On the first night after surgery I was woken up regularly by the nurse for neurological checks, she became increasingly concerned with my breathing as it had become laboured and shallow. The nurse called the doctor, who, after observing me from the foot of my bed, told her just to continue monitoring me overnight.   She gave me an oxygen mask which I kept lifting off and resting on the bridge of my nose much to her annoyance! As the night went on my breathing deteriorated a little more and I began panicking because I couldn’t breathe but that was only making the situation worse, so the nurse sat by my bed and kept offering reassurances and calmed me down, I drifted in and out of sleep until morning.

In my previous blog I mentioned I felt remarkably well after I came round from surgery, well that initial feeling was rapidly disappearing, I felt awful, I was struggling to breathe, I was throwing up and the pain in my head was sheer agony.

On the morning after surgery I started choking on my own saliva, I couldn’t cough to clear my throat as I had no coughing reflex and I couldn’t swallow as the nerves that controlled these actions were in ‘trauma’ from the surgery*, and I remember feeling an overwhelming sense of panic and dread as I couldn’t see the nurses and I wasn’t able to shout out for help.  There was a young guy in the bed diagonally across from me, who thankfully saw my distress and struggle and called out for a nurse, the nurse called my name asking if I was okay, that is when I realised the nurse was only a few feet away from me attending to the patient in the bed next to me with the curtains shut, but I still couldn’t talk as I struggled to clear my throat and breathe. She came out to check on me and ran to my side, I can’t remember what advice she gave or if she intervened with some action but I was sick which helped clear my airways. It may sound melodramatic now as I type this, but it was a frightening experience and one I will never forget and still fear today, I had the horrific thought I was going to choke to death. Sadly, it wasn’t a one-off incident, this continued to occur over the next couple of days and was often resolved by my being sick.

* the area of the brain that is responsible for initiating reflexes for swallowing and coughing and is also responsible for regulating breathing is the medulla oblongata, the lower part of the brainstem, which is where my cyst had been, which explains the ‘trauma’ to the nerves housed in that area and also why I was having difficulty with my swallowing and breathing.

Later on that morning the nurses gave me a bed bath, I felt an overwhelming sense of helplessness, vulnerability and embarrassment (in my previous blog I had hinted at what could be more embarrassing than going to hospital with hairy legs…well this was just one of many of those things). However, the nurses’ sensitivity and attentiveness helped to relieve some of my feelings.

During the day I was visited by a speech and language therapist to assess my swallowing. She gave me some water to drink, but I couldn’t take a sip of water without choking, it’s hard to describe not being able to swallow when it’s something we do hundreds of times through the day without really thinking about it. But as I took that sip of water I couldn’t activate the swallowing mechanism, neither could I hold on to the water in my mouth, which resulted in the water trickling down my throat, but without the swallow reflex it caused me to choke (similar to when your food or drink goes down the wrong way).

The speech therapist decided I would need to have a feeding tube for the foreseeable future, I asked what a feeding tube involved and I didn’t like the answer very much, a tube would be fed through my nose in to my stomach! It turns out the procedure wasn’t so bad!

In the afternoon I was moved to another High Dependency Unit (HDU) on the ward, this one only required one nurse to stay in it at all times and had three beds.

When Lindsay came to visit me I was still upset by my breathing and choking incidents, and unbeknown to me at that time, Lindsay has since told me that when I was relaying the incident to her I had said to her I wish I had died. I have no recollection of saying that to her and I can’t remember feeling like that, but it saddens me to think she was staying over in Edinburgh on her own and had the burden of hearing those words.

I asked Lindsay to ask the nurse for a buzzer/call button as I had a fear of choking again, the nurse tried to explain that she would always be there as the HDU could never be left unattended, but nothing would relieve my fears because the nurse had only been a few feet away on the previous occasion but I had been unable to get her attention, and so Lindsay convinced them to let me have a buzzer. When she rang the HDU that night at about ten (she did every night) to see if I was settled she checked to make sure I had my buzzer! I slept with the buzzer in my hand all night!

During the night I began choking again and the nurse gave me suction to clear my throat, by the following night I was able to use the suction tube myself which gave me a wee sense of control over the choking fear. Over the next few days I was choking less but the fear of choking to death remained, and still does to this day.

The speech therapist continued to visit, but as I was still unable to swallow sips of water she tried a thicker consistency…cold custard! I detest custard, and cold custard is just the produce of the devil! It amused Lindsay no end that I was being spoon-fed cold custard! But despite the thicker consistency I was still unable to swallow (although I’m not sure if that was down to an impaired swallow reflex or I hated the cold custard!) so I had to continue with the feeding tube for my medication, fluids and food.