“ Don’t try and do this alone. It is a journey and it is the new you so be patient with yourself and take help when given.
Claire Bullimore is a brain tumour mAss Kicker from the UK. We met her years ago online and reconnected with her recently. She is very active in the brain tumour community in the UK. She is the host of the Brain Tumor Thursday internet radio show. She is also the Founder/ Director of Aunty M Brain Tumours: a personal, friendly and informal online support resource via website & social media (facebook, twitter, and youtube.) We are very honored to reconnect with her and interview her this week as a “Featured mAss Kicker”.
mK: Thanks for doing this Claire. How did you find out about your diagnosis?
CB: After many visits to the doctors about my symptoms unfortunately to no help, I decided to go see my optician and they saw bleeding at the back of my eyes and sent me to the hospital for an MRI scan. 2 days later I was in hospital ready to have surgery to remove a 10cm Intraventricular Meningioma.
mK: What were your symptoms?
CB: I had terrible headaches and bad balance, I had a very bad back that was just constantly throbbing at the bottom of my spine. My vision was having moments of darkness and my speech was not right, I was saying the wrong words or losing my train of thought and forgetting things. My hands were constantly shaking and I was a mess.
mK: How are you doing now?
CB: 8 yrs on from my diagnosis I have been left with a number of problems from my surgery which has been hard. I am now on seizure medication and tablets for RLS and anxiety tablets. I get very tired easily and still have problems with word finding and I was left partially blind and have hyperacusis.
mK: Why did you create Aunty M Brain Tumours?
CB: 3 yrs after my original diagnosis I was feeling very alone and had never met or spoke to any other person affected by a brain tumor. I desperately wanted help as I felt I was meant to be better by then but was having so many problems. I couldn’t find anything about Post surgery online support.
I didn’t want my family to know that I was struggling so much as people didn’t understand, so I made up an anonymous Facebook page (formally called Aunty M Meningiomas) Aunty M Brain Tumours so people didn’t know it was me and decided to put encouraging messages on there and also interact with other brain tumor patients and survivors. Things just evolved and 5 years on I have written a book about my experience, done a book tour meeting fellow brain tumour sufferers and survivors and started an online radio show. I just started working my way around the social media networks to bring encouragement.
mK: Very cool! That is an amazing accomplishment given your impairments! What motivates you?
CB: I don’t want people to do it alone and not know where to find encouragement. I believe God has given me a ministry of hope and to be there for people going through their journey.
mK: Who is your personal hero or are your heroes?
CB: There are so many people who have touched my life at different parts of my journey in life. It is a hard to think of just a few.
mK: Let’s get to know you better. What makes you laugh, cry, angry?
CB: I laugh at myself, I cry when I see people lose their battle to this terrible disease and I get angry when people are misdiagnosed too late.
mK: What would you say is the most interesting thing you’ve ever done?
CB: I did a crowdfunding campaign to do a UK book tour and met a number of inspirational people and lots of brain tumor charities that invited me to their support groups. I was blown away with the support the brain tumour community give each other.
mK: What is the toughest challenge a survivors face?
CB: I think it is the uncertainty and unknowing, it is very frightening and is a huge challenge to cope with but it is not impossible.
mK: What is your guilty pleasure?
CB: Hazelnut Coffee. I absolutely love it. I always have one first thing to get me started ‘YUMMY’!
mK: OK, now we’ll test your creativity… If you founded your own country, what would you call it? What would be your main export?
CB: Claire-Topia and it will export faith and belief in yourself and probably the best Hazelnut Coffee on the planet.
mK: HAHAHA! That is AWESOME! What are is next on your agenda?
CB: I am just starting a You Tube channel where I will share my experiences and encourage others and get to know me. I believe we should never limit ourselves even with disabilities.
mK: Any advice for people or loved ones that get daunting diagnoses?
CB: Take your time to process the situation and don’t go to the internet for information, go directly to brain tumor charities. The internet is misleading as search engines put the first thing on the list as the question people ask, which is completely understandable ‘will I die?’ or ‘what is a brain tumor?’. Go to the charities that are there to process things with you and will have an understanding of your needs.
mK: Tell us something about yourself that people probably didn’t know… anything.
CB: I sucked my thumb till I was 17
mK: Any parting words for all the mAss Kickers?
CB: You are in the right place, mAss Kickers is one of the first places I found online and I was inspired by Eric and his journey and sharing his experience.
I would also say, don’t try and do this alone. It is a journey and it is the new you so be patient with yourself and take help when given.
Claire Bullimore: thumb sucker, you tuber, ruler of “Claire-Topia”, Hazelnut coffee addict, author, UK “book tour-ist”, and driven brain tumour thriver. Thanks for doing the interview Claire! Check out Claire’s youtube, twitter, and instagram. Connect with other meningioma patients in the UK through Aunty M Brain Tumours’ online presence on facebook, twitter, and the website. Keep in touch! We look forward to seeing what you do next!