Originally written & published 27th December 2018
Well I’ve been awake since 3am, so I decided to get my musings written down. Hang tight, because this will probably be a long one!
I knew from the day I was diagnosed that I would face struggle and hardship, but I also made a promise to myself that some good would come out of this fight, and that I would try to use my struggle to help others.
I was diagnosed in February 2018 and had a translabyrinthine craniotomy three months later under Mr Scott Rutherford and Professor Simon Lloyd at Salford Royal Hospital, Manchester. Although the surgery was a success, it came with significant balance and coordination challenges, temporary facial paralysis, hearing loss and vision problems.
I was a wife and mum with three teenagers. I was a special needs teaching assistant, following my dream of setting up a photography studio, living life and doing lots of crazy things. My life changed in a heartbeat. I was no longer that fun, outdoorsy, fit person. I was now an extremely sick individual; there were some very low points, where it literally took everything I had to just get out of bed. There were days that I felt so sick that I began to lose the will to live, and there were a couple of occasions that I almost didn’t. It’s been a long journey for me!
It has been a physical fight but by far a mental battle! But looking back, it’s been an experience that has been so valuable and one that I can say has challenged me in ways that I am grateful for… A blessing in disguise, as I have become so much stronger and have grown in unimaginable ways. And trust me when I say I couldn’t have said that at the beginning of my journey! It’s certainly been a process.
I underwent intensive physiotherapy in the days following my surgery and this has continued in varying degrees since. In hospital, I could barely walk a couple of metres with two physios. That very small task felt like I’d ran a marathon – and celebrated accordingly, with a long sleep. Eight months after surgery, and I am now waiting to start vestibular rehab, which I’m hoping will resolve some of the balance issues I still have. I want 2019 to be the best year ever. I want this to be the time I take back everything my tumour has stolen physically from me!!
I remember, like it was yesterday, when every step I took was unsteady and taxing, and resembled that of a toddler walking for the first time. I remember when simple tasks such as walking down the supermarket aisles made me dizzy, nauseated and off balance because of all the visual stimulation. Even now there are times, particularly when I’m tired, that this still happens. And I remember how I had to learn to write again because my brain had forgotten how. The list could go on and on.
But here is my message: If you didn’t know me, you wouldn’t know anything about the physical adversity I have faced over the past year just by looking at me. You wouldn’t recognise the emotional pain I’ve experienced that accompanies the trauma of having a brain tumour. People can’t see the hole in my skull or the scar from the fat graft they took to fill that hole. They can’t see the huge scar that is now covered by my hair. You can’t see deafness. You wouldn’t know that only eight months ago I was relearning to walk and had very little movement in the right side of my face.
And today you would not recognise that I continue to fight back and challenge the challenges of balance and hearing loss that come with my brain being fiddled with, from a severed left balance and hearing nerve. But the struggle has been part of my story and I continue to charge forward persistently, to push my limits, dreaming big and believing I can reach beyond my grasp to achieve anything I set my mind to!!
As much as I hate to admit it, in some ways I’m definitely not the same as I was before surgery. Call it a new normal if you will. I feel like I mourn the loss of the old normal; I still have to work extremely hard at balance tasks. It still takes every ounce of effort! And if there is anything on the floor, I will no doubt be the one to trip and fall over it! And my face, well it still feels different and doesn’t look quite as it did before, although others wouldn’t notice this. Then there is the awful fatigue…
Now here comes the craziest part of the whole journey! Since my surgery, I have accomplished so much more than I ever thought possible. When I was lying in HDU hooked up to all sorts of machinery, if someone told me that within 6 months I’d be back out there, enjoying being in the hills and mountains, getting my business back on track and now having the courage to approach influential people to help me develop it further – and wait for it, undertaking a skydive from 15,000ft for charity I probably would’ve cried!! And I definitely would not have believed them. It would all have seemed like a cruel joke. I remember being offered a walking frame to take home when I left hospital – but I managed to walk into that hospital unaided, and I walked out less than a week later, having practised walking around my room when the nurses weren’t looking!
I’m currently working on my next writing project, How We Rise, but I need your support. You can find out more here.