In Hope Stories
Just 1% of the national research spend has been allocated to this devastating disease
Sammy Taylor, 25, grew up in Bromsgrove with her mom and three older sisters. She now lives in Hammersmith, London, having moved to the capital to pursue a career in finance. She recently received treatment for a low-grade brain tumour, which was diagnosed in 2013. Around the same time as she discovered she would need to undergo brain surgery, Sammy decided to blog about her brain tumour journey, having previously kept it secret from all but a few of her closest friends and family members.
Sammy tells her story…
My brain tumour journey started when I was 14. It was the early hours of the morning and I woke up to find my bedroom walls spinning. Gripping the edges of my bed to avoid falling off, I felt like I was on the Waltzer at the fairground. I was experiencing deafening tinnitus and severe nausea. What felt like minutes to me was probably only seconds and when the spinning died down, I lay my head back on my pillow, covered in sweat from the fear. I was confused at what had just happened and what had caused it. I decided if it happened again, I would tell someone but until then, it was an unexplained one-off occurrence.
Then, when I was 15, I was getting ready to go to a house party one evening, when one minute I was caking my face in makeup and the next I woke up on the floor, unsure of how I had got there.
“When I peeled myself off a wicker basket, that was holding my hair appliances, I noticed it was dented and I was scared by the knowledge I must have hit my head pretty hard.”
I put those two ‘episodes’ to the back of my mind and forgot about it until 2013. I was 18 and that same dizziness I experienced four years earlier, started happening on a monthly basis. I became afraid to go to sleep, knowing I might be woken by these scary dizzy spells and so I went to the doctors. The GP said it was probably nothing serious but referred me for a precautionary MRI scan. Slightly dramatic, I thought, but I went anyway and, by sheer luck, they found a brain tumour.
They told me it was low-grade and had probably been there since birth. It wasn’t cancerous and for a long time they didn’t even call it a tumour, referring to it as a “lesion in the fourth ventricle.” There was no need to operate on it or receive any immediate treatment, they said.
“Regardless of what it was, it was there, and it shouldn’t have been. I would need to get used to the MRIs that I hated, because they would become annual events.”
I mostly never worried or gave it any thought, since I was told that I probably wouldn’t ever need surgery to remove it. I had two MRIs in 2014 and both were stable. Then another in 2015, also stable. I began to relax and believe it was a chance thing to be found. I was grateful to be monitored; part of me felt like a fraud but I carried on anyway. I still experienced the monthly dizziness that the doctors couldn’t explain; they put it down to hormones, or food, so I began to note down what I had eaten, to see if there was a pattern.
In 2015 and 2016 there was still no change and I was told there would be one more MRI in 2018, after which they would discharge me if another scan showed no growth. I remember a niggling feeling of not ever wanting to be out of the system, but the doctors didn’t seem worried. I did some pretty dramatic things in those two years like leaving a relationship of six years, travelling to Bali alone, quitting a job after a day, having a career change and moving to a brand-new city without knowing a soul.
“Looking back now, either I became incredibly reckless in that time or I subconsciously lived knowing I had a brain tumour.”
But, as genuine luck would have it, that “final” scan in 2018 showed the tumour had almost doubled in volume and was now dangerously close to blocking the cerebrospinal fluid (CSF). The best solution would be to biopsy the tumour to assess the true grade and remove as much as possible.
“At the time it felt like everything stopped whilst I had the surgery to contend with. My previous worries completely faded and were no longer significant at all. I had no idea of the journey I was about to embark on.”
I am so grateful for the support I have received from friends and loved ones since I started to open up about my brain tumour diagnosis and treatment, but it can be quite exhausting to tell the same story over and over, so I decided to start a blog, called Beauty in the Brain. Aside from giving me something productive to do while I recovered, it also meant I could share updates with my contacts, without letting them consume my daily conversations.
The name came from when I told my big sister, Harrie, the news and enlisted her creative support. After a bit of brainstorming she gave me ‘Beauty and the Brain’, inspired by Beauty and the Beast. I loved it instantly and was disappointed to discover the domain was taken, until I went back to the drawing board and really thought about what that meant. I suddenly realised I shouldn’t be playing on words and trying to refer to the tumour as a beast (nor myself as a beauty, frankly!) because it’s not.
“My tumour is actually one of the best things that has happened to me – I know how this sounds crazy, so stick with me!”
So much beauty has come into my life in the form of people, opportunities and changed perspectives, as a direct result of having a brain tumour and needing surgery. Most of the time we sleepwalk through life not noticing the beauty surrounding us. Some of the best people have brain surgery, apparently, and I’ve been lucky enough to build amazing friendships with people I probably wouldn’t have met otherwise. Suddenly, ‘Beauty in the Brain’ felt not only symbolic of the fact the tumour in my head has been a blessing, but also of the fact that beauty comes from within.
In March, as a full-fledged member of the ‘brain tumour club’, curiosity got the better of me and I went to a brainstrust meetup. Alone at the bar, I was instantly welcomed over to a table of free-flowing wine by Chris and Holly. Chris looked amazing to me after his surgery and I sat like a sponge listening to his story and recovery. I was desperately seeking reassurance that I too would be ok, and quietly told him I was petrified of not being the same post-surgery; worrying about whether I would look the same, think the same or feel the same. I was so comforted to know that he had experienced the same fears pre-op. He reminded me to have faith in the journey ahead, push through the fear and trust that whilst there will always be certain situations that we have no control over, what we can control is the way we choose to think about them.
