I be back

Ah, so you may or may not have noticed that I am back! :)

Court went well, with no problems like I have had previously, but this isnt some place where I can discuss that.

Aside from that, I actully put my blog back a while ago, life has just been a bit hectic, which is actully a really good thing.

In the last couple of weeks, it feels like the mist around me has finally lifted. There are many reasons for this, I think, such as medication levels being played with, time away from hospital, the court case being over. Thats not to say that my mood and such is perfect, but it is way better than it was a few months ago. Over Christmas and probably before then, I was feel very fragile. I had given up hope of things getting better and I was filled with resentment and no real purpose or goals in life. My time seemed to be come home, rest and get over surgery, spend a few days catching up on things like paper work, laundry and appointments. Book my next round of transport and hotels and then go back for surgery again. I had such high tolerances to the pain meds, that coming around, morphine no longer even touched my pain and I was needing IV ketamine followed by oral ketamine.

Now I am being careful not to blame the hospital to much, else I will end up dreading my next admission, but over the last year so much of my life has revolved around hospitals, admissions and appointments, kinda like a bad relationship. You dont realise just how much it has been taking out of you, until its suddenly not anymore. But that is no reason to never have relationships again. Or at least that is what I am telling myself.

But little things are slowly changing and I am being careful not to change them all at once, else I know I wont keep it up. I have cut down a lot on the junk that I was eating, hoping to lose a bit of weight, but we shall see. I am eating healthier and slowly trying foods that I wouldnt even try not so long ago. I ate red cabbage the other, I have started drinking tea (typically british, though I prefare lose leaf earl grey, black with just a touch of sugar) This week I have started drinking espresso, which is something that I never thought that I would be able to drink, but I am actully liking it, it gives me a bit of a boost when I have no energy. I am eating a lot more fruit and though I still love my truck (scooter) I am pushing myself to walk further. I still get out of breath and I get lots of disgusted looks when I have a coughing fit, espcially when I find myself having to stick my head on the side of a shopping trolley, to keep my balance while my muscles cramp from the effort, but thats people for you and to be honest, if I heard someone coughing like I do, then I think I would stay as far away as possible. That being said, someone did tell me I was disgusting the other day and that I should go outside. I was in a pub having food with my parents and I just couldnt help it. Kinda ruined the mood, but again, some people suck.

Tea?

I am working on updating my wardrobe and have even been out today and bought a few new bits, including a little blazer jacket and some other items that I never thought I would wear. I am getting to that point, where I am too old really to wear hoodie jumpers and though they will always remain my go to comfort items, on days I feel up to it, its nice to wear something a little bit more classy. That being said, I am not ready to give up my jeans just yet. And of the course the most exciting thing about losing a little weight is getting back into my jeans that became to tight during my long admission.

hmm what else am I changing. Well, I am trying to go to bed earlier, doesnt always work, like tonight for example, but I used to make sure that I started my nebs by 1am, now I have pulled it back to 11pm (they take about 2 hours to run), though may work on getting it earlier once I find 11 easier. I have started setting my alarm clock for 10am and being out of bed by 11am. This week, I am working on getting over my fear of showers so instead of having a bath of a night time, and always putting it off so it ends up being about once a week, I have now started having one as soon as I get up, everyday, unless I know I am going to be out all day. If I am going to be out most of the day, I dont have the energy. It also means that I am dressed before 12, when normally, I would spend most of the day in my pjs. Overall I guess I am just feeling more alive and I am so thankful for it.

I am still working on moving my room about, always knew it would be a big job, but so far, gotten rid of so much stuff and it is not only nice to use but easier to keep clean. I promise pics once its done.

As for hospitals, right now I am avoiding an admission. I have just finished a 2 week course of cipro antibiotics and though I began to feel better on it, within 3 days of finishing them, I ache so much from coughing that I am hitting the painkillers again. The hospital, after many messages back and forth have decided to fit a port in my chest, to make IV meds easier, I am also hopeful that this will mean that I can run the meds at home instead of having to go into hospital. Fingers crossed on that one. They are also going to arrange some more sleep studies, to see if there is anything they can do to help my energy levels. I virtually always wake up feeling like I have not slept, I sleep for 10 hours plus most of the time as well as falling asleep during the day and finding it hard to wakeup. They want to look at my blood gases incase there is anything there. I doubt it will show up anything, but I am super thankful that they are still trying to help little moaning me.

As for London. London these days means two things. First off there is the side of it which I will refer to as medical, which is my appointments. I was there last week, and my trachea still looks red and inflammed, which is why breathing is still hard, but the inflammation also makes it easier to grow scar tissue again. Nothing they can do about that though, as they have already tried blasting it with all kinds. Breathing is still hard and you can hear me come from a way off, talking is also hard and often, I will talk and no sound will come out. It can take two or three attempts to get my words out and even then, only short quiet sentences. They want to try putting a stent in the airway to hold more of it open. I dont know how I feel about this. If I thought it would be straight forward, I would jump at it, but I have had issues with them in the past and the continual chest problems, can also add more problems to it. It could also mean another long admission. If it went straightforward, it would be a week, but complications could make it much longer. There is a possibility of going in in May, but I need to sort some stuff out first.

Now the other thing that London means, I am going to refer to as educational. Again, I am bound by what I can say, but I am working/helping out at UCL (university college london) on some medical trial stuff. I get to work with a bunch of people there including the professor that I met years ago. Its all very interesting and they are open to me doing as much as I want within the university. Last week I went on a course about research. I will write more about that next time, but it is so wonderful to feel useful again, to have even a slight purpose and who knows what it may lead to.

I was there last week. I travelled down on the Sunday and stayed with a friend. Spent Monday at the uni, tuesday I went to Camden with a friend I met on my last cruise and Wednesday I had clinic. It was a bit much in honesty. When my parents picked me up again on wednesday afternoon, I looked like crap and couldnt keep my eyes open, but it was worth it.


Right now, I am just so grateful so a huge amount of things. The uni for including me, the proferssor for having faith in me, my family for holding my up when I could no longer do it myself and my friends, for not only believing in me, but being supportive, yet truthful, for judging or arguing, even when conversations got hard and must have been difficult for them. For all the hospital staff, from cashiers, clinic nurses, drs, nurses and even cleaners, for treating me as a person and making hospital that little bit less icky. Without all of these people, I am sure I wouldnt have made it this far. And as I begin to rebuild myself and my life around my limitations, I can see that I would not have made it this far has it nto been for them, each and every person, in their own unquie way. So if you are reading this, Thank you. And to my followers, even the smallest of comments, can bring sunshine through a storm, can make you take a deep breath, rethink and retry. right now, I am still in the same place I was a few months ago, but now, I feel happy, like I have control of things and am in charge of my own destiny, no matter my limitations.

