I’d been having regular checks of the flap (the new roof of my mouth made from shoulder) – they would look at it, feel it for temperature, then use a ‘Doppler’ machine on it, which would amplify the sound of its pulse.

Somewhere over the course of Thursday night the Doppler machine got misplaced. When it was found again on Friday morning, it was no longer registering a pulse and the Doctors were called in. They looked at it, felt it, and decided that it looked healthy and should be fine. So the Doppler machine was abandoned and I was transferred out of ICU (which they had bee threatening for a couple of days) and into the ward.

I didn’t sleep much the night – there was a lady wailing in the bay across from me. I had my flap checked either before I went to sleep or at 2am, I can’t quite remember. All good.

When they woke me up at 6am to check it, something felt different. There were these bits at the back which felt really soft and squishy. The nurse looked a little alarmed but said nothing.

It was at handover that he said something (8am) and my Doctors were once again called in.

The verdict was that the flap was dying and we had to save it. This was a Saturday. My main surgeon was on holiday, but the rest of my team hustled from whatever they had planned on that Saturday and before long I was meeting them in the anaesthetic room in their fetching maroon scrubs. Thank you all for giving up your Saturdays for me. I suppose it’s always a risk when you’re doing such important work. Gosh, what if you were hungover! Maybe these people don’t get hungover.

I hadn’t enjoyed anaesthetic the first time at all, but I had at least had a really nice experience going in to it. That wasn’t the case this time. For a start, I think we were all in a hurry to get the surgery underway. Unfortunately my cannula had come out of my hand as I washed myself before surgery, which left the anaesthetists needing to find a new vein to use. My veins were being as difficult and as painful as usual, and they just kept poking and poking. As was the case very often while I had my tracheostomy, I was also having coughing fits, which they interpreted as me panicking, and they were trying to tell me to calm down, which wasn’t helpful (this sort of thing happened a lot – coughs don’t sound like coughs with a trachy in, and I couldn’t talk to anyone to explain).

So they sedated me, which I hate. So I was coughing, feeling drugged and dopey, and in pain from their needling attempts. Never had I been stressed or anxious though so I’m not sure what this was meant to achieve. Then someone decided to try and numb my hand and without asking or warning me, they sprayed this ridiculously cold stuff on my hand which felt like it was burning me. I was screaming in pain, though lucky for them I wasn’t actually making any noise. Amidst the pain in my hand, someone must have shoved a needle in and anaesthetised me because the last thing I remember was feeling drugged and being in excruciating pain. I guess the ‘numbing’ did the trick, if only to at act as a type of pain diversion.

My dad describes my first surgery as the second longest day of his life, and the second surgery as the longest. They had said probably a 3-5 hour surgery (time depending on what they found to be the problem). It was midday when I went in. My parents had been staying with a friend in Surrey, so they decided to hang about in the city during the day to wait for the surgery to be over, and to be with me when I woke up. 4 hours passed, 5, 6, 7… they were sitting in the pub trying to have some dinner and had heard nothing… At about 10pm they got told the surgery was over and I was out.

They found out that a clot had formed in the blood supply taken from my shoulder and put in my neck, and they had to go into my leg to get a new one and bypass the original one in my neck, hopefully getting a blood supply to the bone and tissue before it was too late. This sort of fail usually happens within 48 hours, not 5 days. They didn’t know why it had gone that way with me, but they hadn’t seen it happen so late before.

Waking up from this surgery, I was a lot more alert. I don’t know if that was because it was a bit of a shorter surgery or what. But I came to, and heard people talking, and with my most recent memory of having been in so much pain and sedated, I made sure I lay still and pretended I wasn’t awake. I didn’t want the torture people to know I had woken up because otherwise they might start torturing me again.

Then I heard my mum’s voice and called out to her. I figured if I could only get to her then it would be ok. She would save me from the bad people. So I shouted and shouted but nothing came out – what else had these people done to me?! I don’t know how but suddenly mum was next to the bed. My eyes were glued together, as was standard most mornings for the time I was in hospital, and apparently post surgery too. I managed to pry one open and I saw her and I reached out to hold her hand. It would be ok now. I pleaded with her to stay with me, but of course it was quite late and they had to make sure they didn’t miss the last train back to Surrey. Aah yes. That brought me back to reality a bit more, and I understood that I was in hospital and they had a train to catch. So I told them to make sure they left themselves plenty of time. I think they left soon after that.

In my hindsight mind as I write this now, I went through this all with conversation, but of course I didn’t. When I called out ‘mum’ and suddenly she was there, my mind fills in that I said her name so she came by me, but of course it doesn’t work in that way. I do remember trying to communicate with mum and dad using a laminated sheet of paper which was like computer keyboard, pointing to the letters I wanted to use.

I had quite a sleepless night. I remember lying in this uncomfortable bed with my feet touching the end of it, looking out into a bright light. I remember getting angry at my nurse because I didn’t think she was being very helpful. This time around I was in my own room, and had a nurse posted to stay with me all through the night.