Ideas

This is a quick post to ask for suggestions about what you, as a reader, would be interested in reading about on this blog.

Unless something significant happens in my life, I don’t really have much to say currently. I could carry on with my story but the next part is the big chunky bit about the year 2013 when a lot happened with regards to having many many operations and my life changing. But ideally I’d like to start that in January – as that would mark 6 years.

Is there anything you’d like to know about me, anything you think you would be interested in finding out about me and my story? Maybe there’s some advice you think I could give?

Let me know by commenting on this or, as I will be sharing on social media, on any of my social media platforms.

Thank you,

Katie x

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6 years continued + update on recent events

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 haha๐Ÿ˜‚

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

Whatโ€™s going on? (6 years cont..)

It’s kind of scary to think that all of this was going on around this time 6 years ago. Anyway, onto the rest of my story…

A lot of the time spent down in X-Ray was a bit of a blur if I’m honest. I’m told we were down in X-Ray for quite a long time. I remember the radiographer on the phone to someone whilst walking in and out the room. (The person on the other end of the phone, I found out later, was actually my consultant – he was directing the radiographer on what pictures he wanted taken at different angles). From what I’m told everyone was a bit shocked at what they were seeing.

The images appearing on the screen seemed to show that my stomach, liver and basically everything else in that area was in the wrong place. The main organs in the wrong place were; my stomach and my liver. My stomach was positioned vertically up my left side of my body and my liver was where my stomach should have been. I reckon I was in the X-Ray department for at least an hour or so. The radiographer was getting as many images as was instructed (by my consultant) and because we were in there so long, and the radiographer was taking a lot of images – a warning light apparently started flashing. This was to say that we were getting near, or had gone over, the limit of radiation that a person should have in one go. In total I had 72 images taken in that room. That number has always stuck with me for some reason. I remember seeing the number on the screen. Another thing that had to be done during the taking of images was moving my NG tube, which I still had. And by this, I don’t mean taking it out and putting a new one in a different nostril or anything, just moving it a bit from the outside so the inside – which was in my stomach – could be seen on the computer/image. I can’t remember exactly why. Maybe because it was getting in the way of important areas in the image?

So anyway, once I had spent my time down at the X-Ray Department Me, my dad, my nurse and the student nurse went back up to the ward. That evening (I think), my soon-to-be new consultant came to see me. He explained what he saw in the scans. Where the stomach and liver was, and various other organs. But the stomach and liver was the main concern. He mentioned an operation – which was suggested previously a couple of months back, but that was only a maybe at that point. Now, it was definite. I needed this operation. And this operation that was needed? It was quite a major procedure. At the time, it didn’t seem that major – I think I was just numb from everything that was going on. I smiled and carried on as per ‘normal’ – genuinely my usual reaction to something that doesn’t quite go right. I think also, because I was quite young, I didn’t quite understand the full meaning of it all. They had to move my organs aroundย – it still doesn’t seem that big of a deal to me if I’m honest. My Dad probably had it explained in a slightly more detailed way than was told to me. Obviously, he didn’t react to it and had the same attitude as me – although that might have been a cover to protect me. We were told that they couldn’t do anything straight away as I was still quite weak and needed to be ‘built-up’ with mainly tube feeds.

The following few days involved; speaking to my consultant and his team, having a procedure done (very minor op to insert a picc line for tpn/drip feeding), resting and the normal obs and blood tests.

Here are some screenshots of a few Facebook posts I uploaded at the time. Excuse my grammar and spelling back then. Some of it is a bit cringy if I’m honest ๐Ÿ˜‚๐Ÿ˜‚. But I’m showing you because, well, they’re quite light hearted and it just shows the sense of humour I had at this time.

^^^^^

Yes, I craved foods in hospital, mainly cheese though….๐Ÿ˜‚^^^^^^

(This was funny, everyone, including the staff were a bit puzzled as to who this ‘Jamie Rickers was. ๐Ÿ˜‚. That was until he actually came to the ward. We knew who he was then!๐Ÿ˜๐Ÿ˜‚) By the way – I can’t find the photo unfortunately)