Anyway, long enough and rambling now. (but then name of the blog suggests it)
Night

Horsing around in Camden

You only miss the sun when it starts to snow

                                    Well you only need the light when it's burning low

                                           Only miss the sun when it starts to snow

Only know you love her when you let her go

Only know you've been high when you're feeling low

Only hate the road when you’re missin' home

Only know you love her when you let her go

And you let her go

Before Christmas, I felt like I was losing myself. I did what I always swore that I wouldnt, I lost myself, lost my passions, my loves, my determination. I became my problems, my illness, lost in a world of admissions, tests and disappointment. I could no longer cope, things seemed so bleak and my own company became unbearable. 

Now, I have had a break from everything. No tests, no clinics, no admissions and no surgeries. I have had my meds adjusted and I have had a few breaks from everyday life. Ive spent time with those I care about, those I love, I have done things that I have been putting off for months and achieved those smalls goals that slowly give me hope back.

And now? I am starting to feel like me again. The old sense of pride and hope kicking in, planing further ahead than just a few hours. It feels like the fog is once again begining to lift. Dont get me wrong, I know that I have a long way to go and I know that I cant stay away from hospital indefintley. But thats not the point, I am starting to feel like a person again, a person with a purpose, with a goal, with hobbies and interests. A person who believes that there are tomorrows to be had.

I have had the best birthday that I have had in years. I went out for a meal with the parents, visited a friend in London, went on the Harry Potter studio tour and saw Wicked in the theatre. I had deep conversations and realised things for myself. 

I attended a medical conference, that came with bad news, yet also spoke to some people, that give me hope. Refound my purpose towards my future.

It was all completely exhausting and I had to pace myself. Breaks to allow my lungs to rest after walking for a certain amount of time, sleeping and sitting still on days following active days to allow my muscles to rest. Good company and good food. 

And now I am home. I have a new determination, I dont know how long it will last, but right now, all I can say, is exciting things are happening for me. Maybe small and silly things, but each step forward is an achievement. And it feels good to feel something other than sad. 

Photos to follow at some point, but tonight, I am hopeful and thankful. I may have some crappy circumstances, but I am so so lucky to be where I am, how I am, with those I love around me. 

You dont realise how low you have been feeling, until your not so low. 

Part 3 at last.

Well part 3. Who knew it would take me so long to be able to write this up. Perhaps this is why I dread writting in here any longer. Things get complex and I begin to rmable and the entry suffers by getting longer and longer.

So Monday I was admitted to hospital and Tuesday I went to theatre.I spke to my surgeon in the anesthtic room, where I usually seem him. He said he would like to have a try with a T tube. Which is kinda what it sounds like, the tube is shaped like a T, with the long piece coming out of my neck where my trach currently sticks out. The thing being is they tend to block easier and are a smaller opening. I had a lot of trouble with it last time we tried.

We are short on options, so we decided to go with the usual steam of laser and dilation and anything else he thought may help whilst he was there. With the aim that in Januaury, we will review things and review the T tube again.

With that, they knocked me out with the gas, as they couldnt get any lines in so they were going to do it once I was out of it. Good job really, I came around black and blue where there had been at least 7 attempts, plus at least one tissues and flooded the skin instead. I had one cannula in place in the end, down the back of my wrist and up the inside of my thumb.With many many layers of tape on it to support it.

But none of this I took in at first. The first thing I remember wastrying to scream in pain. I never scream in pain, but this was intense. I also have very little vocal function right after surgery and so my scream was probably more of a squeak. They gave me pain meds, then doubled what I had, but I was still unable to breathe properly through the pain. I was panting, hands clenched into fists. It was exhausting and trying to make myself heard, was frustrating. It was almost as if they didnt believe I was in pain. They kept saying things like, you have had all we can give you, so you just have to wait now and we will get you back to the ward. The thought of being stuck on the ward, were I wait hours at best for pain meds terrfied me even more. But I felt so vulnerable, so just noded in agreement. The recovery staff kept speaking to the ENT team who increased things for me. She came to check on me at one point and just said, you do not look comfortable at all, at which point I just broke down, at last someone was listening to me. I almost begged her to knock me out because I couldnt deal with it. I have done painful procedures, but this was only meant to be laser, easy surgery.

At last pain was under control and so recovery rang the ward for them to come up and collect me. And this is where the wait hit in. They did this to me last month. They kept me waiting two and a half hours last month, because they were too busy to come and collect me. Sitting in reocvery for a prolonged time is so frustrating. There are no toilets, so you have to cross your legs or go down the bed pan route. Then you miss your meal, because your not on the ward and once they have phoned the ward they cant give you any more pain relief as the ward could come at any time. This time I waited just on 2 hours. Same nure again. I get on with all the staff apart from this one nurse.

Finally on the ward and my pain was building up again. No sign of my nurse, no one could find her. My pain levels were reaching maximum and I was feeling like crap. I came so close to just packing my stuff up and walking out. My thinking was that at least if I were at home, I would be able to control my own meds. Just then, hand over staff came on and as I say, I know most of the staff now, they know I dont complain, so walk in on me with tears streaming down my face, mutttering about self discharge. The nurse soon figured out that it was pain that was driving me that me and within a few minutes, she had gone and goten my pain meds. Even though she should have been in handover she sat with me for 20 mins while the meds kicked in and my heart rate came back down. I have never been like this before. I have never needed anyone, but then I had never had pain like it and I admit that the whole thing scared the crap out of me. As has the following week really.

Wednesday I spoke to my team fully. They are still shocked at just how much my airway scars up and closes in the short space of a month. They know that in between I have no real quality of life.  I guess that is a subject that has come up a lot recently, quality of life.

They were not sure if the breathing tube pushing up is causing the scar tissue to appear faster. Though we have tried keeping the tube tied down before, it still tends to break through the tissue or strings. So this time, they have dug a channel out, the lower end of which they think is much stronger than the rest of my trachea.

They have put the trach tube into this channel and stitched it in several places, very close to my collarbone in order to hold its place. I go back Wednesday for them to see what has happened, with the aim of taking the stitched out.

Personally I dont think that it will stop the tube heading up, but I am willing to go with it with my fingers crossed. In the mean time however, my pain has lesseend, and yet I am still in a great deal of it. Inside my neck, along my glands and across the front where it is stitched. All causing there own variety of pain. This is making it difficult to cough and to add to the baf, my chest is sore and my chest muscles ache. But fingers crossed that will all settle Wednesday.

And that brings me to my current issue. In recovery, they pump me full of all kinds, most of which has no effect these days. Morphine, fentanyl and tramadol. And of course the wonderful back up of ketamine.

But when I am home, pain meds are a little harder to control. There are so many of them that do strange things to me. For example oral trammadol, is like taking smarties, I dont get any helpful effect at all. Other meds like Oxynorm, send me crazy, to the point where I dont know who I am or where I am. This leaves me with my go to meds, mainly oralmorphine. But the side effects get worse each time I use it. The itching was always the biggest problem, but that could be managed with enough creams and piraton. But now, the oralmorphine, leaves me with insomnia. For this admission and to get me through, they have prescribed me some zopiclone sleeping tablets. so I can keep the pain under control as well as getting some sleep.

