And so it was that two weeks and one day after the first of my major surgeries, I was allowed to go home.
And you know what? It was hard work. Really hard work. It was such a relief, and I was finally able to relax for the first time in 2 weeks, and it was amazing being in my own home. No more being woken up every few hours for observations. No more being poked every day with needles for blood tests. No more feeding tube. No more doctor visits… The list goes on.
But being home also meant no more morphine or sleeping tablets, and it also meant managing all of my thousands of other medications all by myself. Thankfully Dad stepped up and took over the role of Mr Medicine man.
The other big thing was that I now had to work out what to eat. The feeding tube really got to me, I hated it and I hated the way the feed made me feel so I was so glad it was gone. And I wanted to taste actual food! But this of course meant I was going to have to work really hard on fuelling my body enough for it to be able to keep healing itself.
I had no use of/access to my top lip which meant having anything with a spoon was pretty difficult – no way to scoop anything off the spoon. I could flip the spoon upside down but anything runny like yoghurt would fall off before I could get it in my mouth.
I could really only do drinkable food, like smoothies, juices and soup. Pureed food was just too thick and dry and difficult.
I had regressed to a baby. I was having liquid food, half of it ended up down my front, I couldn’t do anything for myself, I couldn’t sleep through the night, I even had a 0-2 year old toothbrush. But I could at least drink beer, thank goodness!
By the second day we started getting things under control. Smoothies for breakfast, Heinz tomato soup for lunch, Sainsburys soups for dinner. Snacks in between consisted of custard, yoghurt blended with milk (to make it thin enough to drink) and added milk powder to bulk up the goodness.
I also had supplement drinks that they gave me at the hospital to take home with me. ‘Ensure’ they were called. Chocolate and vanilla ones. The chocolate one tasted really good, like a milkshake. But it was so thick and almost greasy, not to mention ridiculously sweet. There was no way I could get through 3 of them a day. The vanilla one just tasted gross. Mum managed to get me to have half of one a day by blending the choc one with ice cream, milk and plain yoghurt, and the vanilla one with raspberries.
I knew once I got home I’d be able to manage my food fine (with mum’s help of course). I would have struggled in hospital if Deepti hadn’t let me leave that day. The logical next step for the nutritionists was to get me onto purée food, as that’s what is on the menu at the hospital. But that wouldn’t have worked for me at all. For one of the few meals I had there I ordered a pureed meal, with soup and yoghurt. All they brought me was the puree meal I couldn’t eat and left out the two parts I could. I would have started losing weight rapidly if I had stayed much longer. If we had waited for the nutritionists to assess me, I’m sure they wouldn’t have been happy. And I bet I would have gone home with a feeding tube I didn’t actually need. That would have slowed my progress for sure.
This bold move by Deepti, and her trust in me to manage this myself saved me. I would have dealt with going home with the feeding tube but it would have got me down and slowed my progress. Do I need to say it again? She is great. I appreciate her so much.
As it is, I have pretty much kept a stable weight since I left hospital, so I think we’ve been successful.