is still dying.
And then, I found an offer too good to refuse and so, I am now using a shiny new laptop. YAY.

Today we are having our second Christmas day.
My niece has come so last night she got new PJs for bed and a stocking this morning. Followed by presents. So its our pretend Christmas day.

I have had my date through for London. I go in on the 3rd, with surgery planed for the same day. A little bit of anxiety is starting to sink in now. The main bit being thoughts about how hard it was last time to get the trach out, what if that happens again. But, I cant keep going the way I am and right now, this is the only option. So, its fingers crossed for 3rd time lucky with an open reconstruction and skin grafts. I have decided 2012 is going to be the year I get better. By this time next year, I am going to be well, free from antibiotics and surgery and hopefully working.

As for the end of this year, I am working on trying to get well. I started with a cold 2 days ago and could not stop sneezing. Today it feels like it is setteling on my throat and moving to my chest. But I am already on two sets of anti biotics. If it does begin to settle, i'm not sure what course to take as the other main spectrum I cant take for it messing with my anti rejection med levels. And I cant go for a big op if I'm ill.So at the moment, its plenty of staying warm, resting and doing all I can to keep my chest clear. But it is getting to the stage where my muscles are so sore from coughing and I get evil looks everwhere i go while people mutter about not spreading germs. meh.

But apart from that, things are all good.
Its been an unusual Christmas, quiet yet busy, but still a good one.
And now I have a new computer, I can get round to uploading my pics yay.
For now, Merry second christmas.

evolving

2011-12-24T01:57:00.001Z

I feel like I am going through so many stages of life suddenly that my thought patterns are so visible.

When in uni learning the whole psychology babble stuff, I came to the conclusion that because of the time when I was ill, I had missed a big development stage, everything seemed to add up, like I were stuck and could not move out of my teenage mind set. But perhaps now i am catching up. Its just odd as sometimes I can literally stop in my tracks and my whole vie changes.

The last year family wise has been stressful to say the least. My older niece and nephew fell out with their mum and subsequently with my mum and me. My sister has now fallen out with my mum. Within the next couple of months she is moving about 90 mins drive away to live with her new boating. The (I'm not bitter meh) so anyway. My youngest niece is no longer a bus journey away, nor sone place I will ever drive past. She is not happy about moving but that's a whole other heartbreaking storey.

So where most Christmas are chaotic in ours, we had nearly 15 for lunch one day, but over the last few years have averaged on 9, this year there will be 3.

Now this I am bitter about. Christmas is a huge family deal in our house and it just feels like my sis has run away to what seems a better offer to her. I know its more complex than that but Meh.

So my mindset was stuck in bitter. Stuck thinking, I hope it falls flat, i hope she misses us and such. And that my niece misses our traditions and sulks. Not a thought I'm proud of. But then my mind switched. Instead, i hope my niece has a great Christmas. Here things wouldn't have been the same anyway. But what she deserves is fun, love and family. If she is miles away and with different people, then who cares, as long as it works for her.

I do hope more than anything that it works out. Maybe it's not running away. Maybe a ready made life and prebuilt family are just what they need. That my sis and niece will find what they need up there.

I will still always be her auntie and she will always know where to find me i hope. At this point all I can do is be supportive even if I don't agree. And this is where I feel my mind evolving.

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Furry friends

2011-12-21T22:36:00.000Z

Home, at last. I say at last, because that felt like one of the longest stays ever, that includes the one month addmissions.I feel stressed and tearful, which I hope is exhaustion, but is probably the post surgery moods I seem to get.

Good news, bad news, which to say.

ah the delightful feeling stressed. Im going to go from the time I woke up after the op. I am not exactly a beigner when it comes to surgery, but waking up, was one of the most scary things I have had in ages. Usually by the time my memory and ability to know what is going on kicks in, I am in the recovery, pumped full of meds and what not. Not this time. I was still in the theatre, I could see people around me and something wasnt right. Breathing was such effort. I wanted to tell them something wasnt right, but it took all the strength I had to move my eyes. I literally could not move, yet I knew what was going on. I remember the journey down the cold hall to recovery. I remember trying so hard, to lift a hand or scream or something but I couldnt. By the time I got to recovery, I had screwed my face up and was fighting back tears of fear. I think they assumed I was in pain and soon doped me up with morphine, which sedated me a little and dropped my desire to breathe. And yet the fear was still there. Thinking back, the same sort of thing has happened the last two times as well, though not as server. I remember being awake in the past yet unable to move. I can honestly say that was one of my top 10 scary moments and it wont leave my head today.

Im sure you can imagine, that I was pretty stressed by the time I got shipped to a ward. The morphine made me itch like crazy so I asked for some piriton, which I got about 2 hours later, though I also asked the doc to change me off tramadol as that also makes me itch, but I dont think he was listening.

I was then offered something to eat to which I said yes, but two hours later there was no sign. At this point, I was more awake and watching the time. I was on my own and knew mum would be anxiously awaiting a call or text to say I was out.I always text her as soon as I get back. But my bags hadnt been bought to the ward, so I asked for them and was told they would get them. After an hour, worrying about mum, I asked if I could use the phone, to let her know, which I did do. While I was also standing at the nurses station I asked about my bag, to which I was told it must be locked on the day ward and I would have to wait till 10 am the next day to get it. At this point I did kick up a fuss. All my medication was in it, including my anti rejection meds, so I refused to let it lie. In the end they were trying to get hold of security to go open the ward to open it. I asked if I could get some food as I hadnt eaten in almost 40 hours and could feel myself shaking, to which I was handed the menu and told I could pick out my dinner for tomorrow (bear in mind this 10 pm) Then, I was flicking through my charts, as you do and noticed they all had my normal ward written on them, so I asked if it were possible my bag had been sent up there.

Heres the best bit. Im sitting on the end of my bed waiting, and I see something run across the floor. I thought nah, im seeing things. I know that lack of sleep and morphine both make me hallucinate so I thought nothing of it. Until I saw something else run across the floor and behind the door. At this point, I thought, Im going to check that out. So I creep over to the door and behind it, peering up at me, is a little fluffy mouse.

I went down and asked the nurse if he knew that there were mice on the ward, to which he kinda went oh errm yeh, what bay are you in. Ok, so you know there are mice and yet you have patients in the ward! I asked him about food and as I had mentioned the mice, he couldnt get me food quick enough. About 20 mins after this, my bag turned up, on the other ward and so I was able to take my meds and go sleep, with my bag and all belongings on top of the locker.

They wanted me to stay longer on the ward the next day. I gave them till dinner time and then refused to stay any longer. I had to get out of their. I hate the effect morphine and exhaustion have on me but all the other things where building up too and I felt like screaming.

So, the good news, well kinda.

My surgeon walked in and the first words he said were, when are we going to sort your airway out. I just laughed and said, thought that was your job to tell me. My airway is still a mess. I literally get a maximum of 3 days out of it before it starts declining again. So he wants to have another go at an open rescetion, with skin grafts and a trach and a stent again. He wants to work slightly lower this time, in hopes of dragging it open more. So I have agreed with that. He says I will only be in for a week, but he has said that on both the long addmissions. At this point, I say I dont care as long as there are no mice about.

So he asked if I am busy early January, to which I said no. So, in 2 weeks, I will be going back to theatre, for resection number 3.

Probably not what most people would say is good news, but it is, it gives hope once again. It shows that I am not over reacting when I say its not improving, its getting worse. Hopefully 3 is the magic number.

Though Dad says I have to go back in 2 weeks anyway, as I have pet mice down there to take care of.

Alas, I know I should complain and I am disgusted that they have mice on a ward. But then comes the whole, will it effect my treatment. blah

travelling

2011-12-20T12:03:00.001Z

I am still computerless. Its killing me. Ha well not as much as I would have suspected. Things have been so busy.

At first this annoyed me. I mean really annoyed me to the point of wanting to cry.

I came back off my trip and i had to be up and out the room for 6:30 am. I expect eventually got home at 6 am the next day. Exhausted didn't even cover it. At 10 mins I was awoken as mum had hired the carpet cleaner for that afternoon. She got it for 24 hours but was going to be at chemo all the next morning so most of it had to be done that afternoon.

Its a lot to do in that time. They always say we will share it, but it never works that way.

So I have been jumping from one task to the next and running on empty so to speak. But the list of jobs mounts up. Jobs my dad used to do, now fall to me. And it is now i truly see how worn he is. I knew it all along but now I feel his pain. Simple things like decorating a tree become a huge chore and i can't help hope for things to get easier. For the day when putting up a tree is a simple task.

And i do still hold out for that, I have to. Hold onto the hope that breathing will once again become natural.

As I write this I stare at the gown next to me waiting for me to put it on. For I have just done the 3 hour train journey to london where I sit in charing cross tower awaiting my tune up. I couldn't make the 3 months. Pain got the better of me.

And i contemplate where to from here.

My surgeon always said when you have had enough let me know. I think i maybe at that point. But what does that hold for the future. I have said before that the travelling and surgery take it out of me. That going so often, used to be an adventure but is becoming soul destroying. Leaving me with big gaps where I feel unable to see my true self.

And so I think it is time for a review, within the next month or so.

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quick one

2011-12-16T23:35:00.001Z

Short and sweet.
Had a fab time, though had to skip a few things to rest.
Absolutely exhausted now.
Though, still alive (for anyone who heard about Liege. So sad. I was standing in the exact spot, exactly 24 hours earlier. Such a beautiful place too.)
Computer is still bust, so on my parents atm, but havnt had time to do anything between chemo appointemnts and carpet shampooing.)
Off to London next week, thank god.
And yeah, back soon, with pics and excitement yay
night

Oh, and how could i forget!!
Thursday, marked my 9 year transplant anniversary.
I celebrated by raising a glass of champagne. (followed by a yummy cocktail nom)

packing lightly is impossible

2011-12-11T01:15:00.001Z

The adventure begins tonight. However packing lightly is impossible in winter with thick clothing, plus on a cruise where you have to dress for dinner with no demin. But then I have also got this lot to carry.

Passport check. Meds check. Good insurance check.

My breathing is not being the best right now. Peak flow hovering around 140 and coughing like hell but it's time for some fun I think.

I'm excited. Currently on the coach after the most stressful evening but enough for now.

See you in a few days.

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Change

2011-12-07T01:55:00.001Z

Things seem to be changing a lot.
More specifically, I seem to be changing a lot.

Something has been missing for a while and yet I am only just noticing now that it hasn't been there.

I'm talking about my ability to bounce back.
No matter what happened I used to strive for better. 6 months after being discharged from a 3 month stay in icu, I had gone back to college. I always fought to make something of my life. Yet recently I have stopped. Maybe it's the prolonged treatments or perhaps I just took a knock more than I could deal with. I don't know. But it's time to bounce back.

Let's face it, surgery is not going to help. The prospect of a normal airway may never happen. I can't keep waiting on maybes from my surgeon.

Right now, things are pretty ok. I have not been to theater in 6 weeks and my body is thanking me for it.

We seem to have worked on getting a good mix of medication, inhalers, nebs, antibiotics and culture tests going. My gp trust me. I can virtually phone them and get what I need right away. Be that an appointment, prescription, or hospital forms. I once again know my body.

I am ready to get going. I know that I have written it a few times, but I am more sure of it now. After the holidays I am going to look into going back to work. Part time to begin with. By august I hope to either be going full time or back to uni.

There are a lot of reasons behind this, but in short I am excited. I am once again on the right path.

I think everyone has a hard life in some respects, it's all relative to experience in the end. But it's what you do with it that counts. I need a purpose and I can't wait to get back to my old ways of dealing with things.

2011-12-04T17:02:00.001Z

I am continually learning, improving, adjusting. It's amazing how little I know about myself or the world. Everyday brings a new perspective. I learn by adjustment.

In the past two years I have spent more time in hospital than I care to admit and changed so much in that time. But that is a good thing. I am better for it.

For a long time I saw no future. I believed that the end would come soon. And so I lived as if that were true.

As a result of that I have given my everything. My heart, my love, my trust. And I am a better person for it.

When I got the trach out after the first reconstruction, it felt so good and the possibilities of living the life I wanted left me in tears for hours.

Alas it wasn't to be and the treatments alone left my spirit tattered.

But right now I have a break in treatment and although things are not at their best I know that I can manage this and that I am nor dying.

I am well in fact. I can do a lot within my limitations. And I am ready to live. I can conquer the world if I so choose. I can be anything I want to be as long as I set my heart on it.

Living is what I have set my heart on. That dosnt mean I have not learnt anything. I have learnt to love and how to live. I have adjusted my values.

There is to much at steak to give in. There are people who need me. My mum to keep her grounded. My dad to break up his day. My niece to give her tips on how to get through highschool.

This Christmas is about love. No threats of hospital, death or not being up to it. This year is to be the best yet.

I take all my lessons forward with me. And grow upon them. I am not sad about the past for I have learnt from it.

My exciting news

2011-12-04T01:58:00.001Z

I think i have a virus on my computer. This is muchas frustrating Grr. I live on my computer and also pride myself on being able to fix mist issues. Alas this on is getting the better of me.

This means that i have not told anyone about my exciting news. I put it off till i could confirm it and since have been putting it off as i want to add details that require a working computer. But i give up waiting.

So, my news us, that i am going away and in doing so crossing something off my list.

I have been wanting to go to the European Christmas markets for years but not been able to find anyone to ho with nirvana been up to going.

Well right now i am doing ok and so i thought i would bite the bullet an go fir it, alone.

You never know where an adventure might lead and an adventure and some more independence will do me good about now.

I will be going on a river cruise with everything included to 3 countries and 6 markets including valkenburg, where the markets are in caves under the city lit with candles and fairy lights.

Im so excited and looking forward to lots of Christmas spirit.

I have good travel insurance, plenty of Meds and some emergency Meds.

U hope to get lots of pretty pics. Its only really a week off till i go. Yay.

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The Diary

2011-11-30T01:54:00.001Z

So, I now have, in my possession and currently residing on my bed, the dairy that mum kept while I was in hospital. Its not long and I know there are huge chunks missing, lets face it, in those situations, keeping records is the last thing on your mind. My mum is not the most eloquent or writer either so some sentence run on for whole paragraphs.

I was given the book about 6 months after I got out of hospital to read and I remember glancing through it, but at the time, I just wasnt ready. I dont know what has change, but now it feels right. It feels like the right time. Last time, the thought of crying would make me mad, but now, I know that given the life changing events that are recorded, crying, is normal.

Tonight, I think I am going to share the first entry with you, which is two and half pages. The first couple of entries were written about a week after they occurred so some things may be jumbled.

Tuesday 5th December 2002

You arrived by ambulance to the hospital approx. 6:20 as far as we know.
Sister on duty says Peter arrived with you after a 999 call, your life was saved for the first time by the knife being left were it was. Christopher arrived home at 6:15, the phone rang at 6:30 to tell us that you were in a critical state and that we should attend as ASAP (You had been conscious and refused to give our phone number) Christopher phone Dad who was at work, he booked off and started home, Christopher phoned me at the shops to come home straight away. On the way home, I phoned Tracey she was to meet us at home. Michelle was on nights so she was in bed, her and Mike met us at the hospital A&E. Dad arrived home, Tracey, Christopher and me took the journey to the hospital, it felt so long. When we all arrived we were taken to the relatives room. The CID came to see us.

We were told that you had been stabbed and that you had gone straight to surgery. We met Peter, Kieran and Kirsty. Peter was really shocked and worried. We sat and waited for news. 6 1/2 hours later the surgeon Mr g. came to tell us how you were it was a real shock your liver had been damaged and the main artery had been severed. The liver specialist had been sent for. Prof P. from Liverpool, so for the second time you were lucky. It was a temporary operation and when you were well enough to travel you would be transfered to the Royal for a further op. When you were settled in the ITU we were allowed to see you for a few minutes. Alison arrived at the hospital, ahe had been in town, so she came by train.

You were in a lot of pain and in a bad way, upset and distressed and very confused. We had a police guard all that night and the next day. We visited throughout the night and all sat waiting for good news, they were having problems and you were still bleeding. They tried to clot your blood. After several hours the descsion was made although you were extremely ill there was no choice but to go back to theater or you would die. Mr G. was very good, he spoke to us and you had very little chance, but we had to take it, we just had time to say good bye and give you our love and a kiss, you could not see Dad but you knew he was there so you reached out for his hand and you held my hand and pulled us to your cheek. We really thought we were to lose you all over again.

3 1/2 hours in surgery this time, we were told that your right lung had also been damaged by the knife.

Your blood pressure had gone so low and your heart was giving cause for concern, once again you fought your way around, Michelle, Mike, Tracey, Christopher and Alison waited for some news. Keith phoned every 30 mins, he had to look after the gang as it was short notice to arrange baby sitters.

The hospital wanted to move you tot he Royal but you were far to ill to travel, so we waited hour by hour. The hospital found us a small room next to the ITU so we could be at hand. We sat with you every minute we could, leaving ITU at about 1:30 every night and back by 7am. Your BP dropped very low, your oxygen was 100% fully sedated. Two people only were allowed at your bed. Michelle came every morning. Christopher, Alison and Tracey every night. We all took turn and just held your hand and told you to fight on.

The last time I saw you awake I made you promise that you would not give up and would not let Dave win. You shook your head ad I held you to it. At the time not knowing how hard you would have to fight for your life.

Heavy heart.

2011-11-29T01:03:00.000Z

I have had the blog page open for about an hour, trying to put this weekend and more so the last month or even year into words. My heart is heavy and I wish so much that I could change things. There is so much that I would change.

I think that I have mentioned before here that my sister was having trouble with her son (my nephew) and his dad (who she is separated from) causing trouble. Well her son was getting progressively more violent and the police have ended up involved several times. He has now moved out to live with his dad and as I much as I hate his dad, I hope that it works out for him. Of course, at 17, he now has a police record, but again, I hope this brings some sense into him. Because of the way things were left, right now, its just not possible to stay in touch with him. He knows how to get in touch and I just have to hope that he does if he needs us.

My sister is now dating a bloke from her past, who lives in Blackpool, roughly an hour away from here and she is now thinking of moving up there. I say thinking, its more so is in the process of moving. She sees it as a good opportunity. She wants a clean start, away from her ex and as her son has moved out, she will need to move to. They currently live in a 3 bedroom house in an expensive part of town. But, not only does she lose the money for housing him, she also has to pay out maintenance for both him and her other daughter who moved out last year. (Daddy is nice to them, so they go running, though the daughter is realizing that hes not like that when you live with him)

And while, this all seems positive, the trouble is, as much as I love my sister, she goes through men and phases like a teenager.

My youngest niece, who still lives with her mum, stayed in ours over the weekend and the amount of time she almost burst into tears, was heart breaking. She moved school a couple of weeks ago, as her Dad kept waiting for her at school, when he has been banned from meeting her. It was a big change for her to change school. And now, he mum wants to move her again to Blackpool. To a place where she knows no one and dosnt even know the area. Its a huge change and will mean 3 different schools in one year. She dosnt want to go, yet is hiding behind a smile as she dosnt want to upset her mum. Her mum has all these big plans, for her to go to running club and kick boxing with the fella, but she is just not a a sports person. To look at her with tears in her eyes and know that there is nothing that I can say or do to make it better nor to stop it from happening.

