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Featured on the Evelina website

As you will probably be aware, earlier this year I cut my hair for charity. The hair went to the Little Princess Trust while the money went to Evelina London, where I had my spinal fusion surgery. You can now read my account of why I fundraised on the Support Evelina blog via the link below!

http://www.supportevelina.org.uk/news/a-cut-above-the-rest-for-fundraising

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Discharged: Tuesday 14th July 2015

This time last week I had just returned from London after my final appointment at the Evelina. Yes, you read that right, I am never going back. And not just because I am 19 and too old to go to a children’s hospital, they have actually discharged me. (Well done to the eagle eyed among you who read the title of this blog post). So here is a little recap of my last day doing the hospital trek!

You may be aware of my fairly severe anxiety prior to the appointment and so this meant that I was very stressed for the journey. This was compounded by the fact that our train was delayed and full so we had to stand for the first fifteen minutes of the journey, making me feel quite queasy. Fortunately the train was connected with another quieter train and we found two front facing seats for the remainder of the journey.

We got to the hospital around 11:45, half an hour early, and after a minor issue with the automated check in service, where the computer did not recognise my new GP surgery and the idea that it is nowhere near my permanent address, we sat down ready to watch the screens. My name came up and as we were gathering ourselves to go upstairs we bumped into Rachel Hunt, the very lovely lead nurse for the clinic (the shortest way to describe her anyway!). She was very interested in what I was doing and we were very happy to give her a copy of the article on scoliosis that I wrote for The Founder, Royal Holloway’s student newspaper.

We went up to X-ray, I was asked my age before being given the pregnancy declaration form, which was odd seeing as you have to complete it from the age of twelve and I’m sure I look older than that! I changed from jeans into leggings, my X-ray friendly clothing showing that I am a seasoned patient! I’m sure the student radiographer was about my age, but the pictures were soon done and we were back in Ocean reception waiting for my name to appear on screen again. And for anyone going to the Evelina and having an X-ray, do tell a nurse that you’ve returned!

The physical examination is the part of the appointment that I hate the most. People touching my back directly is not something I like, especially consultants because they have cold hands! But we finally got the notification to go to Octopus 5 to see a completely new doctor, as Rachel had already said that Mr Lucas was not around. His first line was “Oh, you shouldn’t really be here anymore” – many thanks for the obvious statement! We explained how Mr Lucas felt there was little point in transferring me for one appointment and gave a few details on my surgery, which he really should have known through reading my notes. The weirdest bit was the next bit. Instead of getting me to lie down and swap my clothes for a hospital gown and do nerve tests and the like, he just got me to walk on my toes and walk on my heels and then did a forward bend test. Then we were all done and I was discharged. Rachel said farewell and before I knew it we were out of there, what’s more it was only 1:15pm!

We pushed the boat out with toasted sandwiches for lunch in the M&S Cafe on site, then headed to the National Portrait Gallery, where I had been told to go for one of my modules next year. We spent most time in the Victorian collections (because of the Victorian module) but my favourite painting would have to be General Officers of World War I byJohn Singer Sargent (http://www.npg.org.uk/collections/search/portrait/mw00108/General-Officers-of-World-War-I). It is pretty large and the sentiment behind it, the generals being aloof from actual fighting, is very similar to themes in Oh! What a Lovely War, which I studied last year.

By the time we got to the Tudors area I was absolutely drained, having left the hospital feeling quite tired. The stress really takes it out of you, so we headed back to Victoria on the Tube and caught the train home. We got fish and chips and were home in time to eat with my dad. I finished the day by watching a documentary on Virgin Atlantic.

So, now I am officially normal. No more hospital visits. Bittersweet, but I’m very happy all in all!

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6 Week Post-Op Appointment: Tuesday 6th November 2012

So, I’d made the first steps to return to school and it was time for me to return to the hospital for my first post-op appointment, 6 weeks after my operation.

I was naturally very nervous about going back to the hospital, especially the journey up on the train. Luckily my appointment wasn’t too early in the day so we didn’t get a particularly busy train. I can’t remember if we got the underground, taxi or walked from the station to the Evelina, but as always we arrived in plenty of time.

We had a fairly smooth time in x-ray, I don’t think we waited long and they were very happy with my x-ray friendly clothing (plain t-shirt and jogging bottoms). There was little of note recorded in my actual appointment, just good recovery and healing. Once appointment stuff was finished with, we went down to m&s food for some lunch and then headed home. On the way we popped into the grounds of Westminster Abbey to see the remembrance crosses.

There’s nothing else really to say on this, I mean I went home and watched TV then went to bed! My next appointment was scheduled for 6 weeks later, so I’ll be talking about that after filling you in about the rest of 2012! Please follow/comment/ask questions!