But now, I am finding it harder and harder to stay awake. Today, I got up just before 12. By 2 I had gone back to bed and didnt wake 8. Had some tea at 8:30 and proptly fell asleep with my fork still in my hand.

tonight, I am droping the sleepers, in hopes that I can spend some times awake tomorrow.
And apart from that, heres hoping Wednesday brings good news. for my body can not take anymore.

And know you know why my writting is so awful. I find myself falling asleep mid typing or mid conversation or just in general. My head cant help but think, is this what the end will feel like? And how long would I hjave till I hit that point.

I mean, how much and how long would you carry on fighting if there was no chance of change.

Delieghtful thought to sign off with, but always good to show my brain is still workin.

missing bit part 1

So continuing on from last night. I will eventually finish this entry, though maybe not tonight either.

I have mentioned about spending some time in London to work with a team of researchers. Well, inbetween that, I was able to stay at a friends house. Whats more she even let my niece stay too. Its strange seeing them talk together now. Last they met, my niece was merely a child, but now she is the whole person of her own. I am so increadably proud of her.

We had aimed to go visit the Harrods Christmas Parade, but the parade was mega early and without huge costs in energy, there was no way we could do it really. So we slept in a little later and still had a fun day.

The friday, we visited Westfield and I took her past where they do the filming for BBC Sherlock (Its our little obsession together. We often through quotes at each other from it.) As it got darker, we met with my friend and went to watch a firework display. I think it has been a while since my niece has been taken to a display, but she was mesmerised by it. By this point I was getting rather very tired, so I put my arms around her wiaste and my head on her shoulder. She thought I was simply cuddeling her and so we stayed like that for a long time, I do hope that she is able to keep the memory of it being a cuddle, rather than it being her supporting me and keeping me upright.

Saturday, as I mentioned we missed the parade, but we had to go for a harrods visit anyway. I am a big kid and so we spent a long time sitting playing with the toys. We spent the evening in China town, looking at totoro and other random things. Followed by a night collapsed in front of the tv eating cinnabon. It was very yummy.

Sunday, she had to get the train back for school, but that left time to visit Camden for some further retail therapy. We even found a a stall selling deeo fried oreos. Not had then in over year, but they were si good. I also bought some new boots (Dr Martens and cant wait to wear them properly) She was back on the train home long before I wish she had to go, but it was an increadbile weekend and I hope to do it again one day,

So that bring me back to Monday. I had the reaserch meeting and then I was admitted to my usual ward. After spending so much time on this ward, everyone knows me and I end up stuck having conversations with every on the ward.

Im skipping over the details so not to bored people.
Tuesday morning was theatre morning. As usual, shower and dressed into a sexy gown. Saw my surgeon just before going under. We spoke about future options. He wants to try putting in a T tube again. I sad we have been there and it didnt help.

He still thinks that it is worth trying and so we are going to review in January. So this time, they decided that the tube is pushing up on the new area and causing it to damage. Really? I mean im ssure I have been telling you that for the last 3 monthsl

So anyway, banter aside with the theatre staff I awoke and was actually feeling warm, which was amazing as I am usually freezing. But then the pain kicked in and I almost shot out the bed. I was in agony and the heart montores were going crazy because of it. After lots of disscussion, they started uping my pain meds, all the while talking to me like I was making things up.

Now I am going to stop here again, as I keep fallling asleep mid sentence. but yeah, nothing great and still pretty wired.

A reason to be.

I always seem to mix the good with the bad. It softens the blow so to speak, but of course the problem with that, is that the good doesnt get to shine through quite the same.

It has been a long week and so I am going to start from the middle, for where is a better place to start than right there.

I am not sure if I wrote a while back about a committe I had been asked to join. I now can not write to much, but to give the basics of it without breaking protocol, there has been a huge funding investment made into regenative medecine. This is the area that my surgeon is hoping to work on and the reaserch could change everything.

To try not to be over dramtic, it is looking at the use of stem cells and the ability to grow new things from them. Now where this concerns me, is that the first places this has been used, is in the area of tracheas. It is a technology that one day, could mean that no body has to go through the issues I am having. That a new trachea could just be grown for them. And to go even deeper, it is a technology that one day maybe able to be used to grow anything a person needs. Be it an organ, some tissue, an eye or even a lost limb. The possbilities are endless.

Now I do need to be clear on one part, and that is that I am unlikely to benefit personally from this technology. The first patients are being selected and I can not be one of them due to the complexity of my body and medical hisotry. But, I get the next best thing. I get to work with the top doctors and have a voice in steering the way the work goes. It is a big respobility and yet one that just feels wonderful. To think that no one else will have to go through this pain and waiting whilst being unable to breathe.

And that really is about as much as I can say on it, as its all very confidential.

However it did mean that I was in London this weekend for a confrence, which went well.

I did have more to write, but I think I will come back and finish tomorrow, as my arms are not up to typing tonight. But yes, exciting times in the future are to be had.

Weekend up, surgery time.

I had an amazing weekend.
Though, it was a very exhausting weekend.

My Dad had a long weekend off from work and so I talked him into taking Mum away for it. they deserved the break away from the stress of hospitals and clinics and tests. Due to my issues with phones and such, (Cant hear them, they cant hear me) I dont know how well the weekend went, but from what I gather through text messages, they seem to have had fun.

This meant that I had the house to myself over the weekend, so I had my niece down to help out and for company. We always have a good time when we are together and despite having lots to get done, the weekend was no exception. Thursday involved chest clinic, which there was little he could do as I had only just been discharged, but he is checking to see what bugs I am growing. Then Friday was Liver Transplant clinic in Leeds. There was a fair bit of traffic on the motorway, and clinic was crazy busy. But everything went well and my blood results were all clear. So that was good news.

Monday morning was back off to London and Tuesday was back to theatre.

Waking up from theatre was horrible. I am used to it now, espcially from laser, but this was differnt. My throat and mouth tasted as if I had been smoking. I was in agony and shaking like a leaf. They put the warming blankets on me to help with the shaking and put some pain killers through. But the pain was still there and I felt much more rough than I have done in the past. They also managed to catch my lip with the laser, so I have a mark there now, but that will fade in time.

Getting the results this morning, there was a lot of granulation tissue blocking my airway above the tube. More tissue than they were expecting, but the actual trachea was still holding itself up. This is both good news and bad news. It means my trachea is holding well despite me having coughed the cartilage out. However, I am having the same problem I have had everytime, in that the scar tissue buildsup and blocks my airway. And so the doctors think there is still a chance of things working, but that they want to stay on top of the scar tissue. Which means that I am back in for the same thing in 2 weeks. And in the mean time, I have to keep the trach in. As of today, less than 24 hours after surgery, it really dosnt feel all that differnt.

