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Samantha Johns

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Samantha Johns

Samantha Johns

I don't want anyone to feel as alone as I did

When Samantha Johns was diagnosed with a brain tumour in January 2016, she had no idea where to turn for guidance and support.

Her struggle and loneliness inspired her to create her own Youtube channel, BT Brummie - Head Cases and Brain Farts. Samantha started posting videos to help people understand the procedures they face and find out which charities can support them.

What started off as a project to help others reminds Samantha she is not alone on her journey after brain injury.

"There are so many people out there going through this alone," she said. "Or they're doing it without any real support because they think they have to protect their families and friends and cope on their own.

"I want people to have a place to go where they can access plain and easy to understand information about their conditions and how to cope with them. I just don’t want anyone going through this to feel as alone as I did at some points."

Before her brain tumour, Samantha was a single parent raising her two sons. She was vice-chair of a local primary school governing body and she fostered cats for a local charity.

"I was unable to work as I was suffering from depression," she said. "But I did have some voluntary work which kept me going and I loved dearly. It kept my mind busy and I still felt I was helping my community. I had a close-knit circle of friends who I trusted."

"Above all, I loved helping people."

Samantha's tumour was an incidental find. She was already under the care of a neurologist because she suffers from Essential Tremor, a nerve disorder characterised by uncontrollable shaking. Samantha's estranged father had early-onset Parkinson's and had passed away because of a brain tumour. 

Although Samantha wasn't showing any symptoms of having a tumour, she was sent for an MRI scan a few months later, just to be sure. But a week after the scan she received a phone call with the devastating news.

"As far as I was aware, the tumour wasn't affecting me physically," she said. "I was more affected by the emotional stress of having to tell my family and friends. I was very lucky it was caught when it was because it was growing towards my optic nerve behind my left eye and pressing on my frontal lobe. I was told straight away by the neurosurgeon that it had to come out as soon as possible before it affected my vision."

After being warned how long her recovery might take, Samantha gave up her voluntary roles, knowing she might not be able to keep up with her commitments.

"I couldn't really concentrate on any of it by that stage anyway," she said.

"It felt I was giving up my life because of this thing in my head that I couldn't see. Although I was terrified of the operation itself I couldn’t wait to get rid of it."

But after her operation, Samantha was left feeling very alone, with no-one to turn to for support.

"I felt so alone in my journey because I had no-one to talk to. No-one told me what to expect from my tests or operations or even my complications.

"I spent most of my time feeling fearful while trying to protect my friends and family from what I was really feeling. Although I now know there is support out there, no-one told me about it."

After having a second craniotomy for a leak of cerebrospinal fluid (CSF) from her brain, Samantha got in touch with the Headway helpline.

"I was having trouble with my temper. My smell and taste buds were all mixed up and I was so tired all the time."

I called the helpline just to have someone to talk to and tell me I wasn't imagining everything. I was so angry at everyone and everything.

"I was sent some of Headway's information booklets on anger and some information about support groups for when I felt well enough to attend them."

But a week later, Samantha developed an infection and went back into hospital for another two months. She didn't have the chance to act on Headway's advice until after her third craniotomy.

Spending long periods of time at home alone between visits from nurses gave her the chance to read Headway's information and start to accept what was happening.

"My main issues since having the tumour removed are the pain, tiredness and my temper. I also suffer from brain fog and find it hard to concentrate at times. If I plan things and they don’t go the way I planned I tend to snap very quickly." 

"I used to be so patient with people and finding my way around obstacles was a breeze. Now I have to plan for multiple outcomes.

"It's really hard on my brain at times and even then sometimes it’s just not enough."

"Tiredness is a huge thing I’ve had to learn to plan around. I find routine helps but I’ve definitely learned to listen to my brain more. When it starts to tell me it’s tired, if I start struggling to concentrate or if I can't find the right words to say, I know I need to rest.

"Since finding Headway I've learnt to accept the changes in myself more, knowing that it isn't my fault for the way I am now. Learning to accept the new me has taken a huge weight off my shoulders. Also, the booklets helped me to find strategies to cope with everyday tasks and find the best way for me to move forward."

Samantha had struggled with depression before her brain tumour and she still lives with it now. But her mental health became particularly bad after her brain tumour was removed.

"After my third operation, my depression got a lot worse. It was partly as a reaction to everything I was going through but also because of the lack of support I received emotionally. I came out of the hospital and although I was having regular physical checkups not once did anyone ask how I was doing mentally.

"It was only after I found YouTubers Rhett and Link, a comedy duo, that things started to get a little better. They reminded me that life was for living and laughing and then my idea for the show came along which shifted my focus and gave me something to do for others again. I dread to think where I would be if it wasn't for working on the show right now.

"It was only after I found YouTubers Rhett and Link, a comedy duo, that things started to get a little better. They reminded me that life was for living and laughing and then my idea for the show came along which shifted my focus and gave me something to do for others again."

I dread to think where I would be if it wasn't for working on the show right now.

After receiving help from Headway, and having her spirits lifted by her favourite YouTubers, Samantha decided to set up BT Brummie - Head Cases and Brain Farts to support other people going through similar struggles.

Her videos share information about the effects of brain injury and medical procedures, to let people know what to expect and make sure they don't feel alone.

"The feedback I have received so far has been incredibly positive," she said. "Mostly it's people saying 'that happened to me too', or 'I can’t believe that happened to you'. Others talk about knowing where to turn without having to search the internet for the right support as I list a lot of charities under every video we post.

"But most people seem to like how plainly I explain the tests and what to expect with different scenarios. There are no complicated explanations, just a simple, short but precise talk about what they might expect and how it may affect them, from another person's perspective."

But Samantha's subscribers are not only ones benefitting from her videos. Creating the videos has helped her to feel more like her old self.

"I guess most of all I enjoy feeling useful and productive and knowing I'm helping people again. Every role I had pre-tumour was helping people or animals."

 

After having to give up everything, being able to help people again has been a huge boost to my self-esteem.

"I’m being challenged to learn new things, not only about brain tumours and recovery, but about other people’s stories. That in turn helps me not to feel so alone in things. So all round I think it’s a win-win."

To watch Samantha's videos or subscribe to her channel visit https://www.youtube.com/channel/UCUmQIeGmcO5Jv4bDUtTBZoQ

 

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Headway - the brain injury association is registered with the Charity Commission for England and Wales (Charity no. 1025852) and the Office of the Scottish Regulator (Charity no. SC 039992). Headway is a company limited by guarantee, registered in England no. 2346893.

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