I am so angry at her mum, for putting her through what she is putting her through. She goes out of an evening and leaves her alone. She so often puts herself first and many others first before her own daughter. Its heartbreaking. I just wish there were more I could do. More to save her or make things easier on her.

I really dread her growing up, I just know this is all going to come back and make her teen years harder. She will have practically missed a whole year of school and her mums example is to meet fellas off the web for dates as long as they pay and include fancy hotels. And no matter what you say to her mum, she just tuts and says, im an adult I can do what I like.

The whole situation, is just tearing me up inside.
My niece is the person I fight for. When days are hard, it is her, that I keep going for. I like that she can get the bus to ours when she needs me and that I can drive to hers in 20 mins for a cuddle. I love the fact, that even though she is at that awkward age body wise, she feels comfortable enough with me to strip down to her bra and that a good way to bribe her is to let her sleep in the same bed as me. It reminds me of when she was a toddler and I used to share a bed. I would wake up in the night and she would be curled up with her head on my tummy. In the morning when I awoke, she would be leaning on my chest, peering close at me waiting for me to awake and as soon as I opened my eyes, I would be greeted with the biggest grin before she flung her arms around my neck.

Cuddles with her make everything better for me. I just wish there were someway to make things better for her.

The first rule of rabbit Stu

2011-11-28T00:08:00.000Z

Today, we are going to prepare a special dish.

Step one:

First collect your ingredients. The fresher the better.

Step Two

Find a suitable size pan.

Step Three

Place the ingredients into the pan.

Step Four

A snug fit will ensure better cooking and infusion of flavour

Step Five

Garnish as Desired.

Cook on a medium heat for 3 to 4 hours.

Note; No animals were harmed in this production. (in fact she actually snuggled up with the spuds.)

Candy Canes

2011-11-24T23:48:00.000Z

After a long day, there is nothing better than relaxing with a hot chocolate and a candy cane. I do love this season yum. And if you have never dipped a candy cane in hot choc, you have to try it!

Today, I am aching, for no real reason. I have been out but not much more than normal. Yet I hurt.
More annoyingly, I think my brain is broken today.
I was doing some paper work on the competer, I was putting in some titles for each month and on several occasions, I actully put the months in the wrong order, I mean come on thats a junior school lesson. And even worse, I couldnt work out the years, they kept going wrong.
So tonight, I think an early night is called for.

Tomorrow we start chemo again. Bright and early at 9. So I have to be up at 7:30 to run my nebs and dress.

Just keep your head above.

2011-11-23T02:11:00.002Z

I have said it before and I say it again, I love this time of night.
I love the quiet, the stillness and the chance to relax with nothing that needs doing.
I could easily put my headphones in right now and just space out for an hour or so.
Or swap my night and day completely.

Things are changing, I can feel it. Change is in the air so to speak, though I am not sure how yet.

I am readying a book at the moment, that has really bought a few things home to me, in terms of life and sustainability.
I do already make the most out of the time I have, when I can. I know that the future is unpredictable as is my breathing. I hope it improves, but I also know it can worsen. But more so, the book kinda highlights the problems associated with being transplanted young. Admittedly its a positive book and such ( I will give more details when I finish it but right now I am savoring it) but it does also bring up the subject of the longer term effects of the immunosuppression, which I have always thought comical that it includes both Liver and Kidney failure. Dont get me wrong, compared with the dying if not transplanted, its nothing to worry about. But a lot of people view transplant as a cure.

More so, it is swapping one set of problems for another. There are complications, you have to look after yourself. You avoid certain things and you have to become defensive of your health. Most health professionals know very little about transplant, so you have to guard yourself. Check every medication wont interfere with your rejection levels, make sure none will damage your live. Be on the look out for infection as it needs treating quick. Organ failure is only one effect of the medication. Last month in clinic in Leeds, I was talking to a lady who was being treated for skin cancer due to the medication. So, when your docs tell you to wear sun cream, even in the winter, do it! Especially when your med levels are high. But dont let any of that put you off, I reach 9 years next month!

I found my ICU book today, though I have not opened it yet.

I was reading back over my blog yesterday as I needed some dates for paperwork. Its amazing how much you forget over time. When I look back, at days when I crawled the stairs to bed as I was to tired to even have tea, I forgot about them days. They were back last April, when they missed me off the list for laser. I fear that is where I am heading now. I am just 4 weeks post surgery and done from 300 to 130 on my peak flow. I have no appointment till January. I am not sure what I do from here. Part of me wants to see how long I can last, so I dont have to keep traveling and going through the pain and energy required. But another part of me also dosnt want to be to exhausted that I dont see Christmas and that I cant help out during it. I also still play back the whole, I dont want to waste peoples time if I can go longer.

But this is also my life and I need to live it. I still havnt posted about the possible excitement, and I cant yet, as I have had to put it on pause, until I know if this downward bit is going to level off.

I have gone back to using my neb mask during the day. I run my regular nebs through the mouth piece as I get more, but then, when I am running a load back to back, I switch to my mask so I can tolerate it longer. Tonight I am experimenting. I have added some nebs to my humidifier. I am hoping it helps. Last night, for the first time in a very long time, I woke in the middle of the night needing to run a neb. I hope this is just a rough patch, as right now, it feels like it is taking a heck of a lot to just keep my head above water.

Here is to tomorrow. When things will hopefully look up. And when I should have some news on the front the next few months.

love

2011-11-21T01:29:00.000Z

I have been so lucky in my life. Blessed beyond belief to the point that I have spent a long time taking it for granted.
The people in my life have made me who I am and their love for me never ceases to amaze me.

From a young age, I wanted my own family, but when things have been against me, I have come to terms with the fact that, it isnt possible.

But all is not lost, I have my family and I so I get nieces and nephews of my own. When out with my youngest niece, I am often asked if she is my daughter, we often laugh and say yes. She is my life, my heart and my sole. She is the first person, as an adult, that I have given my heart to and I have no regrets for that.

I may not always get on as well with my mum, but again, she has been there for me. Silently checking on me on the nights when my mind has struggled to make it through. Nights when she knew I was at risk, yet took the duty on herself rather than kicking me off.

I belong to a little family full of love. They are like any other family, they are not perfect and they make mistakes. But they are my mine and there is no denying that.
And for that I am grateful

Stop playing

2011-11-20T01:42:00.000Z

So, last week, I was beginning to get a little tiny bit hopeful. Once I started the long term anti biotics, I was coughing less and my peak flows remained steady for a few days, and then began to rise. The only change was the meds and so I began to feel a little bit hopeful thinking at last my body is playing along.

But, less than two weeks after starting them, I am once again coughing and my peak flows have nose dived once again.

I think numbers on peak flow dont really mean much in terms of how things effect me, so this kinda makes more sense. I should have a peak flow of about 450. I have no idea what that is like, my best is about 300 (right after surgery)

At 300, I am amazed, I can walk any speed and even on a mild incline without getting breathless. I can get to the top of a flight of steps and carry on walking at the top.

At 250 I notice only a tiny amount of breathlessness, usually when on an incline so I slow, or I notice at the top of a flight of steps that I am panting.

At 200, I have to slow a lot for an incline and still get breathless, I begin to slow down my pace and I have to stop to catch my breath at the top of a flight of stairs.

At 150, any walking has to be slow and I still pant. I generally stop half way up a flight of stairs and again at the top, where it takes about 4 minutes for my breathing to settle. I also generally switch to mainly whispering when I talk as it is not as exhausting. At this point, coughing fits become a lot harder as I struggle to get the air in after a cough. I can often be seen, standing with my legs crossed and an arm over my abdo to support it whilst leaning over to cough. This supports the area where my hernias are,to try to prevent reputure, but also means, I can generally catch myself.

At 120, All of the above, but with the added joy of headaches kicking in. If I ignore the headaches and keep pushing on, My limbs generally start to feel heavy and I have difficulty moving.

Right now, I am averaging between 130 and 160. But today, I had a major coughing fit whilst out. I leaned over the shopping trolley for support, but I could feel myself gasping to get the air in inbetween. I honestly thought I was going to black out.

My lungs are sore, well not really, I have pains in my chest, but I know the lungs have no nerves so its not the lungs,yet it dosnt feel muscular. There is still good air entry, it just feels kinda heavy and sore.

I think, I may build up the courage for a GP appointment soonish. Im going to ask about trying the inhaler form of one of my nebs, to see if it will help during a coughing fit. I dont know what else to do and I am not due in London till the end of January. I can probably make it till then, but it will mean a lot of sitting around and not much doing anything. You see the bad side of having a doctor so far away, is that I never actually get to talk to him. In the two years I have been under him, I have only been to 3 clinics and theaters are not the ideal place to set up plans.

This too shall pass, just wish my body would react normally, isntead of playing along for two weeks.

Winter

2011-11-17T00:31:00.000Z

Winter is most definitely in the air today.
I must say, I have been loving the Autumn, but when I went out this afternoon, not only dud my scarf come out, but my winter coat as well.
I like the winter. I love the summer when you can spend days outside, eating fruit with the warmth of the sun on your skin, but winter, has that crips chill to the air. Although, I hate rain, it makes everywhere look dark and miserable, winter has the perfect weather for breathing in. The coolness, keeps my throat playing nicely and the damp makes it easier to cough. My peak flows have actually risen a little in the last couple of days, a very good sign.

Mum finished radiotherapy today, which is great, though for some reason yesterday and today she has been very moody, to the point, my dad and I are staying out the way. He wouldnt bring her moods up, as her husband i guess he cant, but if I grumble along to him, he does let it out a little, which I think is a good thing. Everyone is always, oh your mum needs support through cancer, but it is my dad I worry about. I do hope I get to pay him back at some point for all the stress he has been through. He really needs a knee replacement, but its just not practical at the moment.

So we go back to the chemo doc next week,for mum to decide if she is going to keep on with the chemo. It probably sounds horrible, but I hope that she dosnt. More for her sake. I do mean well.

It is also now starting to feel christmasy. Everywhere has the decs up and the films are starting on tv. Though, I did have to laugh at the decorations in my local the other day.

Its strange how your mind can deal with things. For so long after my transplant and time in hospital, I remembered very little of what happened, or I would remember very small facts,but nothing vividly. Recently though, some memories have been coming back.

When I was stabbed, it was the beginning of December, so most places were getting in the festive spirit and work had put their tree up. I was also make plans for Christmas dinner and presents that I needed to get. I knew christmas was fast approaching.

I was scared when I was in hospital, I had never been in hospital before and to suddenly be in A&E and then ICU, my mind didnt have a clue what was going on. I was also heavily sedated and in liver failure, so they could also have caused this bit. But I remember feeling safe. I knew things were not good, its hard to describe, but I felt relaxed. Kinda how I imagine a child feels when they gaze up at the christmas their first year of seeing it for what it is. I looked around me and I was lying on a comfy sofa, covered with a big thick patchwork quilt in red and green and stitched with gold thread. The room I was in, was a lot like my nans house. Same sort of layout and decor, but at the end of the sofa was a huge tree, that would never have fitted in my nans house. It was lit with twinkly lights and I could faintly hear music in the background. Bustling about in the same room was a short plump lady, wearing a long skirt and a white piney and mop cap. Looking at her I could tell she was old, but watching her she had the speed and heart of a younger person. She had a very kind smile and I remember her telling me many times, to relax, sleep, things were going to be ok, that she was looking after me. I felt all warm and fuzzy. I can still remember the feeling, though it is near impossible to put into words. She introduced herself at one point, as Mrs Christmas, or Mrs Claus for short. She was a great comfort to me for a while when I was first admitted. Of course, I have no real sense of time when I was in hospital and so I have no idea where that part fits in, but I do think it was near the beginning.

The following year, when I went back to ICU to take presents for the staff, mum says that I apparently told her that one of the short plump nurses, was Mrs Claus. Its strange what your mind remembers and when, but I often do get the whole image in my mind again, in such detail it is as if it happened yesterday. I guess the mind can be such a wonderful thing.

Though, I do wonder what other connections are there. Why it felt like my Nans house. Though, I am guessing around the same sort of time, my nan did phone my mum and tell her everything was going to be alright, because she had made a deal with someone, and she was trading her life for mine. I was going to live, and once I was back on my feet, she would pass away. I miss my Nan, especially at Christmas, but i hate the family tradition of going out of the way to put flowers and things on her stone in the cemetery. If my Nan were alive, she would berate everyone for doing it, tell them to stop being ridiculous, get home in the warm with your family and spend the money on something you will all enjoy, not flowers that no one will ever see.

Good things

2011-11-15T01:14:00.000Z

Good things are on the horizon.
I cant say what just yet for fear of jinxing it, but it is something that is going to take a lot of big steps, not just on my part.
But, after just connecting a few things, it all points to good.

I am excited, but alas, I am keeping it cryptic for now.

Now what.

2011-11-10T22:53:00.000Z

What do you do when the top doc in your area tells you that have no clue what to do?
It seems to be a reoccuring theme recently. Sorry if I sound bitter, but check the blog title.

Today was chest clinic. As I mentioned in my last entry, I am feeling rather crap, so I had hoped for a suggestion or anything that might make life easier. What I got was a puzzled doc. The bug is in my chest again, not sure if it ever went. All my tests are normal, so they have no idea why it is there, so they cant prevent it. The IVs didnt help, nothing is helping, and as it is rare to get it in your chest, they have no idea what to do with it. He dosnt think it is causing any huge problems, but generally he dosnt know. I feel awful, the pain is annoying and I am exhausted. We are going to try a long term antibiotic, but that is more to keep on top of any new infections. Other than that, go with it and see him after christmas.

He basically said, while your throat is a mess and your body is getting messed with so much in surgery so often, you wont be normal, you will continue to feel crap and there is very little we can do chest wise, till the throat is sorted. If you get further infections, we can treat them, but other than that, we need to try not to wear out the anti biotics.

Its disheartening. To have the hope, that yes soon you may feel better, and then a couple of weeks later be told, well you might, one day, maybe. Yes things are not terrible at the moment with my life. But I want more than to try living between crisis.

I over did things yesterday and so I am over tired today, so I slept all afternoon.
As a result, I have been moaned at so much today and I am losing my grip on staying cool.I am holding onto happy, but I am slowly slipping.

I know I am under the best docs I can be. There is nothing I can do at this point. Time to dose up on painkillers and go sleep.

Annoyance

2011-11-08T23:28:00.000Z

I painted my nails todays.
Well actully I painted them a couple of days ago with metallic silver. However, being the cool person that I am, I turned the silver into purple, from my hair. But alas, I had chipped it so today, I am rocking the Black and gold look.

I like this look.
Plus, its about the most I have done today.
Well technically thats not true, its still be radio clinic today. As of yet, mum isnt displaying any super powers. I was hoping she was going to learn to fly or move stuff with her mind, but alas, she is still the same mum. Albeit a mum coming down with a cold. Which gives me the opportunity to seek revenge and say, well you should have gotten your flu injection, like she usually spouts at me every year ha.

I have also been working on a card, but I threw it to one side in frustration. I am working in blue, and I just dont do blue on cards ha.

I think I am more just frustrated in general. my peak flows have taken another drop, the highest I can get them to today, after nebs is 200. I was coughing in the kitchen earlier and dad came to make sure I was ok, because, in his words ' I dont sound ok.' But again, coughing is relatively normal as is the restriction. The aching heavy feeling in the bottom of my lungs though, is a different story. But alas, I have clinic on Thursday, where I think, I may just beg him to fix me, or just like get rid of this pain. I wonder if its fluid building up again gah.

But even more annoying, is that my stomach refuses to let the lungs have all the attention. It must be close to 3 weeks now, since it behaved. And its getting tiring. I am alternating between having to run the loo, inc. several times a night, and then a couple of days, of being very gasy. I know im very classy with my description. Its just that I know I have to be careful to make sure my meds are all still being absorbed and rightfully, I should see a doc. But shoulds dont always happen and I hate talking tummy troubles with docs. I'm such a kid.

Anyway, off to watch some youtube junk and finish off apple tea before.

Random

2011-11-06T23:20:00.000Z

I am the kind of girl who, will try anything once.
I am most comfortable in jeans and tshirt.
My most recent purchase is my new cup.

(Yum hot chocolate)
My newest discovery is Earl grey tea.
My biggest dilemma, is what to do with my hair.
Every night, I like to annoy my parents. (They go to bed, but I always go and jump on the bed before they can get in and generally bug my dad.)
I will never grow out of colouring in.

My longest Crush is Joshua Jackson (Yes he will come sweep me off my feet one day)

The film that makes me laugh the most is Lion king 3
The person I miss the most is my nan.
I have a fear of octopus
Growing up I loved playing Robocod, followed by duke nukem.
I used to hate Barbie dolls.
I am a tom boy at heart.

For GCSE I made a Frank Lloyd Write inspired piece of furniture. (For which I got an A)
I also made a giant snowman costume.

My biggest addiction is Haribo

I have a thing for Canadians

I have never been in Love

Though I love singing badly to Disney music.

I hate the rain, yet love the crisp air of Autumn.

While in school I passed my grade 3 flute and picked up the basics on a few other instruments, such as a the recorder, cello, keyboard and violin, though never did any grades in them.

For a while, I was also part of the Liverpool University Junior Orchestra and played in the Phillamonic hall on a couple of occasions.

From the age of 13-16 I held down between 2 and 9 paper rounds a day

My current fav designer is probably Tim Holtz

Sitting on my bed currently is a couple of nail varnish, my head phones, my kindle, half a bottle of coke and a blank canvas.

I am currently working on an Advent Calendar

wake up

2011-11-06T01:42:00.000Z

I think I may have given off a wrongful impression, either that or I write things my mind hasnt clicked with yet.

Right now, I am in a good place. Mood wise, health wise, family wise.

Things are good, things are looking up.

I had Liver clinic on friday and whilst I often dont think about clinic, for some reason this one making me a little edgey. The last week or so, I have been having some stomach issues, which seem to be getting more frequent. I guess something in my mind, had perhaps linked it with Liver issues, I guess its something that will always be in my mind in some way. But, things are fine, everything looking good. Next month, I hit 9 years post transplant. 9 years is amazing, more than I could ever have asked for. And I am still so grateful for that. To my donor and to my surgeon for taking that risk.

The longer you are transplanted, the more the risks alter and so I think I am past the most feared risk now, rejection. My body seems to like this liver, and although medication is still needed and always will be, the chance of me going into rejection are a lot slimmer now. The risks now, more so revolve around medication side effects and secondary problems.

I am also well prepared this year and I have had my flu jab already. (Go me!) I didnt get around to it last year due to the whole pneumonia issue and being admitted. I cant afford to get sick this year, not that I could last year, but its done and out the way.

