We’ve all had the annoying eye-twitch as we sit on the bus or in an arduous meeting, the morning after a late-night Netflix binge, but what if that, and other facial spasms indicate something much more serious?
Born in Prague, Anna Berankova moved to the UK to study Politics and International Relations and now works for Brain Tumour Research in Milton Keynes. She was diagnosed with a brain tumour aged 20.
Her symptoms had been put down to exam stress, but investigations via a Neurologist – which included a Lumbar Puncture and PET scan, revealed that the twitches and facial spasms were in fact due to a low-grade Diffuse Intrinsic Brainstem Glioma (what a mouthful!).
Anna and I have become friends via social media, as well as fundraising stuff I’ve been involved with to support the charity. Therefore, it’s safe to say I felt super comfortable
bombarding asking Anna questions about what life is like for her now. Here’s what she had to say about staying positive, mental health, and dedicating her career to helping other patients.
How has your diagnosis affected you?
Physically, my facial spasm has been getting worse. Hearing on my right ear is also deteriorating. Sometimes balance issues and headaches.
The biggest effect of the diagnosis has been psychological. I live with my tumour so it’s always on my mind. Literally. As the facial spasm was getting worse, it really affected my confidence. Also, I used to take antidepressants and suffer from anxiety and panic attacks. For a long time, I didn’t want to talk about it. I only recently started to seek help (attending support groups etc.) and have opened up about my diagnosis via my blog and my work.
Has life changed? How?
So much. Professionally, I realised I want to work in Medical Research and work with patients.
Socially, I’m more aware of other people’s’ problems and suffering and am a much better listener. I created much stronger and meaningful relationships with my family and friends. I never take them for granted. Emotionally and spiritually, I became stronger. I learnt not to worry or plan too much. I meditate, I’m trying to be mindful, patient and enjoy life.
What is your experience of available treatments for your type of brain tumour?
Treatment options have been very limited. My tumour is inoperable so even a biopsy would be very risky and could leave me seriously disabled.
I was offered the conventional treatments like radiotherapy/proton beam therapy but am trying to avoid these invasive treatments at the moment. I found that there is very little support for low-grade inoperable tumours and very few options. I know I have been quite sceptical (maybe controversial) about conventional treatments but I do believe that they would make me worse off and I have always trusted my instinct.
Where do you turn for support?
Talking to patients in a similar situation, family, friends and health professionals that I trust.
Also, constantly educating myself about neuroscience, neurology, oncology and psychology really help. I found that understanding my condition a bit better helps me to cope. I’m a big believer in the mind-body connection so really try to work on my mental health by meditating, doing yoga, breathing exercises, mindful exercising. I also love relaxing Youtube videos, particularly ASMR.
Anna works for the national charity Brain Tumour Research. I couldn’t pass up the opportunity to find out more about what attracted her to the role, and (given her proximity to researchers) what she thinks might be next for treating brain tumours.
I work in PR so my background in journalism helps. I’ve always been drawn to the media, communications and writing. When I started opening up about my diagnosis, I realised that I want to work in this field and use my patient experience as an important perspective that I can bring to the organisation. What I particularly love about working at Brain Tumour Research are the amazing doctors, scientists, campaigners, patients… that I get to meet.
There are days when I’m not feeling myself but because I experience a certain level of discomfort or pain on a daily basis, I learnt how to cope with it. I think my pain/discomfort threshold is a bit higher than most peoples’ so that helps me to manage. I try not to stare at the computer for hours and not sit at my desk all the time. I also never hesitate to say when I’m not feeling well and thankfully my work is very accommodating and understands that I need to have hospital appointments once in a while and regular scans.
What insights do you have into what could be next when it comes to treating brain tumours?
That is a difficult question. The treatment of brain tumours and the different approaches very much depend on the location of the tumour, type, histology, general health and many other factors.
A big part of the research is focused on the aggressive tumours, mainly GBM, which is great but not so helpful for those with a low-grade diagnosis. I personally believe that regenerative medicine is the future of oncology so I’m very much curious to see further advancements in immunotherapies and stem cells therapies.
I think that future neuro-oncology should not be just about “fighting the tumour” (often with very aggressive weapons) but about understanding the brain physiology, the unique genetic makeup of each individual tumour and making treatments as personalised as possible. Comprehending the formation of brain tumours is key in finding effective therapies however this still remains a big unknown in the research into neurological tumours.
Anna’s top-tips for other girls in the brain tumour club
Love yourself and others. Ask questions. Don’t be afraid to cry and show your weakness because this is ultimately your biggest strength.
Do what you love, seek pleasure and a positive state of mind. Accept your diagnosis, don’t ask why me but think about how I can turn my situation into something meaningful. Laugh, eat good food and don’t take life too seriously.
Read more from Anna on her blog: Anna’s Brainstorm.