When I look back on my life in a few decades time (optimistic but hopefully achievable), 2017 will show itself to be a vintage year.
It became a year where my work with Wyburn-Mason syndrome and Acromegaly took me to new places (both physically and mentally), a year where I met some amazing people and forged new friendships and a year where the book and everything surrounding it continues to grow.
Let’s have a look back, shall we? Yes, lets.
Audio Book: Done
My biggest mission of 2017 was to get the audio book edited and released. I’d spent the early part of 2016 recording all the chapters and had sat on the audio files for nearly a year. The project was just too daunting: edit in excess of 50 chapters, work in all the sound effects to tell the listener when to look at a picture or document or video, send them off for mastering and then get them up on Audible. I had given the files for someone to edit but they just didn’t sound right and I needed to get every breath, intonation and comedy moment just right. It’s hard being a perfectionist.
So for the first three months of 2017 I worked my little socks off to edit each chapter and by March it was ready to go. I had given it to a couple of friends to ‘proof-listen’ and the feedback was positive, so I took a deep breath, uploaded the files to ACX and waited for approval. And a few days later – hurrah! Me, Myself & Eye: The Audio Book was finally available. All twelve hours of it.
Towards the end of 2016, The Pituitary Foundation kindly asked if I would be a Volunteer Ambassador. This role – one of two – was designed to help support and promote the foundation and to raise awareness of conditions surrounding the pituitary.
And it was a real surprise when – in early January – I was asked if I could tell my story to a team of Rare Disease specialists at Pfizer as part of Rare Disease Day (February 28th). And so with my laptop and a box of books (hey, you’ve got to be optimistic) I made my way down to their headquarters, excited at what lay ahead.
The presentation went better than expected. Everyone laughed at the right moments, everyone listened when I read a couple of sections from the book and – best of all – the Rare Disease team bought all twelve of my books in one go, so the team could better understand what it’s like living with a rare disease (or two). I couldn’t stop smiling.
And then a few months later I was asked by the Foundation if I could take part in an Acromegaly awareness campaign for Novartis, to help nurses understand the complexity of diagnosis and what it means to live with the condition. Myself and the excellent team from Entirety Labs spent the day filming. Here’s hoping the end result makes a difference to the amazing nurses working around the world.
1st UK Acromegaly Meetup
My taste for advocacy and supporting those with Acromegaly had now been fully whetted, and it didn’t take long for me to think that a ‘meetup’ for those living with Acromegaly would be a good idea. I set about sourcing a suitable location and made the announcement that on 1st July, the UK’s first Acromegaly Meetup would be taking place at the QEH Conference Centre in Birmingham.
Of course, organising it is one thing; getting people to come is another! I had spoken at length with various members of a UK Acromegaly support group on Facebook who helped come up with ideas for content and structure and so – once announced – word started to spread. With a couple of weeks to go we had over forty people signed up ready to attend. Wow. I never expected it to be quite that popular!
And what an amazing day it turned out to be. Firstly – and most importantly – it was a safe place for people with Acromegaly to meet each other, swap stories and feel like they’re not alone. And for some of us, it was the opportunity for us to me in ‘real life’, having spent so many months and years chatting through the Facebook group. Indeed, I finally got to meet one lady who I had been chatting to for over ten years! That was quite a moment.
The day was also about knowledge sharing too. We had speakers from the Endocrine unit come and talk about what to expect during surgery, what happens next if the tumour isn’t removed and other key subjects. Patients had a chance to ask questions too and I think the experts found it just as invaluable. Amazingly, some in attendance were having surgery the following week; I can only imagine how liberating it must have been to share that experience and to know everything would be OK.
It was an amazing day with some amazing moments. I don’t think anyone will forget Lauren telling her story and – thanks to the magic of Facebook Live – over 1k people have heard her story too. That’s advocacy right there.
We’ll be organising another meetup in 2018. Stay tuned.
‘I’ve travelled the world and the seven seas…’
OK – maybe not all seven, but 2017 really stood out as the year of travel and adventure.
In July, a message appeared on the Acromegaly Support group from a lady running an Acromegaly Awareness event in Vancouver. They were looking for advocates who had worked in raising awareness about Acromegaly over the past twelve months to apply for a scholarship to attend the event. All flights and accommodation would be paid for, and the winner would receive an award too.
I looked at the post and pondered. Canada? Blimey, that’s a fair old journey. But Canada? I looked at the requirements again and started to jot down all the things I had done over the past year: Pfizer, Novartis, the UK Meetup, book talks, interviews. I felt justified in applying and so I did.
And a few weeks later I received the amazing phone call to tell me that I had been chosen! Unbelievable! On the phone I asked if it was possible for me to talk at the conference too, to give a little something back. I also asked if I could bring a few books to sell. I was told that was OK too. Well, any opportunity to make Me, Myself & Eye an international bestseller can’t be missed.
For those of you that follow me on Facebook, you’ll know that that trip was one of the most eventful, ever. I have written an extensive blog about the whole experience, but annoyingly the software I wrote it on crashed, and over 4,000 words have been lost and, as yet, I can’t find the strength to re-write it. But I will. In a nutshell, however, I suffered some of the worst nosebleeds I have ever had. They started on the morning I was due to collect my award and when I turned up to the conference, late, drained and barely able to talk, I knew this was going to be a challenge.
However, as is the way with our community, everyone was incredibly kind and sympathetic and I was helped out immensely by the huge Canadian breakfast on display (Maple Syrup bacon is a godsend). Later that afternoon I collected my award and was incredibly humbled in doing so. That night I slept like a baby, and it was a good job I did: I was giving my presentation the next morning.