My culture results are back (I sent them off last Monday) and I have proteus in my lungs again/still. Not sure where we go from here, but seeing my lung doc on Thursday. Since getting back from London last time, I have been getting progressively worse chest wise. My coughing usually wakes me parents up, but I sleep through it, which has been true for the last week, but the last two nights, I have woken a few times. The bit that makes me anxious, is that, I really struggle right now to clear my chest. I have to kinda cough as much as I can, then stop and take a few shallow breathes, before a big breath to continue coughing. That coupled together with disturbed sleep, is making me tired and cranky. But this can all be fixed.

As for my throat, the lows are lower, but the highs are not dropping so quick. The new nebs, seem to be helping a lot. And although, I can often drop to 130 peak flow, with plenty of nebs and physio, I can, most the time, get it up to about 130.

Life is continuing. I have once again put my extender wire on my neb, meaning, that the 2 hours I often spend on it in the morning, I am able to move about and get dressed at the same time. Family issues seem to be settling too, which always makes me happy. Mums radiotherapy, seems to be going ok yeh, no new major dramas.

Life, although it hasnt changed, feels good at the moment. I do feel like I am changing though and thats a good thing. Since I left nursing, I havtn really given much thought to going back. Well I have said I want to and I do, but I havnt really felt it, if that makes sense. Tonight, for the first time in forever, I realized, that I still feel the same way. Medicine still gives me that warm fuzzy feeling, I can still picture myself standing in scrubs, looking after somebody, making a difference. Deep down, I still want to do. Perhaps my mind blocked the urge out when it wasnt possible. Is it possible now? In answer, I dont know. I wouldnt want to put a patient at risk, however, I know they have disabled students, there must be ways around it. So, I couldnt run up and down a ward, nor do loads of long shifts. But, I could do some. I always wanted to go to ICU nursing. I could still monitor a patient, care for them, mix the drugs and give them safely. I could do most of it, if I could just get through training.

I feel like something inside me is suddenly waking up. As if its been switched off for a long time and just booting in now. Its not just nursing, its boys and life and love and a million and one things all added together. I am ready to start my life, not hide around indoors. Things will pick up, things will improve and in the meantime, I can research and make sure I am ready.

RIP Jimmy Saville

2011-11-01T00:31:00.000Z

(This was actuly written yesterday, but silly me posted it in the wrong blog, doh)

He was a little before my era, more my sisters time than mine.
I guess that I can use that as an excuse.
When I was in ICU not long after my transplant, Jimmy used to come visit the hospital. He did a lot of charity work for all the hospitals in the Leeds area. The first time he visited, I was deeply sedated. But he remembered me,calling me, 'his little scouse friend' when he came back a few weeks later. I was a little more alert by then, but I still didnt have a clue who he was and was unable to ask. I recall thinking, is this the bloke who plays dumbledore in the Harry Potter films.

He insisted on having a photo taken with my family. It must have been early January 2003, as I am a good coloured (not yellow) but still on dialysis. I do not look impressed at all.

But, in short, RIP Jimmy Saville. You might have been a more eccentric personality, but a lot of clebs these days should take a leaf out of your book in regards to fundraising.

Long day

2011-11-01T00:05:00.000Z

Tomorrow, I think I will ache.
Well in truth, I ache now, but tomorrow will probably be worse.

I left ours at 8am this morning and apart from 20 minutes stop, i returned home about 11 tonight.

First off was radiotherapy with mum this morning. Then I had to go the the doctors. I needed to pick up my script, pick up some culture forms, leave a sample, hand in 2 discharge sheets and make an appointment for my flu jab. Oh what fun.

Then we stopped off for a late breakfast in weatherspoons, yum pancakes. Took mum for bread and milk and got my prescription sorted and then stopped at home, where I ran a couple of nebs to get me through the day.

Next I had to shoot up to my sisters, as she had a scan in hospital and I went with her for moral support.

From there, we were not far from costco, so went in to have a wander as they usually have the most wonderful christmas stuff. But I must say, I am not overly impressed this year.

From there we stopped at the supermarket to get tea in and I fell in love with a dress. Me a dress, I know! Not to mention its a Gok Wan dress and I dont agree with his principles. blah

Then we went home and had tea. oh damn, that reminds me, I forgot my apple juice. I have discovered the most wonderful winter drink.

If I said it tasted of winter, would you get what I meant? Its kinda, apple and cloves and cinnamon and yum. You heat it up and drink it warm, but it is so scrumy that I can see myself going through a lot of it this winter.

So yeah, by the time I got back to my sisters and we had tea and cleared up and I taught my niece how to tie a tie, ready for changing school next week and then I drove home, it was 11. Its been a long time since I have gotten through a whole day, I usually dont begin till mid day and days Ig et up early I usually need a nap. I just know that tomorrow I will pay for it.

mourn

2011-10-29T00:14:00.000+01:00

I read something the other day and it has had me thinking for a few days. It was something that has been on the edges of my mind for a while, but seeing it in somebody elses words, bought a little more clarity. She said, after transplant, life is not normal, is never will be. In a way, after transplant, you need to mourn the loss of the person you were before transplant.

Transplant, is such a huge thing to go through, that it would be near impossible not to be changed by it. Physically, emotional everything. Your routines change, your ideas and feelings change.

Transplant, to me and the time around it involved a lot of changes. From being a confident independant 16 year old with no worries and brain, to suddenly a life around rules, pills, routine, hospitals and a heck of a lot of work to get back into a postion of doing simple things like going the loo. A lot of things I blocked out, but bits keep coming back and everytime they do, I am still amazed at what it took and how the body can come through it. It took weeks to build the strength for my body to be able to breathe on its own, weaning off the ventolator was one hard task, its something you have to fight with every second. You cant take a break, you can stop when you get tired, you have to keep going. Moving on to tasks such as being able to sit up. My body was flat for so long, that it hurt my head a lot to be upright, my heart struggled to cope. Learning to walk, having to repeat in my head, foot up, move it forwards, foot down. Other foot up, move it forwards, foot down. It was hard, and it was many weeks till I was able to walk with out much concentration.

I also had a lot mentally to come to terms with. Being nearly killed day before I ended up in hospital, being held prisoner, rape, police examinations and police stations. At one point, I fell asleep under the desk in the police station. I had been awake 2 days solid, but couldnt bring myself to sit in the room alone, so I sat under the desk. To the eventaul stabbing and everything that went with it.

For a long time, I pushed the old me out. I didnt want to remember the person I was as it made the loss seem even more. But I did get angry, angry at myself, for not being able to return to the person I was. The person that could talk to anyone, go anywhere without a care. The person with heaps of energy who was always socializing, who loved to be independent and enjoyed getting up every day to go to work.

I realized a long time ago, that I am not that person anymore and I dont think I ever will be again. I liked that person more than the person I am now, but perhaps its time to move on. To mourn the loss of 16 year old me. To accept my new patterns and know that, perhaps they are not that bad.

I am a different person now. But that dosnt have to be a bad thing, it just means that I need to change my perspective and goals. Mourn the person I was and learn to once again love the person I am.

cest le vie

2011-10-28T00:56:00.000+01:00

Rachy passed away today. She was a fighter & and inspiration thats for sure. Breathe ease Rach. My thoughts are with her friends and family tonight. x (http://lungs-for-life.blogspot.com/)

I have discovered a way to get my hypertonic saline running easier without it leaving me in agony.
Usually, as my throat is being scraped every 4-6 weeks, it gets raw. I cough a lot, which irritates it more. So running hypertonic becomes a little painful. (think chapped/split lips and eat salt and vinegar crisp)

So anyway, tonight, I have had my humidifier on most of the evening and just left it on whilst running my nebs. oh it was heaven. As my throat is warm and moist, the salt isnt sticking, so im hoping its going into my lungs better. Weird feeling though, as I am blowing out through my mouth piece, the steam coming out was warm and so the plastic piece in my mouth was going warm.

The reason I am on my humidifier is my own fault. Last night, my body refused to shut down for sleep, so when my alarm went off at 7:30, the first thing that came to mind is, who hit me over the head with a hammer, closely followed with, who has been feeding my drugs as my vision was very wavy. After reassuring myself that no, I didnt go out last night, this cant be a hangover, my mind clicked, that it was in fact a migraine. I hate migraines. I have had them since I was about 5, though they started as stomach migraine. Managed to take some meds for it, but of course they take nearly an hour to kick in and this morning was not one I could delay or disrupt, today was about supporting mum.I managed the basic tasks like dressing, but the thought of nebbing when my head felt like it was splitting, was not a thought I could bare. It just wasnt an option.

So radiotherapy clinic went ok, though it is the first one so will take a while to hit in. But the staff seem nice enough so yeh.

By afternoon my head was still pounding, so I decided to nap it off. After about an hour, I remember half waking, but not being able to wake anymore. Thinking, something is not right, I cant breathe. After a scary few minutes, trying to wake up enough to get help, I managed to move to my other side, with aims of getting up, but quickly falling back into the abyss.

When Dad woke me later, I was breathing better than earlier, but still not great. I checked my peak flows and it was 110. I was like WTF!! Its been a long time since that low, were talking pre trach days, so god knows what it would have been when it woke me.

I have loads of treatments tonight and its back to 220, but just incase, I have made sure my emergency bells are still reachable.

Its just an odd feeling. Im not being all woe about this, I know its my own fault and I can take it in my stride, its just a little scare, to keep me on my toes. But it is annoying, today, isnt about me. My parents dont need any of this, I need to be supporting my mum. I cant afford to get sick right now. And the thought of not seeing a doc for 3 months, makes me a little nervous.

But alas. Tomorrow is a new day, and we begin again. Tomorrow I will wake refreshed from a nice sleep. I have just changed my bed and I am looking froward to snuggling down.

good, bad, indifferent.

2011-10-27T00:57:00.000+01:00

As the title suggests, this week has been a week of everything.

Today was Chemo clinic with my mum. They had to stop one of her chemo drugs on the last cycle, as it was causing damage to her heart. She was becoming increasingly breathless and not dealing with it well at all. so it became heart scans and medication and wait and see. Today she got the results of her latest heart scan and although the damage is not completely gone, it is getting a lot better fairly quickly. This is great sign. But it now means weighing up the options. The med that was giving her the most trouble, is called Herceptin, or more commonly that great new wonder drug, the one that has been the feature of many articles about postcode lottery due to its expense and a lot of places not offering it. She is meant to be on it for 12 months. So every 3 weeks, till August 2012.

We spoke with the doc today and she did some calculations at how much effect it will have. With the surgery, the chemo she has had and the radiotherapy, she sits at approx 68ish% chance of still being here in 10 years (Bear in mind that 10%ish in the other 32% died of other causes) To add this other drug, gives her roughly another 7% chance of still being here in 10 years. Now 7% is nothing to be knocked, I mean out of 100 people, thats 7 more alive. But, and this is my opionion no one elses, is 7% worth it, if it means for the next year, her life is on hold as she cant move about? Knowing my mum, I would say not.

I have noticed through this, how differnt she is from me in her ways of dealing with things. I tend to keep stuff in, protect others from the truth, and deal with things of my own accord. She likes to share with everyone, everyone knows how she is feeling, and if she feels rough, its not unusal for her to burst out crying along with slogans such as, I just want shooting, or why me. The way she was over the summer, to put her back to that for 9+ months, I dont think she would hack it. I think it would destroy her. Not to mention, all that time sitting, at her age, would be damn dangerous to her joints and her lungs. But, its not my descsion, and its not one I can partake in. She needs to make it herself. If she dosnt, then there is always the risk of blame and guilt if things go wrong. Plus how could you possibly say to someone, I dont think you should have a treatment that will potentially keep you alive.

So tomorrow, we begin radiotherapy. That is going to be 3 rounds of 5 days a time. So with the oncolgoist, mum has decided she will probably go back for a go on the chemo and see how it is, but we are going to leave off on it until the radio is finished. So stage 2, here we go.

hmm
As for me, im still coughing a fair bit, though the coughing fits have eased a little, but the stuff im coughing up, not good. My peak flows dropped to 200 yesterday, despite nebs. I have also coughed up a lot of hard crap. Today, my peak flow jumped back to 250, yet I feel breathless, which dosnt add up. So silly lungs need to start behaving. I wont gross you out with stomach issue crap, due to increased chest crap.

And, as for the last one, I dont know if I blogged about this, but I think I am becoming more accepting of my transplant and finally reaching a point of acception, the point where most other people reach soon after. Well anyway, I want to know more about my donor. I dont even know if it is possible, with it being so long ago. I mean I know nothing of them, age, sex, nothing.

The only place I can think to ask is my transplant centre, Leeds. However, I want to do this on my own, not with my parents, just something I think is more private to me right now. Well, next week I have Liver clinic. More has radiotherapy and my niece is off school. PERFECT! This means, mum will be happy to let me drive to Leeds with my niece. (she dosnt like me doing long drives on my own incase I have problems) And as she has clinic, she can stay home. Which gives me perfect opportunity. And then, I shall leave it to fate. If they can give me details, then so be it, if they cant, then I will know it is time to move on. I mean really, how long do they keep records of that stuff.

Yup, and so, sleep time, as I have to be up in 7 hours.

Frustrations

2011-10-23T00:13:00.001+01:00

Despite my best efforts, my peak flows are once again dropping.
I am continuing with all of my nebs plus extras.
I have also been humidifying nightly.
In the past couple of days, they have dropped from 290 to 250.
That might not sound much, but believe me I can feel it.
To get 250, requires work. Right before a neb, it is pretty much 200 once again.
This is my first frustration.

My second one, is that my lungs seem to be enjoying plating up.
Right now, the bottom section of each is aching like mad.
I have really tried focusing on my physio, but it is not alievating it.
I have been coughing a lot.
Yesterday, I had to run into a shop while out and buy a cough medicine as I couldnt breathe for coughing.
I dont usually like to use cough medicine as if I am coughing it needs to come out.
I do however normally have a cough syrup on hand to ease the grating i get on my throat from coughing.
That wasnt enough yesterday.

Third.
I was told by London that they would see me for surgery again early december, in 6 weeks.
I have just recieved a clinic appointment for mid january, making it 3 months for out patients.
I really do feel like I am banging my head on the wall with them sometimes.

Fourth
I also got a letter to tell me that they wont pay one of my transport claims.
This is because you only get 3 months to claim them and it was outside of that.
The reason it was late?
I sent it to them, but it ended up at the sorting office and they were asked to collected, but didnt.
When I resent it, I explained all that, along with sending the original and letter from the sorting office as evidence.
They just returned the tickets with no explanation of evidence.

So I am having to use the painkillers a little longer.
But other than that, things are ok.
I have just gutted my first pumpkin of the season and made my own pumpkin soup with it.
I have never had pumpkin soup before, but it is very yummy.
I may have to buy more pumpkin as my torts like it as well.
These are my carvings from last year (and it was the first time I had ever carved them)

I want to make a fall display, so I have ideas for that running through my mind right now.
I dont know, I am just so in love with this seasons colours.
The rich dark oranges and browns.
Its a very under rated season.
I mean winter gets all the attention of Christmas.
And spring gets baby animals and easter.
Summer gets sun and beaches.
but nobody really decorates for Autumn.

I also got some very pretty Christmas papers yesterday that I cant wait to use.
I have a fair few projects in mind for them.
I have a few cards that I need to do this week to.
And I also need to format a computer, maybe even two.

So there is plenty that I can be doing.
And right now, that is what is keeping my mind active.

And for that I am glad.

Waiting

2011-10-19T23:33:00.000+01:00

The more time I spend in the ENT hospital, the more I am awed at the work being done.
When I was first told that I had tracheal stenosis, I knew nothing about it and no statistics.
As time went on and the internet grew more developed, I read more and more about it.
When I went to uni, I scoured the library for books, for any mention. Those were the books that told me it was rare, that the fault mainly lay with being in ICU. That, the chances are staying stable were fairly good.

As breathing got harder, I once again, gave in, my orginal surgeon had told me that in the future, things would be easier to fix. Well 5 years was future enough for me so I went back. But it didnt go to plan. And once again, I began researching things. This time, the internet was a great source of information, leading me eventually to my surgeon and some researchers.

It still want enough for me, I wanted to know more. I read books and journals, and I searched for others. I found others. But was once again told that it is fairly rare, that finding other people, especially my own age, would be a bit of a challenge.

But for the past year, I have been gathering information. I have been to the hospital on average of once a month for 18 months. And each time, I am in a ward full of people in similar circumstances. Each time, more people, facing the same questions. I know you shouldnt listen, but its hard not to hear. You need a reconstruction, you need a resection, we will see you in 6 weeks, we will see you next year. You have had 2 reconstructions, lets carry on further.

Everybody is waiting. Waiting with baited breathe. For times to change, for new research, for new laws. But does it matter, there all just waiting. Making the best of what they have, even if they have to be in hospital every other week.

And with this realization each time, the world gets a little bigger, brighter, bolder.

There is a rumbling in the ground, if you put your head down and listen you will hear it. Change is all around. Patients are being moved and transfered. Everyone is still waiting, but those who are able to wait, are the lucky ones, they are the ones who will witness the change. I count myself in that. I have waited all these years, I still have time to wait. The people this week, all have time to wait. we are all so differnt and yet so much alike. No one persons pain is more than an other, and no one need is more dire.

2 reconstructions / resections seems to be average, but average of course means lots with more, lots with less. 6 weeks seems to be optimonal time between treatments, but again, this means people at a year and people at a week.

There is change all around, big change, but it will come slow. And I am so thankful to be able to witness it. I truly do believe that if I were to still have my trach with no reconstruction, that I would not be here now. Fate is acting at this point.
Maybe its a good thing.
Maybe its a bad thing.
But wait we must.
For it is those that cant wait, who will suffer greatest.

right

2011-10-19T14:55:00.000+01:00

This maybe harder to upkeep than originally hoped.

I know the docs said that I need to keep on top of this and I do feel the differences this time, but something dosnt feel right.

I can feel that my airway feels wider, but, it keeps blocking up easy. My peak flows have done a huge jump from 150 to 280,that is amazing. But, to keep it at 280, involves virtually permeant nebbing.

Right now, I am doing perhaps 4 hours of nebs a day, plus humdification. I am cycling with my ipratropium followed by 2 or 3 hypertonic. All well and good and it seems to work. But, I have a new issue, whenever I cough, I get a rather odd feeling in my throat. It kinda feels like it is numb and on fire at the same time. Usually at this point post surgery, I still have pain, there isnt any right now. Just this odd feeling, like tinginling. Its amazing as I can tilt my head back and still be able to breathe, usually I can only tilt about 35% before my airway blocks off.

But I have awoken exhausted again. I spent the night coughing. And now, I have just thrown a slight temperture.

This is where I encounter problems. Being so far away from the hospital, makes it difficult to speak to anyone. In almost 2 years I have only had 2 out patient appointments. I spoke to my surgeon as they were putting me under on Monday. I dont know what to expect. I dont know what is normal any more. But this, this is tiring and I dread sleep for the work I have to do upon waking.

