I have been staring at this page for a while now, wondering what to write. Truth is, I am exhausted in all ways that I think I can be exhausted. All the while, still being amazed at the highs and lows in life and how they can all be thrown together to make a big jumble. I prepared myself for the worst, or what I thought would be the worst. And now? I am left with a big jumbled mess that I have no idea where to go to next. I shall explain.
I was due in hospital in London on Monday for the usual laser and dilation, but with the big boss surgeon as the previous surgeon had had some concerns about my airway. Mum was going to come with me so we booked a hotel for the night before as I have to be in the hospital for 7:30. As it turned out, my dad was off work this week so he decided to tag along. So I decided to go a day earlier and meet my friend so I could give her her christmas presents and generally have a catch up.
So I went on Saturday afternoon and after some trouble with traffic and missing my train, I eventually met up with her and did some quick shopping. Then we went out for yummy tea and back to hers for a natter and some wine.
It was good to have a proper conversation. To be social so to speak. In a way its become to easy to just kinda isolate myself, or take bad moods out on others. So we had a drink and ended up going to bed at like 3am.
I had to meet my parents at the station at 12:30 the next day, so I didnt sleep to well, mostly waking a lot thinking that I had overslept. Met them and took them to Camden Market as they had never been and I thought it would be an experience for them. I love Camden, its one of my favorite places in the UK. Mum liked the whole shopping expiernce and seemed to like some of the items there. Pretty much picked up a Pashmina to go with every outfit as she feel in love with the one I got in December. Dad said it was a very weird place, but he seemed to like it, especially the free food samples they all hand out ha.
By Sunday night, I was pretty beat, but we decided to go out for tea, which was fine by me as I knew I wouldnt be eating much the next day. We went to O'neils, and it was yummy, that was in Islington angel. Though, we ended up on the wrong bus home, got lost and had a 20 minute walk back to the hotel.
The hotel itself, is not the nicest of places. Everytime you moved in bed, the springs clunked and the room was pretty cold all night. Had to be up at 6:30 and walked to the hospital. The registrar came and did my consent form and the anestists took all my details. I saw my actual surgeon (big boss guy) for about a minute before I went in and he commented on my stridor (noisey breathing) and made me sit down right away. He seemed pretty concerned at me walking around making so much noise. The anestists had some visiting students in so was explaing a few things to them, which I enjoyed anyway as I am nosey. Basically saying that they would normally do a gas induction, but given my lack of ability to breathe or clear gasses out of my system, that it would have to be done with chemicals until the blockage was clear.
So I was off to sleep no problems, apart from them having to keep me at a 20% angle instead of flat as I could not breathe at all when I went very flat. Now normally, these scopes, I am back on the ward within an hour, this one, I was really groggy coming around from and I didnt get back on the ward till about 2:30 hours. I kinda fitfully napped for a while. Its strange as last year when all this was going on, I used to come around in the recovery room and be having full conversations with the staff, yet now, it seems to take me hours to come around.
Whenever I came around on the ward, I kept asking for painkillers as my throat was so so sore. She kept saying I will get you some written up now. I also asked several times to go the loo, in the end, I got fed up asking, I clamped my own drip off, got changed under the covers into my PJs and was just about to waddle off down the ward when my parents came in. Mum exclaimed that I looked crap and should sit down, but I went the loo anyway.
I spoke to mum and dad a little bit, told them I didnt have much info, but I remember my surgeon, saying he would come talk to me properly when I was awake more. By this point, I was allowed to drink and again asked for painkillers, to which I was told, we are waiting for them to be written up.
Mum and Dad decided to stay with me incase the surgeon came, as I am rubbish at remember things at the best of times, never mind post surgery. About 2pm one of the registrars came up to talk to me. He told me everything had gone fine and there was nothing to worry about. He mentioned that there was still tissue there that shouldnt be, but it will eventually settle. I asked if I would get to see my surgeon, and he said he wasnt sure as the surgeon was really busy.
I was at last bought some painkillers after asking the doc for some, only 5 hours after asking. Managed some food and dozed for a little bit. I dont know what it was, weather it was a flashback or something, but the ward was so very very hot, the sweat was dripping off me. I remember waking, being in pain and dripping wet. Mum and dad sitting next to my bed watching me. I couldnt really piece it together, just kinda kept drifting in and out of sleep for what seemed like hours, but was only a short time in reality.
A nurse, when she gave me my painkillers, had finally detached my drip, that had been hanging empty for hours, but just dropped the tubing on the floor. It was annoying me, so I tied it up where it was meant to go, waiting for her to come back and dispose of it.
