“I would like the world to know that life with a brain tumour is hard. Really hard. It is a rollercoaster ride full of immense lows, highs, and often long waits! I find it to be both exhausting and exhilarating. I guess the exhilarating part is due to the realisation that despite my diagnosis there is still joy in living.”
Hi ! I’m Helen Pritchard. I am 51 and married with two boys aged 21 & 15 and I live in Staffordshire. I love the outdoors & spending time in green spaces.
In January 2020 I was diagnosed with an Acoustic Neuroma, and it was like the bottom had dropped out of my world. I felt sad, overwhelmed, angry, lonely & very confused.
Making connections with a number of brain tumour charities enabled me to explore and make sense of living life with a brain tumour. My first contact with brainstrust was when I got in touch to request a brain box. This is an amazing box packed with lots of useful information for anyone diagnosed with a brain tumour and is posted to your home free of charge. My next step was to join some of the online workshops and meetup groups that brainstrust organise. I was really nervous at first, but I found it incredibly helpful to connect with others going through the same or a similar experience to myself. I have also received invaluable coaching from Jodie, my regional Support Specialist.
What I want the world to know about life with a brain tumour
I would like the world to know that life with a brain tumour is hard. Really hard. It is a rollercoaster ride full of immense lows, highs, and often long waits! I find it to be both exhausting and exhilarating. I guess the exhilarating part is due to the realisation that despite my diagnosis there is still joy in living.
As a result of my brain tumour, I have single sided hearing loss, tinnitus, fatigue, balance issues, dizziness, and nausea. All of this makes everyday living a huge effort, and I have had to relearn how to live my life. It now requires a lot of planning, pacing & resting!
My advice for other people in my situation
For anyone newly diagnosed with a brain tumour, you’ve got to be prepared to advocate on your own behalf. This is your life and your body. Be prepared to seek and accept help from others. There is no failure in asking for or needed helping and support. Find out what help and support is available to you locally, nationally and internationally. Know that relationships with others can and do change during and after diagnosis. But most importantly, remember to be kind to yourself.
Finally, it isn’t all doom and gloom (although there can be a lot of that too). Following my diagnosis, I have managed to connect with some amazing charities, organisations, people and places. This is not the life that I wanted but it is still good.