As for still being very breathless even with the trach in, they think that is because of how positional the tube is as my trachea is now a very odd shape. So overall, I cant breathe with the trach and I cant breathe without it. We just got to keep stumbling on with the tube as it is, taking things easy. And hope that in the mean time, the granulation (scar tissue) slows down or stops building up all together.

There was some other news though, of a potential option, but it is not one that I am willing to even think about never mind get my hopes up about at the moment. Apprently, tracheal replacement surgery has been given the go ahead in the UK. I have only been hoping for that for the last 4+ years. But there was a guy in the theatre yesterday who is looking for potential candidates. So he has taken away my details to review, though I highly doubt I would be offered it.

That aside, I did say to my surgeon, let me guess it is about 2 years off? And he said yeah, but more like 18months. I just laughed and told him that was what I had been told for the last 4 years and he agreed but was adamant that things had moved on. After all the last lot of complications, I doubt I would be picked for it anyway, and given the whole 2 years off thing, I refuse to even give it more than a few minutes thought really.

And now its nap time as the anesthtic seems to take longer and longer to get out of my system everytime I have it.

Still here

I'm still home.
There is still a lot of hospital stuff going on.
Tuesday I had my stitches replaced,
Wednesday I had to go for blood tests.
Today I had chest clinic.
anf tomorrow is Liver transplant clinic in Leeds.

Things are tiring. Breathing is hard work. To the point that it any walking, be it flat or slow, leaves me gasping. Stairs are a complete nightmare. I go up them slow, yet it still takes me over 5 minutes to catch my breath at the top. My breathing is very noisey and a little embarssing. So admitedly I have been avoiding walking in public.

But Monday is back to London for a review and surgery. So hopefully I will get some answers. I am trying to stay positive. I mean, at one point I didnt think that I would ever get back out of hospital. Yet here I am sitting at home. Yet there is still that part of me that knows the signs, knows how tight things have gotten and knows the pain that has been there. But I remain hopeful. I dont think they could leave me like this for long, so hopefully a plan will be put together. I just hope that they listen to me and actully hear me. I tell them that breathing is a struggle, but they only see me when I have been sitting still, so I dont think they see the extent of it. Its just exhausting sometimes.

Next week, I will hopefully know more and then I can feel a little more settled. And this weekend? Well, I have my niece here all weekend, and my parents are away. Much cuddeling and fun is to be had. Not to mention lots of junk food and sugar. I need this to recharge before heading in for the next round.

The 9 1/2 week hospital saga

Wow a whole month between posts.

There are a lot of reasons for it really. I mean I doubt anyone reads here, but it was always more for me anyway. Partly that I have so much to catch up with that it became a tad overwhelming. But also because, I used to write last thing of a night, right before I went to sleep, to allow all the thoughts to tumble from my mind. But I am back on my nebs and so by the time I run them, my hands shake to much to type.

So I am writing before I run them. I am going to do a quick run down of hospital, though my orginal post is half finshed, if anyone wants to read it, I can still publish it, but as I say, this place is mostly for me these days so I still have it in draft.

Hospital was tough. I was finally discharged last week, making my stay just short of 10 weeks. It was one of the toughest periods of my life. There were times when I was too weak or breathless to be able to even shower or make it to the bathroom easily. There were times when I threw up so much that I thought my stomach was leaving my body. There were times when I didnt think I would leave the hospital ever again. Those I admit where some of my most scary days. When breathing becomes such a chore that you wonder how much longer you can manage it unassisted. There were times when I pushed myself so much, that I had to sit on the floor for almost an hour to recover, then almost couldnt get back up off the floor. When I pushed so hard that I was in too much pain to walk for almost a week. There were days when I wondered if I should call my parents to let them come visit before time might run to late. There were tears and fights, but also joy and pride. It was one of the most emotional 10 weeks of my life and its not over yet.

Waking up from surgery, I expected to hurt, but I didnt expect to not be able to lift my left arm. The IV line had tissued during surgery (a common theme these days) nobody had noticed the line for some time and so my arm had swelled to 4 times its normal size. Given that my leg had been split from waist to knee and I couldnt move my neck, having my arm out of use made movement very tough indeed.

But I got myself moving, quicker than they had anticipated but I wanted the catheter and feeding tube out and I wanted to get as much movement back in my leg after them taking muscle out of it as well as skin grafts and finding the cartilage. I did all that and all was well.

But then my neck swelled, my oxygen sats dropped to 82% which for me is a huge thing for me and I looked like crap. I was put on 4 differnt types of antibiotics, but showed no sign of improvement. After late night draining of my neck, at 11pm on a saturday night, results came back that I had a bad hospital accquired infection in all of the areas that had been operated on. There were only 2 antibiotics that would get rid of it and I was allergic to one lot of them. I was put in isolation and begun them. The first 4 days were horrific. I couldnt even keep water down. Everything hurt from throwing up and the lsightest movement had me retching again. I was on IV fluids and injections for the nausea. But they began to worry about me not absorbing my meds as they wouldnt stay down either. At last after almost 5 days, my system began to adjust and the nausea eased off. Over the next 3 weeks, I had to cough all the infected material out, as the swelling slowly began to go down.

Then there were problems with the trachesotomy that they put in in surgery. It was butted into the back wall of my trachea, so not only could I not breathe through it, but it was wearing a hole in my trachea. After a few attempts at fixing it, it was taken out.

That night, I coughed out 3 pieces of cartilage that they had planted in my neck. I cough a lot anyway, jous of crappy lungs, but brining out the cartilage, was something else. The drs face was priceless, when I walked to the Drs room, knocked and asked to see him for a minute and showed him. You could see the cogs whirlling on what to do next, and checking I was breathing ok. Lots of treatments later, where I had to run almost constant nebs all night long, and my coughing eventually settled. For a while the Dr sat at the desk outside my room. Everytime I coughed, I could see him watching me, waiting just incase. It was both scary and reassuring at the same time. I owe a lot tot hat Dr, for although I didnt freak out, it felt like a team work thing. I didnt freak, because I trusted him. The Dr on nights the following week, would have spontatniously combusted if presented with the same scanrio and I dont think I would have felt as safe. Anyway, my surgeon was phoned at home and informed and such.

The following night, I coughed out some more cartilage, meaning at least 4 out of 7 pieces were now outside my body (though I think it was more so 5 or 6).Things were not looking as hopeful has they had a week earlier.

I had been fitted with a PICC line, that ran up my left arm to my heart for IV meds. A week after the cartilage insadence, just when things were starting to calm down, my arm began to swell. A scan revealed I had a DVT. If that isnt bad enough, I am allergic to the meds used to treat blood clots. I was started on new meds that nobody had heard of before and the line was removed.

