What it feels like to live with a brain tumour for 15 years
It felt like I was watching a Netflix show, and the leading character had just received devastating news.
It was the early hours of 4 December 2018. I was aged 33 and had just been diagnosed with a 5cm tumour in my cerebellum.
When a patient is diagnosed with a brain tumour, the tumour is rated on a grade scale from one to four, with one being the least severe and four being the most – mine was grade two.
After complaining of unexpected chest pains that morning, an ambulance took me to the hospital for scans. I was told my heart was OK, but the hospital wanted me to take further tests.
Following an MRI scan, after what felt like an eternity, the doctor appeared and told me: ‘We’ve found a large tumour in your brain.’
‘Will I die?’ I asked, in shock.
He said: ‘It looks benign, but we don’t know at this stage.’
The doctor reiterated the tumour had characteristics of one that has grown slowly.
He went on to say that it had been there for a ‘long time’, adding that 15 years or so was his best estimate.
My three dearest friends were with me for support, and there as I waited for more information. Strangely, the next few hours involved us laughing about normal things – just what I needed.
Leaving the hospital, I was plagued with uncertainty as there was still no definitive answer as to whether the tumour was benign or cancerous.
My health deteriorated rapidly over the days and weeks that followed the diagnosis. I put on a lot of weight, and my head felt like it was going to explode. Physically, I felt awful – as though my body was giving up on me. Mentally, I was scared and confused, mostly about what the future would hold for me.
I kept thinking about every single decision I’d ever made. I couldn’t help but wonder what role the brain tumour had played in my life, and I replayed past mistakes constantly in my mind. I also realised how irritable and snappy I had been with everyone in recent months.
The hospital explained surgery was imperative due to the size of the tumour. It was increasing and getting close to the fourth ventricle of my brain, which sits between the brainstem and the cerebellum – the increasing pressure could affect my health, and could even be fatal.
During the wait between the diagnosis and operation, I struggled to sleep, and the anxiety about what may lay ahead continued to trouble me.
Then, I finally received a text from the hospital just after Christmas confirming my operation for 3 January 2019. The relief that I finally had a surgery date was immense – but the fear was equally overwhelming.
Operation day arrived. I was so scared, I did not sleep a wink the night before, and I felt like I was running on adrenaline.
After hours of waiting in silence, the time for the operation arrived. My heart was racing so fast. I remember lying there on the table as the nurses and doctors introduced themselves. Surgery was expected to last six hours and involve them removing part of my skull to reach the tumour. Before I knew it, the nurse then asked me to count to 10 as the anaesthesia was delivered.
Waking from the operation, I asked the surgeon if he could understand me. When he said yes, I took a deep breath – I was alive.
I spent the next four days in the hospital and healed well physically. But I was tired mentally, and I craved normality. Especially after I heard from the doctors that the sample taken from the tumour returned as non-cancerous and was therefore not life-threatening. A wave of relief hit me.
But, after I left the hospital, I had a constant feeling of sadness. It escalated and got to the point that I thought everyone would be better off without me. These depressive side effects were unexpected – and not something I was prepared for at all. I felt consumed by everything.
I felt different than before. Inadequate. These negative thoughts continued and grew worse.
According to The Brain Tumour Charity, 91% of people say their tumour has affected their mental health. A heart-breaking statistic like this shows that having surgery to remove or shrink a brain tumour is only half of the battle. The other half is to support patients and help protect their mental health.
Things got so bad that on 9 May 2019, I decided to take my own life – convinced that death was the only way I could experience peace.
After a failed suicide attempt, I leaned on a small group of friends for support. They helped me as much as they could. Despite their help, I felt a burden and realised I needed professional help – so, I decided to see a therapist.
I remember a strong feeling of shame and embarrassment. I felt that I had let all my friends and family down, and despite having so many people around me who cared, I constantly felt alone. It was as though the old me had died, and no one knew.
For months I battled every day with how fractured my mind had become. At points in my recovery, I thought that ignorance was better, and at the time, I wished that I hadn’t found out about the tumour. Now I realise I was fortunate that it was found when it was. According to the surgeon, if left untreated, the tumour could have become life-threatening because of its size and location.
I began to look forward and change my life. I moved jobs to work for a travel company which my best friend Daniela organised for me – working with her as a Customer Service Advisor helped me rebuild my confidence. My new job and meeting some new best friends saved my life.
I felt more like me again, and my new co-workers and friends helped me so much more than they could have realised.
I have changed since my brain tumour diagnosis, and coping with the loss of the old me is something I still deal with. The difference is, now, I love myself. I feel like I have kept the good parts of the old me and added to them.
Before my operation, I lacked empathy for other people. I didn’t appreciate life as much as I should have. Since my surgery, I now actively practice being sensitive towards others’ needs because I know how it feels to think there is no way out.
Every MRI check-up since my operation has been OK. I have them once a year, and they have been all clear since surgery.
One thing that helped me during my recovery was to break my day up into smaller tasks. I developed a love of writing to-do lists. On these lists, I would write simple things like making my bed or taking a shower. But the feeling of crossing these tasks off my list gave me a sense of achievement which was paramount in me navigating my way through those dark times.
It is vital to remember however low you may be feeling – it will not last forever.
I feel like I am living a second chance – I have a passion for life I lacked before my diagnosis. I will never waste another day.
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In this exciting new series from Metro.co.uk, What It Feels Like… not only shares one person’s moving story, but also the details and emotions entwined within it, to allow readers a true insight into their life changing experience.
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