My battle started on 21st of January 2013. Had been waiting on the results of an MRI to try and find out I was having such dizzy spells, nausea and chronic fatigue after a routine E.N.T surgery. I had been suffering problems with my balance and nausea since years prior to this. My results were not through by December 2012 so when I still had heard nothing in January 2013, I left a message with the Secretary of the ENT Consultant to ask could she chase this up. I also told her as I had been under his care for some years that I was fine if he wanted to leave a message on my landline. I got home to a message telling me that the Meningioma found in 2010 had now grown and I was being referred to Neurosurgery in Aberdeen. Also that he thought it likely I would need surgery. Imagine my shock when I heard about this Meningioma I had that I had never heard about! After looking it up online (thank goodness for the internet) I found out it was a brain tumour! It had been missed by the hospital since 2010 despite me having numerous scans by other consultants to try to work out why I had such dizziness and nausea?

I had my appointment in Aberdeen Neuro Clinic and it was decided the best course of action was Gamma Knife and it needed to be done asap. The tumour was a Grade 2 and was in the Posterior Fossa. If left I would be left severely disabled within 5 years and dead within 20. I was 47 years old. I was told that I would be absolutely fine after Gamma Knife and that life would go on as normal. Surgery was not an option, it would be 6 hours of micro neurosurgery. A two year recovery, re-learning absolutely everything. The tumour couldn’t have been in a more awkward place!  Had my treatment in Sheffield and in the 6 months I waited for it, the tumour had grown another 50%. I was fortunate I was just within the margins to be able to get Gamma Knife. I was told that my severe headaches, balance problems, nausea and coordination issues were caused by the brain tumour, a lot of professionals had disagreed and this consultant was a world leading gamma knife neurosurgeon. Initially it was thought my balance would be permanently damaged after the gamma knife as he was hitting it with a really strong dose to try to stop it in its tracks.

I was very unwell after the treatment, I couldn’t stay awake, had chronic nausea, dizziness and a lot of pain at my pin sites. When I eventually got back to work doing Admin for local government it was a struggle. 6 months into my treatment and when it peaked my balance went. I went into work one day and was holding onto walls to stop myself falling. Not long after I ended up having to use crutches to walk. I had gone from someone who ran races including a marathon and doing a lot of sports to not being able to walk properly. Later on I developed chronic cluster headaches, left side weakness, coordination problems, chronic fatigue, nausea and after testing the radiation left me with brain injury.

I don’t know how I would have managed had I not been someone who was stubborn and a fighter, although it took a while for me to accept that a brain tumour affects things you just can’t find a proper adaptation for. And that you can’t find a way to do the things you used to do but had to adapt instead and accept you were a new you.

I’m still working full time, it’s a struggle but it keeps me going. And I have very supportive colleagues and our local government have done everything they can to help me. Despite now being disabled and very unwell it has been made clear to me how valuable I am as an employee and how good I am at my job and needed. Losing the ability to do any form of exercise hit me hard and also affected my weight. The combination of not being so mobile, being unwell and often needing steroids took its toll on my weight. I always counted my blessings that despite the serious health implications at least my tumour was not cancerous. My tumour is now stable since 2014, it grew a bit after treatment. After a lot of treatments to try to control my chronic cluster headaches, 6 monthly Nerve Blocks have been my salvation.  I can’t say I have fully accepted that a lot of the things I could do years ago are now not an option. But instead I am finding new things to keep me going.

I had some counselling and the therapist encouraged me to take up a hobby. I was always creative so decided to do mosaic tiling. The crafts I do have grown massively to doing 12 crafts and rising! I had always enjoyed singing in church so in August I am joining a Rock Choir. This summer I have managed to get tickets to the disabled area for two big concerts in my home town, I always loved concerts/bands. I always wanted a cat but thought it wasn’t fair getting one in case something happened to me. But I found a cat rescue place 2 minutes from where I live. The couple who run it are just so dedicated. They told me they would find the best cat for me and if there was ever an issue that I needed someone to look after him etc, they would do it for me! I got my Alfie a year ago last September, he is now 3 years old. I’ve laughed more in those 2 years than the past 6 years post diagnosis. He is so in tune with me and has almost become a therapy cat, we have such a special bond that the lady I got him from said she has never ever seen in a cat and the owner.

I’ve found ignorance and people’s perspectives can often be the hardest thing to deal with. When I am so unwell the, ‘but you look fine’, when I am in pain, ‘but at least it’s not cancer’. When people see me overweight, ‘she’s fat’ or, ‘she must have had a hip replacement’. It’s difficult for people to understand that I get stressed more quickly, emotional or struggle to concentrate at times compared to how I was now I have brain injury.

I am 6 years down the line, I’m still battling but learning to cope with how I am and that being cured isn’t an option. Life isn’t easy but at least I am still alive, working, valued. I’m a survivor and not a victim and I intend surviving this intruder in my head!