It was noted that one of my eyelids had dropped and that my pupils were differnt sizes. I was diagnosed with Horners Syndrome, caused by damage to one of the nerves in my neck.

One morning, I somehow ended up getting my IV line flushed with salbutamol, a med that is usually only given as a neb. My heart rate spiked to 210 and I spent the following 24 hours on a heart monitor.

But, worst of all, out of all of that, was I developed Surgical emphasisma. Now I am no stranger to that, it is where air is able to leak between the layers of tissue in the skin. It causes swelling in the skin, that when touched crackles almost like rice crispies. I have had it before, but this was serve. It ran from my waist to above my ears. It swelled one of my eyes closed. I wasnt allowed to lie down and it was very painful. I had all my painkillers increased and was put back on the ketamine.

I was really begining to struggle to breathe and so, while I was awake, on the ward, one morning, I had a mini trach inserted into my neck. The following morning it was switched for a regular trach. Never have I had them put in while awake. It was quite the experience.

Surgery had to be held off because of the surgical emphasima. Breathing was still hard and I found my days filled with sitting still, whilst on oxygen and running so many nebs that I dont know how my lungs didnt swim out themselves.

Eventually I went back to theatre and things mainly looked swollen. But the trach was secured and for now, I breathe through a 7mm hole in my neck, that gets clogged because of my chest issues. Things are not very comforatable and we have no idea if the surgery will work at all. My orginal trachea had to be cut open with a bone saw, which is very unusual, the first time my surgeon has ever had to do it. So it was a mess to begin with. So time will tell.

I also developed a Staph infection in my blood system. requiring more IVs. This was discovered the day the Drs were discharging me. It is a nasty infection that can wreck the heart muscles in a mater of hours. So I had lots of heart scans. I was, disapointed at not being discharged as I had become increasingly home sick. I had told my parents not to visit as i thought I was getting out. When I didnt, the days began to drag, with no visits to break them up. In fact the last couple of days, I spent trying to hide my tears as I just wanted to get home.

Mixed in with all of the above, were fights with nurses who wouldnt listen, meals out and take aways delivered to the ward, good friends visiting and making friends with some of the nurses, I gained the trust of a Dr who I never thought I would, he even talks to me now like I am human. 9 I have had issues with him in the past) and other Drs, who gave me hope again and made me believe, if only for there shifts, that things could still get better, that i could make something of myself again, once my breathing was fixed and to him I will always be grateful, he lit a torch, in the darkness.


I saw some amazing sunrises.

Had the best picnics and time away from being a patient as possible.

And confirmed what I already knew. That I am under the best possible surgeon and the best possible team. Even if this never works, I will be forever grateful and in debt to them for there amazing skills, compassion and understanding. Not to mention their ability to not scream in frustration at the 10pm ward call they would get most nights for me, to fix broken cannulas, or if I had thrown another temperature, or coughed out some more cartilage. I am also thankful to the people who visited me and kept me sane, the ones that sent me gifts and those who well wishes I received via snail mail or online. I am a very lucky person.

Needed - Balance

I have said it way to much but still say it now. Nights like tonight, I need to write. I need to remember, I need the emotions. Yet I doubt I can do any justice to this. The subject is to big and I am too exhausted.

But days like today, things change and change a lot. They give me such a glimpse to the future and now always in a good way.

Today, my parents visited, I wasnt expecting it, they just turned up. I cant say how I felt. I knew that I looked rough and that it would be a shock in a way for them to see how much has changed in the last week or so since I last saw them.

What I hadnt prepared for though, was how much of a change I would see in myself.

I have done long term hosptial stays and I know they have an effect on you, but you can work on it once again when you get out of hospital. But this time, I couldnt keep up with a visit. My body was not physically strong enough to keep up with just sitting.

Simple things, I am lying on my bed quite comfy, no real stress. But I still had to have my nebs running all the time else my chest felt too tight to get the air in. I was mostly just listening to the conversation happening around me but rapidly finding out that in fact, even had I wanted to join in more I couldnt.

If i planned agead, I can control my breathing to get one full sentence out at a time followed by a couple of quick breathes and a few more words. But this was not susuataiable. To hold conversatin, became a chore or breaking things down. 4 words seemed to be my limit. So 4 words followed by 2 big breathes and 4 more words 2 more breathes 4 more words. And so on till I got my sentence out. You can imagine how long anything took to come out.

And if dad didnt get what I was saying or interupted me, I wanted to throw something at him.

Mum could see how hard I was finding things and took pity on me. Taking themselves off to do there own things and come back later. I feel guilty that they have traveled so far to come see me, only to find I cant keep up with them. Its not a nice experince.

Bless her though, she goes into full Mum survival mode for me. Making me nice food, tidying my drawer up, sorting my washing. Anything she can do to lessen the load on me.

Part of me wants to say, its not meant to be this way, not this quick.
But then, perhaps this is ideal. Maybe we both needed the harsh jolt of reality to show where we are up to.

Dad didnt like the idea of leaving me tonight. He was suitably anxious at how hard I was finding it just being right now. But as mum explained to him, it was the effort of me being there that was causing me such issues. If they hadnt been there, then I would have been resting my muscles instead of trying to force them to breathe and work.

Time will tell and tomorrow is a new day and all that jazz. But today has been a steep learning curve for all involved. One that shows just how close to the edge i am wandering right now. One wrong slip, one lose pebble and it could all come down on top of me.

Difference

I still havnt published my long entry.
Yet, tonight I feel the need the write, more for me.

I have said for a long time that I dont panic, with breathlessness, in general. Over the last few years I have gotten used to it and if I am in hospital, I can cope with breathlessness on excretion. Even if that is only going to the bathroom.

The point, when it does begin to play on my mind, is when sitting still, I notice that my breathing is laboured. Generally, when sitting still most people dont notice there breathing at all, so when I notice I am noticing, I know it is a bad sign.

I have had this sign before. I know where it leads to. That is when I begin to panic. Because, I know that there isnt much further to slip. And that from this point, things can become crucial quickly.

Today is day 3 of IV steroids. I hadnt noticed much difference with them, until this afternoon when my dose was delayed. I found myself watching the clock, waiting for the relief that would come when I had my dose. Waiting for things to ease.

My breathing is getting worse despite the steroids, despite the nebs and the treatments. And that leaves me in a difficult place.

Deep down, I know that the only real option left at this point, for saftey is back to the trach. Its not an easy option, not an easy one by far. For it to go back in, is messy and will cause damage and who knows what else.

But without that option, if I were to say a firm no in writing, to a trach, then I dont think there would be long left to argue. In a way I can play things down. My oxygen levels are never really effected and so its easy for the doctors to not see the extent of my breathing issues.

But this wasnt how things were meant to be. Tomorrow is my nieces birthday. I need to be able to at least phone her and wish her well. I have no doubt that I will be able to do that. But there is more that is not yet in place. Certain insurances, making sure my parents will be ok and such. I need a few more months to put the nail in that coffin. Plus, right now, things could get messy. If I were to take real bad, and my parents are over 300 miles away, it could be disastrous.

