Tuesday, 11 September 2018

To Operate or Not To Operate... That Is The Question

It's been quite a while since I've specifically talked about my health on my blog, and that would be because for the last year nothing too eventful has happened. There's been no major surgeries thankfully and not many hospital appointments either, all because things have come to a bit of a standstill because of my spine. For example. I still need a total left hip replacement but my surgeon is rightfully hesitant to proceed without as much knowledge as possible about my spine. And well, things with my spine haven't moved along much in this past year since I saw my neurosurgeon for the first time.

Maybe that sounds like a bad thing to you, my referral was lost and things have just taken a long time but actually, I've spent this year being very relieved that an appointment to see him again hasn't come through the post. I've been enjoying not having to think about a looming decision that I have to make, the biggest decision of my life so far. To operate or not to operate?

Photo by Maciek Tomiczek

For those who don't know I have a genetic condition called Marfan Syndrome which has caused me to develop several secondary conditions, one which is called a Tarlov Cyst. It's a type of spinal cyst that grows out of a nerve root, mine is in my sacrum area which is a triangle shaped bone at the bottom of your spine and my cyst is about 6cm x 5.5cm, which is quite big for it's type. The cyst is the biggest reason I that need to use a powerchair with tilt and recline, the pain it causes worsens upon sitting because of the pressure placed on the affected nerves. Some days it takes 5 minutes for this pain to become unbearable and other days it can take an hour, which is why the tilt and recline functions on my powerchair are so important, they allow me to relieve and manage my pain throughout the day.

Having a Tarlov Cyst isn't a rare thing, they come up as incidental findings on some people's MRIs but they become rare when they start causing pain, bladder and bowel function problems, reduced feeling etc. There's currently only one surgeon in the UK capable of successfully treating this problem, with I think 2 more being trained up, so it can take a while to see the right person, it took me 2 years but I know for others it's been longer. You also have the added problem of some doctors not believing they can be symptomatic, even when I became a powerchair user some of my doctors were still disbelieving and it's only this year that my spinal surgeon who operated on my Scoliosis has finally taken it seriously.

Photo by Maciek Tomiczek

I initially saw the neurosurgeon last year who confirmed how complex my case is and he wanted me to see another neurologist before we started any conversations about risky surgery. Well, that referral was never made for some reason and so it took me about 6 months to see this neurologist who said they would want to do ICP monitoring prior to any surgery, which involves screwing a bolt into your skull and inserting a pressure monitor to measure how much pressure there is inside your head, so if I said yes to spinal surgery I would be saying yes to that procedure as well. That really threw me. That was months ago now and I suspected that my referral to see my neurosurgeon again (but at a different hospital) had also been lost but it took me about 2 months and going through a multitude of numbers to get through to his secretary, which I managed last week. She reckoned that I could be seen within weeks now. That terrified me a little, I'm nowhere near ready to be deciding whether to have surgery yet.

If I have surgery I risk nerve damage, paralysis, loss of bladder and bowel control and more pain, as well as there being a chance that it just won't work and a chance that the cyst will come back. If successful though surgery could lessen my back pain meaning I could sit up longer and that might open the door to being able to return to education or maybe being able to have a part time job. Writing this down, the pros and cons I guess, has really helped me and I've figured out that thanks to the quality of life my powerchair has given me the biggest things left to gain from successful surgery are potentially being able to do an open uni course or working a part time job, but is that worth risking making things 10 ten times worse? Is it worth risking the quality of life I have now? I certainly don't enjoy relying on benefits but this year I've finally experienced things that I should have done years ago, I'm the happiest I've ever been and right now, I'm not entirely sure if it's worth risking that.

Photo by Maciek Tomiczek

Of course I won't make my final decision until I've thoroughly talked to my surgeon and got all the facts, and I can also say no right now and change my mind months or years down the line. It's also important to find out whether he thinks the cyst will continue to grow and cause me problems without surgery, I don't want to leave things too late and regret not having surgery when it was an easier and less risky operation to do. As you can see, there are a lot of different factors that go into this.

