Life; brain surgery, anxiety, a pandemic and lewy-body dementia...
It's been a while since I last wrote on my blog. Today seems the ideal time though, to share another post; following World Mental Health Day (10th Oct), World Cerebral Palsy Day (6th October), and it being Breast Cancer Awareness Month too. All of which I've posted about on my social media channels.
But, it's also coming up to my 27th birthday (12th Oct), so I want to share some of the experiences I have faced during my 26th year of life in a raw, honest and open way...
I'll be honest, it is not all happy, smiley photos, so be warned! I share a lot of my life on social media, it's my outlet and my way to cope with what life throws at me, but there's only so much you can write in a post on Insta or Facebook. (I also share on social media, in the hope that it may help others know they are not alone).
Therefore, in this blog I will *attempt* to share just what it has truly been like to go through, what I can only describe as; the most scariest, worst times of my life to date...
So, I'm going to start by going back to September 2019. I'd just returned back up North following the most stressful Summer. My wonderful Mum had been diagnosed with breast cancer in July. I went down as soon as I could in August, and after having a mastectomy mid August, we were given the delightful news that Mum was cancer free in early September.
And so as I said, I returned back up North for a new year of work and adventures, albeit feeling anything but refreshed after that Summer. I had just submitted my Masters final project;17.000 words, a show reel and a website, all of which I was writing and editing whilst watching the most strongest person I know go through this battle with cancer.
But the day before I returned home, I found out that I had passed my Masters! We were able to celebrate together on my final night at my parents, full of smiles and laughter. And so I returned feeling more positive and hopeful things would continue to improve.
The first few weeks back up North were positive and enriching. I was in a good place, surrounded by my best friends where we spent time together rehearsing for my EP launch and our final show of our tour Twitch. My 26th Birthday was spent with my best friends who took me out for food, The following day I held my EP Launch at Thought Foundation in Birtley, it was a small intimate gig, but I was able to simply share my passion for music and launch my EP surrounded by my best friends. It was simply a wonderful birthday weekend.
Following this, I then had the amazing opportunity to represent Sage Gateshead at the 25th National Lottery Awards. Sage Gateshead had won the Best Art, Culture and Film Project. We were filmed and interviewed in late September and were invited to London to receive the award and record for the TV show in October.
We stayed at the Hilton Hotel in Kensington and were treated to a delightful evening buffet before getting all glammed up ready to go to the awards ceremony. It was by far one of the best nights I have ever had. I was also lucky enough to be chosen to go up to collect the award, which was presented to us by Rick Astley! Quite a surreal moment, but one I will never forget, especially the photo we had after receiving the award where I told Rick to keep his glasses on so we would all look the same!
I'll be honest, I don't remember much of the night afterwards, it was spent celebrating with quite a few bottles of wine at the after party, amongst many well known celebrities! Such a surreal moment to be told by many of them that when they saw my music video they said to keep doing what I do; I have a great future ahead. What I do remember though, is missing the bus back, getting a taxi and then spending more time in the hotel bar drinking with the Northern Ireland winners!
The following morning, I found this picture, accompanied by a very sore head! After returning to the North on the train feeling like death warmed up, I was then able to relax before returning to work. I had such an amazing week I was so positive; I'd celebrated my birthday, released my EP, been to the National Lottery Awards, I was smiling from ear to ear, surely nothing was going to stop me feeling like this!?
But then it all came crashing down around me once again...
I went into work as normal, saw my colleagues, caught up and then out of nowhere my anxiety came on in full force, I don't really know how to describe it but it was like a tidal wave just washed over me, My friend, band mate, colleague, could see something wasn't right. Why was I feeling so bad about a job I use to love? I doubted my ability so much, After a chat, I was sent home. That day I left with tears rolling down my face, I felt totally hopeless.
Little did I know that was just the start of one of the most challenging time I was about to face and the last time I would enter Sage Gateshead for work...
After getting home, I fell asleep for hours. I was exhausted, I had an empty feeling inside; like I was looking in on someone else's life. It was a bleak time.
But then that afternoon the post arrived, I opened it in my onesie, lying on the sofa... It was my official results for my Masters, I would be graduating with a Distinction! I couldn't believe it, after everything I had been through, I couldn't have asked for a better result. There really was someone looking out for me that day.
After a weekend of self care and positive vibes, I was ready to start a new week. I was off to Birmingham for the Fast Forward Festival, where myself and 6 other young musicians (with disabilities) who form the first FLOW Collective, were discussing all things music and inclusion, performing, and sharing music together with industry professionals I was lucky enough to be chosen to speak on the panel and close the festival with my show Twitch, which was to be the final show of my tour I received funding for in 2018.