This has to settle as I get furtehr post surgery right?.

Amazing!

2011-10-17T18:42:00.001+01:00

After one of the hardest months i have had in a long time, it seems the work is paying off.

Today was laser day. I have just seen one of the surgeons and he said compared with my previous ones it looked amazing. We are down to only a 40% black now. That is the block of tissue there was a lot of other crap built up in the area but the hope is now the antibiotics have cleared things up that it should stay clear, with a bit of work.

My energy levels seem to have increased and now hopefully my breathing will too.

How exciting is that. I have a huge grin right across my face. We are going to review again before Christmas but i have a good feeling about this.

If it carries on like this i maybe able to return to work in the new year. So many plans.

A new lease of life away from hospitals.

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Hectic

2011-10-16T17:10:00.000+01:00

This month has been a tough one, but this weekend has been a good one.

They finally said I could go home on Friday. My cultures came back clear, though I did spend a day struggling to keep anything down as the antibioitcs had messed with my stomach so much. Not a huge problem, but it did lead to me having to run our mid physio session to get to the loo quick enough. Which in turn led to my physio pestering me to drink some lucozade and such. But once the meds have stopped and I slept for anumber of hours, things have slowly began to improve.

So I was discharged from hospital about 1pm and by 5, I was shopping in London. YAY.
Got some makeup and such and then we had a quick bite to eat, but getting changed and going out for the night.

It was after 3 by the time we got home, but plenty of dancing assured we had a good time.

Saturday, was a rather sunny day and so after a rather slow start to the morning (yeah we are the cool kinda people who text each other of a morning even when we could just shout) So we headed off to Oxford to meet some friends.

I do love oxford, the ultra modern high class society mingled in with such an old town. The cleanliness and general beauty of the town always takes my breathe away every time I see it. On a fair few occasions, I did have to reel my inner camera geekiness in and resist lining up the perfect shots.

The good thing about rambling across a town with a large group of people is that everybody walks slow and so I am able to continue conversation as I go.

It was fun and the weather did pay a large part towards that. We had drinks and sat out on the grass for a long period of time. Later we went for the traditional Oxford milkshake yum. Milkybar was my choice of poison this time. We also did the tradtional bens cookie stop and finished in the pub.

It was late by the time we got home and so today, we are still in our PJs.
So overall a good fun weekend has been had.
Yay.
And then tomorrow, is back to surgery, bright and early, that should be fun.

Look what I have just stumbled on.

2011-10-11T15:23:00.000+01:00

I knew Eva had painted a few other people, but up until today I hadnt seen the results.

Eva you were one amazing person, look at you still changing the world so much when it has been a while since you were in it. If only you could have carried on, its hard to imagine the places you might have been by now.

The picture is being used as part of the Canadian organ donor campaign Live Life, pass it on.

As for me, well im still in and im still on IVs. Do I feel any differnt? nope.
However, the last doc must have gotten a good vein, as my last cannula, is the first one I have had in the past 3 years that has lasted the maximum allowance of 72 hours. Fab news. However it has meant that it has had to be resited again today. 2 doctors, 7 stabs and I know have a new cannula in my little finger. I doubt this one will make it 72 hours, but maybe I will be out by then.

Though I was asked when i had to leave for London and told they will discharge me at the latest of lunch time Sunday. Fun huh? I intend on being out before then. Just waiting on stupid culture results.

Though I think the meds are finally building up in my system. I feel nauseous today.

But what is worse, is that I have stopped sleeping. Yeah very odd for me. And I cant work out why. I have tried taking my meds earlier. Tried winding down, wearing out and not napping. But alas I am still wide awake at 5. I eventually drift off and get woken for IVs or because I have to go the gym.

i dont know if my mind is going into dread perhaps. The last 4 or so nights, I have had the most awful dreams. Very vivid, very scary and very messed up, involving lots of dead people, killing and running. I wake up several times, even get up and move about hoping not to fall back into it, but I keep doing so anyway. Hurry up and change the damn IVs please.

As for Physio, I was assessed today. I am at pretty much the same point that I was at when I was discharged with my trach. I dont know how I feel about that. I have worked to build up my fitness and I have lost 20kgs, putting me out of the obese catagory and just into overweight. So that should help. But the restriction and hospital time is still taking its toll. But, at least I am not any worse.

They say

2011-10-10T22:47:00.000+01:00

That the highest and the lowest points are the most important ones. What if you get them at the same time?
I follow a fair few blogs on here, a lot of which are in relation to transplant.

It is with sad news today, that I learnt that Rachy (lungs-for-life.blogspot.com/) is at a point in her life where she is not going to recover, she is very ill. She has done a heck of a lot in her life to raise awareness for organ donation. She got her call for a double lung transplant March 2010, but recovery was not straight forward and she has been struggling since then, yet always has a smile on her face and no regrets.

And in my next breathe, Tor (http://tor-pastthepointofnoreturn.blogspot.com/) who has been waiting for a double lung transplant for almost 4 years and had 8 false alarms, went into theater at 6pm tonight for a double lung transplant.

The emotions both families and loved ones must be feeling is enough to blow you away.
My thoughts are with Rachy and familiy as well as Tor and familiy and the donor familiy tonight. I hope everything goes smoothly for them.

tanlged

2011-10-09T02:00:00.000+01:00

I just got myself well and truly tangled up and had the nurse laughing at me. :/
If I go out for the day, I usually have to be in for 10 for my IVs, but the nurse told me to come back whenever I felt like (but obviously not stay out all night ha) So it was just after 11 when I got back in. I got side tracked rebuilding a computer.

So I sat on my bed whilst the IV was hooked up and the nurses wanted me to run a couple of extra nebs as she said I sounded chesty. She has never heard me when I have been moving around, but she insisted. So I began running my nebs, stuck my headphones in and plugged my laptop into the mains. The nurses stuck her head back into my room to see if I wanted a drink and as I turned around to answer her, I got completley tangled between the wires. That was my amusement for the day.

So how am I feeling? Still kinda crap. I dont know if it is because I have settled in here or what, but I find it very difficult to wake up. My breathing seems to be about the same. I have been on IVs for about a week now and yay for my current cannula still lasting even if I do keep catching it. Lucky number 5. Up until friday, I had pretty much stopped coughing, though now I feel my cough creeping back in.

The more annoying thing? I have only recently gotten back into being able to use my hypertonic saline as it used to make my throat burn. But now, it barley seems to be working. I can run 3 full nebs in a row and not cough even once. I know there is still crap there, but my best way of shifting it, is to hang myself upside down.

So samples sent off this morning and I am getting icky coloured stuff again. But im already on IVs damn it. So awaiting cultures. However, I am due in London in a week. I dont know when the latest is that I can come off the IVs and still be acceptable for surgery. But then the docs down there are aware of my crappy immune system and know half the time im on antibiotics when i go down. I am at that point where each time I go down, they just ask me to give a quick update since my last addmision to put in my notes. They are a good crew down there, I may have some grumbles with the hospital, but the docs are all wonderful, even if I dont ever actually get to talk to any of them.

Now, as for this hospital. I love this ward so much. Perhaps it is because they are used to having younger patients, they deal with a lot of post lung transplant patients and CF patients. Its amazing how many times a day I get asked if I am CF, think its an age thing. But, they dont bug you. They dont wake you up for silly things. No making the beds at stupid oclock, if your asleep they dont bug you for obs, the let me run my own medication. They are fab. And its not just a sleep thing. They all chat to you. Walking past the nurses desk and at least one person will ask how you are feeling and if you feel any better. I had a full 20 minute convo with someone the other day just about books, swapped hair dye tips with another person and they just generally go out the way to help you. I am a night owl, but every time they are making tea and my light is still on, they always ask if I want some.

Blah enough ramble for tonight.

Bad day

2011-10-06T17:48:00.000+01:00

Today has been a horrible day and its not even 6 pm yet.

The doc came to re site my line about 3am. After 3 failed attempts, she gave up and said she would get a doctor to do it today.

I feel like crap today. I woke about 10:30, got washed and changed, meds and nebs and by 11:30 I was fast asleep. They woke me for dinner, but I didnt eat it as I couldnt wake enough and was to tired.

They woke me about 4, as a member of another team was going to put my line in as I was missing my meds. He was lovely and instead of just putting the line in, he looked at all my notes and such. After a very long examination, he declared that he can feel a fair amount of fluid on the bottom of my lungs. He wanted the respiratory team to review tonight.

He eventually got a line in, on the back of my wrist.

But chances are it will have blown by my night time meds.

The respiratory team have reviewed me and decided to carry on as is and that my lungs are ok, this was after a 2 min check.

I can barley stay awake. My head is pounding. After having no dinner, I barley ate my tea. It was cold by the time I plucked up the energy to consume it.

I feel worse today than I did when I came in.

Here is to better days tomorrow.

Rose

2011-10-06T02:14:00.000+01:00

Since my arrival on this ward, I have been plagued with some sort of memory that is trying to make sense to me. Well today, it came clear.

On this ward, when the nurses do drugs rounds, there is none of that finding a drug card crap, its all stored on computer. The computer gets wheeled around the ward by the staff and all the information is there. It makes sense, yet seems very futuristic. Here is the machine outside my door.

Yeah its not very clear, but you can kinda see it. Well, tonight I just remembered why it looks so familure. It looks and vaguly acts like Rose, from the Jetsons. Please tell me you remember her haha.

Ah, this has amused me now end.

The excitement huh. And I know I know I should be in bed, but I am awaiting venflon number 3 to be resited.

There was talk of attempting another long line today, but then they couldnt pin down a time and I got stolen by another doc.

They are taking new junior docs on and they were all getting their skills tested before being allowed on the wards. They were a patient short for their mock ups so one of the docs asked me to stand in.

It was amusing. I saw my first chest doctor that I had like 7 years ago. It was good to catch up. Though, after talking to me, they decided I was a little to complex for a new doc, so decided to just use me for my body pfft.

They asked the docs to each demonstrate how they would check all the pulse points and report back.

Well, out of 10 students, I think only one could find my pulse in my radial (wrist.) My femoral (groin) and any others they decided to go for were a little more successful but not much. A lot of them came up with random things like perhaps I had a major blood clot that was stopping my pulse from getting out to my limbs. One also used so much pressure trying to find a pulse in my neck that I couldnt breathe. That was interesting. Oh the joys of having had far to many arterial lines.

The more fuuny/embarsing bit,was because it was last minute, I had to go as I was. So when they checked for a femoral pulse in my groin, they got a lovely view of my MrPerfect, Mr men knickers. haha. Pretty sure I caught one of the real docs stifling a laugh.

But, I did have a fun convo with the examiner bloke. He was ok, and had to time everyone, he was trying to pass the time but didnt want to stand still staring at the floor. So he started kinda dancing. Dont think he realized I was watching till he turned round and saw me giggling. From then on he didnt sance anymore, but did stop for a natter and a discussion on the students.

List

2011-10-05T01:21:00.000+01:00

Does anyone recall I wrote a list to be be recalled every 6 months. Well oops I forgot, so 18 months on, I have decided to renew it.

So original list; (http://mygenerallybitterramblings.blogspot.com/2010/07/future-list.html)

*Finsh 8 true blood (i'm on to book 3 right now)
Done and read book 9 too.

*Start reading lord of the rings (Been meaning to do this one for the past 5ish years)
Still to be done ha
*Completely make one wearable item of clothing
Did this one. A 60's inspired skirt and a halloween skirt. Also done a couple of tshirt recons and a handbag.
*Have 3 picture frames on my wall of my nieces and nephews
Did this about February, though they are due for changing.
*Have another special day out with the 3 sprogs
Yeh did this a few times though it quickly dropped to 2 sprogs due to family circumstance
*Change my layout on blogger
Did this one with my venice layout, though again think it maybe due a change again soon.
*Enter a photo competetion
Think I need to improve a little more with this one.
*Produce a photo book with holiday 2010
Did this one and I love my book <3
*Do some sort of charity/voluntary work
I kinda did some photo editing for charity but this is still an area to improve on.*Make a sock monkey
I have made several of these and actully have half a one on my bed right now yay.*Get photos & files off old laptop
Done this one. Was amazed at some of the pics that turned up.*Create a one year blogging video
Did this one.*Watch 10 films that I havnt seen off the IMDB top 250 films. (Think I have seen about 40ish at the minute)
I am actully up to 76 now yay. Added to it this week with the godfather and Amelie.*Have a boys night in with my nephew (Yes, I know I am not a boy, but I do all girly hair and make up stuff with the girls, but I have always been a tom boy at heart. A boys night in would involve pizza and video games. Sounds pretty fun to me.)
Again due to familiy crap this one has not been possible really. We did have a smallish one, but I was unable to eat and such due to being ill but blah.

There is so much more I want to add to the list. But right now, I feel I can put some longer term ones in. When I wrote the orginal list, it was hard to imagine 6 months into the future. But now I can. So my next set of goals.

I want to spend some more time in Venice. I dont mean day trips like I have done before. I want to stay in a hotel in Veince. I want to sit on the floor and people watch, listen for the accents. I want to lazily stroll the streets and get lost. I want to visit the parts that are not seen often. To sit in St Marks Square with a drink at the posh resturant and listen to the band.

I want to visit a circus. I have never been and feel it is something I am missing out on. It looks magical, though I think it was the film water for elephants that got me this feeling.

I want to visit a christmas market abroad with a friend. Somewhere like Germany. The culture, the atmosphere, the general christmas feel. Walking out in the snow looking for gifts, then coming back and curling up in a big arm chair next to a fire with a mug of hot chocolate or mulled wine.

I want to throw a kids halloween party. I know this one is a bit odd. But I loved getting dressed up last year and carving pumkins. I want to do it again. And I have some good ideas. Now just to find the kids mwhahah.

I want to make some cards and such for money or even charity. I have a few ideas. Maybe, though I dont know if they would work, but perhaps, cards for organ recipients to send to donor families. Maybe even with a keepsake, such as a book mark.

I want to go to Paris. Again not with my cynical parents. I want to see it fresh. I want to see it in the sun, to ride the metro, to sit outside a cafe drinking fizzy water (i dont like fizzy water btw),to ride the sane, to picnic under the tower.

I want to do something completely outrageous. Something spur of the moment. I dont know what, something that will amaze people I did. Something to look back on and laugh.

I want to have an amazing Christmas. I want to make my whole (close) family a stocking or such each, that is personalized. I want to set up the dinner table nicely. The dinner table has always been my job and it is always very pretty, but this year, I want it to be exceptional. Maybe place settings and such we shall see.

I also have some that I know will probably never happen. For example, I want to visit chernobyl. It is possible but there are strict rules. If I were to have some incurable disease, I would go offer my services there. They need to build another dome over the one that is there as within the next 15 years or so it will have detroited that much that it will leak causing a lot of problems. The people who built the last one all died from radiation, but the levels where much higher then, but even now it would be a big risk.

So, I am carrying forth, 9 new items and 3ish old ones.
yay

ick yay ick yay

2011-10-04T01:31:00.000+01:00

Have I ever mentioned how much I detest salbutamol? No?

Well I flippin hate the stuff ick.

I can neb it dont get me wrong, however within a few seconds of beginning in it I end up shaking worse than a tumble dryer. So yeah, having sewing projects to keep me busy has caused a few annoyed grunts when I cant get the thread through the needle.

However, today I spoke with the doc about it and they agreed to discontinue it and see how I go on the other neb. It does kinda help. It doesnt help my breathing as such as it is scar tissue in my throat not swelling so no steroids or bronchodilators are going to help there. However, it does open those little airways in my lungs which in turn help me to cough. so YAY

You may also notice the new neb top. I have been complaining for a while that my current one bugs me as I lose half the neb whilst it sits in my nose. Its also unber annoying as it makes my nose run haha. So physio got me the mouth piece top to try and boy do I love it. I dont think I could run my hypertonic through it, but for all my other nebs, this is fine.

Just incase you hadnt gathered, I am in hospital and on some wonderful IVs. Actully im not going to complain about them, so far, I have not noticed any side effects so yipee. Well apart from the obvious annnoyingly having to be cannulated all the time.

There was talk about putting a long line in today, but alas, I know I have been there in the past and my viens are to weak to stand up to long lines. It does worry me as I am fast running out of access points.

But in other news, I love love love this ward. First off free wifi yay. But the staff are wonderful. As its medical not surgical, I had to kinda put my foot down (which I hate doing) and request a side room, else I would catch all kinds of chest bugs. They were fine with that.

But, they also leave you alone when sleeping. They dont wake you for pointless obs or anything. They know I do my meds, physio and nebs without pestering, so they just run my IVs and let me sleep. To the point where I had drifted off and a nurse turned my lights off and shut the door to keep the noise out. So sweet.

My one complaint, is the dinner. I can not eat their sandwiches. I think there is a choice of 6 differnt ones, and 4 of them have mayo on. I am not allowed mayo so that leaves me chicken and chesse and tomato. But its the butter they use. Its so thick it looks like mayo and it tastes rank. I cant bear the texture in my mouth. But oh well.

Fingers crossed I get out with enough time to go visit a friend before my next surgery. where has the last month gone.

Days like this.

2011-09-30T14:10:00.000+01:00

Its days like this that make me grateful for where I am now.

The sun is pouring through the window and although I love the sun, it means that there is nowhere cool. I am sitting in my room, windows open, blinds shut. Its dark but so warm that the sweat is pouring off me. It makes breathing very difficult and moving virtually impossible.

It brings back memories of hospitals. Running infections, attached to machine stopping me from moving and a temperature through the roof, that even with fans on, leaves me feeling so hot and exhausted.

I know that I am very prone to infections and also to complications. And that is why, I am glad at this point that I have not had any further surgery.

I am still awaiting a call from the hospital, I do hope it helps yet I dont want to get my hopes up to much.

I am working on a plan for when I do get out.
I am ready to accept things for what they are. I am going to make the most of what I have.
I am going to ask my surgeon to work with me on getting the time between surgery longer. By Christmas, I aim to only need it every 3 months, I dont care if it makes things hard.
I need to build up my strength and fitness.
And I am going to say no, to any more 'radical' surgeries as he calls them. No more experimental, no more attempts at the unknown. Keep me breathing as I am, if it gets to the point of being trach'ed then so be it, but no further surgery after that, I will work with what I have.

I swore after my Liver transplant, no more transplants and I want to stand by that. Its something I have spent a long time thinking about.

I have a lot of reasons for it. I cant put my family through it, they cant deal with all the trips and disappointments and bad news.

I also wouldnt want to effect leglistation. I know that probably seems silly, but if they are given trial allowances and my body being difficult messes things up, then I would not like that. They need some straight forward things first. Plus they need to make sure it works from their end.

There are so many reasons piling up, that I know, right now,I am making the right descsion.

Now if this heat would just let up it would make things a little easier.

Goodish news.

2011-09-29T10:16:00.000+01:00

hmm so spell check tells me goodish is a word, who knew ha.

