Claire Bullimore Brain Tumour Story

I Was Diagnosed With A Central Neurocytoma

Amber Spicer was diagnosed with a Central Neurocytoma

Amber Spicer was diagnosed with a Central Neurocytoma on October 23, 2016. She shares her experience and how after her ordeal, she decided to make every day count and put together a to-do list. Here is my interview with her and how inspiring she really is.

Hi Amber, how did you find out about your diagnosis?

While driving home from work one night, all of a sudden I had no idea how to get home. I called my boyfriend at the time, and when I read the street signs to him, he told me that I was only two blocks from the house and asked if I needed to go to the hospital since I was very confused. By the time I got to the hospital, I couldn’t walk, couldn’t raise my arms, and had forgotten my social security number and the year I was born. After a CT scan, a nurse came into the room and broke the news to me by saying, “You have a big problem.”

My entire life is so improved! Obviously, without the brain tumour and with those symptoms gone, I am able to enjoy life significantly more.

What were your symptoms?

Oh my gosh, I had a lot of symptoms. In retrospect, it was super obvious that I had a brain tumour, but at the moment it seemed dramatic to even think, not to mention a voice that concern. In addition to almost daily migraines with flashing aura and throwing up, I also had a dark spot in my vision, my arms would randomly go numb, I could continuously hear my pulse crunching in my right ear, and my field of vision appeared covered in spider webs every morning when I woke up.

How are you doing now?

My entire life is so improved! Obviously, without the brain tumour and with those symptoms gone, I am able to enjoy life significantly more. I am fortunate to not really have any lasting adverse effects from my surgery or treatment. I had a craniotomy on October 28, 2016, and Gamma Knife Radiosurgery on May 15, 2017, to treat a residual that was beginning to grow back. I drive 15 hours to Vidant Medical Center in Greenville, North Carolina, where I had my surgery and radiation, once a year now for follow up MRIs, as Central Neurocytomas have a 1/5 recurrence rate.

What do you do now in your life?

I work in disaster recovery as a Volunteer Operations Coordinator. We are specifically responding to the August 2016 Flood that destroyed 150,000 homes across South Louisiana. We are still desperate for volunteer groups.

More information can be found at pslfloodrecovery.com

What motivates you?

Receiving this second chance at life—and especially a life without migraines—motivates me on a daily basis. I try to spread love and positivity, and I try to be better than I was yesterday.

Who is your personal hero or are your heroes?

I have always been hugely inspired by my good friend Johnathan, who battled brain cancer when we were starting high school. Having heard his story, and observing his amazing bravery, I held on to that during my own diagnosis and surgery process. Before brain surgery, I had never stayed in the hospital overnight and never had an IV, not to mention any kind of operation. A lot of the strength I found came from reminding myself about Johnathan’s resilience at such a young age. He has been cancer free for over 10 years now and has a beautiful wife and family.

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

After my surgery, I challenged myself to do 25 new things before turning 26. A good friend nicknamed the challenge “25 and Alive” since it was my first full year of life after having my tumour removed. This helped me to be mindful to take on new opportunities and to say yes more. It’s silly, but probably the scariest experience for me agreed to dance with a stranger in a bar in Italy. Absolutely no one else in the bar was dancing, and I don’t even dance with people I know even when other people are dancing, so it was way outside of my comfort zone!

What is the toughest challenge survivors face?

I think that sometimes it can be very lonely to be a brain tumour survivor. It’s not something that a lot of people have experience with, and so they don’t always feel comfortable discussing it. I personally had relationships end that I never would have anticipated, but also had people step up to be there for me when I wouldn’t have expected them to either. After joining support groups during my recovery, I was surprised to learn how common it is for survivors to have close relationships end, whether that’s with a friend, a spouse, or even siblings or parents. I’d encourage anyone struggling with this to reach out to other survivors, and build networks. Since Central Neurocytomas represent less than 1% of brain tumours, I joined with another CNC survivor as she started a private Facebook group of fellow survivors she had found through social media. Please reach out to me if you are a CNC survivor, we would love to get to know you!

Amber Spicer was diagnosed with a Central Neurocytoma

What is next on your agenda?

At this point in time, I’m really just focused on getting all I can get out of life. I love to travel and am looking forward to attending my grad school reunion in San Francisco early this year. My long term life goal is to become a Collections Manager for an art museum.

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

You are SO much stronger than you think! I have had people close to me tell me that they were surprised by the way I faced my diagnosis, and honestly, I was surprised at myself too. I believe that everyone has that strength in them, but a lot of people are fortunate enough to never have to prove it to themselves. Just trust that things will work out, and from a place that you weren’t aware of, that strength to fight will make itself available to you.

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

When they were removed, I kept the staples that were used on my head after my surgery. They're in a tiny jar, along with the tool used to remove them, on a shelf in my home.

You can follow Amber on Instagram and follow her travels with her here – @spicera

 


Conclusion:

What an inspirational person Amber is. I am so glad she has been able to do things she never would have dreamed doing if it wasn’t for her wake up call from having a brain tumour.