My band arrived and we unloaded the van and sett up for Twitch. After a few technical issues we were ready to go. After the previous weeks experiences, I wasn't feeling too confident in myself, anxiety was simmering somewhere inside me, but as soon as I stepped onto the stage and began to introduce my show, I knew I was going to be okay. I was laughing from my belly once again, smiling for ear to ear and all the worries I had, disappeared. I was back.
After the show it was back to our hotel and the bar where we all celebrated a bit too much! We all had to get up early the following morning to drive back to the North East as some of us has work that afternoon. We met in the restaurant and I'm sure some of us were still inebriated from the night before... The drive back was not my greatest experience I have to say!
I'm sure the bacon sandwich I bought at the service station was trying to make a reappearance at some point along the journey.
But after a sleep and lots of water, we were back! We all unloaded he gear, returned the van and some went off to lead their sessions.
I returned home where my parents arrived later that day to stay with me for half-term and my Mum's birthday. The week started off great but as time went on, I noticed a change in my Mum. My Dad had mentioned she was having some challenges over the last few weeks, but to experience it first hand was heartbreaking. There were times where my Mum became really confused and upset, we had no idea what was truly going on. This was so hard to take in and see the person I love struggle everyday. After a lovely but sometimes scary week together, my parents returned home.
I was not coping too well with anxiety and was stressed at seeing the deterioration in my Mum, after talking to my Dr, it was decided that I would be signed off work until the end of the year. After getting signed off, I too went south to stay with my parents, be surrounded by my family and spend time with my Mum, doing what I could to make things better for us all.
Once home, things began to deteriorate again, my Dad and I knew something wasn't as it seemed. My Mum was now experiencing hallucinations amongst other symptoms. Earlier in 2019, we were told Mum had Parkinson's disease but as time went on, there was more to it than that. We were back and forward trying to figure out what was happening. There were many appointments and different drugs tested. In the end, it was concluded that my beautiful Mum had in fact now got Lewy-Body Dementia (LBD).
LBD is one of the most common forms of dementia, alongside the more well known type ; Alzheimers. It includes the typical symptoms associated with dementia, of forgetfulness and confusion, as well as other symptoms such as hallucinations, tremors and unsteadiness, amongst others.
During the uncertain and often stressful times there were also moments to celebrate. This included the week that the National Lottery Awards were aired on TV, and the same week I graduated from my Masters. We travelled to York after watching the NLA the previous night. We had rented a house in the city centre, an ideal location for graduation.
Graduation day was a wonderful day, albeit freezing! I graduated in York Minster and followed the day by celebrating a lot with food and drink! I was so happy to have my parents beside me to see me graduate, as well as my partner in crime - Tony, who also graduated with a distinction!
After a wonderful week in York, which also included the International Centre for Community Music (ICCM) annual conference, where I presented my MA research Much Taboo About Nothing, it was back up North for two final weeks before heading south for Christmas.
I was still struggling with anxiety on and off, especially with the challenges my Mum was facing and what was ahead for all of us. I met up with my best friends one last time before Christmas and had a meal out. The next time I would likely see them would be in January when I was due to have my brain surgery!
I went home mid-December and that day I got the call from my specialist to say that the date for my brain surgery had been set. January 7th. It was all becoming so surreal, Mum had dementia, I was having brain surgery, I was battling anxiety a lot. It was a stressful time but we did our best to enjoy every moment together and not worry too much.
Just before Christmas I went on holiday to Mexico with my cousin, it could not have come at a better time. It was the perfect escape to relax and come to terms with the fact that I would be having my surgery 4 weeks on. It was such a beautiful place, and I had a wonderful time! (Except the Whale watching boat adventure, I do not have sea legs!)
We landed back in cold England and after a day in a hotel, drove to Devon where we would be spending Christmas at my Auntie and Uncle's house. Christmas was different to what I'm use to, we weren't at my parents house or with my brother, sister-in-law and nephew, but it was still absolutely lovely. Being by the seaside and taking a Christmas day walk to the beach was wonderful. It was full of laughter and food, lots of food! But above all else, it was everything, just to spend Christmas with my parents and family together, especially after everything we had been through.
We had a fairly quiet New Year and in early January we drove back up north for my upcoming brain surgery.
Now we're into 2020 and it's not been the easiest ride for any of us right?! But, this is what I experienced. Some of the below may be hard to read for some, but I think it is important to share what life has been like for me and my family.