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Bed Space 20: Saturday 29th September 2012

I find it incredibly annoying to not remember what happened to me for most of my stay in hospital and it’s times like these that I wish I’d written this blog before.

By Saturday, I was beginning to get back to normal – I had a better sleep the night before and I was being forced to get out of bed to go to the loo or get food. They also encouraged me to get out of bed and sit on a chair to help me sit up and not be slumped in bed all day. I was still being sick, but I had been joined in this by Ella and Charlotte, who also suffered from taking morphine.

I think today was when the anti-sickness medication came in, technical name anti-emetics, and this is not a pleasant experience. Much like the removal of the canula I talked about in an earlier post, I think they have to flush the canula, but even if they don’t the sensation is the exact same – it’s really weird and horrible!! However I think it stopped the nausea so that’s good.

From talking to others I’m pretty sure that I was visited by a physio (going to guess her name as Gemma) to do my stair climbing, to make sure that I was ready to go home. We went to the stairwell that you can’t actually get out of unless you go to the ground floor, but luckily we didn’t get locked in! I managed to walk up and down a half flight, and was cleared physically to go home.

I think I was also invited to the cinema to see a film. They have a Medicinema at St Thomas’ that means that patients can be literally wheeled down to watch a film and make their stay a bit more enjoyable. I suppose it was a pleasure to be asked because there apparently isn’t much room for loads of beds in the cinema, but whatever the film was I didn’t want to see it (I think it was a cartoon), so that honour went to someone else.

One thing we’d done to make the stay better was bring my mum’s laptop and some DVDs so I could watch something other than daytime TV. We didn’t really do this much because it was quite hard to set up and the TV on the bed sufficed. But, we did manage an episode of Outnumbered, which was very funny and cheered me up.

One of the highlights of my day, and indeed my entire stay in hospital was watching the finale of Doctor Who, The Angels Take Manhattan, which was the last episode with my beloved Amy and Rory. In a way it was nice that it aired then because I will always remember how I felt when I saw it. I wont go into too much detail about it – it started slowly (although with GREAT music), then things took a turn for the worse, then this scene happened: SPOILER ALERT: IF YOU HAVEN’T SEEN THIS EPISODE 1) WHERE HAVE YOU BEEN? 2) DON’T READ ON!!

I apologise that the video didn’t properly embed, but at least this is the real footage! (Turns out it’s all fine now!)

I think I cried at this point, even just because the music is so amazing. And then you’re hit with this false sense of security because they survive and then BANG Rory gets zapped by an angel, and Amy makes the choice to leave the Doctor and risk being lost in time to be with her husband. By this point I was definitely in tears (remember I was very drugged up!). By the time the episode finished it was 8.05pm and there had been a shift change – my nurse was now Sam. This was a bit awkward because I couldn’t actually say anything about what I’d just watched because he hadn’t been able to see the episode and was planning to watch it on the Monday (if you’re reading this, please let me know what you thought!!)

After I watched Doctor Who, as you might have guessed, I was a little emotional. So it was obviously the perfect time to call someone from home…! This wasn’t actually intentional, we’d been trying to make phone calls all day but we just happened to get through after Doctor Who. Anyway, we rang one of the youth leaders at church, Nicky, and told her that everything went well and to relay this information to relevant people on Sunday. I’m sure we talked about loads of stuff because I hadn’t seen anyone from outside the hospital for days (except Sonia) – all I can really remember about the call was saying ‘I’m a bit emotional because I just watched Doctor Who’. It’s always nice to hear a familiar voice, and I recommend that you call someone at home from hospital if possible because it puts everything back into perspective. It’s a little bittersweet though as it reminds you of what you’re missing.

It was probably about half 8 by this time so, being a Saturday in September, I may have tuned into X Factor (I remember seeing bits of it during my stay) and then I fell into a broken sleep.

Anyway, join me in my next post to hear about my penultimate day in hospital. Please comment/follow/read more – I’ve added a comments box on the about page so you can use this for any comments or questions and I can get back to you.

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Bed Space 20: Friday 28th September 2012

By Friday, the boys were all going home, and so I was moved once again, this time to bed space 20. Ella and Charlotte would join me once they were back from surgery. This was much better than 16 because there was a built in TV so I could watch away to my heart’s content. The downside was that I had further to walk to the toilet when the physios came. It was quite late in the day though by the time I’d finally moved I think (my memory must have been massively addled by the drugs!).

Anyway, one of the first things I did was, you’ve probably guessed already, watch the TV. And it was great; the previous week’s Doctor Who (The Power of Three) was on repeat! I think there was a shift change during the episode but I was not being moved away from that screen, finally I’d found something good to occupy me. Next on was Miranda on repeat, which I had never seen before, but unfortunately they did want me to get out of bed by that point, so I only managed to see the second half of that episode.

