Ellen Yates was diagnosed with a brain tumour in 2015, she has an acoustic neuroma sitting in her brain that according to her neurologist can be left alone. She was put on the Watch-and-Wait list which has given her terrible anxiety and worry.
She has regular MRI scans and has no idea what the future holds for her. Because of her ill health, she was made redundant. She didn’t want to just sit back and do nothing with her life and has been on a mission to raise awareness of Acoustic Neuroma and all other brain tumours.
“After I managed to get over my shock in 2015, I said to my husband Kev, that if I could do one thing to help someone else diagnosed with a brain tumour to not feel so alone and isolated as I had felt, then I would feel a lot happier. I feel as if I have found a new purpose in life” – Ellen Yates
I found out about Brain Tumour Support, A charity which holds monthly meetings in Truro, about 10 miles from where I live and so I started to attend the on a regular basis.
Finding the charity was the best thing I have ever done.
I am now a Fundraising/Support Volunteer for Brain Tumour Support in Cornwall and a member of their support group. I continue to do what I can to support others and to raise the profile and also raise funds for the charity and it is something I am passionate about.
Find Out More About What an Acoustic Neuromas is Here
Getting A Life Line
Brain Tumour Support allowed me to have telephone counselling, through the charity, which I cannot praise enough, it has helped to shape me into the person I am today. Brain Tumour Support also inspired me to design and get my first tattoo done.
What I Have Learnt From My Counselling Sessions
Having been living with an Acoustic Neuroma other the last five years I am still trying to come to terms with ‘the new me’ – the ‘me’ who walked into the ENT Consultant’s office on that day to be told that I had a benign tumour, which would not cause any problems.
I would merely be put on Watch and Wait to have ‘yearly’ MRI scans to keep an eye on its development and growth. They said there was nothing for me to worry about. That was when my mental state went on overdrive!
I am now five years on from the ‘oh it’s benign so everything is going to be okay’ to the actual realisation of how it has affected my life and my husband’s life.
A list of the things I have had to deal with:
- continual tinnitus,
- earaches almost on a daily basis,
- problems with my jaw on the same side as my tumour
- having to get used to wearing a digital hearing aid,
- balance issues which at times are very severe, ‘wobbly/foggy’ head on a daily basis,
- brain fatigue which is different to merely being tired to name but a few symptoms I have experienced so far ……
I’m Not Complaining About My Acoustic Neuroma
Don’t get me wrong I am not complaining or feeling sorry for myself, that is not the case, and I have not once asked ‘why me?’ As someone very dear to me once said, they had asked themselves (the person in question is another AN warrior) ‘why not me?’.
But in a bid to help others understand I thought I would write this down ….. (it is something which was shared with me by a Brain Tumour Support Team counsellor with whom I have weekly telephone counselling which does help a lot)
I can recognise that I have been going through ‘the grieving process’ in respect of having lost my ‘old self’ to trying to come to terms with what my ‘new self’ will be as things progress
My Mental Health Issues
I have been through the stages so far that is:
- it’s not real, it’s not happening to me’,
- crying at the drop of a hat,
- loss of interest,
- difficulty functioning,
- the gradual acceptance of loss to name a few,
What I Have Learnt About My Grieving Process
- Outbursts of distress
- Pangs of grief
- Anxious pining
- Pre-occupation with loss
- Loss of interest in appearance
DESPAIR / DISORGANISATION
- Social withdrawal
- Difficulty functioning
ACCEPTANCE / ADJUSTMENT
- The gradual acceptance of loss
- Letting go hope that ‘the old self’ can be recovered
- Withdrawing emotionally
- Accepting ‘new self’
- Finding a new identity
- Resuming normal/active social life
- Making plans for the future (although at times unknown)
- Adopting new roles
- Acquiring new skills
NB ……. These emotional stages on the journey may occur in any order and more than once.’
My Final Word Is
I have gone through my grieving stage and now I am in a position where I am hosting ‘Brain Tumour Support‘ groups via Zoom sessions for Cornwall, Devon, Hampshire and Dorset on a fortnightly basis. I also support emotionally many others up and down the UK with really good results. I am not able to arrange socials etc due to Covid 19.
Something else I do is crochet. I sell my work to raise funds for the Brain Tumour Support… If you would like to be apart of this? find out more HERE
One of the most positive things to come out of having a brain tumour is the amazing people I have met along the way and continue to meet as a result who have turned into friends and we are all of a unique family that no one wants to be in but together we are stronger.
I am raising funds in memory of my friend Graham, who passed away from brain cancer. Brain Tumour Support gave him a lifeline in his darkest days and this is our way to say thank you. FIND OUT MORE HERE