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MRI and Lego

Again I have missed a day of posting and for that I apologise. But for yesterday’s post I want to talk about the below photo.

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This is an MRI machine made out of Lego that I found last week. I can’t remember when I made it but it must have been between my MRI in 2011 and my operation in 2012, part of a Lego hospital I created. There was an ambulance with ramp, a small ward, a pharmacy, a bed on wheels and even a wheelchair but I am most proud of the MRI machine room. The bed slides into the machine through the window across the smooth panels, there are two benches for waiting (one inside and one outside) and there is a full control panel for the operator, who is naturally wearing a helmet as PPE.

Lego is so versatile and I’m glad I found this in order to share how I used it while I was going through my operation.

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CT Scan and Mock Exams

So, you are happily enjoying a lovely influx of new posts – it wont last, the internet was down when I wrote this, and I had nothing else to pass the time. This post will start a little random, because who can write a substantial blog entry about a CT scan, and also I like giving a bit of background to events.

It was December 2011, and I had won a Commitment Award at school. The Awards Evening was held at the Brighton Dome on a Monday and everyone involved got the day off to rehearse – I was also playing the violin and singing in the musical section. Anyway, we did the rehearsal and I received my memory stick on the night without falling over. For that bit I didn’t even have to worry about what to wear because it was school uniform. For the second half, I changed into my black top and skirt, which showed that my hips were uneven but didn’t really bother me too much, and went up to perform. I ended up playing in string group and then immediately coming off stage and going to sing Bohemian Rhapsody, I believe that was the order anyway. Neither went too badly, except I forgot most of the dance moves for the latter – it was all a bit last minute, but if the music department is reading, it was really fun.

Anyway, after this evening of busyness, we were all rewarded with a day off – but this was not a free day for me, my mock exams started on the Wednesday! We didn’t do every GCSE exam we’d do in the summer but we did a fair number, crammed into about the space of a week. I did very well, especially as once I had finished the following Wednesday, my bonus day off on the Thursday was…you’ve guessed it, a trip to St Thomas’!

Don’t mistake the above enthusiasm for excitement. I wasn’t as nervous as I had been for the MRI, but I still didn’t quite know what would happen inside the machine – for a start the MRI and CT machines look different. Anyway, it was just me and my mum this time, and we got the train up and walked to the hospital, just like we do every single time. Except the CT scan was not at the Evelina, it was in the Accident and Emergency department of the main hospital St Thomas’. We walked through the A&E waiting room, which wasn’t particularly full as it was a Thursday, and I was very impressed with their shoe-shop-style take a number and wait system (I know this is probably not exclusive to shoe shops, but that’s where I know it from).

The X-ray/CT scan part was deserted, so we didn’t have a long wait. As with the MRI, I had brought leggings and worn a T-shirt, which was fine except I hadn’t noticed the tiny sequins {what are they called} on the front. We ummed and ahhed with the radiologist, who we’d encountered before in the Evelina (I don’t think she remembered us!), but decided that I’d better wear a gown instead to be on the safe side, but at least I had the leggings to keep my legs warm!

I had brought my toy rabbit, French Rabbit, again, so he went into the room with me, but because of the radiation my mum had to wait outside. The machine for a CT scan is literally a donut, rather than something cave-like like the MRI, but apart from that it’s pretty much the same. I also couldn’t keep my hands by my sides, because they would obstruct the picture of my back that we needed, so there was a special bit on the bed-thingy (don’t know what it’s called) where you put your hands, basically above your head. Rabbit obviously was being held tightly there as well.

The whole process was over pretty quickly, about 5 or 10 mins, but I did get a sensation that I was about to fall backwards, probably because of where my hands were. We left via the gift shop (main hospital, the A&E doesn’t sell mugs with ‘I went to A&E’ on them!) and bought a bauble for the Christmas tree and browsed the cuddly toys – once I knew I was having surgery, I asked for a new one to make the occasion less scary (I was 15 but toys are very comforting during hard times). We went back to the train station via Rymans, where I bought a birthday present for my friend and a Things to Do list for myself. I can’t remember what we did for lunch though – M&S?

Well I think I have proven myself wrong, this is pretty much all a blog post about a CT scan, so I am going to stop typing, and you can have a breather, because my next posts will be less operation orientated – and then you’ll get the big ones. As always thank you for reading, and please comment if you want.

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November 2011 Appointment at the Evelina

Firstly, I am very sorry that I haven’t been posting, and that this means it’s very unlikely that I will be up to date by 1 year post op. Hopefully, my extra frees at college will mean that I can get on with writing this (as I am now), at least when I don’t have much work.

Today I am going to talk about the appointment I had in November 2011. Of all my experiences, this is one which I can’t really remember, so this post may be a bit light in detail. We had already had the bad news that surgery was imminent, so I was slightly more subdued in the days before the appointment. The Sunday before my mum and I had tried to go through the information booklet, but it had made me feel rather sick and hide in the toilet halfway through – we did skim the whole thing though, and think of a few questions to ask.