Miranda was definitely a bit of a lifesaver during my stay – not only did we get to watch that episode, but we’d also downloaded her free book ‘No It’s Us Too’ onto my mum’s Kindle. When you think about it, the book isn’t actually by her, but contains a number of anecdotes about people doing silly things – you can probably still get it for free on Amazon and other e-book stores. Anyway, it was nice and cheery and kept my spirits up.

Compared to Thursday night, Friday night was a breeze, although I was having trouble with the medication side of things – after the vomiting started, they decided it would be best not to give me tablets (correct answer!) so I was having some lovely syringes (big ones) of blackcurrant-y flavoured diclofenac, and strawberry flavoured Calpol (which I didn’t realise at the time). This did require me to sit up though, which was a bit of a challenge, and I tried the patience of the nurses in my slow manner of getting upright enough!

The other issue was that I was finding it hard to lie on my right hand side (which is how I usually sleep) so had to resort to lying flat or on my left hand side, which was less comfortable. I can’t remember why I had such a problem sleeping in my normal position but I guess it might have been to do with my arm going a bit weird or maybe just my nerves.

Anyway, I’ll continue my story soon, but for now just like/follow/comment etc.

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Bed Space 16: Friday 28th September 2012

So, after leaving you on a cliffhanger and uploading a bit of random stuff, I am returning to me being in bed space 16 and waking up after a, quite frankly, horrible night. I would recommend reading my earlier posts before this one, so if you haven’t you might want to scroll down or go back to the Home/archive page. This is probably all in the wrong order, so I apologise for that, but my memory is so bad, especially because I was all drugged up! WARNING: this post contains a lot of reference to bodily fluids so if you don’t like that sort of thing, read on at your own risk.

Anyway, I woke up in the morning on Friday 28th September a bit groggy. To be honest, I barely remembered the fingerprick tests so almost thought someone had stapled my hand in the night or something! My day started with a man from A&E coming up and informing us that it was too risky to bring the portable X-ray machine up and expose everyone to such a lot of radiation – I’d have to go down for an X-ray. Luckily, Mr Lucas turned up shortly afterwards and informed everyone that I did not need an X-ray, it was clear that I was just constipated and should be encouraged to get up so everything could start moving again.

Anyway, the physios certainly obliged with the whole getting me up thing, and I was not very happy about it. They were no longer content with getting me sitting up for two seconds – I was now supposed to be walking, or at least moving to sit on a chair. To be honest, the physio session from Friday is a distant hazy memory, but I think I managed to walk to the toilet and back, and they were able to get me sitting on a chair next to my bed as well.

Now, before this I think I must have had a visit from a pain nurse, because for me to walk around more freely I definitely didn’t have any morphine attached to me anymore! The removal of my canula was a weird feeling, because they had to removed the pump and then flush the tube with water (and therefore my blood) which is a horrible sensation. Basically, body temperature is 37 degrees, but that is pretty warm for your skin, especially when it’s concentrated on a small area – they do flush it with warm water, but it can’t quite be body temperature, so it feels really cold – you can actually feel it travelling down your arm! Luckily, you don’t actually feel them removing the canula, and they covered up the area with tubigrip and melonin for me so I didn’t have to look at it!

OK, backtracking again, I promise I didn’t mean to write this post in reverse order. Today was the day that I started being sick big time. Firstly, my stomach obviously didn’t help matters, but much of the sickness was due to the morphine, because it mucks up your insides quite a lot. Previously I had been taking tablets but they had to move me to liquid medication because I was just making myself sick through trying to swallow tablets (although I managed the horrible taste of the medication!). I had a vague recollection of a useless healthcare assistant trying to help me swap my tops after I missed the sick bowl (sorry!) – she wasn’t allowed to unplug me from my morphine machine so we had to wait for nurse Ellie to come back from wherever she’d gone so that she could unplug me, swap tops, and then plug me in again. Foresight has also told me that part of my being sick is probably because I wasn’t eating, and therefore my body couldn’t take in some of the medication, which needs to be administered after food.

The useless healthcare assistant redeemed herself from uselessness (not from my annoyance) because she and nurse Ellie gave me an enema. I’m not going to go into details because it creeps me out a bit, but avoid enemas at all costs. OK, it wasn’t that bad and it did the job, but it certainly isn’t very pleasant. I had to lie on my side for it, which was hard, but at least I got a more hospital-y experience through using a bedpan (verdict: incredibly hard to do after a back operation). They also took my catheter out (don’t think the healthcare assistant was involved in that), which feels really weird, I can’t really describe it, but it’s sort of like the feeling you get when you feel like you need the loo but actually don’t. Anyway, my days lying in bed were well and truly over.