So this morning was finally my follow up to chest clinic.
After running a heap of tests, my lungs do show some inflammation, but nothing that would give me the degree of discomfit that I have.
However, my cultures, for the past couple of years, have shown an unusal bug. Its normally a stomach bug/germ but it is in my lungs. They ran tests to try and find out why or how it has gotten into my lungs, but they all came back clear. So it is a mystery, but could have occured during any of my procedures.

So basically for the last couple of years, I have had a continous infection, which is why I have been feeling so crap all the time. When I get an infection on top of that, that is when I feel dreadful.

So the good news is, with treatment this will hopefully clear up, giving me more energy and curing my breathlessness. The down side is, they want to treat with with some super powered antibiotics for at least 10 days, which need to be given IV. So they are arranging a bed for me, and I will be admitted for 10 days before being reviewed to see where we are up to.

But yay I might be able to breathe by the end of it. How good would that be.
He called it sterilizing my lungs.
And once that is done, hopefully there wont be to muchdamage and it wont come back.
so yay.

2011-09-27T21:51:00.000+01:00

I have been staring at the screen for a few days now trying to find the words to post, yet they do not come.

I dont know where I am, or where I am up to. I feel lost within myself.
Life is going great. I have social stuff planned, I am keeping busy and I am talking to people.
I am infection free and my throat is in a place where it is consider pretty good.
So I should be feeling good right?

So why arent I?
Why am I waking several times a night, chocking and spluttering, doubled over, legs crossed coughing solidly for a full 10 minutes, until I have to run to loo for fear of not holding my bladder whilst coughing. Why am I waking up every morning having to literally drag the air into my lungs. Why am I embrassed to be around people as I make so much noise whilst breathing. Why am I so exhausted that I sleep for 14 hours straight and still cant stay awake for more than a few hours in the day. Why do I feel like giving up so much. Like curling into a ball and shouting, I give in, you win. Why do I have to cry in short sobs, holding my breathe to settle it to save gasping.

I should be normal, im not ill. I should have the energy and ability of any 25 year old. I should have plans and commitments. I should have peak flows of 450 not 130. I can tkeep fighting and investigating. I cant keep being the one to to chase diagnosis. Please someone just say this is why it is like this. Tell me im not making it up before I go crazy. Or, tell me I am making it up or exagerating and tell me to get on with things.

I cant keep going in this limbo land where I dont know what is what, living from month to month on promises that are never going to come, promises that I dont need.

Im not sick. I need to stop chasing hope and admit that I am a selfish freak who exagerates.
I should just burn.

Good night Grandad

2011-09-27T00:20:00.000+01:00

Today was the service. It was lovely.
I said my goodbyes and the tears ran right through the ceremony.
The lone bagpiper walked ahead of the funeral car and going into the church he played amazing grace.
The remaining members of his troop, The Liverpool Scotish Caemeron where there to wave him off. There are now 3 remaining members from his troop.

Moonlight and Roses was played at the end of the service, which was Harry and Audreys wedding song.

Its strange, I could virtually picture the two of them dancing together, dressed very elegantly.

His last words were to tell the nurses that he had had a good life and married the most wonderful and beautiful woman, along with having a wonderful daughter.

Rest easy Uncle Harry (honorary granddad)

death

2011-09-25T00:19:00.000+01:00

Death is a funny old thing.

When I got ill at 16, mum said I couldnt die, because I didnt know anybody on the other side and I would be lonely.
It was true, up until I was nearly 18, nobody in my life had died. Perhaps it was an age thing. I grew up with one grandma. And I loved her to pieces. Both my grandads died before I was born. I remember watching the film Grandpa as a child and crying right through it as I didnt have a grandpa to read me stories or do fun things with. My mum is estranged with her side of the family and so I grew up with just my dads side of the family. He had 9 brothers and sisters and his mum was my Nan.

I loved my nan deeply. When I was ill, she phoned my mum on night and said, its ok, you dont need to worry anymore. I have made a deal with god, and I am switching places with her. She still held up this story once I got well. That she was making sure I was ok before she said goodbye. 4 years later, once I had gone back to uni, she got sick and eventually died. It wasnt unexpected, she lived to be 92. But she was an incredible woman with an amazing story.

At 14, she didnt get on with her mother and left home with her aunty, by ship from Ireland to come and live in Liverpool. By 16 she was working full time and had her own place and a man. When the war set in, she had 2 children and had recntly lost another. She was shipped out to live in York with her children. Once she came home and her husband returned, 9 months later my dad was born. And followed after that the rest of her children. She lost another two when they were young. All her life, up until she was about 70, she worked. While the kids where at home, she worked 3 jobs and made sure they all went to school.

There is a lot she didnt remember and nothing could back that up. She had no idea what happened to her parents, or even her full date of birth. The place where her records were kept got bombed and so they were destroyed. But she was an amazing woman.

But this entry was not about my nan. so I shall continue.

Over time I have lost a lot of people. My dads brother and sister both passed as well as their partners. Other semi relatives have passed and people who I have spoken to have also.

This week my neighbor passed. Again he was an amazing man. He fought in the war and had all his medals to prove it. When I was growing up, he used to call himself my adopted granddad. His wife spent a lot of time in ours talking to my mum and such and every chirstmas they would both get dressed up christmas morning to come visit. The photos are wonderful.

He was always the life and soul of any party. First on the dance floor at any occasion and usually with a silly hat. Whenever I visited, her would call me princess and get down on one knee to kiss my hand.

The last few years have been tough on him. His body has been overcome with blindness, deafness and Alzheimer's. He even began having this kind of mini stroke every few weeks which really effected his memory. His life was no longer his own.

In the end, he developed a urine infection, that quickly spread to his kidneys and destroyed them. He had palliative care in the hospital on the last few days and passed on last week at the grand old age of 96. He didnt quite get his letter from the queen for turning a 100, but he did get a letter congratulating him on 70 years of marriage off her.

Maybe its wrong, but I dont feel bad that he is gone. In the last few years, he didnt have his own life, his body had aged to much. He had no pleasure in life, not even remembering his wife. I dont want to remember him like that. My memories of him shall remain of him being himself joking about. With him having a full blown conversation with tickle me elmo, challenging him to a fight. And when Elmo laughed? Elmo got a good ole telling off about minding his manners and a clip around the ear, while everybody else sat giggling.

Good night Uncle Harry. Your with your familiy now, but I know you will be waiting for the love of your life.

Its a new dawn

2011-09-20T01:18:00.000+01:00

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!

Night time camera adventure

2011-09-19T00:04:00.000+01:00

This evening I am huddled up with a box of tissues and a warm drink. How unlike me, I dont do warm drinks hehe.

Did I mention last week that my dad had a rotten cold? Mum had to kick him out to sleep in the spare room so as not to get her sick.

Well, last night, I began with a cold and after a long night of coughing and spluttering and generally keeping everyone awake, I now have a full fledged cold.

Lovely. Thanks for that one dad :)

Normally I would have just slept all day,with it being a sunday and my dad was working. But I took on my first proper commissioned card and so I had to get up in the morning to complete it. My niece was also staying and I dont like leaving her alone with my mum too much. Sounds nasty, but my mum seems to like to whine to her about how ill she is. And at 12, I think the poor kid has enough to be dealing with, without hearing the hard truths about chemo and cancer. Maybe its just me, but I am defo one to keep medical crap as much away from her as I can. I mean she was shocked the other day when I got somthing out my top drawer and she saw all my pill boxes.

But anyway.

Last week The Queen Mary Cruise ship was docked in Albert Dock. I only heard about it on the radio in the day but I was talking about it with my dad. And given my love for night photography I decided to go down with dad and have a look.

We were a little later getting down than planed due to Dad helping a damsel in distress so to speak. She had broken down and was trying to push her car off one of the main roads by ours. So dad jumped out to help and I was able to jump in dads car and use his to shield them.

Anyway, as we were late getting down, we also saw the firework display and I got to have a nice play with my camera.

The ship itself was bloody huge. It still amazes me how something like that can float.

I also came to the conclusion that I really do need a better zoom lens. Ah, something to prepare my bank balance for.

And I was able to get a nice one of the Liver Building with the Liverpool Wheel in the background.

And some more of the docks. Though these were harder to get due to large number of people walking across the bridge making the pics blurry.

Pretty Fireworks

This is the building next to the Liver Building. It had pictures projected on it. The building is the Cunard building, which yup, is the people who own the ship. The Cunard building though has been there since the docks were expanded many years ago to meet the shipping trade for Ireland and America. At the moment we can accept cruise day trips and uk based boats, but nothing more due to not having a customs terminal close to the docking port. This pictures show the history of the Cunard company. It is a wonderful building and one that has been preserved well. There is a big hidden secret in this building that isnt known by many. There is one area of the building that has been kept exactly as it was in its prime. All the storage and log areas have been presevered including the old shipping logs of who docked. There is even part of an old stair case that used to go straight to water and such. From what I recall, there are only a few people allowed to see this area each year, in order to keep it how it is. Including postage headers and company stamps and I think, Letters from the current Queen and such.

And then the ship left the dock.

So yes, that was my little late night adventure. Now back to curl up with my tissues.

still going

2011-09-16T23:30:00.000+01:00

ah I havnt managed to get on here much this week.
Things are ok, but it has been a long week.

The antiobiotics the docs put me on, did exactly as we thought and increased my anti rejection levels. Many phone calls,more bloods and a few appointments later, I had to stop my meds for a couple of days and then rebegin them. Things have settled now, but I am still coughing a lot. We dont want to have to keep guessing with meds, so more cultures have been sent for and the results should hopefully show more.

My mood has not been in the best place this week and I do fear that things are begining to slip, but we shall see on that one.

Exhaustion is my main problem. And a couple of nights, I have woke up really gasping for breathe. My issues, as usual is that I dont want to worry anyone.I dont want to make a fuss. What if it turns out to be nothing and just me over reacting. I wish there was some test I could do at home that would instantly tell me either your fine, or you need treatment.

Going to try moving more tomorrow, so we shall see on that one.

And on that nore, im going to go sleep as I am exhausted. Though I did get some pretty pics yesterday that I still need to transfer off my camera.

Memories

2011-09-11T01:47:00.000+01:00

With my chest playing up at the minute, past memories have been haunting me this week, perhaps making me more nervous.

It was 2 years ago and I had been in and out of hospital with my breathing and had a string of respiratory arrests behind me. My surgeon was going out of town for a week and so the week before he took me in for yet another clear out. I had a stent in at the time as my airway would not hold open. He had been trying to talk me around to have a trachestomy in, but I was still filled with scary memories of ICU years previous and had refused.
Things were getting tougher, to the point that on college days, I would get up at 6, so I had time to get dressed and run treatmeants and leave by 8:30. Every 2 hours when lessons changed, I would spend 30 mins running nebs and an hour at lunch time. But I was getting through the day and that was all I cared about.

But my airway was still complaining. It got to the point, where I couldnt get around the house without near passing out.

I had emailed my surgeon and asked to talk to him as soon as he got back from his trip as as much as I didnt want them to, I knew things would need to change.

Wednesday, halfway through his week off and I was really struggling and so the ward admitted. The SHO was an arrogant twat who basically gave the impression that I was wasting peoples time, because I kept coming in. All they could do was run nebs and give me steroids, which I could be doing at home.

I had prebooked ticket to see the premier of New Moon with a friend for the midnight showing and I was desperate to go see it. So when they decided to discharge me on the Thursday, I just went with it.

I was exhausted and even borrowed a wheelchair as I couldnt make the 10 steps from car to cinema. The film was wonderful, but throughout, I was concentrating hard on my breathing, and not just at the topless scenes.

My friend took me home and saw me to bed where I slept a broken sleep. Mum was in work the next day till 12 and I was home alone. I awoke struggling, but managed to get my neb on and after about 20 minutes was settled a little. I was so exhausted that I fell back asleep, to do the same thing only 20 minutes later.

At one point, I knew mum was due home soon, so I bundled up my neb, and curled up on the floor in the living room, remembering to unlatch the front door on the way past. My reasoning? I could hardly stay awake and if my throat went again I didnt want an ambulance crew having to deal with stairs, as I am not exactly light.

Mum came home and imediatly told me off for not phoning her, but I didnt want anyone to worry. At that point, I was fairly ok and although still struggling I was managing. I explained that I didnt want to have to face that annoying SHO again and so I didnt want to go to hospital. I soon fell asleep again and mum must have dozed off next to me. Next thing I know she is shaking me awake and running the neb for me, apparently, I sounded like I was dying.

The ward said to come straight over and within minutes, I was on oxygen and sat in the bed closest to the nursing station. The on call doc had been called, but it was a busy day and it took a while for him to come. He increased all my meds and asked for an ICU doctor to review as he was unsure about leaving me on the ward. At this point, the SHO was on hand over and said it wont be nescary etc but the ICU doc had already been called.

He quizzed me on my history and took some blood gasses. At this point I was settled so I had sent mum and dad home as they were exhausted and there was nothing they could do.

Once the gases were done, the ICU doc decided he wasnt happy for me to stay on the ward as he would prefare more intensive monitoring and so I was shipped off to ICU. I had never been moved to ICU while awake, it was most odd and all I could think to do was apologize for all the fuss I was causing, and of course to run the loo before they shipped me down there. Of course, even moving down there was a job, as I had to be acompanied by a team of 2 docs and a load of equipment. It was very overwhelming.

That night may have started late, but it was a long one. My nurse was wonderful. She dimmed all the lights down for me and sat outside the door so she could still see the screens but so I had some personal space. But the night continue as the day had, in that every time I went to sleep, I would suddenly wake up unable to breathe.

By morning handover, we had gotten into a pattern of me being able to get 10 mins sleep and then topping up the nebs and so, I had avoided any scary situations. The new nurse coming on, was a little more relaxed and started talking to me about breakfast.

And then, while in mid conversation, I coughed. And thats when things got scary.

Suddenly, I couldnt breathe. I looked at the nurse, with fear in my eyes and tried to tell her, but the words would not come out.I tried coughing to clear it, but I could not get the air in to cough. I remember watching the nurses expresion suddenly change as she began shouting for help, about 6 seconds before the machine began to alarm.

The sudden movement on an otherwise peaceful sleepy ward was intense. within a minute, there were doctors everywhere and the crash trolley was being bought in. The ends where pulled off the bed and a doctor began to check my cannula was still working. Typically it wasnt, and the doctor swore loudly, before tipping a bottle of iodiene up my arm and bed to attempt to put another one in.

Every breath was fight. The anesthist was leaning over me from behind, ready to take my breathing over. The injections to paralse me where ready in another doctors hand on one side of me and another doctor was talking me through breathing. Everybody else was starting at the moniter was my oxygen sats dropped and dropped.

Slowly, the steroids they had pushed through began to work and my oxygen levels began to stablise and then slowly began to rise.

After about 40 minutes, the staff began to drizzle out and the crash trolley was wheeled back out into the hall.

Mum and dad had apprently been trying to phone, but had not got any answer (oops) so had just popped over to see how I was. They were allowed in to see me and I told them what had happened, well a watered down version.

That was one of the scariest moments of my life. The drugs and fighting and I knew that last time, it had been a close call, as they can not get a normal size tube down my throat, I have the have the same size tube that a toddler would have.

Mum had been with me about an hour and was asking if I wanted anything from the shops. It was Saturday and she usually went shopping. But for the second time that day, disastour struck. Exactly the same as in the morning, my throat suddenly shut down. This time the docs knew what to do,my parents however were not prepared and I am glad that I was not in the waiting room when they had to leave the ICU.

Things once again got under control, but by this point we knew something had to change and change fast. My surgeon, who was far away, was phoned several times that Saturday morning, whilst they tried to asses the situation. Another surgeon was called in as an emergency and although he did not know my case, he agreed to come in and see if he could help. The emergency theater team where put together and I said good bye to my parents, not really knowing what would happen next.

This time, I needed a bigger team and the transfer from ICU to theater, was done with at least 6 staff members and a lot of equipment.

The doc removed as much as he could out of my airway, knowing that he could not take to much as my whole airway would collapse.

I woke 2 hours later in the ICU aching more than I had ached in a long time. I needed high flow oxygen to keep my levels up, my blood gasses where everywhere, but that could be dealt with. Every time I breathed, you could hear a deep rattling noise. Tissue had been removed and I could breathe, but every time I did, it aggravated the area and so the area swelled.

I hadnt slept in two day and every muscle in my body felt like it were on fire. Every breathe felt like it would be my last. I hate bedpans and commodes, but I could not get out of bed and so the discussion began to insert a catherter. I hate those as well, but at that point, I felt so beaten that I was about to agree.

Mum and dad sat by my side, holding my hand and willing me to try and sleep. But I couldnt, I kept thinking, if I sleep, I will stop breathing again,my body will give up. The ICU docs came to see how I was doing and I literally begged them, with tears running down my face, to sedate me and put me back on the vent. I was to tired to keep breathing. They want me to keep going, but promised to review me every hour. They were afraid to knock me out and not know how my throat was. That the tube would further irritate my throat and cause more swelling that they could not get passed. If this happened, even a trachestomy would be out of the question due to its placement.

That was one of the longest evening I have ever experienced. I watched the second hand on the clock as sweat poured down my forehead from the effort. The tears eventually dried up and I resigned myself to what would be.

Slowly the seconds added to minutes and then to hours and I began to get some rest in short 10 minute bursts.

Again, the staff were wonderful. Encouraging me every step. Trying everything they could. I needed a more permanent IV line putting in, but even the best doctors could not get a PICC line in my arm as the viens were ruined.

That weekend lead to a lot of tears, from myself, my family and the staff. The theater nurses made jokes about what I was going to wear to the staff Christmas party as I spent as much time in there as the staff did. I had a few more close calls and several more trips to theater while my surgeon tried desperately to get hold of my ENT surgeon, who had just vanished.

In the end, I spent almost 3 weeks in the ICU, developed a very bad infection in my blood that was only picked up by chance before it did damage. I got my first trachestomy and learnt how to care for it myself. Developed an infected line that came pretty close to killing me once again and became a good teaching tool for the ward staff.

I was admitted in November and I was discharged in February.

That first weekend though, is one that haunts me most. The sound of all the docs, the pain of my ribs, the fear in that nurses eyes. I can see it all as clear as yesterday. At the start I needed my throat clearing every 4 weeks, that then dropped to every 2 weeks and in the end, I was needing it cleared every day. I think that is why I am so on edge now. I dont want to end up back in that position. I dont want to fight for every breathe, I just want to be able to breathe. But, I know I can cut myself some slack on the occasions that I do freak out, as they are founded on true ground.

crapty crap

2011-09-10T01:41:00.000+01:00

So I gave in and saw a doctor today.

The usual, lets send some cultures listen to chest. My chest sounds clear and my temp was not high. However after having to take a breathe mid sentence every time, she wanted to ar on the side of caution.

And as my sats are dropping to 90% (Should be above 95) and pulse rate of over 150 (should be 80) we agreed to start a second anti biotic. This is where the fun begins.

