In Hope Stories
Just 1% of the national research spend has been allocated to this devastating disease
Here’s Sara’s story…
When the consultant showed me the image of my brain from the MRI scan, you didn’t need to be a neurosurgeon to realise that the white, golf ball-sized ‘blob’ shouldn’t have been there. I didn’t know what it was, whether it was low-grade or not, or what would happen next. Of all the things I suspected could’ve been wrong with me for the past few months; shingles, Lyme disease, lupus, multiple sclerosis – I had even been told I had a vitamin D deficiency – a brain tumour wasn’t anywhere on the list. He told me it was a grade 1 vestibular schwannoma, also referred to as an acoustic neuroma. For a brief moment the diagnosis came as a relief, as I was beginning to think I was going mad, and making up the symptoms that had been plaguing me for weeks. Neil (my husband and best friend) arrived minutes later and after a chat with another consultant he drove me home. We were both stunned, worried and upset.
“I was angry this had happened to me, and ashamed that I was about to ruin things for everyone when I told them”.
At a later appointment I discovered that the tumour was cystic. It was growing inwards on my hearing and balance nerve and compressing my brainstem. My consultant neurosurgeon Mr Scott Rutherford and consultant ear, nose and throat (ENT) surgeon Professor Simon Lloyd, agreed it would be beneficial for me to have intratympanic gentamicin therapy prior to surgery. Gentamicin, an antibiotic, is toxic to the balance nerve and so the drug, administered with injections through the ear drum (I still cringe at the thought), damages the nerve and stops it from functioning. The gradual loss of the balance function is generally more tolerable than the acute loss of the function at the time of the operation and so has a beneficial impact on recovery.
So, at the end of March 2018, accompanied by my amazing friend Di, I had my first treatment. It wasn’t the most pleasant of experiences. The gentamicin was administered by way of an injection through my eardrum, into my inner ear. I felt it hit the ear canal. There was pain for a couple of seconds, then it was just a case of lying there for 30 minutes, to allow the drug to settle in. This treatment was repeated twice in the run up to my translabyrinthine craniotomy, which was due to take place at Salford Royal Hospital on 12 May 2018.
Since I’d started my gentamicin injections, I’d been feeling progressively worse. My resting pulse, usually around 55bpm, was now a minimum of 108bpm at rest. My blood pressure was high. I was exhausted. I felt sick from the moment I woke up, until the moment I went to bed. Sleep was my only respite from this nightmare. My mum, in her seventies, was my carer during the day, as I could barely get out of the bed. Andrea and Helen, the Manchester Skull Base Unit nurses at Salford Royal, were amazing. They liaised with my GP and arranged prescriptions for every anti-sickness medication that I could possibly take. Sadly, nothing seemed to work. One particular morning I woke feeling far sicker than normal. My friend Sahra popped round that afternoon to help me complete a claim form for Personal Independence Payments (PIP). We completed about two thirds of the form, when I had to stop as I felt so unwell and so she left. Almost as soon as she had gone, I was violently and uncontrollably sick.
As much as I didn’t want to go to my local A&E, as I was being treated at Salford Royal, I knew something really wasn’t right, so Neil drove me to Countess of Chester Hospital, in Chester. After a 40-minute wait, I was seen by a triage nurse, who spotted that my left pupil was extremely dilated. I waited another 15-20 minutes whilst a side room with dimmable lighting was prepared for me, as I was now extremely photosensitive. I was then given intravenous (IV) anti-sickness medication and much needed pain relief. I was then sent for a CT scan.
My results came back at about 1am and the consultant came in with a worrying sense of urgency. “You have a bleed in your brain, so we’re blue-lighting you to The Walton Centre in Liverpool”, she announced. Barely able to string a sentence together, I begged Neil to tell her that I didn’t want to go to Walton, as that wasn’t where I was being treated. The consultant wasn’t budging from her decision. She’d already spoken to Walton, my nearest neuro centre, as it was life-threatening. And so, in the early hours of Sunday morning, we headed over to Liverpool. When we arrived, we were taken straight to a ward full of mostly sleeping patients. I remember one elderly lady snoring rather loudly. It’s funny the things that stick with you! A lovely nurse came over and took my details.