These are the things going through my mind right now. I know I said I wouldnt go back to a trach and this isnt me botteling out. In fact, if it goes in, it makes things a lot harder again because it means that I have to go through the whole tube lengthing crap again.

I am tired tonight. My chest muscles ache as I am not able to protect my own airway of a night, meaning they have to work twice as hard to get the air in. I didnt sleep as much today as I would have pleased as I was stuck in CT most the morning. I am physically and emotionally drained. And I know I should not be making any real descisions.

But the doctors know the score. And my fate, has been sent in an email to my surgeon.

Tomorrow will bring more news.
Tomorrow is a new day with new prospects.

I exist inside this room.
But outside, the world looks so alive.
Tonight, the sunset over London looks like the sky is on fire.
The world is winding down for the night, but tomorrow is a new day.
Full of new ideas.

shrinking

My world feels as if it is getting smaller once again.
I guess in so many ways it is.

Last week, I began to live outside my room. Ventures to the local pub, trips to the shop and visions of future. Thoughts of family, housing, uni and work were exciting me. Possbilities were endless and the world was just a breath away.

This week, I feel lazy in a way. My world has shrunk to the size of my room. One little square room, with a bathroom at the side. And even that is beyond my stretch for a large part of the time.

They took the stent out of my throat last Tuesday. All looked well but they wanted me to stay in for monitoring. Today things have gotten harder. A lot harder. I have slept a lot the last few days, but today, I tried pushing myself. A shower, nearly wiped me out. I almost had to crawl to get out of the bathroom.

finding myself, sat on the floor of shower, gulping at the air like a fish out of water, tears sliding down my face, but I dare not cry, for that takes more oxygen. But its not enough evidence for me. I push myself further. A slow walk to the shop I convinced myself was a good idea. For it would be a measure against how I was just a few short days ago. Pain wasnt how I imagined it.

So I sleep through the night and right through the day. Stay awake for the evening, but as tiredness kicks in breathing becomes more noticeable. I can cope with breathless on movement, I can deal with that without to much fear. But as breathless on sitting becomes a thing, then my calm begins to fall.

My body tries to keep up. Keep everything stable, but the numbers soon show the strain on my heart. A pulse of 130 should only be seen during heavy exercise, never mind lying on my bed watching tv for 2 hours.

And yet, part me worries. What if they say its me, what if I am unfit, what if I have missed something. I fear that they will send me home. No I more so fear that they wont listen to me. I try to reassure myself, that they must listen, the numbers speak for themselves.

But then, we head towards harder ground. I have rid of my trach. I said never again, no matter what. And yet, I am have been here now for over a month. I miss my home comforts. Simple things, watching mum cook the tea. Talking to my tortoises, hugging my niece. Joking with my Dad, sitting in the sun. Home cooked food, roast dinners and real chips.

When will I see home again? And if the only way to see it, is with a trach, then where does my resolve lie?
I always knew this was going to be a tough surgery. I guess now is proving just how tough.

But onwards, always onwards. For tomorrow is a brand new day and I have no idea how that will go.

Hide and seek Mr graft

It's part midnight and all around me are snoring. I'm tired yet I can't sleep.

This week has been tough already. My tube came out as planned on Wednesday and within an hour every breath was taking so much force and energy that it wasn't long before I wanted my tube back as my chest muscles were burning with effort.

Now a few days on, things are easier but still not great. I can breathe and talk again with out to much effort but movement still leaves me gasping.I an also having to run high dose nebs every 3 hours day and night. But all that I can do. Well I can do that until surgery on Tuesday. Which I'd good it's what I need. I guess I didn't realise just how much I moved around the ward normally. Simple things like trips to the kitchen and to speak to the nurses.

I had an ultrasound today to see if the graft has grown. They could only find one of the two pieces and it's only 1cm.I have not spoken to the drs about it yet but I'm pretty sure there should be 2 and bigger than that . trying not to lose hope yet. It could be a problem like being hard to detect on the ultra sound or just in an awkward position. Time will tell I guess.

Now if I could just get some sleep. Oh and kick this headache.

The big one.

To say that I wasn't scared would be a lie.

I had my week away and got back late last night. Unpacking and repacking was not the thing I wanted to do very much as exhaustion was a pretty heavy thing. Not to mention that I really wanted to spend today helping mum. Whilst away we had new floor laid and though it looks very nice, there is a fair bit of cleaning up to be done.

The holiday was great. Time resting, soaking in some sun and just generally spending time with my parents away from the stress of hospitals and building.

Taking a dip in the sea or pool would have been nice, but that is a luxury that I may get on my next holiday. I actually kinds did take a dip in the pool though a little unplanned. My legs were really hot and so on the way back to the room after a couple of drinks I decided to paddle through the kids pool thinking it would come about half way up my leg. But as I stepped down into it, it was deeper than thought and so u ended up in almost to my waist and having to grab my bag to stop my camera getting wet, ignoring my dress that got soaked. But it was fun.

Anyway by 7 this morning I was on the train across country that would bring me back to London. And here I am sat in the hospital.

This is where the fear sets in. Soon they will be taking my trach out and going that I can make it till next Tuesday without my airway failing completely. I do still worry that I won't last, but there are options in place should things become critical, as they say.

I guess it just stirs up old trauma of respiratory arrests and such, but this hospital is much more specialised and hopefully things won't get that far. Of course saying that knowing how my body never does what it's expected it may not become a problem at all.

Plus there is always the aspect of an ICU stay. It should only be one night, but that is still the place that haunts a lot of my dreams.

I find myself wondering often why I keep putting myself through this. The risk of making things worse and the fear and pain that goes with it. This is after all very major surgery. For a while I will have no airway at all and will rely on a tube thread almost into my chest for ventilation. Not to mention the complaints my lungs will make along side the surgery.

But it is some why I do it. For the chance to be able to breathe. For the opportunity not to spend my life in hospital. Simply fit the chance to live. Living is one of the biggest life forces your body can attain towards. Each big surgery offers me a chance to get my life back. And that chance is what I have to go for. It's that chance alongside my hopes and dreams fit a future that make the pain and fear worthwhile.

The chance to live, to have a family, be a mum, work and build a career and live a long and healthy life. One not effected by inability to breathe and the exhaustion that comes with your heart trying to keep up.

Now I just need to keep them goals in mind and all will l be well for the next few weeks of living in captivity.

purple

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

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

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

Did I mention that i coloured my hair?

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

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

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

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

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

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

homey home

I have been getting a lot of spam messages on here so unforuntly I have had to turn comment verification on. For now, I have left it so you can still comment without a username, but if leaving a comment do give it a few seconds once you post for the verifaction to appear.

