Welcome back to my blog. This week I don’t just have one guest, I have two. These two have an extraordinary story which they can’t wait to share. This is the Brain Tumour Twins’ story.
Elly and Janice: The Brain Tumour Twins
We are the Brain Tumour Twins – best friends diagnosed with the same brain tumour.
What are the odds of two best friends being diagnosed with exactly the same brain tumour? Microscopic, but that’s exactly what happened to us. We’re Janice and Elly – aka the Brain Tumour Twins – and we were both diagnosed with meningiomas – low grade tumours that grow in the meninges membrane surrounding the brain. The highs and lows of this one-million-to-one coincidence has given us an even closer bond and we’re determined to make it count.
We met back in 2006 while working together at the summer opening of Buckingham Palace and quickly became firm friends.
“We share the same values and the same sense of humour. We tend to laugh at silly things together and we’ve had an in-joke – for longer than either of us can remember – about the two of us having ‘agile minds’ (meant completely ironically), which makes it even more bizarre that we both have an illness related to our brains.” – Janice
After working together we also shared a house in south London. In 2012 Elly was diagnosed with a meningioma, and in 2019, Janice was diagnosed with the same, but in a different location in the brain. Janice had a craniotomy on her birthday, 16th December 2019, to remove her tumour. She also underwent a gruelling six-week round of daily radiotherapy in October-November 2020. She also had post-surgical physiotherapy to regain movement in her limbs and has ongoing physiotherapy. Elly has had two surgeries to ‘de-bulk’ the bone to create more space for the tumour. As Elly’s tumour is inoperable, her only option is to manage the meningioma and so in October-November 2019, completed a gruelling round of daily radiotherapy for six weeks, which doctors remain hopeful will mean the tumour stops growing.
Throughout our treatment we’ve been really lucky to have each other for support during treatment and diagnosis. After a radiotherapy session or difficult appointment we always have someone to call, someone who understands because they’ve been there too. There’s no pressure to ‘cheer up’ or ‘or don’t worry’ just support and empathy of a shared experience.
I had my second surgery while I was on maternity leave and obviously recovering from surgery with a baby to look after was difficult. Radiotherapy was very tiring and I was unwell for about 3 weeks afterwards. It was great to have someone who understood at the end of the phone. – Elly
We had each other but we know most people aren’t so lucky. This is why we’re on a mission to raise £30,000 for the charity Brainstrust, representing the number of people diagnosed with a brain tumour every year in the UK. We started with our 30 miles for £30k in phase one of our fundraising campaign and raised a fantastic £9,000.
This money will pay for Brainstrust’s brand new website which provides help, support and advice to people living with a brain tumour. A website might seem a simple thing, but it will make a massive difference meaning more people diagnosed with a brain tumour will access the support and help they need.
We’re so happy with what we’ve achieved, but we want to do even more!
Brain tumours are the biggest killer of children and adults under 40 of all the cancers, and yet it’s also the most underfunded area of research. We’ve now launched the next stage of our fundraising campaign: the Brain Tumour Twins Prize draw!
We have amazing prizes including donated items from very generous celebrities, well-known brands and independent retailers. Highlights of the fantastic prizes you are in with a chance of winning include:
- A signed England rugby shirt, donated by Joe Launchbury
- 4 night stay in a Brittany summer house
- A 2 hour private helicopter tour of central London
- A three course meal for 2 from chef and author Ixta Belfrage
- An electric Guitar with Cable, Amp, plus a private One-To-One Guitar Lesson Voucher
If 100 people bought 4 tickets each (£2,000) we could fund 100 hours of support through Brainstrust’s 24/7 helpline. If 500 people bought 4 tickets each we would raise £10,000 – enough to fund 100 brain boxes (a brain box contains a number of essential things to support and provide information for brain tumour patients and their carers) and help 20 people to get a private second opinion. For more information and to enter the prize draw head over to https://braintumourtwins.com/ and follow us at https://www.instagram.com/braintumourtwins/ @TumourTwins https://www.facebook.com/braintumourtwins
Thank you so much for reading, it means a lot that we can share our stories and help to raise awareness of brain tumours. Please don’t forget you can subscribe for my weekly blog and other guest bloggers. Thank you so much and remember you are loved.