I am already on maximum dose of co amoxiclav, which is generally the best all rounder for my type of chest bugs. As I am more than half way through the course and they dont appear to be helping, I need the next set to be a slightly different spectrum. The best choice? Clathromycin. Now, I love these anti biotics because they smell and taste lovely. Ha yeh, ok so there not meant to taste good. But they have strong vanilla scent to them.

However, my body dilikes me taking them as they interact with my tacrolimus (prograf) Sure I dont need to mention the bad points to a med messing with your anti rejection levels. Last time I had them, I had all kinds of freaky headaches and generally bad things resulting in lots of blood tests and phone calls.

We are going to take an educated risk with them though as I really cant continue like this. And as a precaution Monday morning I will get my levels checked. By that point we should know if they are working and if they are not working, then the cultures should be back. The results can then be phoned through to the tansplant unit and my meds altered as needed.

Fun fun fun.
So after sleeping all day, I am now going back for some more. And with a bit of luck,tomorrow I should awake breathing again. yayness.

Of course, the next decision is, do I stay at home and help mum, or do I go stay at my sisters so not to pass the lurgies on. We shall see.

Onwards

2011-09-08T21:57:00.002+01:00

Its strange to think back, that a year ago, I got my trach out. I was literally jumping for joy in the hospital, crying because I could breathe and all the possibilities that I dreamt had opened up for me once again. I was grateful, I truly was. But my body decided that was not the way it wanted to go.

So a year later and over 14 more surgical procedures, I am where I am. In the same place I was almost 2 years ago. No better at breathing and needing constant treatment to stay well. The treatment no longer makes me feel better, but I have to keep up with it to prevent myself from getting worse.

This months treatment has hit me hard. I am sluggish, baearly staying awake. And truthfully, I am scared. I assume I have an infection, but coughing literally terrifies me. I have to pause and gasp for breath whilst my head goes fuzzy and I try not to pass out. I am finding it hard. People need me at the moment, I need to be there, not hiding in the corner dreading the next cough. My muscles hurt, my lungs hurt and I generally feel like crap.

I knew getting well was going to be a hard task, but what is becoming more obvious right now, is that things are going to get a heck of a lot worse before they get better. If there is going to be a treatment that will help, we Can I continue this decline for years? I feel useless. Mum is ill and I can hardly function, let alone help her. Im losing my place and my health fast. And today, it seems that tears want to spill.

I had to go the shop for milk. Drove there, parked in the disabled bay close to the door and went for milk. Half way there, I was hit with exhaustion. I wanted to sit on the floor and scream like a child. I cant continue on this decline, I just cant.

In a million differnt ways, I have made peace with myself. I still believe in fairy tales and happy endings, but I am ready to go if my time were up. But in a million and one other ways, Im not ready. There is so much I want to see and do and be part of, to know the out come.

I feel crap and I hate it,but I hate even more to know that things have to get worse before they can get better.

sleep and home

2011-09-06T22:50:00.000+01:00

Well, I am home.
Do I feel better? Ask me again tomorrow.
I have done nothing but sleep.
There was an issue with my meds to take home, so I was didnt leave the hospital till after 11, meaning I slept all morning. I usually walk to the station, but every muscle was screaming out in pain and effort, my chest and head hurt and so I got the bus. Got onto the train and slept. Got off the train, came home and slept. Just eaten and now I am off to sleep.

My breathing feelings difficult. Often it is omitting a high pitched squeal. I feel rough. Rougher than I have felt in a long time. I hope this settles soon.

Overall, my surgeon seems to be at a bit of a loss as what to do now. He dosnt want to put me through more big open procedures, but he knows that I am struggling. He keeps mentioning that there are going to be much better fixes close down the line that he would rather wait for. So the plan, is to stick with the intensive monthly ops for as long as possible. Obviously if things start getting dangerous then that might have to change but for now we continue to play the waiting game.

I just wish, I could get some of the symptoms under control. The headaches, the tiredness and the ability to wake up. I had a full on conversation with my anestitst before I went down yesterday, but I dont think I lifted my head off the pillow nor actully fully awoke for any of it. Lucky he knows me fairly well, though he kept asking if I were ok and then bumped me up the list by about 5 places. He is a nice guy. Always very apologetic when he cant find a vein or when he knows it is going to sting as the vein is so small.

Now for sleep as I have to be up tomorrow morning for Chemo day.
And then the cycle begins again.

London time

2011-09-04T01:15:00.001+01:00

Since I did that speakers training the other day, something has changed. I dont know, its hard to describe. I think, I am finally accepting the whole transplant thing. However, my curiosity is spiked. I want to know more. I think I need to look at what went on, how things ended up the way they did. Mum kept a dairy. Things like how the day had been, any developments and who visited and such. She showed me a few years ago, but I dont think I was ready then. I think I feel ready now. That is my plan for next week.

I had a gp appointment the other day and I went. But it was silly really as all my problems seemed to have cleared up. Today, one is back with vengeance. blah

Tomorrow, I begin the treck that comes with commuting to hospital. At a time when I realise how much I truly relay on my car. I dread the walk from station to hospital. I usually get a bus half way, but even the last half takes it out of me.

Today, I had a realization. I have not been out with mum moving about in a while, not properly. Today was shopping day and we had to do a good shop as I wont be around till Tuesday and then I will sleep for a few days. And it is her chemo week so she wont be up and about. Several times, mum had to stop and wait for me and visibly slow down. I couldnt speed up. The slightest attempt to felt like heavy exercise and my temperature soared. She always used to tell me to slow down walking and I hated it. But I have, without realizing it. Shows what happens when you dont keep up appearances I guess.

Its a mild annoyances, that I have worked hard not to lose muscle tone even on long admissions. Yet, I am losing it anyway, despite my best efforts. I know there is only so much you can do, but hopefully I will get some relief from this admission. I had to turn my humdifier down last night. It felt like it was chocking me, like it was flowing to fast.

Coughing fits at this stage are also getting more scary, where they leave me gasping in the middle and almost passing out at the end.

So, from here on in, the only way is up.

On that note, nope I aint showered, nor packed my stuff. I have however argued with mum over which back pack to take as she claims I need the one with wheels as I cant carry a bag. I have agreed to leave my beloved laptop at home. sob sob

life

2011-09-03T00:19:00.000+01:00

Perhaps, life isnt about meeting preset goals, but in fact more so about enjoying what you do have and sharing as much love as you can through it.

I have had my niece down the last few days. And where I always feel like I let her down as I sleep a lot and cant be up and about doing loads of fun things, instead, I feel at peace with her. We have had a great time.

We have been making craft stuff of an evening and she has made a couple of really pretty cards. But more than that, we work well together. She has some nice ideas and we bounce them around back an forth. She has also been helping me to keep the house running and such.

I have let her express herself in many ways, from hair and makup and playing about in heels. To drawing and cutting and cuddling up with a good film.

She used to have two bear factory bears, that she loved. But they got lost in the house move. I know she missed me when I am in hospital and she sturggles whenever I end up in ICU, as she cant visit due to being to young. So today, I bought her a new bear. She probably is at the upper age for getting bears, but I know she will treasure it.

We also won a huge bar of dairy milk on the arcade machine and generally had fun annoying each other.

I was taking her home tonight and she turned the music right down looked at me with those gorgeous blue eyes and said thank you for being my auntie. I have had the best time the last few days.

There was other stuff said, but my heart felt like it might explode.

Then I thought, yeh I am frustrated with things, but you know what, even if I have to stay like this for the rest of my life, I can deal with that. There are things I can do.I can still have fun and be useful, I just have to change my expectations.

Things are going good at the moment, mood wise.I do hope they stay like that.

Transplant

2011-08-27T23:41:00.000+01:00

Yesterday was fun.

I had a speakers training course run by the wonderful charity Live life then Give life.
It was basically teaching us how to talk to people about organ donation and how to space out any talks we have to fit into time frames.

It was interesting. Not only to learn the things that were taught, but also to hear other peoples stories and even to speak to others who have had transplants.

There was a lady sitting next to me though, who had had a l liver transplant (same hospital and consultant as me) 15 years ago, she is now on the list for a second one. I guess that is kind of scary, but not as much as I feared. I think, having spent so many years feeling negative towards my liver, that perhaps this is why the thought of an organ expiring does not bother me so much.

Applying the whole expiernce to my situation now, what strikes me the most, is that, even when people were struggling or really ill, they were able to carry on. They had hope and a plan. I think that is where I am struggling now. I dont know where I stand, I dont know what the future plan is. I want to do some course, I want to travel, I want to work. But I dont know when, if ever will be a good time for this. Each month things are reviewed. Each month, I make the 3 day round trip to London. The journey adds on and makes it even harder to recover. I know its nesscary and I am not complaining, but each month, two weeks are taken up by hospital really. I need some long term plan putting in place.

This week has been hard,today has been draining.
Thursday night, my sisters car broke down and so my dad and I went to help her. That was fine, but we didnt get home till 11. It was to late for me to shower and gone midnight by the time I ran my treatments and got into bed. Again, no big problem. But the next morning, I had to shower, dry my hair, run treatments and be parked and in the hospital in town for 12:30. By the time I got there I was drained, by the time I got home, I was zombified and did not do much but stare into space.

This morning, I promised to take mum shopping, but every step felt like I was wadding through water. Every part of my body longed for sleep. I did end up napping for 3 hours in the afternoon, but waking was difficult once again.

I know I need to push myself and I dont mind doing that, but my body keeps complaining. The aches and pains are getting annoying, the difficulty in waking gets scary. To be trapped in limbo, awake, but unable to move. I find that I am pursed lip breathing more often. I sat on the floor with my niece earlier. When I stood, I got off the floor no probs, but it then took me another 5 minutes to catch my breath after it.

Things at home are difficult, this entry is long and boring enough so I wont say much, but it involves lots of crying from my mum, who, before this year, I hardly ever saw cry. It also involves lots of frustration and raised voices as well random objects being thrown across the room.

To sum it up, right now, there is a heck of a lot of frustration going on.
But, on the plus, my face has stopped hurting enough to wear my humidifier again tonight and I finish my antibiotics tomorrow.

clinic

2011-08-25T02:13:00.000+01:00

Thoracic clinic, everything seems to be going ok and there is little input we can give. Lets lessen your clinic times and you know how to get in touch if you get stuck.

Liver Clinic, Liver, as usual is all doing great. You look and sound rough, but we havnt seen you in so long so perhaps that is your normal.

All good news right.
But my body is still complaining.
Its still not keeping up with what I want it to.

Mum was discharged last night. But being active and driving with visiting and making sure she had what she needed, left me exhausted. I drove to clinic today, biting my lip to keep tears at bay. The muscles in my arms were shouting at me, it was agony to keep them by the steering wheel.

I tried mentioning my stomach issues in clinic, but things were dismissed as under another persons care. We spoke about where I was up to now. About how I had my whole life to go after a rough few years. Then we spoke about lung stuff. About my anti biotic usage and how I seem to be colonized to certain infection. There is one in partic, that the chances are I will never get rid. That is the reason why I need antibiotics so much. We also talked about my lung function. She looked sad.

I have known her since my first clinic after transplant. She has helped a lot in the past. Often, my notes would be with other specialists and so not available for clinic. She knew my history and so used to take my case. She has been good. Sorted things when my bloods started going odd a few years back. Spoke to the psych ward and made sure I got into clinic without sitting in the waiting room when I messed up psych wise. I dont know, she knows me well, I think she can tell when I am struggling.

But the conversation and the realizations of it, left me reeling. I walked back to car, thumped my fists several times on the steering wheel, let out a scream, then put my head on the steering wheel and sobbed for several minutes.

I can live if there is hope, but right now, hope is minimal.

And on the flip side?
Friday I have a transplant speakers session and if I am honest, I am nervous as hell about it. I have never actually met anyone who has had a transplant before, which in its self is odd. Nervous, but hopefully, it will be of benefit. Something good has to come of this.

Good while it lasted.

2011-08-22T01:09:00.000+01:00

I have a strange feeling of dejavu
Its dark outside, after midnight and I am quietly creeping in through the front door.
The house is quiet is in darkness and quiet.
I lock up and put the alarm on, before creeping up the stairs and into bed.
There is something missing that is in my memories though.

Alcohol.

When I used to come in, it was from a night out partying.
I used to go up the stairs on my hands and knees to prevent falling over or because my feet were sore from dancing.
Tonight, it was out of exhaustion.

I have just gotten back from A&E.
Mum has had a bad recation to the chemo again and thrown a temperature.
I took her in at 4 this afternoon and have just gotten home.
Although all her results look clear, as she is feeling rough and has a temp, they want to keep her in over night.
She has just had a cry on my shoulder. I wish so much Icould take this pain away from her.
To perhaps deal with it instead for her.

You know, I always thought that I has a low pain tolerance.
Sure there has been the self inflicted shit, but her, that differnce.
But medical stuff has just kinda been accepted.
I bearly notice them putting canulas in these days and flushing them when they tissue, is just something that goes with them.
But, watching my mum in tears with it, every time the drip is moved.
I wish so much I could take this away from her.

But then, I guess you know its going to be a bad day, when you wake up and can bearly move one side of your face.
This morning, I was virtually stuck to the pillow (I know so attractive)
Upon a prod and a poke and making it to the mirror, I discovered that I somewhat resembled a hamster.

So, off to the on call docs it was for me.

They think its a sinus/tooth infection.

So much for me being proud of making 5 weeks without antibiotics.

Hello Amoxicillin.

Lets just hope it clears up quick.

Its starting to bug me as it goes right up to my eye and when I blink, it rubs on my glasses.

Not to mention, that I cant put any weight on it.

Which is awkward for sleeping and means its painful to wear my humdifier.

So yeh, my plan of spending the day running treatments, has gone out the window.

Tomorrow will be a better day.

Thoracic surgeons in the morning.

Its a close by clinic and I do like my surgeon.

scary

2011-08-20T23:31:00.000+01:00

I feel so raw, exposed and on edge right now.
My heart is on sleeve so please be gentle.
I am still learning
Learning to deal with life and all it seems to throw at us.

Mum has changed chemo treatment and this week was her first one that will last the next 3 rounds.
It hit her yesterday and she had a rough night last night.
I feel guilty as I got up at my usual time this morning and was none the wiser that she had had a rough night.
Damn hearing.

Today, I went for the weekend shop. We always restock things of the weekend. Its normally a task mum and I do together. Mum wasnt up to it and so I did it. I went slow and I managed things. It was good. I felt useful, able to something that would make a difference.

I had just lifted the shopping into the boot of the car and was returning my trolly.
And then it happened.
That thing that happens sometimes.
All the crap that was building on my chest and throat moved, I coughed as normal.
But then started chocking.
From what I can tell, when this happens, its somthing hitting my vocal cords.
If anything touches them, they go into spasm.
I coughed and spluttered.
Making my way back to car as quick as my lungs would allow.
Where I coughed some more.

I sat in the car for almost 20 minutes.
Tears streaming down my eyes.
coughing and gasping and coughing some more.
I had thoughts running through my head about what would I do if I couldnt catch my breath.
I was in the car, no one around. I couldnt call out nor get my phone.
Glugging some drink down inbetween coughing fits eased things.
But I was bent over double, using my hands to support my ribs.

Eventually things relaxed.
I sat in the car for a few more minutes, waiting for my muscles to relax.
Waiting for the pain to ease.
By this time, my head was also pounding.
And then I drove home and unpacked the shopping.

Where I was told off for being out for so long.
I understand she is not well.
I know she will be short tempered
It just seems to be the same thing every time.
When she gets sick, she thinks I suddenly get better.
I really do wish this were true. Then I wouldnt feel like such a failure.

Dad came in shortly after and I finished off tea.
Another tutting at as the bread I bought wasnt fresh enough and I managed to crack the yolk on the egg.
I really hope they both manage some sleep tonight.
I am trying not to take things personally.
I know things are 100x harder for the pair of them right now.

I am loaded up to my humdifier and I think I may just spend the the day on this tomorrow.
I have not the time to be sick this week.
Thoracic clinic on Monday.
Liver clinic on Wednesday.
A LLTGL thingy on friday.

honesty

2011-08-19T14:06:00.000+01:00

Time for some honesty.
Honestly, I am struggling.
I am struggling more at the moment than I have done in a very long time.
And its starting to take its toll.

Im not in any emergency situation, things are no worse than they have been in the past, but the adjustment is hard.

I know that air quality can make a big difference, but I think that I somehow doubted just how much of a difference it can make.

While I was away, my breathing wasnt fabulous, but I was able to breathe. I was able to be active in the afternoon and then find the energy to walk down to the beach in the evening for an hour. I was able to shower and dry without stopping. I was able to climb the flight of steps without stopping. I was able to wake in the morning.

I have only been home a few days and I feel heavy and dragged down. Showering once again has to come in stages. Stairs are done as a little as possible and with a rest in the middle. And sleep, was not this continous thing that I could not get away from.

I got home monday. By Wednesday, I had my cough back. I curled up in the chair and slept right through mums chemo sessions, I never do that. Thursday, I slept till 10, then after a struggle to get up, went for bloods. And slept in the waiting room. Came home, had dinner and slept till tea. Today, I only woke 2 hours ago and I already feel ready for bed once again. My lungs feel heavy and painful. I feel weighted down by them. My stridor has hit the pitch I can hear and I am once again coughing a ton of crap.

Its been almost 6 weeks since I have had any antibiotics, which is almost a record for me over the last 2 or so years. Perhaps its time for more.

I am exhausted, mentally and physically. I know it was like this before, but this time, my body is not used to it. It hasnt been a slow decline, its sudden. My mind is fighting it. My body succumbing to it. I hate it. I want to be active. I want to run, to dance and even to talk.

I think that is one of things hurting most again. Talking has become to hard again. I can barley project my voice. The strain of getting sound out. Most things that need to be said, are now once again said in whisper, but more so I find myself just not talking.

Its hard. And all I can do at this point is wait. It will be a slow decline for the next 2 weeks. And then, I need to plead. Im sure you all know my hatred of trachs, but right now, I am considering asking to have mine put back in.

Its hard.

Today

2011-08-17T22:50:00.000+01:00

Sometimes I bitch and moan in here. I want my life back. I dont want my family having to slow down for me. I want to be able to look after my mum when she is ill and not have her worrying about me. I want to get out and be active,to work and to make friends.

But just because I want more does not mean I dont cherish what I have, dont value every second of it.

Im grateful for this little island I have created. That I have these outlets, that I can do from bed when not well or tired that still let me be productive. I dont want to be stuck here, but I am grateful to be here at all. It has taken so much work and sacrifice from others to get me here and keep me here. From Surgeons, nurses, familiy and donors. People I dont know, nor ever will know. There are just so many people.

I tell the truth here. That I am not always brave, that the future scares the heck out of me. That I am in awe of so many people.

We are not alone in our battles if we let others in.

So I let you all in, so that it is a little less lonely in here.