We got the train as usual, and then walked to the hospital. On arrival, we were sent up to X-ray, but luckily the wait was not as long as the last time we were there. When we returned to outpatients, we made completely sure that the nurses received the ‘Back from X-ray’ card, and awaited our consultation. We had the appointment with the actual consultant this time, Mr Lucas, but he also had the two registrars who had looked at me before popping in, probably to understand how you should break bad news to a patient properly.

After all the annoying nerve tests and physical examination, he got down to discussing the ins and outs of the actual procedure and the risks. I won’t go into them now, because I don’t want to and frankly can’t remember what he said anyway. But after that we were able to ask our questions – would it avoid my GCSEs? How long would I be in hospital? When would I be able to go shopping? The last one was my idea, but not because I go shopping a lot, I just wanted to know out of interest!

I was actually pretty calm, considering all the worry and pressure I was under, and I’m pretty sure we signed our forms and left. After a light lunch, we went to the Florence Nightingale Museum, which is on site at the hospital. I was studying the history of medicine for GCSE, but it was also an opportunity to do something nice while I was not crying about the appointment. I really recommend it, although it is quite a small museum and the audio tour involves a stethoscope so is a bit uncomfortable. You do get a sense though of Florence’s upbringing and what nursing in war was like, then and now.

Once that was over I bought a pen in the gift shop, and then we went home. I can’t remember at all what we did once home, but probably had a curry and watched something on TV. We had begun to play the waiting game, with the next step being a CT scan, which I will talk about next time.

Thanks as always for reading through this, and please comment below if you want to!

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Confirmation of Surgery

So, last time I posted about my appointment, I’d just been told no surgery. Therefore I’d had a nice summer and enjoyed myself. By mid-August I had started worrying about my appointment in September, but this had happened for the previous appointment too, so nothing new there.

On Tuesday 13th September, I had the day off school and we headed off to St Thomas’ Hospital, or rather the Evelina Children’s Hospital on the same site. Having the day off meant that I was nervous about it, as the appointment wasn’t until 2pm, and I remember watching Glee I think the night before, as a treat. Anyway, we got the train, probably ate some food, and got to the hospital in plenty of time, as usual. Due to limited waiting space at X-Ray, they keep you in the large, open waiting area for outpatients (Ocean) before sending you up there, which we were fine with. From what I can remember, we went to X-Ray around 2.15 (I could be wrong, it may have been earlier!) and the situation up there was very busy – there weren’t enough chairs for a start. Whilst waiting, we met a lovely little boy called Jamie and his mum, who had been waiting for around an hour. This is especially poignant because I later saw Jamie in the information booklet about treatment options, and for someone still in primary school, to go through a brace and possibly surgery is extremely commendable.

Anyway, when we heard he had waited an hour, we thought “That won’t happen to us”, bearing in mind my dad was waiting downstairs while me and my mum were at X-ray and he would wonder where we’d got to. Nevertheless, around an hour later we were send round to change and they did the X-rays. We then headed back downstairs, and it was pretty busy. Not a nurse to be seen, I handed my back from X-ray card to one of the receptionists – BIG MISTAKE. We wondered after a little while why we were still waiting, and by 4pm we still hadn’t been called. On inquiring, it turns out I was never registered as back from X-ray, although why they didn’t check up why it had apparently taken two hours too do the X-rays I will never know.

Finally, after a long time waiting, and me getting a bit distressed, a lovely physio (I think she was called Anita) called me in and we saw a different registrar from last time. He looked at my X-rays and did the usual physical checks and said that the curve had got worse and that they’d need to operate. I cried at this point, and he was reasonably unimpressed, wanting me to calm down. He gave us an information pack and left us to talk to the kind physio (well actually he just left us, and the physio wanted to help us out and have a calmer chat).

Anyway, the physio answered a few questions and was pretty sympathetic – I think she understood my situation a lot more, as I had just started year 11 and GCSEs were coming up in May. I was also already planning going to summer camp (Bredon, which I mentioned in the last post), which looked less likely after this news. While talking to the physio, I actually stopped crying and was able to ask a couple of questions – although I cannot remember at all what they were!). Once we let the physio go back to work, we went home via WHSmith, where I bought a copy of Harry Hill’s Bumper Book of Bloopers.

Once on the train and at home, I felt OK, but by bedtime I was distraught again – this would continue for many weeks. I returned to school the next day, starting with maths. I want to make an apology at this point, to my friend Laura, who asked me how the appointment went. Unfortunately I couldn’t tell her, firstly because it was in a lesson, two because there were others listening, and also because I couldn’t bring myself to tell anyone myself. This was a big thing for me, as I am scared of needles and practically everything medical – I didn’t fancy missing school either.

So, thanks for reading and please comment if you relate or have any questions.

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My back, July 2011

My back, July 2011

This is me from the back in late July 2011. It is obviously made worse by the fact that I am walking, but you can clearly see that it is by no means straight. This was taken at Bredon 1 Summer Camp, and I have cropped it because others were in it, so it isn’t great quality. I will also talk about Bredon at some point, in a later post.

