Meet Janice and Elly – ‘brain tumour twins’

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Janice and Elly have a connection like no other. Their friendship began when they met at Buckingham Palace over ten years ago. At the time, Janice and Elly both worked for the Royal Family, and it wasn’t long before they became firm friends. Their bond quickly grew when they moved in together as roommates, sharing a house in London. Reflecting on that time, Janice said:

“Ever since we lived together we have had a running joke about our ‘agile minds’ – a reference to our ability to make tenuous connections between subjects and leap from one topic of conversation to the next. Little did we know just how ‘agile’ our brains would become!”

An unexpected diagnosis

One ordinary day, Elly attended a routine eye exam. She had experienced some swelling in her eye, but presumed her contact lens had caused some irritation. Sadly, Elly was soon diagnosed with a non-malignant meningioma behind her eye, which had also grown into her skull bone.

With Elly’s eyesight at risk, she underwent two surgeries to ‘de-bulk’ the bone, creating more space for the tumour. From October to November of last year, Elly completed a grueling round of daily radiotherapy, spanning six weeks. As Elly’s tumour remains inoperable, the doctor’s hope that her treatment will stop the tumour from growing.

To this day, Elly has been supported by her loving family, including her husband and three year old son. Whilst some of her friends didn’t quite understand the reality of being diagnosed with a non-malignant brain tumour, Elly could always count on the compassion she received from Janice:

“Janice[…] was always supportive – she was never one of those people who dismissed my symptoms and worries and said things like, ‘It’s great because it isn’t cancer!’ or, ‘It’s so great because you haven’t lost your sight’. Instead, she listened to me, tried to understand how I felt and how to support me. Janice said ‘Yes, this is really awful. How can I help you?'”

“What are the odds?”

Whilst Elly was receiving treatment for her brain tumour, Janice woke up with temporary paralysis and her foot contorting. Janice suspected she’d had a seizure and went to A&E. She was later examined and told that what she had experienced was not a seizure. The weakness in her limbs was a concern, so she was referred for an urgent MRI. Months later, as Janice parked up her car, she began to experience the same symptoms. Following further investigation, Janice was diagnosed with an atypical meningiona – the same diagnosis as her dear friend, Elly.

““It took a long time for me to get diagnosed. I suffered for years with what I now know were direct symptoms of my tumour, but I couldn’t recognise that at the time. My symptoms included confusion, mental exhaustion and extreme difficulty concentrating. At the time, my work environment were not supportive, and I experienced workplace bullying which affected my confidence massively. Looking back, I’d had symptoms for years. They were the same ones associated with the chronic stress and anxiety I had experienced at work, so I didn’t realise there was more to it than that.”

Despite the devastation that a brain tumour diagnosis brings, Janice and Elly’s bond grew even stronger because of their shared experience and true understanding.

“We’ve lived together, worked together, grown into real-life adults together, and now… have matching brain tumours together. What are the odds? Well, microscopically low, and yet here we are.”

Reflecting on her personal experience, Janice shares the importance of confiding in someone who knows how what you’re going through and how you’re feeling. Janice said:

“Some of the reactions you get can feel patronising or insensitive, even though you know people mean well at the time. You appreciate their intention to be nice. Almost always after finding out about our tumours, the first thing we’d hear from people would be, ‘Oh, it’s benign? Oh, well that’s fine then! What a relief!’ But it wasn’t a relief to us! So it’s been great to have someone who really understands that it’s good to be positive, but that there’s nothing really fine about this experience. The trauma of the diagnosis alone is life-changing before you even have a chance to process anything else.

I can come out of a radiotherapy session that’s left me in tears, give Elly a call and she just gets it because she’s been there. So instead of trying to cheer me up she says, ‘It’s terrible, really terrible and we have a chat about that.’ There’s no pressure to ‘cheer up’ or ‘or don’t worry’ – just support and empathy of a shared experience.”

In December of last year, on her birthday of all days, Janice had a craniotomy, and just last month, she completed a six week course of daily radiotherapy treatment to try stop her tumour from growing any further.

“It’s been great to have someone who really understands”

Now, on a mission to connect and support the wider brain tumour community, Janice and Elly have created ‘The Brain Tumour Twins’ raising funds for brainstrust in support of others with a meningiona diagnosis.

Their shared experience, caring personalities and thriving careers combine together to fuel their mission for 2021. Elly, a Trusts and Foundations Officer at CAFOD, already spends her days tackling poverty and injustice across the world. Janice, a qualified coach and facilitator, is also the founder of ‘Eating With Elephants’: a supper club tackling loneliness and social isolation through the power of communal storytelling. Now, in addition to their already-heroic day jobs, these two best friends have set themselves an extraordinary goal – raising thousands of pounds to amplify and extend direct support available to meningioma patients and their loved ones.

This coming Wednesday is Janice’s birthday. It also marks one year since her craniotomy. The pair have chosen this day to begin their fundraising efforts, hosting their first virtual event.

Janice and Elly want to recognise the 30 people who are diagnosed with a brain tumour every day here in the UK. That’s why they have decided to walk, run, swim or cycle one mile, as will 30 of their closest friends from across the globe. Each mile honours and recognises the life-changing personal journey that Janice and Elly know all too well.

Having raised over £3,100 already, Janice and Elly are committed to making an incredible difference. To follow and support them on their journey, please visit their JustGiving page or search ‘brain tumour twins’.