The main thought that keeps going round in my head though, is this; how does anyone expect a 21 year old to make a decision as big as this? And that's coming from a very mature 21 year old.

Friday, 7 September 2018

Eugenius! The Musical | Review

Strap in and get ready to go back to the 80s as Eugenius! returns to The Other Palace for another limited run! This show is full of catchy songs, hilarious lines and heart warming moments and is guaranteed to leave you smiling, or if you're me you won't stop smiling from beginning to end!

Photo by Scott Rylander via Eugenius

Last week I headed to the first preview performance of Eugenius to see what the hype was all about, after attending the press launch earlier on in the week where I was blown away by the acoustic performances. I roughly knew the story and I knew some of the songs but I was still not sure what to expect from this show which has been propelled to success by it's dedicated fans.

Eugenius follows the story of 3 best friends and self certified geeks, Eugene, Janey and Feris who end up going on a whirlwind journey together when Eugene's comic book stories get noticed by Hollywood. You see his story about Tough Man, Super Hot Lady and Evil Lord Hector come to life in front of you combining 2 stories into one. It's also a story of love as well though and each of the 3 friends have their own paths to follow. It's packed full of 80s references including nods to Les Mis and OJ Simpson, superheroes, all things geek-y and fish people, a combination that Eugenius proves you really can't go wrong with.

Photo by Scott Rylander via Eugenius
Photo by Scott Rylander via Eugenius

This is Eugenius' second run at The Other Palace now, a small theatre that means that the set for shows can often be a little basic but they used 3 different levels to split things up and it never felt like a small scale show, they really used the little space they had effectively. The costumes for me really filled any gap that the basic set left, they tell the story and make it easy to know when there has been a location change.

Chris Wilkins and Ben Adams are the masterminds behind the book, music and lyrics and talking to them at the acoustic night you really feel that this show is their baby. At the press launch Ben talked about how they wanted every single song to be as good as the last, which is no easy task, but I really feel they have succeeded in doing this. I'm certain I could write a paragraph on every single song, because they are all stuck in my head on a loop and I was itching to hear them all again from the minute I left the theatre. There's the album on Spotify thankfully but for me it's the choreography , costumes, staging and more that make the songs so wonderful, I think you really do have to see and hear them in the show to appreciate the beauty of them.

 Photo by Scott Rylander via Eugenius
 Photo by Scott Rylander via Eugenius
Photo by Scott Rylander via Eugenius

'Go Eugenius!' and 'Don't Shoot For The Stars, Shoot Higher' have become anthems for the show, with the memorable air-punching routine of the former being performed by the audience night after night and as for the latter, fans have even gotten the line tattooed on themselves using it as an inspirational quote. Moving away from those though the ones that really stand out to me are Dan Buckley's hilarious performances of 'Who's That Guy?' and 'The No Pants Dance', the ensemble shining in 'A Little Kiss Ass' and the opening number 'Tough Man' which was the first song that Chris and Ben wrote. There really is so much more I could say about each catchy tune, accompanied by Aaron Renfree's sleek and memorable choreography and the fun 80s costumes, but you really have to see the show to appreciate each and every one.

As for the cast, we have 4 returning members but the rest are new to the show! Rob Houchen will be a familiar name for theatre fans, known for playing Marius in Les Mis and as a result I didn't see him as an obvious casting choice for the role of super geek Eugene but he had an innocence about him at times and vocally, he more than fits the bill. I spoke about how Laura Baldwin's performance of 'The Future Is Bright' at the acoustic night gave me goosebumps and her full performance in the show truly blew me away, she was so believable and really brought Janey to life. And then we have the wonderful Dan Buckley, playing Feris in the show, who had me laughing until I cried. His commitment to the role and his passion is obvious to see and he really brings to life this larger than life character that balances out the trio of best friends, his well timed inappropriate moments are a must see.