At the beginning of January I had the final tests and appointments to check everything was ready for my brain surgery. The hospital tests were all fine, minus the ECG result which was quoted as 'the best possible result, patient has tremor'. I still had a faster than usual heart rate but I guess it was also quite a stressful time too.
In the few days leading up to my surgery there were some conversations that I don't think any parent or child wants to have. We knew the risks involved and the possible outcomes that could occur if things didn't go to plan. With this in mind, Dad and I filled out forms to say what my wishes were if things didn't go right...
Being 26, two days before brain surgery and writing what you want to be done to you if you became brain damaged is not something I would wish on anyone. Not to mention discussing with your Dad the day before your operation where you would like your funeral to be and your final wishes...
Yes, I briefly planned my funeral the day before my brain surgery. It was becoming very real.
The day of my brain surgery, I had barely slept, not surprising really. We had also decided that I would make my own way into hospital as it would be too much and too stressful for us all to get Mum up and ready at 6am to sit in hospital all day.
So at 7:!5am, I said goodbye to my parents, Mum was in bed and wasn't too aware of what was going on. I hugged and kissed my Dad and said see you later, smiled, and I then went to the bus stop to get the bus to hospital.
I arrived at hospital around 8am, and went to the ward assigned for me. I did all the required forms and talks and was told I would be first into theatre. So I got into my gown, talked through everything with my specialist, anaesthetist and surgeon and then... It was time to go...
The last memory I have is lying on the hospital bed, breathing through the mask and slowly falling asleep from the anaesthetic.
6 hours later, I came round. My neurosurgeon was there when I woke and asked me, who I was and what I just had done, I answered correctly, and she said everything has gone perfectly, see you soon!
Relief washed over me, I had done it. I had had deep brain stimulation, which consists of a battery in my chest, wires up my neck and two electrodes in my brain. I was eventually transferred into my own room where I began to fully come round. I don't remember much of this time, I was pretty drugged up!
Soon after though, my parents arrived and I was sat up smiling at them. After reuniting with hugs and kisses, it was time to let everyone know I was okay. We phoned family first and I said 'I am a robot!' on the phone, which brought many a laugh to us all.
Once family were updated, I shared a simple post on Facebook to let everyone else know:
I.am.a robot!
Brain surgery = smashed it!
I did it!
The response was unimaginable, I have never felt so loved and I was ready to make the most of everything that was to happen next. This was the start of a whole new way of life for me and I was ready! If I can get through brain surgery, I can get through anything!
For the next two days I was kept in hospital, my best friends visited me and were fascinated by my surgery scars, they took pictures and felt it, it was quite weird!
With 8 incisions all over my head it was quite painful to sleep but I was able to get some rest. I still couldn't believe I had done it. Coming home was great, I was spoilt with jaffa cakes, cards and messages for days, not too mention the T-shirt my brother got me!
Recovery was pretty easy, just lots of chilling out on the sofa and sleeping! I wasn't allowed to wash the top of my head for a week though, so I had to fashion a shower cap! Also as part of my recovery I needed to have injections every night to prevent DVT, which proved delightful for my Dad who got to inject me every night!
Not long after I was up and about and so my parents went back home. I visited family at the end of the month and got to celebrate my little nephews birthday, who I hadn't seen since pre-Christmas! After a lovely visit home, it was then time to get back up, go back into hospital as my scars all seemed to be healed over, and turn on the stimulation for the very first time.
I knew it wasn't going to be plain sailing, but I was not expecting it to be as scary as it was. I attended the hospital with two of my best friends. We went into a room with my specialist and he connected me to the tablet, which he uses to control everything.
He told me what I may experience but I still wasn't expecting it to be so sudden. After turning each electrode on I began to experience symptoms. This included feeling exceptionally dizzy and nauseous. As it went on, I started to lose my speech and was unable to control my mouth muscles or produce any coherent sound. It was terrifying. Then my head began to involuntarily turn to the side whilst my eyes were blinking and seeing blurry dots. This seemed to last an eternity, but I believe it was only about 15- 20 minutes. After testing everything and my brain settling down, I was told how to control the stimulation myself using the remote. After leaving the hospital my friends and I started laughing about what I had experienced and they compared my head turning to the scene in the Exorcist!
Over the weeks I was turning up the stimulation and noticing benefits, I was getting more energy and starting to feel myself again. I went home once again to spend time with my parents and celebrate Dad's birthday.
Then we hit March... The time the whole world changed.
I had noticed my chest wound was not looking too great and so I called my specialist and was called in, after taking blood, a swab and other tests, I was told it looked like I had developed an infection in my chest. We weren't sure whether it was the wound or the battery. So I was put on antibiotics. After weekly visits, things still weren't looking great, it wasn't clearing up as it should be. I was getting very stressed.