So, I am home. I got home the start of the week. What an eventful week it has been not to mention an eventful hospital stay.

Surgery wasnt without its how hitches. I left the ward at 2 and didnt return nearly 10.
The plan was to plant the cartiledge that they took from my chest and put it in my arm. Turns out, after a lot of digging around, they were unable to find an adequate artery in my arm to connect to the cartiledge. So despite my wrist now having being rather bruised and stitched from them digging around, it served no purpose to the surgery. They had to find another area to place the cartilege, so that is now in the top of my left leg. They took 3 large piece apprently and I have 2 sets of insicsions on my leg.

And last but not least I have an inscsion on my chest, just under my boob. The chest one always turns out to be the most painful, but then, they do dig around a fair bit from the one area.

From waking in recovery, the chest area was painful. I was written up for 20mg morphine IV, but we went right through that with my pain levels still way above control and my heart suffering for it. We added IV tramadol to the mix, which I have never had before, but it made little differnce. The anaesthetist in the end came and gave me a large dose of Ketamine with a top up pain button of fentanyl. He was a nice guy and joked that for most patients, with what I had had, he would be scrapping them off the roof as they would be so high. Yet, I was having regular conversation with him. Eventually got to the ward and after some minor hicups like flooding the bathroom (oops) managed some sleep.

There are a new team of ENT docs on, none of which seem to be very wise. They pretty much wanted me to go home the next day, so they said they were stopping all my pain meds and would begin the works for sending me home. I pretty much lost it at the point, given that I was still in agony and feeling rather rough. My nurse for the day had already commented about how crap I looked and so after she shouted at them, I eventually got to see the pain team and a plan sorted. I had regular Ketamine addded to my list as well as the fentanyl pump and over the next couple of days, slowly began the process of moving about and keeping things like my lungs functioning.

At the weekend, I had another fight regarding pain meds, which left me going from major pain relief to nothing, for almost 14 hours. During which time, I also broke my expensive tablet, that I was using to keep me sane with entertainment. But eventually, monday night, things were in control enough to manage, and I arrived home.

Since then, pain has still been a big issue. Mainly still in my ribs, but also in the base of my lungs. Things didnt feel right and so I ended up first at the walk in centre, then in resus in A&E. I had a suspected lung collapse or blot clot. x-ray had a more shadowed area on it than is normal for me. Blood were eventually taken, though it was difficult as my veins are still sulky. They came back clear for infection. Arterial gases were obtained, that showed that I was hypoxic (lacking oxygen) And urgent CT scan was ordered, but I needed IV access that no one in the A&E had been able to achieve. Anaesthetics were called and eventually we managed to get a line in. CT was performed, but showed no major clot or collapse. The first doctor had said she wanted me to stay the night anyway as I needed oxygen. They decided to keep me in overnight for observation and further tests, though the second doc, decided to ignore the results and not use oxygen.

The next day, I had been transfered an othorpedics ward, and I was eventually review by a gastro doc. Which seemed a bit odd to me, espically given that my complaint was in relation to the chest. anyway, despite my bloods saying that I didnt have an infection, they decided that was the cause of my pain and I was discharged with a set of antibiotics.

Things havnt really changed. I look so pale and ill and still feel rather crap, not to mention sleeping so much when I can get comfortable.

Things are pretty bleak at the minute and I spend a lot of time juggling pain meds, to keep things moving. Even on my max dose though, a coughing fit leaves me clutching my chest in tears. my boob closest to the surgery is also throwing a tantrum and adding in lots of nasty side effects.

And that is basically where things are at right now. It feels harder to hold on to good, and the pain is wearing me down hard. I know it will get better, it just needs time. But that of course is always easy to say.

Plus, I am kinda hoping that it isnt infection in my chest, although that was the less of the 3 possible evils. The reason being, that if there is a darker area on my xray, that is different from previous xrays which is what the doc said, then this will mean that my lungs are deteriorating. Not a good sign really.

Anyway, time for sleep. Seeing as last night I slept for 14 hours solid oops. (and given the fact that I cant spell hours or solid)

Busy

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Hope

Another quick one unfortunly/hopefully. I have to be up at 5 am and the only reason I am writing now is because I am running treatments before bed. Plus I have a migraine so more reason to sleep.

I was a little delayed getting out of hospital. By little I mean I mean about a day and half. I felt like crap the day I was supposed to come home and though I knew I could make it home and then sleep, pharmacy messed my prescription up. So by the time that came, I was a little wound up, it was getting dark and I was tired.

Actually, at one point I did leave the ward for an hour to hide and wrote a kinda depressive entry on my phone. I will see if I can get it to post in a bit. Things were just winding me up. I was in with a person who has a similer issue as me, but with a better outlook. She was last in hospital 3 months ago. And well, as this is public I wont write much, but you know how you can try so hard to keep your health going and then other people who are polar oppossites end  up just irritating you. Well yeh.

So anyway, I stayed an extra night to refresh and such, but that of course meant less time sorting things once I was home for going away. So I am a little stressed out right now and kinda functioning on auto pilot. Hoping that the time away with plenty of rest will do me good. Though still feeling a little ill, but I have paid a lot of travel insurance.

So whats next. Well, on an up note, my surgeon and I have made a new plan and I am fairly hopeful for it.

About 2 years ago one of the first operations my surgeon performed on me, was called a tracheal resection. Bascially what they do for the resection, is they take a piece of cartilage from between your rib bones and shape it. They then insert this into the trachea to open up the airway more and cover it in skin grafts. Right now, that bit of cartilage is still in my airway and doing a ok job.

Now the problem is, if you feel between your rib bones there really isnt much cartilage there. It is very painful to take and has a purpose of allowing your rib cage to move. This means they can not take too much of it. This is were the complex bit is going to come in this time.

The plan is, to take the cartilage  as much as he thinks he can safely get away with. He is then going to bury it into my my left arm and attach it to a blood supply. The hope of this, is that once the cartilege is in my arm, it is safe from infection, but it will have room to grow bigger, allowing him to open my trachea up more. Its complex. It obviously involves multiple areas of surgery and a heck of a lot of pain. But pain can be managed and hopefully, with the extra cartilage  my airway can be better supported and I can breathe and talk again.

Thats the plan anyway. I am not sure how long my arm will need to house the cartillege, but hopfully it will go in to place at the start of December. That gives me time to do my 2 holidays.

And it is of course hope. I may just get through this and if not, perhaps it will buy me a little more time until transplant becomes an option.

Its big, im not saying it not, but it is worth the shot.

