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.