Going back to after the physios started working with me majorly, Rachel Hunt came to see everyone. As I’ve said, she is very lovely, but she was also the person who removed my pressure dressing, which was pretty painful. It’s basically like an elongated feeling of when you take a plaster off that’s stuck down very well, but stuck all the way down your back where you’re partially in constant pain and partially can’t feel anything. I also had to lie on my side for her to do it. But it could’ve been worse – cold spray was used in abundance and she tried very hard to be gentle.

The other awful thing Rachel made me do was take Movicol, a strong laxative. It was in the form of powder in sachets, and I think I was meant to take either 4 in 1 hour or 4 in 4 hours, but ultimately I struggled with taking 1 in 4 hours! My mum put it in some nice apple juice that she’d bought in M&S Simply Food, but it was really sickly sweet (probably from the powder) and put me off drinking cloudy apple juice for about a year. For some reason by this point I was wearing a hospital gown, and I will now provide you with a lovely photo of me sitting in my chair, looking horrible, ill and ‘pregnant’ (not actually pregnant, just full of air etc!)

2 days post-op

2 days post-op

At some point during the day I got some good news – they were moving us back to the other bay! Hooray! The boys had been discharged, or were in the process of being discharged, so there was space for all three of us girls – also it meant we were nearer the nurses’ station, which is always useful when everyone’s being sick.

I will leave this post there, and I apologise again for all the bodily fluids and stuff – I didn’t actually realise how much happened on the Friday! I will continue my description of Friday evening in my next post, where I will be in bed space 20!

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Bed Space 21

On my return to the ward I ended up in bed space 21 (see my earlier post for an explanation of what this means!!). The other beds in the bay were all occupied by boys with various conditions – as I was the only one having surgery that day, there were no other scoliosis sufferers I could talk to.

By this point I was massively hungry, so we asked for a snack box, seeing as dinner time had already passed, and Sam obliged (it has taken me almost a year and a half to work out that he probably came in early so that he could ferry me down to surgery and I would know who my nurse would be when I returned!) I ended up eating some corned beef out of the corned beef sandwiches and I must have had something else, maybe a yoghurt? I have no idea what else I did at that point – I can’t remember watching TV, so maybe my mum read to me, but I was quite happy and sitting up and relaxed.

The real issues came when I tried to sleep. I had spent the majority of the day under anaesthesia so wasn’t really tired. Add to that pain and the noise of the hospital (the boys were rather noisy!) and it was a recipe for sleeplessness. My parents had bought me some Torchwood audio plays at my request (they are almost unique as they are read by the respective actors rather than narration of a book), which were useful throughout the night.

I managed to get around an hour’s sleep and then, unfortunately, I had to be woken up so that I could take some painkillers (paracetamol or diclofenac or both, I don’t know) – this was probably around midnight. I could take Paracetamol every 6 hours, and Diclofenac every 8, so that the dose was spread throughout the days/nights. However, this meant a rude awakening. After taking them I couldn’t sleep again – I think I got through at least one audiobook that night. I seem to remember sleeping at about 2 – my general memory is that I slept for an hour then was awake for an hour but I did spend some time thinking that my audiobook was broken because it seemed to skip to the end so maybe I fell asleep in the middle. I have no idea how pain relief worked while I was sleeping either – I think I must have got an amount of morphine automatically.

Waking up in the morning was evidently fun, as you can imagine! I was tired, spaced-out and in pain. The breakfast trolley came round and I think I had a yoghurt, although whether I ate it is another matter – I built up my own little collection of ‘Little Stars’ yoghurts because that was what I mainly felt like eating but then didn’t eat.

It was a morning of visits and at one point I was seen by THREE physios! (one of them was called Rachel actually) Their aim was to get me to sit up, or even get out of bed! My aim was to lie as still as possible and relax so I didn’t feel any more nauseous. Despite this conflict, they managed to get me to roll onto my side and somehow angle myself into a sitting position. However I felt extremely faint, hot and sick so I didn’t stay there for very long and retreated back into my bed (I was possibly sick as well but I can’t remember). I was being fanned by a disposable sick bowl and also acquired an electric fan, but at least I managed a degree of uprightness.

I was also visited by some pharmacists I think, who filled my medicine drawer with tablets that I might need once discharged (I think this is so that there was definitely enough medication to take home, rather than relying on quickly depleting stocks from the pharmacy). They all had clipboards. I must have also seen my surgeon that morning, but I can’t remember that!

At some point in the morning, ‘other’ Rachel proposed that I be moved to bed space 16 because there were two girls coming in for operations ready for Friday and so they wanted to create a girly bay. The problem was that this other bay had no built in TVs and I really wanted to watch Doctor Who on Saturday. In my head the possibility of missing it was terrible and I actually cried over the proposed move, and if Rachel is reading this I am really sorry that I cried because it wasn’t that big a deal!

I doubt I ate much lunch (I can’t even remember what I could eat for lunch, it was probably the same as dinner!) and afterwards I agreed to move to bed space 16.