Charlotte’s Pineal Cyst Story

Charlotte Light, mum of two was having unmanageable migraines and was starting to lose sensation down the right side of her body. Her speech had become slurred. She was soon diagnosed with an inoperable pineal cystic tumour.  She refused to be told ‘no to surgery’ in the UK. She found a surgeon willing in Australia.

Here is Charlotte’s Brain Tumour story:

When were you diagnosed?

I was admitted to hospital via A&E when my husband took me in over the late May 2017 bank holiday weekend. I had a blinding headache and was so dizzy I could barely walk in a straight line.

I started to lose sensation down my right side and my speech became slurred. At first, they suspected I was having a stroke but MRI showed a growth in my brain.

I was discharged from the hospital, I was told I would receive a letter to speak with a neurologist. I was just told to have bed rest. I couldn’t walk without feeling seasick and the headaches were extreme. I had a huge list of questions and was convinced I would be receiving bad news.

I’d come from running regularly and living the life of a busy mum, to bed-bound and desperate in just a few weeks.

When I finally met with the neurologist, he was very matter of fact and told me there was a growth in my pineal region, that it wasn’t cancerous and that it couldn’t be removed due to its location (the absolute centre of my brain).

I was dumbfounded that something the size of a walnut in the middle of my head could be harmless, but I accepted what I was told and took medication to control the symptoms.

Over the next six months, my symptoms got gradually worse and worse. I was bedbound by January 2018 and could just about get the kids out to school in the morning and through the bath and into bed in the evening and the rest of the time I was on my back in a darkened room.

The drugs made me woozy sick and the headache was relentless. I saw three different neurologists and they all told me that operating was not an option unless I had severe hydrocephalus. I begged for help but was told the risks of surgery outweighed the benefits.

At the end out of pure desperation, I started researching neurosurgeons abroad who had successfully operated in this area.

I found three, two in the US and one in Australia. In the end, it came down to cost and the surgery by professor Charlie Teo in Sydney was marginally more affordable and he had fantastic outcomes for his patients so I decided he was the man to help me.

I travelled to Sydney for surgery in late April 2018.

How are you doing now?

Life straight after took some adjustment. I was so happy to be free of symptoms that I wanted to race back into the life I’d put on hold for a year. However, my body was pretty quick to tell me I needed to slow down.

I found crowds very hard to manage, all the lights and sounds made me anxious and I experienced a lot of “flooding” when I just needed to leave a situation if it became over stimulating. It took months for me to learn the signs and know what scenarios to avoid and what scenarios were “safe”.

After 15 months I finally realised I wasn’t planning my day so precisely and then realised I was enjoying shopping and socialising more than I had been.

I think it happened so gradually but it was a relief to finally say “I’m me again. At last”.

What is the toughest challenge a survivor’s face?

Getting back to who I was before all this happened. Getting back in my trainers and running. Getting my heels back on and partying! But seriously, to be confident that this is all behind me and try not to be anxious about my health and the future.

It’s so hard to “forget” something so traumatic, it’s become so central to my life, I need to just be Charlotte, not Charlotte with the brain tumour or Charlotte in the wheelchair. Just plain Charlotte would be perfect.

Any advice for people or loved ones that get daunting diagnoses?

  • Try to stay calm.
  • Write things down into small little lists or a timeline, bite-size chunks if you will.
  • Remember, so much is possible these days.
  • If the doctors tell you it can’t be done, question them.
  • Research.
  • Don’t be afraid to ask questions, to your doctor, to people you connect with online, the internet has opened the world up and we now have access to so many sources of information.
  • knowledge is power, and you’ll feel so much happier knowing your stuff!

What do you do now in your life?

I’m coming up to 18 months post-op and life is almost back to normal. I’ve had a few hiccups along the recovery road. I had meningitis in November 2018 and in June this year I started to feel gradually less sensation in my feet, then lower legs until I couldn’t move them at all.

I was admitted to hospital for tests and ended up staying a month! I had intensive physio to help me learn to walk again.

The brain is so complex and when it’s been cut open it can do some very strange things to how the rest of your body works. I no longer use a wheelchair but I have altered sensation and gait but I hope that this will gradually improve over time too.

What motivates you?

My kids, my husband, my wider family and incredible friends. I hate missing out on having fun and I feel like I’ve had my life on hold for two years, I’m determined not to miss out anymore.

Charlotte Light was diagnosed with a Pineal Cystic Tumour and told her brain tumour was inoperable

Who is your personal hero or are your heroes?

Medical staff! Wow, I have met some incredible people over the past two years but the one who made the biggest impact on me was my neurosurgeon, Charlie Teo. He really is the coolest, most down to earth and an incredible man I’ve ever met.

He takes on the most complex cases, the patients other surgeons have said have no hope and he operates.

He doesn’t claim to perform miracles, but even if he gives someone 6 more months, 6 weeks or 6 days, he says this is enough to make it worthwhile. I admire that spirit, that positivity and the innate talent he has to be able to perform the complex surgeries he does every single day.

What would you say is the most interesting thing you’ve ever done?

Other than surviving brain surgery? I don’t think I’ve ever done anything truly fantastic but my life pre brain surgery and pre-kids was in the high powered world of investment banking. I worked on trading floors for years in a hugely high-pressure environment, I really did work hard, play hard.

I loved the gym and running and once took part in the gherkin challenge to run-up to the top of the tower for the NSPCC and thrashed my husband as he thought he’d sail past me, that was a fun day. We have set a rematch for as soon as I’m back running again, maybe 2020?

What are/is next on your agenda?

I’ve loved writing my blog and have been asked to write a few pieces over the last year, I’d definitely like to explore that a little more. If I can make people laugh while learning a little about some of life’s challenges then great. If I can help others in a similar situation then even better.

I absolutely love to travel and I really want to take my kids to Australia and to visit my surgeon once again and shake his hand and thank him for giving me my life back. I want to raise awareness and do charity work to help raise funds for other affected.

Tell us something about yourself that people probably didn’t know… anything?

That I’m actually pretty shy and I love my own company. I’ve become a lover of quiet since my operation and I often retreat to a darkened room and immerse myself in a podcast or an audiobook. I got into them while I was recovering and avoiding screen time and they’ve become my go-to place for relaxation. I used to be a crowds person, the soul of the party, now I watch more from the sidelines and prefer smaller groups.

I wonder if I’ll change as my recent experiences diminish to the corners of my memory, or will I always be this calmer version of myself?

Conclusion: Charlotte Light, thank you so much for sharing your story. I am so glad your Pineal Cystic Tumour was successfully removed. Brain tumours do not discriminate and it can change anybody’s life in a heartbeat. I wish you all the best going forward and look forward to seeing your Blog.

Top Tips For A Brain Tumour Survivor

Charlotte Light talks about her Inoperable Pineal Cystic Tumour

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