Photo by Scott Rylander via Eugenius
 Photo by Scott Rylander via Eugenius

When it came to Evil Lord Hector I'm not sure what I expected from the character, so it was even more wonderful when Neil McDermott played him with a fabulous camp-ness, like a toddler throwing his toys out the pram. On a similar note, Scott Paige had some amazing moments in the show as Hollywood talent scout Theo and he stood out whenever he was on the stage, his facial expressions and comedy timing had the crowd laughing and cheering every time. Other standout performances include the talented Emily Tierney who plays Carrie/Super Hot Lady and it was amazing seeing the debut of the new song in the show 'Hands Up', a song that clears up some of my concerns about a female character being called 'Super Hot Lady' (the feminist inside me can't help but notice this is a very male dominated show). As for the ensemble, for me it was their dancing and infectious energy that really stood out to me in numbers like 'Lex Hogan', each and every one of them were memorable and they looked like they were having a lot of fun up on stage, as did every cast member.

And that's what people keep saying about Eugenius, that it's a lot of fun and I really have to agree with that. I couldn't stop smiling during the show and my Mum, who doesn't rewatch shows as often as I do, was saying she wanted to see it again immediately after it had finished. So, trip number 2 is booked for a couple of weeks time and that's the best review I can give you really, it's so good you'll want to see it twice! Eugenius gets 5 stars from me!

On to the access and this is the part I've been so excited to write about because in my opinion The Other Palace has to be the most accessible theatre in London! Typically as a wheelchair user I can only access my seat in a theatre, sometimes I'll be able to get into the foyer area and every now and then I'll be able to access the bar but most of the time, I go straight to my seat via a different entrance to everyone else. Not at The Other Palace though. This theatre is fully accessible, I can access both auditoriums, the bar and their restaurant The Other Naughty Piglet. I don't need assistance from staff, I can have a drink before the show, I can have the full theatre experience like everyone else.

Because the theatre is so small there isn't really a bad view in there either. The wheelchair space, of which it appeared there was only one but it looked like the seats might be removable to create more, is on the back row of theatre and my ticket cost just under £15. Every now and then when the cast are on the top level of the stage some of the lights and protruding technical equipment can cover the actors heads but I really don't think you could call it a restricted view. The disabled toilet is right by the entrance to the auditorium so I didn't have far to travel in the interval, although I will say that the door is a little heavy so you may need assistance opening it. I really cannot fault the access though and I applaud the theatre for it, they really are setting the bar high for other theatres.

Eugenius! is performing at The Other Palace until October 21st, after popular demand got it a 2 week extension! Don't miss out on this spectacular show, buy your tickets here.

Monday, 3 September 2018

Powerchair Update | An Exciting Development

It's now been a year since this whole powerchair journey began for me, I had my first demo of the Quantum Q6 Edge 2.0 and started fundraising as soon as I got the quote after the NHS said I didn't meet their criteria. I truly believed that fundraising 11.5k would take me a year to do but here I am a year down the line and I've already had my powerchair for half of that time. I don't think it will ever sink in how quickly we raised the funds, and how willing to help everyone was. I'm still experiencing so many things for the first time, just this weekend me and Mum did our first ever double show day in London, something that was impossible until this year. I've done so much this year already, I'm cramming in as many experiences as possible and I am grateful everyday for the gift that everyone gave me. My life is unrecognisable compared to last year.

Of course you'll have heard all of this in my previous powerchair update, I really didn't expect to be updating you all again so soon but the most incredible development happened last week. If you've been following along then you'll know that over the past 6 months I've spent some time with the Quantum team, after they loved my blog posts about how life changing my powerchair has been. It started with a meeting and then they invited me to their HQ a few months again where we spent a day in Oxford taking some photos and then I toured the HQ and buildline where the powerchair's are built, it was such a fascinating experience getting to see the behind the scenes and we've been in contact ever since.