I awoke feeling human. No blood, no bathroom resembling ‘The Shining’ and I burst into the conference centre ready and willing to go. We had three patient stories that day and we were all incredibly moved by Santino’s pin-point accurate presentation about his diagnosis and treatment. There was barely a dry eye in the room. How to follow that?! Well, with lots of rude jokes and laughter. My talk lasted nearly an hour but the standing ovation at the end made all the blood and hard work worthwhile.
Conference over, I met with a friend who had moved to Vancouver and he showed me some of the sights. As I was getting ready to leave his apartment, I bent down to do up my shoes and…blood. That familiar trickle had started again and I went to his pristine white bathroom to try and stop the flow. But it wouldn’t stop, and an hour later his bathroom looked like a Jackson Pollock artwork, not helped by his inquisitive three-year old daughter wanting to know what was going on. I asked if there was a hospital near by. There was: three blocks away. And so I spent the next few hours sitting in a Canadian hospital, waiting for my nose to be cauterised. Did I have insurance? I didn’t know – I hadn’t booked my tickets and didn’t think to check. If I didn’t it was going to cost me $1500 dollars. I didn’t care; I was flying the next day and it needed to be fixed.
We finally left the hospital around 9pm and Chris drove me back to the hotel. In an effort to be cautious, a huge tampon had been stuck up my nose to stem any further bleeding before or during the flight. I looked ridiculous but I didn’t care; the bleeding had stopped and that’s all that matters. However, the next morning I woke up with clear white liquid dripping from my nose. Uh-oh. Was this just snot or was it the dreaded CSF leak (spinal fluid leak) that us Acromegalics are all too familiar with. I stumbled down to breakfast to see a row of concerned faces and asked someone to check: they thought it was CSF too. Cue a whirlwind of panic and organisation as we tried to figure out what to do next and thankfully Deanna, the conference organiser, drove me to the nearest hospital to get it checked out. It would cost another $1500 but I didn’t care; this was getting to be serious now, and I needed to know I could fly.
Mercifully the hospital confirmed that it wasn’t a CSF leak and gave me the all clear to fly. But I still had to keep the tampon in until I got back to the UK. Tired but relieved, I said goodbye to Deanna and her husband, thanked them both for their incredible support and help that morning, and waited at the airport for eight hours until my flight home.
Back in the UK, I took the train from Gatwick to Bristol and immediately went to the BRI to get this checked out some more. My head hurt and my nose was still dripping. I knew it wasn’t a CSF leak (which, if infected, can cause Meningitis [which I had caught back in 2007!]) and – once the pack was removed – my headache stopped, and so did the dripping. I eventually got home around 11pm that night, my Canadian adventure finally over.
I learnt a few things from that experience. I learnt not to drink the free wine on long-haul flights. I learnt that it’s important to get up and move around, to keep the blood flowing. And I learnt – not for the first time – that the knowledge our community has is invaluable.
Thank you Canada. I’ll never forget you.
From Cambridge to Belgrade and Back Again
Aside from the minor hiccups, Canada gave me the taste for travel and the opportunity to tell my story in as many situations as possible. And a few weeks later I was on a plane to Belgrade, having been asked to tell my story as part of the Rarebase Rare Diseases and Orphan Drugs Global Forum 2017.
This was a very different experience as almost all of the attendees there worked within the field of pharmaceuticals and were interested in the task of finding cures and supporting the treatment of rare disease. I can’t deny that some of the presentations were a little over my head (not helped by the fact that I had barely spelt due to my Air BNB apartment having a heating system that kicked out earth-meltingly hot heat at 4am) but when it came to do my presentation – as ever – I had magically woken up and it was great to tell my story to a captive audience. The feedback after was again very supportive, and it’s great to hear that those working in the industry want to hear and benefit from stories from those like me, living with rare conditions. Near acquaintances were forged and some potentially exciting opportunities in 2018 too.
Prior to Belgrade, I had also attended the Cambridge Rare Disease Network Conference in Cambridge. This was a brilliant event, full of people that worked with advocacy groups or had indeed set up their own. Attendees were asked to submit posters about their conditions (I submitted two) and I was even selected to talk for five minutes about my journey.
And finally – towards the end of the 2017 – I attended a small gathering for people with AVMs (arteriovenous malformations). Held in London, this was an amazing experience and a chance to hear first hand from people living with this difficult condition. My AVM has been with me since birth and – with the exception of the blindness in my left eye – has caused me very little trouble, so it really was an eye-opener (excuse the pun) to hear about symptoms, treatments and the day-to-day impact it can have. Sometimes I feel very, very lucky.
The AVM side of my life is something I don’t focus on so much because Wyburn-Mason syndrome is so incredibly rare. But I’m hoping to address that over the next twelve months.
Speaking of which…
2018: What Happens Next?
It feels like 2017 can’t be topped, but I’m going to give it a good go. Hopefully I’ll get further opportunities to talk at conferences and events. I’m also still toying with the idea of putting on a one-man show at the Edinburgh festival, based on my presentation (though enhanced for the stage). I also really want to focus on releasing more music this year, something that’s been seriously neglected since the release of the book.
(And I haven’t even mentioned the time I met Sue Perkins or the fabulous book events that I’ve been to. It really has been that busy.)
Perhaps most of all, I want to see people continue to talk about living with rare conditions; see people helping each other out through advice and guidance on social media; see continued work on earlier diagnosis for conditions like Acromegaly. And – fingers crossed – continue to see people getting something out of my story.
Thanks for sharing the journey with me. Let’s make 2018 amazing.