Rocking out

I was so exhausted last night on the train, That I propped myself up on two chairs, headphones in and ipod on full blast. I lost myself in the music and for a while everything felt normal. Do you ever get totally addicted to one song? You cant get enough of it and you have it on repeat all the time. Of course the addiction only ever lasts about 2 weeks and then you dont listen to it again for months. Well, I got totally hooked onto this song.


(everytime, I put the youtube link in, blogger eats the rest of my post, so anyway, the song is Meredith Brooks - I'm a bitch)

Well, I had the volume and the base right up, eyes closed and suddenly I was rocking out on my ipod. Yeh, total movements playing air guitar on my ipod, pretending to scream the lyrics out as loud as I could. The song came to an end and as I opened my eyes to put the song back on and noticed the guy from the table up the train a bit stifling a laugh. oops I kinda hung me head in shame for a minute and when I looked up he was just grinning at me. I didnt get overly embarrassed or avoid all eye contact, I just shrugged and smiled back. That was the end of our silent exchanged, but its moments like these that I feel I live for now. The random encounters, be it an exchange of a smile, some knida words, a note left on someones blog or a card in the post. Little things, things that make a huge huge difference. I think I went through a lot of the last few years not taking any of these things in. I hope to never overlook the little things again. 

So from the above, you can gather that I got the train home last night, meaning that I didnt get kept in. Well that is kinda a close call. I was called into one of my surgeons registeras, whom I have never met again, walked in and he had been reading my notes, checked some dates with me, when I had my open, when I got rid of my trach and my last surgery and he just looked at me and said, and now your back unable to breathe again. I was surprised that he could tell, as I said, although it has felt bad at times, I dont think that I am struggling with it as much as last time. But he said he could hear it a mile off, as did my mum when I asked her to confirm it, she said I sounded awful. Its funny what your body ignores sometimes. 

So on that note he asked my surgeon to come in and suggest the next step. Surgeon said again that he didnt need to look he could hear it. He then said, you know the drill, we need to admit you and get you to theatre in the next couple of days. He glanced at the theatre list and said it seemed pretty booked up, so I would probably need to wait for an emergency slot. I mentioned that I had also been sent for to the other London hospital for an admission for Monday. He checked and said he would rather I was seen at that hospital and that I had a theatre slot already booked there. So after some discussion, he agreed to discharge me on some strong steroids to come in for the admission on Monday. With the usual precautions, should an emergency arise, go to your local hospital and get them in contact with us and we will advise them on the best ways to get you down here. With the added bit in, that I could probably always be tubed (as in a breathing tube put down my throat) and shipped off to London if needs arose.

So yep that is the plan. Keep up with the steroids, cough medicine and regular nebs and back down to London for a 7:30 addmission Monday morning. Fun eh. Not liking the steroid bit, still being cautious after the whole cushings thing last year. But what is more, last year, I was on prednisone, which is a common steroid and it was between once a day and twice a day when things got bad. Now though, they have me on dexamethasone, which is basically 20-25 times stronger and last longer and I am to take it three times a day. gah. I know they say its only short term, but if I carry on at this rate, its like a week of steroids every 3 weeks, which I am sure can not be good. Steroids generally age your body quicker, so a lot of the things I am already at a high rish of like bone trouble, cancer and diabettes, is basically increased even more when I am on steroids. Not to mention they mess with your appetite and fuck with your sleep pattern. But I know, I know, all those are better than not breathing. 

So time to find some train tickets. So far, I have found that I can get a 5am train, which will get me to the hospital at about 8:15, though the admission letter says 7:30 and cost about £85 or I can travel on the Sunday for about £45 and maybe ask the hospital if they can have me a day early or something. I know they said I could last time because of the travel. Descsions descions. 

The surgeon is still standing by the whole this is relatively normal, though it dosnt usually happen in this short a space of time of this frequency. I of course have built up my own views on it. I am worried that too much lazer is going to kill the tissue again and make it weak, I am also concerned that I didnt really that much relief off the last laser. But then I have said from the start, that my gut instinct tells me that it hadnt worked properly.  Of course I am remaining positive about the whole thing, after all I am trach free, but those little niggles still sit in the back of my mind.

two steps forward, one step back.

