Mettle Monday - Sickbed To Summits

Written by Sara Crosland

“Tuesday 20th February 2018 started off pretty much the same as any other day. I didn’t feel great, but not feeling great was the new ‘norm’ for me: I hadn’t felt great for a very long time. I was in the routine of pacing myself, so I could manage the constant levels of fatigue as best I could, and actually hide some of it from others." (Chapter 1, Sickbed to Summits) 

Little did I know what lay ahead... 

A few hours later, I’d be called back to the hospital under the pretense my consultant had a cancellation. He sat me down and told me that I had a brain tumour. It was an acoustic neuroma (sometimes known as a vestibular schwannoma), a low grade, but in my case, uncharacteristically fast-growing, cystic tumour that was growing on the hearing and balance nerves within the confined space of my skull. This explained many of the symptoms I’d been experiencing recently, but not all.   

I was shocked, devastated, angry and totally numb. In that moment, my life quite literally fell apart but it was to get much worse over the coming weeks and months. Up until then I’d been a wife, mum to three teens, a classically trained violinist teaching in a local primary school and supporting children with complex learning and behaviour difficulties. I’d also set up a portrait photography business, which I wanted to make a success of. I ran regularly, had taken a keen interest in climbing, loved to travel and find adventure and hiked out in the mountains most weekends. Many people consider me a little mad. 

I tried to continue with a ‘business as usual’ approach, keeping myself busy as much as I could, but it was the biggest mental and physical battle ever. Thankfully, I have some great friends around me. I took my motivation from some friends in the US Navy, an unlikely source you might think, but they know a thing or two about tough battles and finding themselves in dark places. They taught me how I should be patient with myself, how to deal with things one moment at a time and not be so focused on the big picture as it can become too overwhelming. They also told me to be realistic in my recovery expectations. They didn’t always say what I wanted to hear, but it was what I needed to hear in order to be prepared for what lay ahead. I guess in their line of work they know many people who have experienced head trauma in some way, shape or form. They messaged most days, shared stories and kept me going. More importantly, their distance from the situation meant I could let off steam; I could share my worries with them in a way that I couldn’t with my family who were too close, too involved, and too upset. 

As my tumour continued to grow, my health deteriorated rapidly to the point where I was more or less bed, or sofa-ridden. It took every ounce of strength I had to get up in the mornings, as from the moment I woke I’d throw up. Sick bags became my best friend and I couldn’t venture far without them. Every day became a physical and mental struggle. 

After a number of meetings with my doctors, I was told that time wasn’t on my side. Due to the size and unpredictability of my tumour, surgery was my only option. This wouldn’t be without risk and at this point I began to find myself in a very dark place. A place you can only ever understand should you be faced with a life-changing diagnosis; a place I never want to go to again. 

Surgery to remove the tumour was planned for 12^th May, but around 3 weeks before I woke in the early hours with a blinding headache. I took painkillers hoping it would go away and let me sleep, but when I woke the following morning there was still a constant, dull pain deep inside my skull. My nausea was far worse and later that day after a visit from a friend things took a turn for the worse. 

We’d been sat in the garden. I’d been listening to her conversation, too tired to talk, too bothered by the sunlight and unable at this point to focus on the topic anyway. I explained I didn’t feel great and she left. Moments later I was struck down with the most excruciating pain around the back of my skull and deep within my head. Neil, my husband, rushed me to hospital where I was told I had a hemorrhage. I was taken by ambulance to a Liverpool hospital, and once stabilized I was transferred to Salford Royal in Manchester, where my neuro surgeons were based. The hemorrhage was brought under control by steroids and after a few days under observation, I was sent home to recuperate as best I could ready for my surgery. They were the longest few weeks of my life. As my symptoms continued to worsen, I no longer considered myself to be living, just existing. 

Added to this, tests and x-rays that I underwent during my first hospital admission had revealed lung abnormalities; there was a possibility I also had lymphoma. I was given this news the day before my surgery. I went to the operating theater knowing that once I’d overcome this battle, I’d quite possibly have to fight another. 

I woke some 8 or so hours later. My facial nerve, compressed by the tumour, now meant that half my face, mouth and tongue were numb. I had grade 3-4 facial palsy. My vision was horrendous. What I could see was severely double. Later my brain began to perceive my world as being tipped 90 degrees, so all the staff looked like they were walking on the walls. My vestibulocochlear (hearing and balance) nerve had been severed to access the tumour; my brain couldn’t figure out what way was up, so I needed intensive physiotherapy to learn to walk. As for my hearing, well I was now profoundly deaf on the left side with high pitched tinnitus. 

I realised my battle was only just beginning… 

Just weeks later, I underwent a barbaric bronchoscopy procedure to take biopsies from my lungs. The suspected lymphoma turned out to be an autoimmune condition, sarcoidosis. I took that as a win. 

With time, my face returned more or less to normal although my eye can be problematic at times as it doesn’t produce tears. My vision improved, although I’m still plagued with double vision. Whilst hearing loss still angers me, I’m becoming accustomed to the high pitch noise's in my head. I’m learning to adjust I suppose. Three years on I still suffer with neurofatigue and some balance issues, but I work on these daily. 

At the time of my diagnosis, research (Google!) found little in the way of positive outcomes. Determined my story wouldn’t be like others I’d read, I set myself a number of goals. 

A couple of weeks after my discharge, I began yoga to improve my balance as this was really going to hold me back from getting back to my old normal. I totally refused to accept any idea of the new normal I had been warned about it. If I had to have a new normal, it would be better than the old one. Three weeks after surgery, having been told I’d find riding a bike a challenge if not impossible, I taught myself to ride again, cycling 10 miles at five weeks. 

A few weeks after my diagnosis, I entered a 5k race for a cancer charity later that July. I had no idea what shape I’d be in. As it was, I was cleared by my doctors as fit to run again, so I completed the race - 8 weeks post op. I ran/walked with a friend. The finisher’s medal meant the world to me!  I spent the whole summer working hard to improve my compromised balance, but I was craving a challenge so I headed into the hills once again. Ten weeks after my surgery I returned to Snowdonia, scrambling up Devil’s Kitchen to reach the summit of Y Garn, 947 metres. 

We planned to return to the Alps. I thought I’d been doing well in my recovery, so when I was hit with fatigue it came as a real blow. My mental health plummeted. I wouldn’t give up without a fight though. Things I’d always wanted to do began to take on new importance. Five months after my surgery I did my first charity skydive. 

I did what my doctors told me and kept moving, in all weather. My balance is really poor in the dark so I challenged myself, hiking the local Clwydian hills at night in snow and ice. To mark the first anniversary of my diagnosis, I scrambled up Moel Siabod and to celebrate first anniversary of surgery, I completed the Yorkshire 3 Peaks Challenge, 25 miles and 1500 metres of ascent, in just over 10 hours. 

I continued with regular vestibular rehabilitation therapy and worked hard to improve my fitness. In October 2019, we returned to the Alps where we had a far more successful trip, even completing the biggest challenge to my balance yet, climbing a via ferrata route.  My journey didn’t end there… On 1^st October 2019, after a 3- day hike through the Atlas mountains of North Africa, I hit the summit of Mount Toubkal, 4167 metres. 

Life really is 10% what happens to us, and 90% how we react to it. There have been so many times I could have taken the easy option or given up, but regret is hard to live with. 

We only have one life. Turn obstacles into challenges and keep getting out there and living.