“I was given a high dose of steroids to try to control the bleed and any swelling, and told that as it was a matter of life and death, they needed to remove the tumour.”
Neil went off to call the team at Salford. I kept the nurse talking as long as I could (even though I just wanted to sleep) and he made calls and sent emails. Within 20 minutes, the consultant returned, and announced abruptly that Salford had requested that I was immediately transferred to their care. Result!
On arrival at Salford, some 30 minutes later, we were greeted by the on-call neurologist. He reassured me that I would be well looked after, my pain relief would be managed and I would be admitted for close observation. He said that I could stay as long as I felt I needed and that I shouldn’t worry. The relief was palpable. The steroids seemed to do the trick as the bleed stopped and, after a chaotic weekend, I went home a couple of days later. I was advised that the best course of action would be to sit tight for the next two and half weeks, to allow the inflammation to reduce and to get some strength back ready for my surgery.
In the weeks that followed my haemorrhage, ‘life’ if you could call it that, had become intolerable. I was sick of being sick. I was sick of being dizzy. I was sick of everything spinning. I was sick of being tired. I was sick of people trying to force me to eat. I had the most awful feeling in my head. What’s more, I was terrified about my impending surgery.
“As I counted down the days, I became increasingly convinced that I wasn’t going to survive. The risks of surgery were endless and included risk of permanent facial paralysis, risk of stroke and even risk of death”.
On 12 May 2018, the day of my surgery, my alarm went off at 5am. I woke, went through the whole nausea / vomiting routine and got up. I felt surprisingly calm; I had to just trust these guys to do their job. A bit like waiting to have a baby, my bags had been packed and ready to go for the last couple of weeks. The outcome of this trip was unknown territory though. I popped in to see my children, who were still sleeping. It was at this point the fear kicked in again. What would I look like next time I saw them? What would they sound like through one ear? Would I ever see them again? I fought back the tears for Neil’s sake, as his day would be long enough without me giving him more to worry about. We arrived at the hospital and made our way to the admissions department. I was given a gown, the oh-so-sexy compression socks and – wait for it – paper knickers.
It was a comfort when my team, first the anaesthetist, Joe Sebastian, and then Scott Rutherford and Simon Lloyd, came to see me. Joe was happy with my observations. Scott explained to Neil that he would call as soon as I was out of theatre, and that he shouldn’t worry if it was 12 hours or more. Simon began to go over the risks of surgery again, but I think the look on my face was enough for him and he said: “you really don’t want me to read this again do you?”. With my barely legible scribble on the consent form, they went off to finish preparing the theatre. My nerves were shot, I just wanted this over with. Whilst I sat there waiting, I cried. It wasn’t too much longer before a hospital porter came along with the trolley for me.
“As I got on and began to be wheeled away, Neil said: “I love you”, and I knew that was the last time I’d hear him through my left ear.”
The theatre door looked more like an industrial fridge door, heavy and substantial. It was like entering an airlock on a submarine, or space shuttle! As I was hooked up to various heart and blood pressure monitors, it was almost a relief to just be getting on with it. As the monitors began to beep, Joe inserted a canula, and his assistant reassured me and gave me oxygen.
I felt the cold liquid snaking up my arm as the anaesthetic was administered. My eyes felt heavy and within seconds I was asleep. Eight hours later I woke, and for a split second it felt like I’d gone into fight or flight, until I realised where I was. I was almost immediately aware of three recovery nurses; one was at my side reassuring me that it was all over. Scott came in to check on me. He told me that the surgery had been quicker than any of them expected.
“He said it had gone really well and that they had removed 100% of the tumour. I felt utter relief. Then he told me, ‘you have a grade 3 facial palsy, but we’re hopeful it will improve over the coming weeks, as your facial nerve was fully functioning when we closed up.’”