I dont think I will ever be able to express my full gratitude to the team in charing cross. From the surgeons, to the anesthtics the nurses, the assistants. They all keep me strong. And I have confided a lot in them this week. This week was a tough one. I was honest about a lot of things with some of the staff, before I dont think they realised where things were heading. There are some staff that go way beyong there duty, be mugs of hot chocolate at midnight, hugs when you look down or even a text. On one of my rough days, one of the nurses had exchanged phone numbers with me, I often talk to her and visit the ward to see her if I am in clinic. She told me that her and some of the other staff were always blown away by my bravery on the ward. How I face everything head on, make the most of it and manage my symptoms the best I can. It probably sounds cheesy and silly, but right that night, it was what I needed to hear. It helped me face the long night ahead. As I say, I dont think I will ever be able to fully tell the staff how much they have all meant to me.

So a plan is in place.
Things feel good at the moment.
I am looking forward to some time away from everything.
And to add to boot, mum finished chemo last week and today she got the all clear from her bone scans as there had been a worry that she had some secondaries. But its all good.

And for now, see you next week.

London

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

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

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

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

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

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

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

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

gotta give

Something has to give, something has to change. And it has to change soon.

My last post made little sense. And this post is even harder.

Everyday my breathing seems to be getting tighter. Where at one point, I used to feel breathless, now, I feel the trapped, I feel it trying to get out, i feel it stuck. My body crying, screaming for oxygen, my lungs pumping it and my throat unable to keep up. The pressure builds, the effort increases, things go fuzzy.

I know I complain lots about sleeping too much, but this is beyond anything I have had before. I can barley keep my eyes open. Long sleep, unable to wake. Inability to read anything as my eyes keep going crossed trying to stay open. Right now, I type with my eyes shut, jerking awake suddenly every sentence or so.

But sleep is not as easy as it seems either. Everytime I sleep, I drift off, begin to relax, begin to rest, before suddenly being ripped back into reality my lungs once again complaining, forcing the air through the smallest of gaps. Shift my tube, make the gap slightly bigger and I can sleep again. Sleep until the next time. Hourly on average. Right through the nights.

When moving my tube brings me to tears, then I no know it is time to top up the painkillers. I hate them too. Yes they make you more sleepy, but the pain is extrodanariy. Like somebody has a knife to my throat. The slightest movement.

A world of painkillers and sleep. But its not enough, its not comforting. What if's play through my mind.

So many symptoms. Shake head rapidly to force eyes to focus. Everything a struggle. Conversation, impossible, movement exhausting. I walked 15 steps earlier, from kitchen to living room. Over 5 minutes to get my breathe back and another 20 mins to get the energy. Cant be bothered with food, to much effort.

Sleep calls once again, only had 19 hours to day.

I need help. I know I need help. Beyond anything I have done before. Is this what dying feels like? Is this what the end will eventually be like? Pity from people. Doctors, giving you everything you ask for. Parents making you sit still. Looks of concern. Skin so pale.

I need that help and I need it soon. I need it tomorrow, not later. But off who.
Main surgeon says nothing he can do, says speak to home team. Home team say, nothing they can do, speak to main surgeon. Like a child, go ask your mum, go ask your dad. I dont have the energy to play, I dont have the ability to be elquont. I have reached out, I have asked for help. I have hanfef control over.

Time to drift off into nothingness. Tomorrow will see a change one way other. Tomorrow help will come.
I hope it does anyway, this is getting beyond my ability to handle small quantaties of fear.

Tomorrow or bust!
Something has to give.
Giving into inability to see.
Cant make out letters.
So good night.
And thank you.
some rest please now.

nonsense.

I have been staring at the screen once again for the last 20 minutes, contemplating what to write.
How to up date, how to sumerise where I am up to.
But in truth, right now I dont know where I am.

What I do know, is that its  not even 10pm here and I am tucked up in bed. I have not been dressed all day and yet I feel worn out.

My last addmission showed me a lot. Where I thought I had strength, I dont. I lack the ability to stick up for myself and that leaves me unable to fight in the areas I need most right now.

Right now, I need to cling to people, I need people around me, to tell me things will be alright, to see through the facade and know that perhaps the unspoken is bigger than first thought.

Right now, each day is a battle. Although I am out of hospital at the minute, my health is still not complient.

In round up, I went to clinic last week struggling to breathe. Clinic addmitted me as they didnt know if it was infection in my throat or scar tissue. If it is infection, that is easy to clear with meds. If it is scar tissue, that becomes more complicated as it means that it will keep building and keep needing to be removed, until a point is reached when we cant keep up with removing it. Then things get more complex.

After a week of meds, the conclusion was drawn that, it is infection, but the infection is building up as I can not get the breathe to clear it due to the scar tissue. The scar tissue was removed and I was allowed to go home.

Upon getting home, I developed this extreme anxiety, that had no known cause. I was still on my pain meds and struggling to keep my eyes open, yet, I didnt want to go to sleep, I was to scared to sleep. I stayed awake until about 2am, but did eventually drift off despite my best efforts to stay awake.

That night, every half hour, I would wake, gasping for breathe, barley able to get the oxygen flowing through my lungs. I kept having to change position in hopes that my airway would give me some free flow. I gave up at 7am and got up.

Later that date, I had clinic with my chest consultant. He isnt happy with my chest or how much I am suffering with it. He basically said, you have 3 big seperate problems, but put the 3 together and you are in a right mess. Crappy lungs, immunsupressed  and a disagreeing trachea.

He wants to admit me. He wants to blast my lungs with some more drugs, get some physio input and monitor me a little more. He said he cant touch the trachea area, but wants to work as best as he can with it as he can see how much it is tiring me.

So I had to agree to be admitted for some more IVs, which I am now waiting for. I also need to keep my surgeon updated on how things are. The good news with this, is that my chest guy has agreed finally to have a port fitted in my chest. This is such a weight off my mind. Right now, IV meds have to be put through a needle fitted in my arms or legs. The needles are very difficult to be put in me now and most I have to wait for anestists to come fit them. Having a port, will mean no more needles, it will be mean a safe access point in emergency, it will mean not having to miss med doses when a needle can not be sited. It also means, that eventually I will be able to run the IV meds from home myself, and therefore avoiding hospital addmissions.

Huge step forward.

But right now, I can barley stay awake in the day, yet, unable to sleep of a night as my breathing likes to keep me awake. My lungs feel like they are on fire and I generally feel rough.

Now here is the hopefull part. Over the next week or so, things should improve. With a bit of luck, my throat issues at the minute, will just be swelling, it wont be scar tissue. Antibiotics will clear my lungs out and give me some energy again.

The thing I want to avoid most, is going to London next week. I need my throat to improve, as if i am still struggling I could well end up back in London, which I dont think my mind is up to keeping up with right now.

Half of this dosnt make sense. I have lost my focus writing. I wont delete it right now, this is just the stage of my mind wandering. I will however try to rephrase tomorrow perhaps.

I just need a sign, something to tell me that I dont need to go to London again, as that is my worst thought right now and I would rather stay home and recuperate.

Oh and I am slowly working on catching up with blogs, but I have difficulty keeping my eyes open, and so if your blog has more than 3 lines of text, then it may take me a little while longer.