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A long overdue update

Firstly an apology. I’m sorry I haven’t kept everyone in the loop and I don’t have an excuse for it. The bottom line is that I’m fine.

Let me elaborate. If you haven’t read my post from February, you should go back and read that. My appointment was around two weeks after I got the referral, which goes to show that private healthcare is very quick (the main delay was the fact that he was on holiday!)

The referral was probably the most complicated part of the process. I couldn’t get through to the GP on the phone to check if they had the letter for me to collect, and in the end I had to walk there before work in order to pick it up. In the snow. I get to the GP and they don’t have the letter. Apparently it was sent to the hospital, but Guys don’t have it and neither does London Bridge, so it’s pretty much a lost cause. A few minutes later and I have a print out of the letter template and I’m on the train to work.

Next job: check that my parents can actually make it in the weather conditions, and if not consider alternative people to come with me so I feel more calm. It wasn’t snowing in Brighton so the flurries in London were no barrier to their arrival. Once in work I called the hospital too – everything was working well and Mr Lucas was in the building (or a hospital building somewhere…)

Fast forward 6 or so hours, I’ve pretty much stopped doing work and have had to watch ‘Trans Kids: The Right Response’ twice to assess the complaints that had been made because I cannot concentrate. My parents are also already stood under an arch at the entrance to London Bridge station waiting for me so I leave work.

Private hospitals seem to me very much like the NHS, except for the concierge at the entrance. Nobody mentioned that the usual building for Mr Lucas’ clinic was being refurbished but after wandering round for several minutes we find the corridor and wait in a rather long queue for the receptionist to register me.

We didn’t reach the front of the queue: Mr Lucas saw us, recognised me and ushered us straight in. Private healthcare is good like that. We made small talk and I updated him on my life, and how great it is to be able to see him so quickly. By this point I was shaking a fair bit, but got through the physical examination and happily he said that the alignment looked perfect.

The lump I found? It’s the tip of one of my metal rods, made prominent because I’m so slim. Just to be safe he sent me for some X-rays and said he’d call with the results the following week. Here they actually registered me at the hospital and we waited a little while before the radiologist called me through. The only difference to an NHS X-ray seemed to be an additional dressing gown like thing that went over the back of the hospital gown to cover the gaps. Good, but perhaps not worth the money.

Once the three X-rays were complete we headed home via M&S Simply Food (some traditions never change) and had dinner before my parents headed back to Brighton. By the time they got home it really was snowing. Despite good news, I was very tired from the stress of the day, but what else is new!

The summary letter came through to my email very quickly, and I was told he would call me the following Friday to confirm the results of my X-rays. I booked the time out in my work calendar and enjoyed the snow in the meantime (by which I mean struggled into a rather empty office in multiple layers, then came home and put the heating on very high).

The Friday came and I eagerly awaited the call. He was a bit late, but his PA did at least call to warn me. Eventually the phone rang and I got the all important confirmation that I really am fine, which was great to hear. The small caveat is that he’d like to see me again before I’m 25, but hopefully that will continue to be good news!

Update over and thank you especially to everyone who got in touch with messages of support and love. I couldn’t go through anything without you all!

And keep your eyes peeled, because I have more to say (and hopefully much sooner than the update happened!)

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Here we go again

I didn’t quite expect to be writing those words, or indeed writing on this blog again. But it seems to have come to that. All will be explained, but first an update on where I am in life. Having graduated last July with a degree in history, I am enjoying life in London with my new job at Ofcom as part of their 2 year graduate scheme. I have a wonderful boyfriend of 6 and a half months and am settling into a new church and a lovely bible study group.

However, last May I ended up with back pain during exam time which led to me seeing my GP and getting a doctor’s note for my final two exams (which were three and two hours long respectively). I didn’t use the note not did I experience any further back pain.

Starting my new job alongside moving house and a new relationship was less than ideal and some back pain started again. I was getting pretty exhausted and eventually brought up the subject with my line manager, who suggested that a referral was the best way forward and that I should use the private medical insurance provided by work. Despite her advice to use my work annual health check for the referral I decided to wait it out on the NHS and therefore had three weeks to wait for a routine GP appointment, which took place yesterday.

Perhaps I expected too much of the doctor but there were no introductions or pleasantries, which I found unnerving for a first appointment. I explained my situation and the fact I have private medical insurance and she examined me. I had forward AND backward bend tests (the latter I have never done!) and she did a whole host of reflex tests and a load of checks to ensure my nerves were working on both sides. It had probably taken less than 5 minutes but I was feeling pretty stressed by the end. This probably wasn’t helped by the fact I hadn’t had breakfast yet and this was only my second spine based appointment I’d attended alone.

