Hi! I know we’re in the middle of October now, well actually near the end, but I thought I’d complete the “6 years continued” story. To be honest there’s not much more to say, but I’ll tell you what happened the days leading up to me being discharged and what happened after I was discharged. (If you need a reminder of what’s happened up to this point, please check out my previous blog posts with “6 years continued” in the title)
As well as this, I will be updating you on recent events in my life. Quite significant things. To me anyway.
So, last time I mentioned the x-ray I had, the conclusion the doctors came to from seeing my notes, and briefly mentioned the picc line I had inserted.
Because, by that point, I could hardly eat anything – my new consultant believed a picc line would be most useful for me to have. If you don’t know what a picc line is, it’s basically a long tube that goes through a vein in, normally, your arm, to your heart. Or near your heart. It is a form of nutrition. But obviously, only used when people are seriously unwell.
Having this meant I didn’t have to worry about the fact I couldn’t eat and so was loosing a lot of weight and nutrients. This would help build me up whilst I was in hospital. At this stage I also had an NG tube (a tube that goes up my nose and down into my stomach). Gradually, I started having tube feeds. So a milk-like substance with all the nutrients and vitamins I needed was pumped into my stomach without me having to do anything. Little did I know, this was to become a regular routine of mine. I was at Kings for about 2 or 3 weeks (I can’t remember exactly)
During the last week or so I was just resting really. Understandably I had to, but it was hard because I was away from home. Yes, I had my dad with me. But my mum and brother wasn’t with me. They visited a few times, don’t get me wrong, but it wasn’t the same. I missed Home. I missed my friends. I even missed school.
The time came when my consultant was happy for me to be discharged, from King’s at least. He told us that they do need to operate however I still need to become a bit stronger, so he advised me to keep the picc line and NG tube.
I was then transferred from King’s to my local hospital. I stayed there for a couple of weeks. (I think, it might have been a bit longer) During this time I rested, had my picc line flushed every so often and began having regular tube feeds. And because I was now only about 10/15 minutes away from home, I was able to have many visitors. And Dad was able to go home and have a proper rest (because it was a tiring, stressful time for him too).
It was nice, in a way, but it wasn’t my proper home. I wanted my own bed. I wanted normality. I think at this point, I started to wonder, will ever have normality again?
Eventually I was aloud home for day visits. Haha, sounds like it was prison or something. The reason for this, is because I was having my ‘feeds’ at night. And so, during the day, I was free to do whatever. There was nothing for anyone to do to me during the day. So they decided that I could spend my days at home. And they eventually even said I could go back to school (which, by this point, I was thrilled about!)
I was quite fortunate that my school was sooo understanding and supportive. Me, Dad and mum went for a meeting with the assistant head at the time. We explained what had happened and what is planned to happen. Obviously, I had my tube in, on show, too and they took this into consideration, understanding that ideally I couldn’t be in the busy school corridors at break/lunch times and during lesson changes. They decided that I would be best going to a room called ‘AP’ (Alternative Provision – I think). It’s a room where I could do my lessons, have a teacher come down every so often to talk to me and give me some work to do. That sort of thing. They also decided I should be on short days. So i’d only be in for a few hours a day. This way I wouldn’t tire myself out too much.
So a regular day for me during that time, would be that I would wake up in hospital. I’d get up, be disconnected, go have a wash, get ready etc. Then mum would pick me up and take me to school. I would then stay for a few hours then be picked up and taken home. Then during the evening, I would be taken back to the hospital, get settled in and be connected ready for bed.
Eventually, the staff felt that me and my parents were ready to learn how to set up the pump. You have to be trained up on it. It’s quite simple so me and my parents caught on quite quick. When the staff acknowledged that we all knew what we were doing. We all knew about hygiene etc, I was allowed home permanently! I could have my feed at home. I could sleep in my own bed – yay!
We were all so happy! Finally – after what felt like months and months – normality! To be honest, after this, each day was the same. I’d get up, disconnect myself, get ready, go to school for a few hours and come home. I would then go to bed, in my own bed. That’s it. During my time at school, as well as what I previously said, eventually friends would come in to see me and I would also pluck the courage to go to some of my lessons. I thought – yes I’ve got a tube in my nose, so? It doesn’t bother me anymore. Yes people stared. But I just ignored them. That’s all I could do really.
Anyway, it got to November and, I remember this moment quite well, the post arrived one morning. I had just come back from shopping with a friend. It was addressed to my parents I think. But I knew it was about me, it had Kings college hospital on the envelope. This was it. This was the date of my operation. I opened it. I was right. “Katie has been booked for her operation on Friday 18th January 2013”. I looked at it. I felt a bit of excitement – because I knew that this operation could really help me as I was really ill (although the reality of how ill I was hadn’t hit me properly yet). Then all the nerves came at once. I cried. I was shaking. This felt real. I was having an operation. A big operation. I was going under the knife. I was having my organs moved around. Would I make it? What happens if things go wrong? I was scared. I hugged mum and Dad. Of course, I knew, we all knew, I had to have this surgery. But it’s scary. For all of us, but especially a 15 year old girl with her life ahead of her.
Below is a photo of me with all of my equipment. I think it was taken for an art project. I did a project on medical equipment. I found medical art and that and researched them. I drew a copy of this photo. (I thought it was interesting at the time) Sorry, I look a bit miserable – I don’t know why haha😂
Okay so, nicer things now! I also said in this blog I will mention what I’ve been up to recently. You’ve probably noticed in a couple of my posts, that I’ve mentioned that I’ve struggled with anxiety and depression a bit in the past. I have good and bad days – physically and mentally! However recently, in both ways, I’ve been having many good days. I’ve been feeling positive, confident and quite motivated actually. I’ve challenged myself and taken on things that I would normally hesitate at and avoid.
These things include; going to a job interview and starting driving lessons! It may seem like normal things to many people – but to me. That’s two massive achievements!
Another thing, which I have surprised myself with – is that I’ve started taking up baking as a hobby!
Now, you will find out in detail why I, and my family are quite surprised by this, in future posts but let’s just say, my relationship with food has never been good. I’ve had times in my life when I can’t even be around food. But you’ll find out all about that in due time. So, yeah I absolutely love baking! It makes me happy and it’s a way that helps me show my creative trait.
That is all for now. Sorry it’s been so long! X