There were many reasons that I went for Quantum when choosing a powerchair and when recommending them to other powerchair users I always speak about how supportive a company they are, from every conversation I've had with everyone from the team I've gotten the impressive that they truly care about making a difference to people lives and shaping themselves around what powerchair users really want from their chair. I truly love my powerchair, the iLevel function has given me so much independence and has proved invaluable in social occasions recently, the tilt and recline functions have allowed me to manage my pain and even some of the smaller features like the bag clips have allowed me to live the kind of life I want to live. So, shouting about them seems the obvious thing to do. Choosing a powerchair privately, whether you're fundraising or otherwise, is a big deal and it feels like a huge responsibility and when I was researching I just didn't find the personal reviews that I wanted, so I want to provide that for others. Working with Quantum as a result of that has been a privilege.

It still came as a huge surprise when they put the most incredible offer to me a few weeks ago though. This is a 2 part exciting development though. It started with them asking me if I wanted to do some filming with them for a video about the new powerchair they are releasing in September, an upgraded version of my powerchair. Now I've gotten quite comfortable with having my photo taken over the past year but video still terrifies me and I've turned down a few TV opportunities in the past few months because I've been so anxious about it. This seemed like too good an opportunity to turn down though and I thought about how much a video from the perspective of someone who actually uses and loves the chair would have made a difference to me when researching.

It was part 2 of this that really left me speechless when the phonecall came a few weeks ago when I was in Leeds. I was apprehensive too though. Quantum wanted me to be the first person in the UK with the Edge 3.0 powerchair, an upgraded version of my current Edge 2.0. It would involve taking my seating system (that's the actual seat, cushions, back rest and electric functions like iLevel, tilt, recline etc.) off my Edge 2.0 base and transferring it over to an Edge 3.0 base. So, it wouldn't be a totally brand new chair, I'd still be keeping half of my original fundraised for chair. It was an incredible offer and every part of me wanted to accept but I was worried about how those who contributed to my powerchair would feel about this, since I'd only had my chair for 6 months.

We came up with a solution though, if I accepted then we would take my old base and add on whatever it needed to be donated to an individual or a charity. I also talked to a few friends about it, especially those who had played such a big part in the fundraising, and everyone said that without a doubt I had to accept.

So, last week I travelled up to Bicester and we changed everything over. Now it's not finished yet because my Edge 3.0 will be matte black (just wait until you see it, it's beautiful!) but the shrouds haven't arrived yet so for a few weeks I've got matte blue shrouds, which are growing on me actually! We also want to make sure my old base goes to a good home so we aren't rushing the process of finding either an individual or a charity but right now we are leaning towards putting a paediatric seat on it so that a child or teenager can experience the freedom and independence that I have. It's been incredible getting my life back at 21 years old so I cannot imagine how amazing that would be to gain so much of life back as a child or teen. It's important to me that wherever it goes it's well loved and used though, and I'll be keeping everyone updated on the progress of my chair's journey. I want all of this to be as open as possible because without your support I wouldn't have got to this point.

Once everything was changed over it was time to do the actual filming, which we did in Oxford. We managed to find some really cute accessible locations to film at including The Jam Factory (which do the best falafel wrap I've ever tasted), Eagle Vintage (the cutest little vintage shop) and Branca (you must try their Elderflower Gin Fizz!). It was a really fun and interesting experience filming with Bounce Video, it was nothing like any of the TV filming I've done this year but very fascinating to see how much work goes into a video that will be less than 2 minutes long. The idea of watching the finished product makes me cringe a little but I'm sure it will be great, and I'll share it with you all once it's live!

If I don't stop myself now I reckon I could ramble on all day about this, it's such an exciting and completely unexpected development but I'm looking forward to seeing my old chair go on to help another person. I will of course continue doing these updates because I've still got my original seating system and this new base is an upgraded version of my previous chair rather than a completely different type of chair altogether. I'm still doing so many things for the first time too and I think that is going to continue well into next year!
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