But there are different types of loneliness. Im not lonley in a social sense, I have lots of love and care around me, that again always strikes a cord with me. Simple things that I dont mention, like the nurse today, who knowing my mum was in for a long session (5 hours) gave her the corner chair, as the visitor chair with it, instead of being a hard back chair was an arm chair, for me.

But there is still a sense of loneliness. That perhaps some people, just see the face you put on the outside, and not the struggles inside. But there are other feelings out there. Bitterness, resentment and judgmental attitude. Its one of those things I guess, that I try to avoid, judging people. I dont think you anybody is in a postion to judge, unless, they themselves are perfect. And we know that nobody is perfect. Everybody has their own attitude and coping mechanisms. Its what makes people interesting.

Yeh, I have no idea where this is going. I guess I am just in a odd mood. Catching up on things after being away. Playing with my photos and getting back to crafting.

oh oh oh. And did I mention my laptop decided a couple of weeks ago that it wanted to learn to fly? Well it literally jumped off my bed. I swear, I was no where near it and next thing, bang it was on the floor. My poor baby. I did cuddle it and such, but alas, the corner must have hit the floor and the headphone socket jumped out of place.

I did some technical super duper stuff, using all my knowledge of laptops (I have taken several apart and repaired them) and my specalist tools (A nail file, some wire and a thermometer) to attempt to re attach it inside, but I discovered it was going to be a bigger job than I was able to handle. This was saddening news, as I cant bear to be apart from my laptop, but I use it for films of a night. Due to crappy hearing, I have to have the volume up, which is too loud of a night as it keeps my dad awake who works very early shifts(4am.)

But, I have just gotten a set of bluetooth headphones. And oh boy. Not only can I now watch my films again, I can also dance about the house with my headphones. Oh and even more, they go super loud, meaning I have the volume on my comp turned down. The good thing about this I hear you cry? Not only can I watch my films, I can probably attach them to my phone and actully hear phone conversations. yippee. So camspam, if you are reading this, get your phone charger out, we may be able to have a decent phone convo (aka good ole gossip)

2011-08-16T23:23:00.000+01:00

Well, I am officially home.
It is wonderful to be home, but also very very difficult. More than I care to realize.

Being back home, all the old issues that were getting me down still remain. Home to the barrage of hospital letters and solicitor letters, not to mention appointments. Tomorrow is mums chemo day, which is going to be 5 hours in the hospital. You dont realise when you are doing it all the time home much the routine wears you down. Not to mention the thick air and many stairs.

I have also come home to drama, so to speak. The proverbial brown stuff has hit the fan here and causing family issues.

I love the phrase that life is not measured by the number of breaths you take but the number of moments that take your breathe away. And over the last couple of weeks there have been so so many of those moments.

It has just been wonderful. I shared a bed with my niece and although she was a pain wriggling around and frequently elbowing me in the head, we also had some lovely cuddles. Love truly makes a huge difference and she is just so loving. She is 12 and carries the weight of the world with her. But the last week, she has been wonderful. Smiling, laughing, confident. Totally different person. Watching her transform took my breathe away on so many occasions. When I left last night, she put her arms around me, touched her forehead to mine, looked me in the eye and whispered, please dont leave me. I was chocked. And this morning, I got a message off my sister to say the my niece said she dosnt like waking up without me.

I have to get better. I cant run the risk of being sick and not being there for her. I cant put that stress on my family. My head is a mess and planning things I would rather it didnt. But I am happy. I am smiling so much. I have so much that I want to live for. Such a thirst for life.

I need to set her a good example. I need to do something with my life. I need to speak to my surgeon and find out where we are at.

Breathing, is probably the best it has been for about 2 years. But, I still have a very loud stridor. My resting pulse is still way high and the exhaustion is just silly. A flight of stairs drop my sats down to low 90's and walking for longer than 10 minutes gives me excruciating headaches. I dont know if these are related to my bodies sudden desire to empty itself, which is something that seems to be happening frequently. I dont know. I have hope for the future. I am happy, so happy. And the love I feel grows everyday. I dont want to go back to the dark places I have been in the past. But I do want to do something.

Right now its not possible. Anesthetic once a month knocks me out. It takes days for me to recover, I'm told its due to my liver, though that seems to still be doing alright.

I crave for some drama free time. To have my whole familiy live without any disasters. To have them all be happy.

A happy ending. <3

wow

2011-08-15T15:15:00.000+01:00

It was a whole other world being away.

The place was so beutiful. The views spectacular, sunsets magical and the air wonderful.

It is amazing how much the air helped. Clean salty air, it was like running permeant nebs.

What was the nicest bit though, was seeing my niece smile. She hasnt smiled properly for months and it makes me sad. But she has come alive while away, it truly is wonderful. Just a shame once home, she will get sad again.

We have just driven home in a hire car, which was tiring and hard work to pack as it was smaller than the car we went away in. The car got written off, but more of that later perhaps.

For now, its time to unpack and enjoy some more time with my niece.

2011-08-05T00:09:00.000+01:00

Today I feel flat on my butt and just thought I would share it with you.

There was a candle lit on the fireplace at home. But it wasnt on the top, it was on the bottom, by where the fire is and such. Well anyway, I leaned down, pretty much touching my toes and blew, with the intention of getting it to actually go out.

The flame didnt even bloody flicker, and I heard my dad laugh and I laughed at the same time.

But lame me, dosnt have a good sense of that thing called balance and so laughing, set me off balance and I feel flat on my butt.

Of course I couldnt move even more for laughing and mum walks in wondering what the hell is going on with me lying on the floor giggling.

In other news, I have coloured my hair and I am much happier with it.
The lighting here dosnt do the colour justice though.

Conflicting emotions

2011-08-03T23:29:00.000+01:00

This week has been full of conflicting emotions.

Mum has not been well. She is getting out of breathe easy and is generally exhausted. I feel sorry for her, I really do. And yet that voice is still in the back of my mind wanting to say ha, see you cant just get on with it like you have always complained at me for not doing, its not that easy. But then, on the other hand, if I could take this for her, I would in an instant. I would rather feel crap than have her feel crap. I hope she is going to be ok whilst I am not there.

There is other family crap going on and on one point, im wanting to say sod, screw the lot of you, why should I care what you think. And on the other hand, Im wanting to say, look here are the facts, now wake up and see what is in front of you.

The other thing that has me thinking a lot the last day or so, is that somebody on the forum I use/kinda worked for, passed away. Any death is sad, but this one has more so left me with so many feelings that are just not defined.

Most people on the site, dont care about life. They vocalize what is going and they are fairly open within the community. Even those deemed the most at risk, you generally know when they are going through a hard time. But this person, she was different. She had a thirst for life, she wanted to live and she wanted to get well. You would hardly know from her writing what was going on. Its sad really. In a way it makes me think of those who throw life away and dont appreciate things. But in another way it also makes me think that we never truly know what is going happen. Anyday could be your last regardless of any situation. Most of the time it is not something we have control and I dont think we ever should have control of it.

Right now, I know my mind is still running in protective mode. Its functioning but it wont take much to knock. However, I dont ever want to get back into that place I once was. It was dark and lonely there but more so I was able to torture myself more than anyone ever should.

But if you never know what is around the corner, you should seize everyday. Make the most of every opportunity, dance, laugh, sing and cry. Make lots of mistakes but learn from them. Make so many memories that your mind is full to brim. Make sure, that should time ever run out, those that matter are not commiserating your passing, but celebrating your life and all you did.

That is how I am going forth, no regrets and making the most of what I am given.

I doubt I will be updating here for about a fortnight, as I will be in south wales, hopefully with sunny weather. You never know, the salt air may do wonders for me.

icky tests

2011-08-03T23:08:00.001+01:00

Just now, I have literally had a 15 minute coughing fit. It was exhausting. Not done that in about 18 months. And yet, this past month has been the pretty ok. I am due laser again on Monday, but I have been offered a holiday with my sis, so after speaking to my surgeon he said go for it. I rang to rearrange the appointment for in 2 weeks time and they said they would call me back but instead i now have an admission for a months time. Oh well.

Things have gone down hill a bit the last week, but I intend to have a good time away and so things better behave. Had that test thing this morning and boy do I hope never to need one of those again. The tube kept getting stuck at the hypopharxyn and so it took several attempts to actually get it in place. But once it was finally over the Respiratory person said it looked ok and such. So just waiting to go back see the doc on that one now.

And I got my hair cut. Ignore the state of me as lack of sleep is not have a nice effect on those rings under my eyes.

Though the colour has been annoying me since I coloured it, so hopefully I am going to redo it soonish.

Its morning

2011-08-02T11:10:00.000+01:00

An early morning blog, how unusual.
But dont worry its only going to be a short one.

Why am I up at this odd hour you may ask. Well, mum told me that I had an appointment to go to. She had an ECHO in one hospital and I had the horrible pressure gastro thingy in another hospital. the two appointments clashed so we would both have to leave the house the same time and then go opposite ways. Which was ok as mum was feeling upto driving this morning. I didnt check as I assumed mum was right (arnt they always?)

So, I get over to my appointment and the respiratory physician says, you do know this is for tomorrow dont you *headdesk*

I could have done without that as I could have gone with mum for hers, as there is chance they are going to find something not great. But more so, it is a hike and half to get to the appointment and of course I arrived panting and gasping.

The appointment its self is to put a probe down into my stomach to measure a lot of differnt stuff. Now, believe me when I say i am used to tubes being shoved up my nose and they dont bother me so much. However, the stomach ones do. Throat I can deal with, stomach, often trigger kinda flashback type symptoms which are not very pleasant. But oh well, have to be up early tomorrow morning and go for it.

And this heat? Dont get me wrong im glad its not raining, but even with the windows open, my room is so warm. The problem with this? The tubing on my nebulizer has gone softer than normal and it is rare now that it will stay stuck to the machine. I have trimmed it and trimmed and each time it stays stuck for maybe one session. I used to have a lovely long lead on it, meaning I could run it whilst I did things like going to the bathroom and moving around my room to get dressed. Used to save me ages when I had to be up for college. Its now just long enough to reach to the bottom of my bed. So perhaps tomorrow, I will sneak up to the ward and see if I can pinch some more tubing. Actully might put my machine in for services at the same time.

Pictures (or playin with my new camera)

2011-08-01T02:10:00.000+01:00

I have been promising pics for ages, so yeah, finally got around to uploading. There not great, and I like to ramble, but there you go.

This is my baby. Well not really, he is the biggest out my my two torts, but the little one was sunbathing when I had my camera out.

This is my nieces hyper Hamster Gizmo. Its such an adorable little critter. It literally never sits still and loves being around humans. Somehow, it managed to escape the other night while everyone was asleep. It was in my nieces mum's bedroom so her mum woke her up and told her to 'sort her hamster out' (hehe) She literally went in and went, oh gizmo, come here. The little thing walked across the room and climbed up onto her hand. The thing is mad yet so adorable.

I had a friend staying last weekend and we decided as it was nice to go the beach in Llandudno (Wales)

She was very proud of her bread. But..

..Oh noes.

It was very touristy, but the colours were super fun to play with on my camera.

I love the colour of the sky.

My niece came to stay once my friend had gone home and I snapped this picture, which I quite like.

And Dad took us out, so I could play again hehe.

I love how quickly the camera responds when you press the shutter button.

On a regular digital camera there is always a few second delay and so I often missed the shots I wanted.

Though, I do miss the 12x optical zoom of my old camera. I have a 18-55mm lens on this one. So I might have to invest in a zoom lens in the not to distant future.

I love that I can manual focus though, no more fighting with the auto focus and having to move the camera about to get what I want.

The water here is so clear that I loved playing about with the reflections,with no distortion.

The colours are so vivid and clear.

And the finest details picked up.

Though, I obviously cant take credit for the wonderful scenery.

But the auto focus comes in handy when framing shots.

And I do try to shoot from unusual angles. They say that something like 80% of all photos are taken from the near enough the same height, though it did alter when digital cameras came in, as people no longer had to lift them to their eye, and isntead hold them just below shoulder level. So often you will find me sitting on the floor with my camera.

Though I should have set my tripod up for this pic, as the sky very slightly over exposed as I couldnt lower the shutter speed enough without camera shake.

Yeah, maybe a little morbid, but there is actully a forest close to my house called Delamere forest. (A lot of the scenes for Star Wars VI where filmed there)

Oh how I love reflections. And this time I did manage to use my tripod, as the first one, the sky and the reflected sky both white'd out. I do like this one.I did bring the sky into full colour, but the foreground ended up a little dark. ha,Ishould go back to playing with HDR images. I do love the way HDR stuff comes out, but its a lot of post production and I have more fun taking the pics.

Hopeless

2011-07-29T02:46:00.000+01:00

Alas, I have become absolutely hopeless at updating my blog.
I am still alive and having a good day really.
I did promise to upload some photos, but it is bed time, so this is going to be a quick one.

I am working on a couple of projects at the moment, which is kinda fun and I get carried away, but they need to stay secret for now.

I sorted all my room out the other week and now, crafting is so much easier. And due to this, my mind is a whirl with projects, espcially christmas ones (there is only a 150'ish day left you know!)

The thing I like at the moment is because it is chemo week, mum has to rest more and stay in. I like this because it means I am not getting dragged around and worn out. Instead, I get to spend the day sitting in the garden with my felt tips or a sewing needle.

Chemo last week got cancelled as mum was to ill to make, so she is a week behind, but had it this week. Though, admittedly, it was a pretty close call. Two days before, I came down with gastro issues and spent the day between sleeping or emptying my stomach (it was already empty, but i think my stomach wanted to get out to, heck why not if everyone else gets to go out) This makes it the third time in less than a month I have had this, which is a little concerning, but the worry was passing it on. So extra precautions were taken and such. Now I just need to make sure it doesnt come back, as I am responsible for the cooking and such at present.

Other than that, things are going smoothly. I have even been awake fairly early the last couple of mornings. Mainly because I have awoke coughing (and due to where crap gets stuck, the easiest way for me to clear it is to lean over the edge of my bed so I am upside down and allow gravity to aid my coughing) but coughing early in the morning, inevitably leads to needing a wee.

But enough about my bodily functions.
I have stomach/lung scope type thing next week, which is a bit icky. But it clashes with my mums appointments, so not sure how that is going to go yet. She is booked in for an ECHO which would be fine as mine is in the same department, except hers is in a differnt hospital than mine. Hopefully dad is going to be able to drive her to hers.

I am also possibly going on holiday in two weeks. To Wales with my sister that should be fun.

And I think that is about it.
Such an interesting update. Oh I know what is exciting, I ordered a remote shutter for my camera and it came today. So much fun to play with. Just wish we had higher cellings as I would love to do some bouncing on the bed type pics.

Oh,I do have one photo I will share tonight, just because I have it handy. My Daddy being silly.

Bless. He has had his haircut today. Though it does not remove all the grays anymore. I did offer to colour it with my Red over the weekend, but he declined my offer.

me and a bee

2011-07-24T00:49:00.001+01:00

Last week, there was an 'anonymous' comment on left on my blog, that lead me to thinking. The comment seemed more like a personal dig than anything else, but perhaps that was my interpretation.

Anyway, it got me to thinking. Does my life revolve around being ill? And is it the only thing that I do or talk about? Which also lead me to the question of, what kind of person do I want to be.

My answers? Right now, I am exactly who I want to be. Sure, I have some crap cards, but my goal I set myself last year, was that I wanted to make the most of them and not end up bitter, angry and consumed by hate. Well, I think that I have done pretty well at that if I do say so myself.

Right now, I love life. Sure I would love it more if certain things were to change, but I actually have better health right now than I have in the last 2 years and you can tell. My room is organized and tidy and something to be proud of. I have so much interest and passion into different things and I have aims and goals.

I have so much going on right now, that I dont blog nearly as much as I used to. That being said, this blog was always set to be a record of health things and so I guess it will be more focused on that. There are things still irritating me. All the graduation photos appearing on facebook right now is one of them, not to mention the topical conversation in regards to abuse and violence that seem to be going on at present. But you know what, I am dealing with them, better than I have done in years. I am taking steps forward. The flashbacks are still there as are the triggers, but I can control them and most people know nothing of them or my triggers. Mum was deemed to ill for chemo this week, and her moods have been erratic, but once again, im not on self destruct and it feels so good to be coping.

I dont want to be ill, I want to be well. That is why I want a respiratory diagnosis. I want treatment, I dont want to decline. I dont want to be under constant infection whilst my tissue is destroyed. If it is bronchiectasis then knowing sooner rather than later, can mean treatment,prevention rather than cure. I would not go down the route of organ transplant again and my family know that. So right now, they support my choice to do what I can to keep my health. I know that I am doing all I can. Sure I am not the more religious person when it comes to medication routines, but I also know what my body needs and if sleep will benefit it more than forcing myself to stay up an halfheartedly run treatments, then so be it.

Life is for living and I will do what I can to live. I know that I am doing the best I can for my body and mind. So thank you Anonymous commenter, as I realised my dream of being the person I want to be, has been accomplished.

I shall leave you with a photo I took today :) (Though I have had a great few days with a friend, but those pics will have to wait as the internet here is on a go slow.)

A little more persistence, a little more effort, and what seemed hopeless failure may turn to glorious success

2011-07-19T02:28:00.001+01:00

I have energy. For the first time in weeks, I feel truly awake. Energy slowly seeping back into me. My body seems to be clearing up and working as it is meant to. And me, well I am loving it beyond words right now.

I know this is going to sound so cliche, but watching Harry Potter, somewhat marked the end of an era. Its amazing how different I am now to the person that I was when I read the first book, sitting in my Nephews bedroom, awaiting my turn on the playstation. He is 19 now and I do wonder what he thought of the film.

I have been meaning to post a proper entry here for a while, but never got around to it, and that in itself is a counter argument about what I wished to post. This week, my year at uni got their degree levels and such. They all did so well and I was proud for them, but at the same time I missed them. Being the only girl in a class of lads, was an interesting experience and one I wish I could have continued. I am content with myself, that I did all I could to stay in the class, ignoring several doctors when they scolded me for it. I long to go back and I will at some point.

Its strange to look back and wonder where my time was to go to uni. These days, my life is filled with so many things, that I hardly have the time to be bored.

I had a lengthy discussion with a friend the other day about this. I used to dedicate a lot of time to a forum I worked on, but these days I seldom go there. At one point it was practically my life.

“Passion, it lies in all of us, sleeping... waiting... and though unwanted... unbidden... it will stir... open its jaws and howl. It speaks to us... guides us... passion rules us all, and we obey. What other choice do we have? Passion is the source of our finest moments. The joy of love... the clarity of hatred... and the ecstasy of grief. It hurts sometimes more than we can bear. If we could live without passion maybe we'd know some kind of peace... but we would be hollow... Empty rooms shuttered and dank. Without passion we'd be truly dead.”

Slowly my passions in differnt areas have grown and exploring these areas gives me the greatest pleasure. The one thing I am thinkfull for, is to be able to try so many new things and to have people around me who have supported me through these adventures.