Have you ever stepped out of your comfort zone when something so overwhelming has happened to you and you realised life is short and we must take our days as gifts?


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My Brain Tumour Left Me Incredibly Positive

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Helpful gifts for a person affected by cancer or benign brain tumour

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My Brain Tumour Left Me Incredibly Positive

LAPTOP PHILHARMONIC MY BRAIN TUMOUR LEFT ME INCREDIBLY POSITIVE

My Brain Tumour Left Me Incredibly Positive – Laptop Philharmonic

In July 2016 I had the pleasure of interviewing ‘musician’ Sam, aka Laptop Philharmonic.

You can listen to his original interview about being diagnosed with a brain tumour here.

He shared his personal story about when he was diagnosed with a brain tumour and how he wrote music to channel his feelings about the experience.

Sam had been having seizures on and off for over 4 years. It was in 2013 after feeling unhappy that the doctors were not taking his case seriously that he and his wife insisted on having more investigation.  Eventually, his GP set him up for an MRI.

He finally met a neurologist to discuss his results, and he was given the news that they had found a brain tumour. They wanted to operate quickly.

It was through this experience that he wrote the album Laptop Philharmonic. He tells the story of when he was diagnosed with a brain tumour and his recovery. In addition, he put Laptop Philharmonic together because he wanted to share the insights he had with the world. Sam finished our interview with these words.

“It ended up being an incredibly positive experience, and I hope to pass some of that on to people.”

Now two years on Sam has a new single out in January 2019, and we catch up on how he is getting on!

Hi Sam! How are you feeling now 5 years on from your diagnosis?

Fine, thank you! Quite tired, but I think that has a lot more to do with having a 5-year-old daughter to attend to than it does with my diagnosis.

How is everything going with the first album Laptop Philharmonic?

It's up on Spotify now and on most other major music store/streaming things. I've had plenty of positive feedback, certainly enough that I think it was “worth it” so to speak.

What is your new album My Other Face all about?

Ah, now that would be telling. With Craniotomy, it was obvious what it was all about, and I had a clear story to tell. But it did occur to me that one thing I've always liked in work from other artists is trying to unpick the meaning of whatever they've produced.

I think if I leave people to ponder on the meaning of my new album, they might understand it on a deeper level if they work it out themselves than if I just told them. Kid A had that effect on me – once I'd started to understand what it was all about, its message hit home much harder because I'd had to work to understand it.

Other Personal Stories To Read:

Living With A Meningioma: I Won't Let My New Diagnosis Define Me

I Was Diagnosed With A Central Neurocytoma

Why Do I Blog About Brain Tumours And Breast Cancer?

Are you struggling with anything since your diagnoses and recovery?

Not really with anything relating to my diagnosis or recovery other than feeling a bit on edge when it's time to see my consultant for a check-up. There are plenty of other struggles to keep me occupied though.

What do you do now in your life other than music?

I work as a web developer, I run around after my 5-year-old daughter, I code in my spare time, and I like to draw. Occasionally I have a sit-down.

What motivates you?

My faith. I'm a Christian, and that underpins everything for me. It means I want to be a loving, gentle, kind… it means I aim to be a good person all around, although I often fall short of it.

Who is your personal hero or are your heroes?

Is it a cop-out if I say I think that there are lots of people who are heroic at times out there? All the ones who just quietly get on with trying to do good things. The ones we probably don't even notice because they're too busy just getting on with it.

What would you say is the most exciting thing you’ve ever done since your diagnosis?

Releasing my music into the wild! I'd been producing music for years, but never had anything I was happy enough with to share around. After the operation, I gained a new determination and focus that hasn't gone away since.

What is the toughest challenge survivors face?

Maybe it knows how much of a burden you are to everyone who cares about you. You can't really do anything about it – your body has to recover at its own rate, and no one can reasonably make major demands of you while you're still in recovery.

My wife was about 5 weeks of giving birth to our daughter when I came out of surgery. Also, it was a very hot summer in 2013. It was really hard for her.

On a practical level, not being able to drive doesn't make life any easier…

For people or loved ones that get daunting diagnoses, do you have any advice?

That's a tough one – I guess things can be very different depending on what the diagnosis is, and what suggested treatment you have. I can tell you that my Christian faith was super important – a real source of comfort and strength, and who knows what kind of state I'd have been in without it.

A practical tip might be to take something warm to the hospital with you… I remember being rather cold at night when I first went in.

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

I have the world's highest score in the little-known video game Ostrich Island. Well, last time I checked anyway.

Find out more:

Website: Laptop Philharmonic

Twitter: Here

Facebook Page: Here

You can listen to Laptop Philharmonic Original Interview Here:

 

My Brain Tumour Left Me Incredibly Positive - Laptop Philharmonic

 

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Claire Bullimore brain tumour Story
Helpful gifts for a person affected by cancer or benign brain tumour