My tumour type is a grade 1 pilocytic astrocytoma. I went into surgery knowing the risks; 5% risk of needing a tube for feeding, 10% risk of neurological disability, a possibility of needing a VP shunt fitted and most alarmingly, risk of death.
“Before surgery a doctor came to shave my hair. Suddenly the scale of what I was about to do hit me and when he left the room, I had a very quick cry, a sip of water and admired the view of the city out of the window.”
I didn’t realise I would need eight different shaved patches over my head, where they stuck markers. I sat with a white towel around me as he fired up the razor and it buzzed loudly in my ear, sending shivers right through me. I had to desperately fight back tears. That sound will probably haunt me for a long time. In spite of the trauma of having my hair shaved, I remember being so happy and calm on the morning of my surgery and seeing the surgeons all laughing as I lay outside on the bed about to be taken in. Once on the operating table, I breathed deeply for a few moments before waking up in recovery eight hours later.
Happily, the surgery went well and they managed to remove the whole tumour. I was crying as soon as I woke though, telling the nurse that I couldn’t see. I was suffering a bad case of nystagmus, a repetitive and involuntary movement of the eyes.
“The nurse stroked my hair and said ‘don’t cry, it’s just the anaesthetic, but you’re over the worst of it.’ I panicked, telling them it wasn’t the drugs and that I really couldn’t see. It felt like no one believed me.”
They finally wheeled me to the Intensive Care Unit (ICU) and told my mom and sister that I was suffering some bad side effects, including facial paralysis in my right side. It wasn’t nice for them to see. I had to keep my eyes covered to prevent headaches. I couldn’t feed myself, wash myself or walk. My mom fed me and my sister read to me. By the third morning I still couldn’t see and became so scared that it was permanent. I cried so much. The nurse was amazing; she comforted me and brought me tea and biscuits, which made everything seem better. People constantly asked about my head, unsurprisingly, but that didn’t hurt at all, it was everything else. My stepdad wheeled me outside in the afternoon. I had my eyes shut but the fresh air, after days on the ward, was heaven. He later told me he was proud of me.
Some of my closest friends messaged my mom straight after my surgery saying, “you must be so relieved it’s all over.” I don’t know what they mean by “all over”. Yes, the tumour was removed and the worry of having a ticking time bomb in my head is no longer there. But in many ways, the hardest part is right now. I’m having to take six months off work to recover. I have been going for physio daily. I’m suffering with terrible fatigue. I’m unbalanced and can’t walk anywhere far on my own. I have nerve damage in my face. I’ve been feeling sick and dizzy. I have to wear an eyepatch at night because my right eye doesn’t close at all, not even to blink. To the ‘outside world’ I may seem fine because I’m posting on social media and I’m still living. But if you ask the people close to me, they would give you a different story.
“People who only see me online are blissfully unaware of what I’ve been dealing with. I am getting better every day, but it definitely isn’t behind me yet.”
After finding out I needed brain surgery last year, I designed bracelets that I wore as daily reminders whilst I prepared for the operation this summer. Now that I’m in recovery, their messages are needed more than ever. I am selling them to others, whilst donating 10% of every sale to brainstrust. It means that you can wear something that I hope will provide a daily boost, while helping others who receive this unsettling diagnosis, to get the support and resources they need.
“I recently had a post-operation consultation with my surgeon and after thinking the worst of this journey was over, I left the appointment wondering whether to think it was good or bad news, or just news.”
“There is no residual disease” – which I knew. No more brain tumour, which is amazing. But today I was told that, during my surgery, part of my brain was starved of blood supply and although the MRI that I had the day after my surgery showed that it was successful, it was too early to tell whether there would be any lasting damage. We won’t know until my next scan and follow up in January, whether I had a cerebellum stroke, nor the outcome of this.
Whilst preparing for brain surgery I was very easily able to distract myself and find moments when I could completely forget about what I was facing. But as everything is so physical now, it’s a constant reminder and so distraction is much harder to achieve. Whenever I read or watch a film, I’m either faced with blurry or double vision. If I walk too far, I’m faced with balance issues and fatigue. Whenever I cook or write or use my right arm, it is noticeably slower and weaker. Even when I talk to someone, only one side of my face moves, which can sometimes be uncomfortable.
I took a minute on the bench outside Charing Cross Hospital to compose myself before heading home and I suddenly found it impossible to remain disheartened by the situation thinking back to the last time I was there. I have hazy memories of being in a wheelchair in almost exactly the same spot, and yet here I was sitting on a bench, before walking myself home. I was reminded of how far I’ve come and how much of my independence I’ve regained.
Brain tumours are indiscriminate; they can affect anyone at any age. What’s more, they kill more children and adults under the age of 40 than any other cancer... yet historically just 1% of the national spend on cancer research has been allocated to this devastating disease.
Brain Tumour Research is determined to change this.
Together we will find a cure.