My biggest passions are spread between reading, photography and craft stuff. I love all of them and without them, I would be bored. I love my crafting and the bunch of people I have met through that. But it is more than just that. It is the contentment that comes with making pretty things. To being a big kid and sitting colouring images and getting a buzz when they look good. (I have just been playing with blue on blue colouring)

Where has all this speal come from today. Well, those who know me, know that I have been wanting to upgrade my camera for about the last 3 years. I love my bridge camera, but recently, I have outgrown it a little. I wanted a DSLR. I wanted a camera that would do what I told it to do right away in all conditions. I wanted the feel of the lense mirror flipping, that takes me back to when I used to stare at my dads camera when I was a lot younger.

So after saving for literally years, shifting some finances about and selling my car, today, I had the money and so I bought my first DSLR. And boy am I happy with it. It answers to the slightest touch. So much I can alter to get it to capture just right. And, the lad in the shop was a semi professional and was giving me loads of tips. oh I had so much fun. I have had a little play with it this evening, but I cant wait to get out there and try some real shots.

My life, in contrast to a few years ago, just seems so filled with so many loves and passions. If only there were more hours in the day. Least, I have had the opportunity to learn so much and study the things I like and for that I am most grateful.

This week is mums chemo week, marking week 3. The last round has been a difficult one and I think mum is very apprehensive about the next round. I dont really blame her, I guess this round has been a difficult one for her as she is still adapting to it all.

I also have a friend visiting this week, which is exciting stuff. Lets hope this nice energy boost keeps up.

I have also signed up for a presentation course thing for being a public speaker, so that is running in August. But I shall write some more on that another day.

Just keep swimming

2011-07-15T14:31:00.000+01:00

Today is a bad day. It is one of those where I feel like I fight for every breathe. The heat isnt helping.

Yesterday, I had promised to spend time with mum and take her out, which meant getting up in the morning. We had a good day. Went to a shop with a garden centre type thing and craft centre, so we were able to split up and both get something out of it. We then had a picnic in the car overlooking a lake.

We were watching a swan with 9 babies. That must be hard work.

I got a lovley bed spread, that I am dying to put in my room, but I wont until I get to tidy it properly.

Last night, after tea, I sat on my bed with my laptop as I normally do. Now normally, I browse around and catch up with people till about 1 am ish. But not last night. At 7, I found myself falling asleep. I meant to sort out my tablets and run my neb an such, but literally had no energy. I must have fallen asleep as my dad came up for a shower at about 9ish and shouted to ask if i needed the bathroom. I literally crawled to the bathroom, tipped my meds down my throat, turned on my humidifier and collapsed back to sleep, not fully waking till way after 11:30 this morning.

I was literally dead to the world.
Unfortunly, I still feel exhausted and my lungs are shouting at me for sitting still too long, Every breathe is makes my lungs burn and I know I am avoiding using the bottom half. My shoulders ache and ribs sting.

I am doing all I can Lots of nebs, antibiotics, lots of fluids. I have spent the last hour on my bed, nebs on full, humdifier on, fan on. It is exhausting. I want to stay in this position for the rest of the week. Not have to move. But alas, there are things to be done. And I have to be social tonight. So instead, I shall take the painkillers and hope that they wont sedate me to much. And hope that the antibiotics kick in soon.

And that, they can hurry up and change my diagnosis from suspected, to confirmed. Not that I want to have any type of lung issues confirmed, but perhaps, once they are, we can begin a treatment plan. Get rid of infection every other week and stupid breathing crap. I am booked in for a high contrast CT next week, so perhaps that may help things.

Maybe I should just quit complaining at this point. I mean, I moaned last week that I had a mans deep voice, but this week it is little more than a squeak and very hard work to get out.

And apart from that, I just need the ability to explain things to mum. That yes, there are things that need doing, but just like when she is on her bad week and is unable to do them, I to am at that point and unable to do half of what I need to. Its so frustrating. gah.

I be all famous.

2011-07-13T22:16:00.000+01:00

So I be all famous and stuff like.

Ha ok maybe not, but it is a step in the right direction. This is the most active thing I have done towards encouraging organ donation and it feels like a big step. It is a big step. It is coming to terms with things and focusing on being positive. Its also about facing my fear of being recognizable.

So, long story short, as a follow up to transplant week, I was featured in the Liverpool Echo. A whole page spread with huge (scary) photo of me.

With the whole hospital dramas and such I have only just gotten hold of a real copy, but yay. Below is the scanned copy.

If you wish to avoid the scary photo, then it can also be viewed here (Liverpool stab victim who survived liver transplant urges people ...)

So yay and all that hehe.
Now I know what my surgeons are up to, they just want to get lots of signed consent forms as they maybe worth something one day *giggles*

hospitals and more hospitals

2011-07-13T14:52:00.000+01:00

What an exhausting few days. So much has happened in a short time and right now, I feel totally spaced out.

So Sunday, I still felt rough, but managed to get going. Took all my meds, managed to eat and got the train to London. I dont usually sleep on the train, but within 10 minutes of sitting down, I was dead to the world, and didnt wake at any of the stops, until people started getting off Euston.

The sleep must have done me good as by the time I got to the hospital I felt a million times better. I must not have sounded it though as the nurse attacked me with nebulisers within 2 minutes of getting through the door. Perhaps it was the heart rate of 135 that sent him a little anxious. Either way, I slept all night, changed wards once the staff changed over,got ready for theatre and then slept all morning till about 1pm.

Went down to theatre about 2pm. Nothing special really, had a natter with my surgeon as we discussed the uselessness of the hospital and such, exchanged the usually banter with the irish male nurse dude who is to easy to wind up and then off to sleep.

Upon waking, things didnt feel right. I knew it wasnt right, everything was aching and I was using my accessory muscles to breathe. I tried telling them what was wrong, but I was to spaced out to coordinate talking. Time plays tricks on you in there, but I know I saw a series of people. From the recovery room doc, to my anesthetist, to my surgeon to another anesthetist, xray and a few more besides. We think that my upper airway had swelled more than normal,which was making breathing hard. After an extra hour or so in recovery,lots of yummy meds and some extra painkillers as my muscles were so sore I thought I had run a marathon, I was finally sent back to the ward, to be closely monitored.

I needed the loo, so my nurses said, i know you dont like to be hassled so i wont get you a commode as we are supposed to, just let me know if you feel ill. haha. and that was the end of my monitoring.

Everything passed uneventful. My surgeon said things are looking good, but we are still going to keep treating it aggressively with monthly admissions. And I got the train home the next morning.

And that is where the fun began.

I had had my painkillers increased but when I got off the train, I was not due any for at least an hour, so decided it would be good to run some nebs and have a nap. When I awoke, I felt really hot and sick. Took some anti nausea medication and then ran the loo as it wouldnt stay down. Over the next 4 hours I spent the most of it throwing up. My mouth was so dry, I couldnt even use medication that dissolves in your mouth. I was so dehydrated, but I couldnt do anything about it.

So, once my dad got home from work, it was off to A&E. Mum couldnt take me for obvious reasons and so poor dad got stuck with it after working a 12 hour shift. Sat in A&E for 4 hours before seeing a doc, again i spent most of it in the loo. Finally got an IV going and sent off bloods and got some IV anti sickness stuff. At this point the stuff made me go a little loopy and I kept talking absolute crap and losing my thoughts mid sentence.

I sent my dad home as he had to be up at 5am and it was already 1am. So more xrays, more fluids and more tests. by 4:30, they decided it was my chest playing up and the stuff off my chest upsetting my stomach. Pushed through some more IVs, let me sleep a little and then made me drink loads. As what I drank stayed down for a few hours, they declared me fit and discharged me.

I got home at 8am this morning. and yeh. Exhausted still shaky and sick, but tryin to keep fluids up. Apprently the doc could see a lot of scaring on my xray, but that will all be dealt with by my chest consultant. And right now, I am trying to run a load of nebs as my chest i think has more fluid in it right now than my blood stream heh.

And that was my night. Watching and laughing at some of the dramatics in A&E. Such as one lady screaming in pain in her abdo, and over dosing on her inhaler to get rid of said pain. Not sure how that one works as the inhalers only go to the lungs, but I guess it would shove her pulse rate up enough to get some attention. Plus she only seemed to scream when there was a nurse about. And the guy walking around clutching his chest, looking like he had heart burn or indigestion, but all the while, drinking an acidic fruit juice. on my and these people actually go and sit in A&E.

I look like a scruff as I have not washed, and have tape marks up my arms from bloods and gases and lines and what not. but its all good as I dont plan on seeing anyone today and may just push to having a bath later.

still here

2011-07-10T21:11:00.001+01:00

Today u feel a million times better than i did last night. Last night was tough. I felt since dreadful and spent half the night with my head down the look. Nausea and extreme coughing really do not mix well.

On reflection i think there were a lot of things happening at once. My airway has gone down quick this month and so my body is kicking up a fuss about it. I don't think my chest infection has cleared and so the continuous coughing has left me exhausted and in agony.

There are some family issues going on at the min and that has left me a little stressed which always messes with my stomach and then kicks off some adhesion related pain.

I also had lady pains and then i realised that i had accidentally run out of one of my psych Meds. Those Meds are known for the horrendous withdrawal effects. So i think everything just ended up happening at once and that was why at 2 am i wad sweating like a pig with my head down the loo trying not to cry.

But today is a new day and things are getting easier. I have had some anti sickness sorted my Meds out and managed to travel drama free back to London.

I did sleep the entire train journey so i hope i was not snoring. Or giving off my death rattle as my niece now so affectionly calls it.

And tonight nursing staff? Well they seem pretty on top of things, but then i am object the male ward at present.

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Its differnt

2011-07-09T19:52:00.000+01:00

I usually know my body fairly well.
When I feel crap I know why and I can work on rectifying it.
But today is different.
Something doesnt feel right and yet I can put my finger on it.
Last night for the third night I coughed all night. I awoke to my niece prodding me, trying to wake me up because I sounded like I was chocking.
Last night sleep didnt come easy. I was plagued with vivd dreams about death, dying and catastrophes.
Everything had to go slow this morning as I couldnt breathe.
Exhaustion weighed my body down, to the point my family keep asking if I am ok and they are the ones used to seeing me looking rough.
I tried to nap, yet it wouldnt come.
I feel foggy, buried in quick sand.
Everything is happening around me and I have no the ability to move.
My stomach is playing up. My head hurts.
Something does not feel right, but I can not pin point what it is.
Nor can I recall every feeling like this before.

I have things I have to do this evening.
And I dont think I will be able to.
My body feels weighted to where I sit.

Please let things change,one way or the other. As things stand now, I dread attempting to make that journey to London.

bad day

2011-07-08T00:20:00.000+01:00

Today has been a horrible day.
Probably one of the worst in a long time.

I woke, coughing my head off. I soon realised that not only did I still feel exhausted, but the top half of my body ached so much. My fears were confirmed when I looked at my phone and my sister had text, asking me to call her when I woke as she was worried about me, as I sounded rough all night.

So I spent the night coughing. And my youngest niece told me earlier that I was scaring her during the night, as I kept making gasping noises. Apparently, she kept checking on me to make sure I was still breathing, aww.

So yeh, looks like my luck with my throat has ended.

But, that has left me exhausted and more than a little annoyed/disappointed. Which has left me struggling to deal with everything else. My mum at home isnt well, so my dad is stressed and not sleeping. Which has left him grumpy and mum emotional. When those two emotions hit, it makes for a angry daddy. He shouted at my sister, for something stupid, which left her upset and set me on edge. Then I had to go home and then come back up here. Which once again, caused more stress. And well to cut a long story short, my who does not cry, couldnt stop for a while. Which my sister saw, and made her worse as well the strife now between her and my parents. The whole thing is fucked up. It would be so easy right now to just fall apart, but I have to keep it together. Now lets just hope London dont piss me off, else things may get dangerous.

Tomorrow is a new day.

London (again) & scarecrows

2011-07-06T01:01:00.000+01:00

This week is national transplant week and rightfully, I should be doing some stuff on transplant. Believe me, I do want to. But this year, I dont have the resources. I had some photos I wanted to upload, but they are at home and I am not. So my blog unfortunately is limited this year.

So yeah, I am not home, instead I am currently residing in my sisters house. Its my mums low week from chemo and as I am still coughing my head off and have on and off sore throats, we decided it would be safer if I held my distance from mum this week.

Monday I had outpatients clinic in London. And as I thought, it would have been as much use as talking to the wall. I rang the hospital on several occasions to confirm that I needed to go to both the clinic and the admission and I was told several times that yes, if I had been sent them, I needed to go.

I got in, and the doctor, who I had never seen before, starts asking me about my breathing. He wasnt really listening to my answers and then begin with, well we need to decide when you next need to be admitted and such. So I told him I already had an addmission letter for the following Monday. So he said oh. Checked his phone and then said, well next week is a very busy day, but yes you are so, you dont need to be here and we will see you then. *headdesk*

That was totally worth a 5 hour round trip. blah. The hospital frustrates me. Not to mention that it cost me over £70 in travel expenses. I tried to claim them back, whilst I was there, but of course they cant give more than £20 in one go as its a small hospital, so I need to send off. Just like the month before, that I am still waiting for. God knows how they expect you to pay out these fares all the time and wait like 2 months by the time they do the paper work to get it back to you.

Alas, the day was not wasted as I met a friend and was able to have a nice social day. We visited the M&Ms store.

And ate strawberrys and cream in the park with some yummy drinks.

And laughed at a man walking a dog in a pram.

I got to my sisters just after midnight, so it was a long day.

The village by hers is having a scarecrow competition, so we went for a drive around to see them all after tea. Some of them are brilliant.

Blues brothers

I have not posted them all, but the local church has a bride and groom by the door and a vicar by the gate. The pub has a tart sitting on the wall and the nursery made a worm. There are various other Elvis ones and Micheal jackson. And some on roofs in places you wouldnt expect. I do like that about villages.

Anyway exhaustion is kicking in now.

A whole lot of YAY

2011-07-03T00:54:00.000+01:00

I have a new toy, that I have completly fell in love with!

I had some vouchers and money coupon thingies, so I bought a Kindle! And I must say, I have fell completely in love with it!

Yes I did my research first, and it was a kindle I decided on as it is much clearer than any other ebook reader. I do love my books and the smell of them and the feel of new paper. But the kindle, is just going to make things easier. It can hold thousands of books. So when I would normally carry one for a short hospital stay and 3 for a long stay, this is smaller and lighter and I can take as many as I want. Its also easier to read in bed and yeah. So this is me happy :)

I also have a smurf tshirt, which just makes me far to cool!

Ah, theres not much new in the life of kim at the moment. I have been tired, but I think it has more so been down to being active. Mums chemo seems to be hitting her harder this time. And she is too exhausted to do anything by the afternoon (though she spends the morning doing silly stuff which is getting a tad annoying) This means, that most afternoons/evenings, I have been catching up on the shopping/cooking/paperwork etc. Its not been to bad as I have been able to do it at my own pace, I find by 7:30, I just feel whacked out. So the plan now, that I am trying to get in, is going to bed earlier. But its easier said than done, as I like my nights. I like it when the house is quiet and I have nothing I need to do or think about. I can just relax and do what I like. But I am going to try and go earlier.

As for breathing. Things still seem to be going good. I have had a couple of bad days, where I had an angry rage/cry to friend as it was hard and I was at the point where I was planning on begging them to put the trach back in. (that should tell you how bad that night was) But I have also had good days. Ok, not where I should be up to, but better than I have had for a few years. So, its all pretty good at the moment. Though, I guess I havnt been as pushed as normal. Normally I have to keep up with others, but as I am runing things, I can do things at my own pace.

The time when it was hard, was the other day when I had to be out for certain time and suddenly things were hard. I still had to do things just as quick, but it was scary, all the old feelings of not being able to breathe and worrying about what comes next and how I will get through what I need to. But for now, this is positive and I am going to hold onto that.

Just think, if this carries on, in a few months time, things could just be amazing. If I saved up, I could probably afford to go back to uni, at least comptly one course. or even scrap it an just work. At the moment its still a distant dream as I still lack the energy. But it is all possible. The hope of it is keeping me going right now.

And more so, I am going to London on Monday for clinic. But this means I get to socialise with a friend. Which is yay. And I can do stuff, as I can breathe. So yay for that too.

one hospital then another

2011-06-29T23:20:00.000+01:00

Right now, I feel content. I have no words describe it really. I spent the most part of the last 8 years filled with hate and anger towards myself and projecting it on those around me. But right now, that part is buried. Dont get me wrong, I know it will be back, but for now, I am enjoying the calm. The small things make the biggest difference.

Simple tasks, such as making something pretty, buying new colouring pens, playing with my niece, reading, baths, hair dye, the closer bond forming with my mum, the chance to occasionally feel useful, to pay some hospital time back. Its like a big warm blanket is wrapped tightly around me. And for now, I am managing. For now.

Today, though, has been a long and tiring day. At 9:30 this morning I had an appointment with my new respiratory consultant. I like him, he seems down to earth, or perhaps it he was more honest after having a refferal from one of the top thoracic surgeons in Liverpool.

Anyway, long story short, he is curious as to why I have so many infections in my chest and he would like to see how my lungs are now. So, we are going to run a load of tests. First off bloods, which were done today, testing for some lovely fungus and allergy type things. He said my chest sounded clear, but askedfor a sample of what I was coughing up to send off. From said sample to send off, and the fact that I had a major sore throat this morning (never a good sign) as well as my saying I think there was something currently in my chest, he gave me antibiotics too. But, and this is where I like him already, it was a 10 day course! Most places only give me 5 or 7 days, which hardly does anything and I end up needing a second course. So he has my trust already ha.

I had to have a spirometry test (urgh)
FVC (forced vital capacity): 3.54
FEV1 (forced expiration volume): 2.16
PEF: 2.48
Which give me a a lung function of (drum roll please) 61%
Not bad I guess, but yeah.

He is also sending me for a repeat CT scan. The one on file is from 2009, so he wants to compare the condition of my lungs now. On top of that, he is sending me for some gastro type test thingy (there is a condition common in my dads side of the family of lungs developing holes) And he will call me back to clinic once he has the result from there. I think he is also thinking of trying inhalers as he asked me which ones I have had in the past. And then asked about steriods and if pervious ones had helped with my chest complaints. I told him that I couldnt tell him a good answer to that, as the times I have had them, were when my airway was really bad, which would also effect my chest.

So yeah, as far as first appointments go, this one went ok.

And then we dashed off to another hospital for mums second round of chemo. Which took forever. They tell you it will only be an hour, but it was more like 4 hours. Mum dozed in the chair while it was running and I struggled to stay awake. Sorted out both of our prescriptions whilst we were waiting.

Came home at 4 and I fell asleep for just over 3 hours. I was dead to the world as well. But, this is where it gets frustrating. Mum is going through worse treatment than me and yet she had to sort tea as I was out of it. I do feel guilty about this. She knows I help when I can and so dosnt mind me sleeping, but I still wish I could do more.