The upshot of my appointment is that she thinks I have a spinal curve above the surgery vertebrae, which means a definite referral. Obviously this is what I wanted, but not quite as calm as I’d intended. Plus I have to go to the GP again sometime in the next few days to pick up my referral letter.

After a cry in the toilet, a very empty train to London Bridge and a bacon roll from Pret, I was back into work and spent the day watching TV. Lunch break was a mixture of eating my lunch and ringing AXA and Mr Lucas’ secretary, who wasn’t available. When she finally did return my call, it turns out there are no longer private appointments at Guy’s Hospital so I was given the details for London Bridge Hospital, a more daunting and unfamiliar place. One minor breakdown and almost cry on the phone later, I am booked in for my referred appointment, which is after work (convenient but also inconvenient because of the pre-appointment stress). My parents are also accompanying me, some things never change and I’ve realised how lucky I was that they could take the days off work to support me.

In case the above read like a bit of a ramble, the basic point is that I’m back on the scoliosis journey. It might be a brief one or I might be in it for the long haul, but this time the updates will be live, not written months and years later!

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4 years

Today marks FOUR years since my operation. In that time I have got 3 A Levels, 1 AS Level, 1 Extended Project, Grade 7 Violin, 1/3 of a degree and countless achievements outside of education. I have had multiple jobs, am on committee for two student media outlets and have produced more print and audio content than I could possibly list. I’ve cut my hair for charity and raised £400. I’ve met Prince Harry, seen the Queen and interviewed someone from the BBC. I’ve won a writing competition, most likely to become head teacher and Best Journalist for the student magazine. I don’t even live at home full time anymore.

Of course it’s not all amazing things. I’ve gone through periods of stress, anxiety and potential depression. I lost and painfully rebuilt friendships. I’ve been homesick, I’ve had too many arguments and there’s far too much mess in my room. I eat a lot of rubbish and sometimes I probably don’t eat enough in proper meals. Sleep can be lacking and I don’t keep up with current affairs as much as I would like (so same as when I was in hospital!). Plus I keep missing Bake Off!

But, essentially today marks another year since my operation and 4 in total. In fact it’s been over 8 years since my journey with scoliosis started and I’m excited for the years to come and writing updates for 5/10/15 years post-op!

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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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Buzzfeed: ‘Puberty Gave Me Curves I Never Expected’

Blog posts are like buses – you spend ages waiting for one and then three come along at once (broadly speaking). It is perhaps not quite that dramatic, but having been quiet for a couple of months, it’s refreshing to have too much to write about!

Today I was just generally looking at Buzzfeed, doing various quizzes and getting quite upset at the mistreatment of pasta by some internet users, when I found a link to an article. Entitled ‘Puberty Gave Me Curves I Never Expected’, I saw a image of a spine and was quite excited to see scoliosis being discussed on a popular website. Rosalind Jana, the author, is someone I was already aware of as a scoliosis sufferer but it was still refreshing and slightly emotional to read of a story much like my own.

You can read the article below, and look forward to hearing more from me very soon!

https://www.buzzfeed.com/rosalindjana/crooked-mile

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Scoliosis podcasts

Around a month ago, you may recall that it was International Scoliosis Awareness Day, when I posted about two special radio shows I was presenting to commemorate the occasion and raise awareness of the condition. As promised, you can listen back to both shows via the two podcasts below!

The first features an interview with SAUK representative, Anna Glendenning, and a mixture of music that helped me through my treatment and songs from 1981, when the Scoliosis Association UK was set up.

The second includes a selection of music from 1981 and information on scoliosis and related conditions.

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#ISAD2016

Today is International Scoliosis Awareness Day. This annual event hopes to raise awareness of the condition and, as explained in the first ISAD poster, “help people understand what curvature of the spine is and to raise funds to support people with the condition.”

In previous years I haven’t been very active in raising awareness or funds, but this year is different! I still haven’t managed to think of a fundraising campaign but I am on the radio twice today, with two shows dedicated to scoliosis on Insanity Radio 103.2FM and Coastway Hospital Radio.

The first, from 12pm until 2pm, features an interview with Anna from Scoliosis Association UK and other information about the condition, alongside songs from the 80s and other favourites from my time undergoing treatment. You can hear it on Insanity Radio 103.2FM across North Surrey and South East Berkshire, online on the Insanity Radio website or via our Android/iOS app.

At 5pm I will be on air with Coastway Hospital Radio, Brighton, talking more generally about the condition and symptoms, what other conditions are associated with it, and playing more musical favourites from the 80s in honour of SAUK’s 35th anniversary. You can listen to Coastway via the TuneIn app or online, as well as in the Royal Sussex County Hospital on Hospedia Channel 1. To get involved, tweet @tweetcoastway too!

Both shows should be podcasted and uploaded to my Mixcloud at a later date so keep an eye on my blog for more links.