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Declan

I have been wanting to write this post for so long but have been putting it off again and again. One reason for this is that I hoped to create a video to accompany this, but decided not to due to time constraints and also because it contained footage of my primary school class, and I don’t have their permission to publish it publicly. This is also obviously a sensitive issue, but I hope that this is a nice tribute, as well as giving the general reader an idea of what accompanied my journey to surgery.

I met Declan aged 4 in Reception Class. He was always friendly and quite boisterous. My mum said that sometimes he was in his own little world and was completely unresponsive to what anyone told him – this wasn’t because he was being naughty, it was just how he was. One thing I noticed at that age was his large and growing family, and they were lovely. He wasn’t as bright as me but made up for it in friendliness. I would see him a lot as our trays (this is where we kept our stuff in the classroom) were next to each other – they were ordered by first rather than last name. Having said that, we were a close knit class and indeed school, with only 200 or so pupils. Unfortunately, even though I left just 8 years ago, I can’t remember all that much else about life at Primary School. In Year 6 we put on the Sound of Music as a play, but it was a ‘Mr Bennett special’, including a gorilla, random dances, and Robbie Williams – played by Declan. He loved music, and was good at it too, earning him not only that part but also the part of one of the children.

We all thought we’d not see him again once year 6 was over, as he went to a different school to the ones most of us were going to. Luckily this was not the end, as he transferred to my school a year later. Sadly, this would be the last time I ever spoke to him, outside the main entrance of the school. He was with a group of boys from his form and me and my friend were walking past to get to our lesson. We said hi to him and moved on, but I had a feeling that the boys were giving him grief about it. I didn’t really see him around school anyway, but I doubt I would’ve acknowledged him again if I felt the others would be mean. This probably contributed to him homeschooling, but also the larger school environment makes it harder for anyone to thrive and get the same level of support as in earlier years.

It was a Friday morning when the accident happened, 6th May 2011. He was crossing the road on his paper round whilst listening to his iPod with his hood up. A car flashed him to cross but another was coming the other way and he was thrown into the air. It was the school run and reportedly a number of buses passed the spot where it happened and saw the scene. He was obviously taken to hospital and the news of the incident spread, mainly through Facebook. I found out about it on Saturday and vividly remember telling my mum after my piano lesson that Declan had been knocked down. I cannot actually remember being particularly scared about my impending appointment, I guess I focused my energies on praying he would get better, which we all thought would definitely happen. We prayed at church the next day, and at youth group, but by the time I arrived home at 9pm on Sunday night, his parents had made the brave decision to turn off his life support. The news came, as usual, from Facebook, and I remember crying for around 10 minutes before going to tell my parents, who were watching something on TV. They never announced his death at school, telling us about the accident but not confirming what we’d heard on Facebook. I was upset and angry for a while, but almost enjoyed the memorial service, held in a large marquee, with loads of people there – including many of my primary school class. His death also inspired his sister to make music and she has released an album and is doing a concert on Saturday – her website provided a number of facts about the accident

RIP Declan, gone but never forgotten.

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May 2011 Appointment at the Evelina

I am actually writing this post in my English lesson (I’ve finished my coursework so thought I’d use my time in a computer room for all you lovely people). I apologise in advance for it being a bit formal, am in English writing mood!

On 10th May 2011 I returned to the hospital to get the results of the MRI and decide what the next step would be. Once again I was very nervous and apprehensive, I also had a lot on my mind – an old friend, Declan, had died two days beforehand and he was my age so obviously I was very upset (I will write a special post about him soon so bear with me). This was my first visit to the Evelina Children’s Hospital and I was pretty impressed – I am a big fan of the themed hospital levels approach to children’s hospitals (it goes from Ocean to Sky so we get a whole spectrum of colour schemes and animal decorations)

ANYWAY, we were sent up to X-ray and had to wait around for a bit before they actually could take the X-rays – the floor was called Arctic if you were wondering. When they were finally done we went back down to Ocean reception and handed in the ‘Back from X-ray’ card. After some MORE waiting, an unfamiliar man came out and called me in. He was one of Dr Lucas’ registrars. We were ushered into the room (I apologise, I’m going all formal!) and he said that the curve was stable and I wouldn’t need surgery. I was so happy!

St Thomas' Hospital May 11

St Thomas’ Hospital May 2011

To celebrate we went to M&S Simply Food in St Thomas’, which was becoming a tradition and sat on the grass by South Bank, opposite parliament. I can’t remember what I ate (probably ready salted crisps, cheese, chocolate mini bites, that sort of thing) but it was a nice day and I took a few photos with my dad’s phone – including a ‘guess where I am’ one in the WHSmith. I’m pretty sure this was the time I was bought a pack of Doctor Who Series 5 Top Trumps. All in all it was a pretty good day in hindsight.

We walked across Westminster Bridge and my euphoria turned bittersweet. Declan was dead and I was happy – it really didn’t sit well with me. However I do love Westminster Bridge, it is featured in the opening episode of Doctor Who series 1 (and now in Series 7 too) and a climactic place in Noel Clarke’s film 4.3.2.1., which I had recently discovered and love (despite the weirdness). I cannot for the life of me remember what we did next but probably got the train home.

The good thing was I could enjoy my summer – there’ll be a couple of random posts after this 🙂