The day my NG tube was removed was memorable. It was removed on 1st January – what a way to start a new year! It also signalled to me that it was the start of something huge. I spent the day in a place I’d never been before. I was filled with a new energy and found myself in a place of contemplation and thought. It was a beautiful sunny day and as I sat in my chair looking across the moors, I looked up at the sky feeling the cold air through my window. I told myself that I would never take the outside for granted ever again. I would spend more time with nature, appreciating my surroundings. I told myself that I would never take water for granted ever again and that when the day came, when I took my first sip, it would be delicious. I told myself that it was time to take care of myself, learn to cook, eat more healthily. Learn to appreciate that life really is too short and that nobody knew when their last breath might be. It was a journey that would change me forever.
2ndJanuary would see another momentous event take place. My consultant team were with me early that morning. They’d had many discussions about me since my swallow test on 31stDecember (it seems that my case was quite unique and rare!) and there were two trains of thought. 1 – the hole in my oesophagus was still there or 2 – it was actually a tiny fistula (a little tube) that had grown whilst the oesophagus was repairing itself taking liquid out of the Oesophagus and back in again. The only sure fire way to tell…was to drink! I was told that I could drink tiny sips of clear liquid. I was petrified, utterly petrified and the team could see the fear on my face. They reassured me and told me that if there were a leak, anything that I drank would go straight into my abdominal drains. I was offered some water – it tasted like nothing I’d had before. I struggled to pick up the cup but when I did I held the water in my mouth but I couldn’t swallow, because I’d forgotten how! It was the strangest feeling but it would be something else that I would need to learn to do. I received a visit from a speech and language therapist and an occupational therapist and after some time and gentle persuasion; my brain remembered what it was doing. I swallowed my first tiny sip of water for the first time in 70 days and it was HEAVEN! I felt the cool water travel all the way down my oesophagus into my stomach. It was emotional! It’s important to remember that because of my Achalasia, I hadn’t been able to eat or drink properly for 3 years before entering the hospital, so this was a monumental moment. After the water I tried sips of black tea (yuk!) and apple juice. Have you ever seen a baby or young child being given a lemon to taste and they screw their face up in the most wincing, amusing way? That was me! Apple juice was sooo sweet and tart. I stuck to water for the rest of the day, writing down each quantity as I went.
Everyday since being on Crownhill, the output of my stoma bags was measured. Early each morning a nurse would empty the liquid contents into a bowl and the smell of chicken gravy filled my nostrils. Obviously it wasn’t chicken gravy but the smell of my insides!!! After I began drinking, I was monitored even more closely but as I was only drinking such tiny amounts, there was little to see. A couple of days later I was asked to start drinking a clear liquid with more colour, so that the team could see the contrast and see if I was still leaking. My drink of choice became Vimto and I had a lovely day taking lots of delicious sips! I began venturing off the ward and my parents took me to the hospital restaurant. My mum showed me the car park she’d used every day when she’d visited, I even saw buses and cars! It was a surreal experience, seeing people eating and seeing normal life happening all around me but it was good because there was hope and the end was in sight.
That night my temperature spiked, again. As a precaution I was told to stop drinking and panic set in. I didn’t sleep at all that night, so worried that my Oesophagus was leaking and that I’d broken my body, again. The next morning, I was up early, before my bags were emptied. I looked down at my bags and they felt heavier than usual, with a tinge of purple. I was convinced that the small amounts of Vimto I’d drunk the day before had gone straight through, which meant there was still a leak. The nurse came to empty my bags and I burst into tears! She asked what was wrong and when I told her, she tried to reassure me. I didn’t want to see the colour but a little later she returned to tell me that in fact the contents were a normal colour. Phew! There was no explanation for the temperature spike (I’d become well known for my unexplained temperature spikes) so I was allowed to begin drinking once again. This rollercoaster of drinking/not drinking, my bloods being good/not good, temperature spikes etc. would continue for a few more days yet………..