Or is that one step forward and two back. *shrugs*

So, im beginning to get a little bit excited at the prospect of Monday. Tickets are booked. Train leaves town at 9:48am and gets into London at 12. (cost bloody £52 each though stupid train) Then coming back we leave london (Euston. Never been that station before)  at 9pm and get home at 11:30pm. (that was only £10 for 2 tickets yay)

The appointment is 2:40 I think (need to check that) and the nearest station is kinds cross and then a short walk. hmm what to do with all the other time. Obviously get food, but where. hmm might take my mum to Covent Garden after the appointment to get some tea and a nose around the shops. Ill have to have a think and plan somewhere on route for dinner. eeps I cant wait.

Then comes the descsion. Take my small crappy handheld camera or my big proper camera. I have to take all my meds in there original boxes so I suppose I am going to have to do with a back pack so might as well take my big one. Meds are going to take up enough space, wonder if I can be a real tourist and take my tripod too.

Anyway, thats my positive bit.

So my surgeon said he would send me a copy of the refferal let that he wrote so that I could chase it up. Well, I got this today and me being me, I was egar to open it and read all the gory details. I have this thing when I like to compare to others, suppose its in a way of recognizing that Im not actually lying. I have this huge fear of going to the doctors with something and them telling me I am lying about it and they dont believe me. Even after having a transplant, I was scared my doc wouldnt believe that I had needed it.

So anyway, I was reading it and found it intresting to hear about the different sizes of stenosis I have had and the types of stents they have tried. I was happily reading it until I reached:

This patient has difficult venous access due to server cushings syndrome and obesity.

Ok, so I knew I had bad access asI had to virtually always have hickman or central lines in but was told it was due to my veins being accessed so much that they had collapsed. And of course I knew I was obese. But I had no idea about cushings. Why wasnt it mentioned. I knew the very basics about it, that it causes psych problems and is basically to much cortisol (a steroid) in the blood and that it is a very rare disease.

A quick look on google tells me that it can cause weight gain, tiredness, osteoporosis, and server mood swings that can often present as a nervous breakdown. So is this what is causing my depression? Could this be why I couldnt cope a while back and ended up an a psych ward? Is this why I sleep all the time and have no energy? Could it all be down to this disorder?

So I looked at causes, which kinda unnerved me. The main causes are tumors, either cancerous or begnine, well I know my anti rejection meds can make me more prone to cancers, but I thought the main types where ovarian, cervical and skin, but my mind is in overdrive.

So I go on to read a little more. First they have to find the cause EG: where the tumor is, its most likely on the pitutry gland, which is in your skull. It is often removed, by drilling into your skull through your nose or gums and remove the tumor.It maybe nesscary to have a skin graft after the op. You may also require chemo or radio therapy. Plus you may also need steroids for life.

Tablets for life I can deal with, god knows im on enough of them already. But all the other treatments? Could I really handle them? Would I really need them? The way he wrote server cushings, kinda makes me think that I will need treatment. But I still have to question why I wasnt told about it? And how they found out I have it. The only way I can think of would either be bloods or a 24 hour urine last time I was sedated in ICU.

I dont know, I have so many questions about it and no one I can really ask any time in the immediate future. So my head will just keep exploring the possibilities and looking for correlations.

I just really hope it dosnt interffer with this appointment on Monday. You know, if they turn around and say, oh get that sorted and then come back to us, I'm not sure what I would feel then. Suppose only time will tell.

urgh

I feel like absolute crap today.
Since I woke up I have been achey, headache, tired and nausea's.
Got a horrible feeling this is going to put me back in hospital. Probably something to do with stopping the steroids too quick. I think it was too quick anyway. At the least I have a GP appointment on Friday so hopfully I wont get to bad, and I can always ring the docs if I feel any worse.
I also have new red lines on my stomach. I think they are stretch marks, they kinda look like they have been there a while, but they where not that red last time I looked at them.

I havnt got time to be ill at the moment. I should have been working on my assignment today, but just didnt feel up to it. Have to do it tomorrow night when I get home from college. fun. I dread getting up tomorrow.

Oh and its Peters trial tomorrow. Im not sure what time, but im sure it will be on the news by the evening.