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BrainSET App

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Hi, my name is Victoria

In 2016 I lived a very happy and busy life, I lived and worked mostly overseas as a holiday representative. I spent my days welcoming guests to their holiday and making sure they had a wonderful time. I travelled and I enjoyed the sunshine, quite often with a glass or two of wine or a G&T, life was great and I was very happy

That said I decided it was time to return to the UK and spend at least a few years spending time with my rapidly growing grandchildren

In 2017 I had a seizure, I was just walking home from a rainy walk,  and I was as usual on the phone having a natter, I didn’t realise it but I started talking strange, unusually strange. 

I knew I wasn't quite right but I didn't know how or why I wasn't quite right 

I tried to send my friend a series of messages to let her know that I was OK,  but I couldn't spell properly and I knew they were strange but I couldn't make them right. 

My friend raised the alarm and I got taken against my will to the hospital. 

At that point I truly believed I had nothing more than a water infection

After an hour or so I was feeling better, I got called to see a doctor and that's when we got really frightened, I forgot my name, my friends name, I forgot everything around me and I knew that strange feeling was starting again I cried. 

Once my grown up daughters arrived we started a series of things, conversations, scans and questions we were told eventually that I could have breast cancer, brain cancer or a collection of other possibilities

The following day there were more tests, an MRI scan which was 20 minutes of being scanned in a tube which really brings to mind that there was something serious going on. After a day of waiting my family and me finally got told the diagnosis. 

I had a meningioma brain tumour, believed to be benign, and a third of the size of the left of my brain, pushing to the front where the personality and memory lives 

At this point I had to give up my job, my car and driving licence and start claiming benefits which is not a fun process especially if you don't know the system or how it works

Two weeks later I was told I was going to be having surgery to cut out the tumour and that surgery was about 4 weeks away, it would be a 13 hour surgery. When you're given that information what do you say?

There are so many types of brain tumour and during the course of time I will tell you about many of them and their causes that are known and the effects

Mine was a meningiona, slow growing, benign (non cancerous) large and on my left temporal lobe. As I've already said this area of your brain effects mostly your memory and your personality

When anyone is preparing themselves for a brain surgery it is a very frightening time and the thoughts are many and varied mostly fear and worry and I was no exception

I had my surgery, so far I've survived, and 3 years of life changing events have been my life ever since.

Although I no longer have a brain tumour I do now have epilepsy and seizures so I am still unable to work 

In this time I have still been unable to drive and I have still had to claim benefits

I knew I didn't want to not work so I studied meditation and mindfulness to find ways to calm my own mind and live with my own life changes

I have found it difficult and exhausting to find information on how to deal with these life changing times. I have spent hours, days and weeks trying to navigate my way through google to find what I needed to know about the help I've needed like financial support, help with support for myself, friends and family, the type of tumour I had and what was going to happen with my surgery and life after
 
Getting in touch with others who knew how it felt and understand what I was going through has been a great help 

I wanted to make m own life better so I studied, I studied information on vitamins and minerals for brain health and where I could get them. I studied ways to improve my lifestyle, alternative therapies, medications prescribed and how to deal with this devastating and lifechanging time in my life 

I eventually did navigate myself around all of the systems I needed to and realised that I wanted to make this process easier for others that were going through the same as me. 

With this in mind I have created BrainSET, BrainSET is named for Brain seizures, epilepsy and tumours, it is developed to provide all of this information in one place with a simple to use app. 

There will be information and links to recipes with the best nutrition information for the brain, the best support and where to find it and as much information as possible for brain health. 

I also intend to put other Brain tumour and epilepsy sufferers and their friends, families and carers in contact with each other 

With every purchase of this app I will be making a financial contribution to the epilepsy society and brain tumour research, both of these organisations have been a huge help to me and they do vital research into both of these devastating conditions

I would also love to replace my own income eventually so that I can get off the benefit system which has been a huge help to me but not somewhere I want to be for the rest of my life

The app has been created and will very soon be available for purchase but it costs money and money I need help with to continue everything it will be providing. 

Parts of the app will be free to use and then a subscription

If you would like to contribute or know anyone who would please use the go fund  meand if you have any questions please get in touch, I would love to hear from you with help or advice

I can be found on :
Facebook BrainSET   
Instagram brainset_ 
Twitter @Brainset1
Linkedin Victoria Watson Bradley

Thankyou for reading, thankyou for your time and thankyou for your help

Best wishes and stay safe

Organizer

Victoria Watson Bradley
Organizer

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