She then came back to tell me that I was written up for some IV antibioitcs so I would be staying in for a couple of days. A while later, she came back with my IV meds and starts putting it through, it hurt and burnt like hell. I have had a lot of IVs in the past some of which I have reacted to, but none of them have ever been this painful. I told her it was burning, she just said, yeah, its a strong med, Mum even looked concerned. I was squeezing a pillow as tight as I could trying not to scream out, trying to tell her that it was hurting far to much, I did in the end burst out crying and literally screaming, while all the other patients sat and stared at me. My arm turned bright red, she still didnt stop, just pushed it through quicker.
My wrist started to blister, so the nurse decided to rub it vigorously to get the blood flowing. Now even I know, you dont rub blisters, especially in hands that are not even wearing gloves, so I asked her to stop, then told her to stop, then put my hand over the area so she couldnt, seeing as she wasnt listening. She then sent for a bag of saline to flush it through my veins. As she gets the bag, she gets hold of the wire, that she left on the floor earlier and goes to connect it though an IV. Now bear in mind, that even if this wire had not been on the floor, it would have been uncapped for hours in a hospital environment. I told her to stop again. She said its fine, I said its not and covered my wrist until a clean set was set up.
This was my wrist about an hour after she finished messing. The blisters have mostly gone, but you can still see a big one under the tape where it goes white in the middle of the red.
Well eventually, my Surgeon came on the ward and came over to talk to me. At first he seemed to be saying the same thing, everything looked ok, just the scar tissue, so I asked him straight out, will the scar tissue ever stop forming, I mean we are at nearly 6 months post op now and things dont feel like they are getting any better. He said, that there are no predicted out comes, that it was the first time my op had been carried out. I had two type of reconstruction. The big one, where they take your rib cartilage and open part of your trachea, and another one, where they cut out a big chunk of trachea and stitched the 2 ends left together. As the two ends have been stretched, some narrowing is normal, and the two different sites will take a while to heal. That being said, he would have expected them to have healed by now, and yet my trachea was still not healed. He hopes that my body is just being slow with it having all the other things going on with it.
He then asked me what life was like in between the surgeries, did I find they helped. I explained that the 2 days following are hard work as there is swelling and crap on my chest plus the post anesthetic thing, but after that, things kinda settled back to the way they were before the op, but gradually getting worse the more I tried to do, when I have to increase my nebulizers and rest more, but that dosnt seem to help much either.
He then gave me that look. That look that says, I dont want to tell you this but I think I have to. He said that he thinks now, that my breathing problem is in relation to the vocal cords, that they are stiff and not letting air through the way they should. I asked the dreaded question of where do we go from here. He said, we can try taking a chunk out of the vocal cords and see if you can breathe. I said, if you are taking some out of the vocal cords, will I lose my voice. He said it is a possibility, I may just lose some of my voice, or it may just break at even lower tones than it already does.
He said he would discusse it more with me next time he sees me, he then asked the registrar to book me back in, the reg said I have booked her in for 2 months, and he said oh no, thats far too long, make it a month, but Kim, if you are struggling, get in touch and we will fit you in sooner, we can get you in same day if needed.
I was holding things in at that point, dreading looking at mums face to know all this. I asked him when I could go home, and he said in a couple of days, I looked pleadingly at him and asked if it could be made sooner, he said, ok I will compromise, you can go tomorrow morning. I then asked if it would be possible to go that night. I said it would be safer. If I went the next day, I would have to travel alone, but if I went that night, my dad was off work and could keep an eye on me and such and I do live right opposite a hospital. He said that he wanted me on IV meds, and I showed him my wrist and reaction to the meds, so he said I could switch to oral meds and agreed to let me go.
So that is what this whole thing is going to come down to. What is more important? being able to talk? or being able to move and breathe at the same time? But I am gready and want both. And the pioneering surgery I thought might one day help, the prospect of a tracheal transplant, that is out of the question again now. The transplant does not involve the vocal cords and so I would not be eligble now that it is glottic as well as sub glottic stenosis.
I tried talking a little to my parents later on, but they said they didnt hear much, so I explained bits and I have explained a bit more today. Mum looks at me with that look of sorrow. I can read it in her face. My mind reels back to suicide, if I had succeed last time, I wouldnt be going through this now and I wouldnt have put my parents through everything. I know that mum in the past has worried that they made the wrong descion saying yes to transplant and I think now she feels it even more. That perhaps, sometimes you can be beyond saving. I hate that she has this guilt, but on the same account, I dream of the peace that the end brings. I dont know how much longer I can continue to fight this. To make life changing descsions.
To my parents as well, I can see them age virtually daily.
And they have so much more to come.