My head hurt like crazy and my face felt numb, like I’d had lignocaine at the dentist. My left side, from my forehead to my chin, felt completely dead. Of slightly more concern, my eye wouldn’t close. On a positive note, the horrible, toxic, sickening sensation I’d had inside my head was completely gone.
Neil took photos to show me what I looked like. A photo doesn’t lie. I looked a mess. I had an uncomfortably tight compression bandage around my head, my eye stayed open and my mouth wouldn’t move properly, no matter how hard I tried.
“I was now this horrible bedridden person, completely unrecognisable from who I really was. I was no longer a runner, walker, climber, but someone who needed help drinking from a sippy cup.”
I noticed that something was seriously wrong with my vision. As I looked straight ahead, everything had turned 90° on its side. Of all the risks that had been explained to me, this wasn’t on the list! The matron reassured me that after major cranial surgery, these things can sometimes happen. I also had horrific double vision and screaming tinnitus. That night was quite possibly the longest night of my life. Nurses came and went all night fixing me up with IV pain relief, anti-sickness meds and saline, as I couldn’t keep any fluids down.
After a few days I was unhooked from some of the monitors and moved to a private room. 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 even with two physios. Every step I took was unsteady and taxing, like a toddler walking for the first time. Once out of hospital, and at the beginning of the long road to recovery, simple tasks such as walking around the supermarket would made me feel dizzy, nauseous and off-balance. I had to learn to write again because my brain had forgotten how. The list could go on and on.
I had been told that riding a bike, something I love, would be very difficult after surgery. But I couldn’t help but wonder, what if…? Neil lowered the seat on his bike as low as it would go. I sat on it and tried to find my balance. It felt like I’d never ridden before. Gripping onto the handlebars, I pushed myself along, not even venturing near the pedals. And then, as I began to get used to it, I put one foot on a pedal, then the other. I was off. The following week we took the bikes to a quiet track and rode up and down.
“A week later, five weeks post-op, I rode 10 miles to the small cafe I used to enjoy riding to so much. The following week I cycled 30 miles.”
Everything can seem impossible until it’s done. Since I found my cycling legs, I’ve stopped at nothing to continue my journey onwards and upwards – quite literally! In September I joined a group of friends on a trek of the Atlas Mountains in Morocco. We walked for eight hours a day, scaling heights of more than 4,000 metres. It took sheer strength and determination to even get me there in the first place but remarkably, I found it easier than I thought I would.
Doing a skydive had been on my bucket list since forever, and when I was told I needed surgery it was one of the first things I instantly regretted not having done already. I mean, surely, you’d never be able to do things like that with a hole in your head that was filled with fat from your stomach? Well, it turns out you can! On 14 October 2019 I jumped out of a plane at 15,000ft, completing my first tandem parachute jump.
“There were no nerves, because when you get the opportunity to do something you thought you would never be able to do, you grab it with both hands. I couldn’t stop smiling.
Since my surgery, I have accomplished so much more than I ever thought possible. When I was lying in hospital hooked up to all sorts of machinery, if someone told me that within six months I’d be hiking in the hills and climbing mountains, getting my business back on track and even undertaking a skydive for charity, I probably would’ve cried! I definitely wouldn’t have believed them. I remember being offered a walking frame to take home when I left hospital – but I had 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!
“When I received my diagnosis, I made a promise to myself, that I would share my journey, to provide a small glimmer of hope to others going through the same experience.”
I’m sharing the story of how I overcame adversity to get from sickbed to summits in a blog and have recently launched a website too. I have been invited to speak at schools and businesses, sharing what I have learnt since my diagnosis to inspire and teach others. I hope that I can change some people's attitudes to overcoming adversity, and increase their knowledge of what it's like to live with hidden disabilities. Developing a positive mindset and setting goals has helped me to fulfil my dreams and I hope I can help others to do the same.
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.
If you have been inspired by Sara’s story, you may like to make a donation via www.braintumourresearch.org/donation/donate-now or leave a gift in your will via www.braintumourresearch.org/legacy
Together we will find a cure.