The week the country went into lockdown I still had an infection of some sort and so I was unable to go home for Easter and see my family. Overall, I spent 3 months on antibiotics and had weekly visits to the hospital, it was a very depressing time. I couldn't see friends or family. My chest was not healing at all. I got the all clear 3 times, the first 2 times the infection came back again and so I was not feeling too hopeful. But, after seeing my surgeon and specialist once again they confirmed that it had finally healed over, finally. Unfortunately the scar is whats called a hypertrophic scar so it is raised and thick. I'm slowly getting use to the appearance of it though! My scar reminds me of what I have been through though and what I am able to do since my surgery.
After 4 months of living alone, barely seeing anyone at all, I was finally reunited with my beautiful family and it never felt so good to see the ones I love to most!
I spent a month staying with my parents and seeing members of my family, It was just what I needed after everything I had been through. I was in a good place, coping well, my anxiety was under control and I was getting better and better by the day. I began running with my sister-in-law, and just enjoying everything again.
I was back on track and turning the stimulation up slowly and still noticing less twitching, and after 4 years I was finally ale to stop taking my tetrabenazine - medication used to reduce my hemiballismus. Coming off these meds have done wonders for me, I was able to become more alert and need less naps. It has also helped with my mood, because tetrabenazine can cause depression which was one of the factors that caused my initial depression back in 2016.
After a wonderful Summer, especially compared to last year anyway! I returned up North along with my parents who came to stay for two weeks. After two weeks together Mum and Dad went back home and I was back to living by myself...
In early August I was back in hospital for a check up to see how I was doing off my medication (tetrabenazine). It was a fairly positive outcome, as I was still increasing my stimulation my speech was variable day to day.
Mid-August though, I experienced severe side effects from turning up my stimulation, and so I was succumbed to the sofa whilst I recovered. A few days later I developed an ear infection. After going to the Drs and getting more antibiotics I was exhausted once again. The following day I ended up in A&E due to severe pain in my head and neck from my ear infection. It was spreading and so I was prescribed morphine and stronger antibiotics and steroids.
I was fed up of feeling so ill this year, I couldn't hear anything, I was super dizzy and getting stressed out quite a lot. Eventually I had to turn down the stimulation to a fairly low level again whilst my ear recovered.
I spent many days lying on the sofa trying to sleep; without lying on my infected ear on the left, and without lying on the wire/wire connector on my right. It was rough, I saw nobody for weeks, I was heading on a downward spiral once again.
After a month of lying on the sofa, not really doing anything, I finally got my hearing back and started to feel myself again! I saw my friends again and began getting my life back on track... or so I hoped...
Once again, this time in September, I was back in hospital. I had noticed over the last few months that there was more stiffness in my right hand, it seemed to be spreading. So I saw my specialist and we discussed what was going on. It was a mixed outcome, more positive than negative. My surgery has definitely helped me reduce my twitchy movements. Regarding the stiffness, it is most likely the dystonia slowly spreading and it unlikely to go. I kind of knew this would be what they said so it wasn't too much of a negative, but was still hard to come to terms with.
But I intend to do what I can with the movements I have and continue to play piano to the best of my ability and simply do what I love... Music
In late September,, due to the pandemic, everything work wise was now online. Having been off for a year due to everything, it was a whole new world to go back into. I delivered an online inclusive training session on zoom which was my first bit of real work in a year. It went well and I was happy with the outcome and it gave me confidence to know I can do more and when the time is right and I'm fully back to myself, I will get back into it...
One thing I haven't touched much upon in this blog so far is my Mum and her battle with Lewy-Body Dementia. It sucks, a lot. My Mum has always been the person I would call when things went wrong. To see the person you love face this awful disease is heartbreaking. When getting updates on how she is, and hearing that your Mum is so upset due to the 'strangers constantly in the house' makes you feel helpless. Hearing your Mum cry and not be able to talk to you, is by far the worst thing I have experienced.
There is no cure for LBD, just like there is no cure for my disabilities, but one thing my Mum always says is 'you'll live' and she is not wrong! Despite everything thrown at us as a family we are still here, and when we can, we laugh together, share a smile together and keep going, together.
Life is not easy, there will always be good and bad days, my anxiety will always be around but I can get through it. I will always have my disabilities but I have a much easier way of life since surgery, and I'm thankful.
I hope that my 27th year of life is slightly less crazy than my 26th though! What lies ahead is uncertainty, but I look back on all have achieved this year, and know I can do a lot more than I thought...
And I will always KEEP SMILING! <3
