Claire Bullimore Brain Tumour Story

11 Things You Need To Do If You Have Survived A Brain Tumour

IF YOU HAVE SURVIVED A BRAIN TUMOUR

Once you have left the hospital and are sent home with several drugs and a few letters saying you will be sent to a rehabilitation centre in due course. It can feel very frightening.

You are being taken care of in hospital 24/7, but when you leave the hospital, nobody gives you a ‘How-To Guide’.

I have walked the walk myself, and I know what I wished I knew back then to lessen the stress of the whole thing.

You can read my entire story HERE

Here are 11 Things You Need To Know If You Have Survived A Brain Tumour to give you a heads-up on what may help you going forward waiting for recovery.

  1. Facebook Groups

Social Media can be really great to connect with friends and find out what is happening in their world but, it also has Facebook Groups where there are several Brain Tumour Community Groups.

My Top Facebook Group  Suggestions Free Download  

  1. Freedom Pass

Check with your GP if you are now entitled to free public travel. In London where I am, I have a Freedom pass in certain areas. I am now partially blind. Depending on the disability you may have post-surgery, You can get a form from your local council. I can’t tell you how beneficial this has been for me financially

  1. Free Meds

If you are now on seizure medication, you may be entitled to Free Medication.  This can be for a number of disabilities if you are on something long term. The hospital and my GP never told me that. I found out 3 years later from my local Pharmacist. This way you can save your money on prescriptions as I did. Use the money to buy some cookie dough, Ben and Jerry!

(If you are on a lot of tablets, try getting some Tablet Holders online)

  1. Ways To Help With Speech Problems

My surgery incision was on the left side of my head, one of the parts of my brain that was affected was my speech. When I first tried to speak I couldn’t get any words out, I had trouble finding, words. When I did say a word, it was nothing to do with the word I was trying to say. This doesn’t happen to everyone. It depends on where the operation has been done.

Your memory will get better over time, and you will more than likely see a speech therapist. I definitely had some excellent Claire-isms. I’d try to say ‘Can I have some Po-po cops’ instead of ‘Can I have some coco pops’. I still 10 years on, call my shoes “my feet”.

“where are my feet”

I get quietly excited if I can say a word with over 3 syllables in it. Building up vocabulary is always getting better.

Relevant Posts:

What To Do When Doctors Say: We Cannot Help You

Do Adult Colouring Books Really Help With Stress?

Here is a Great Way to Help with Memory Problems!

Gift Ideas for a Friend in the Hospital or Recovery

 

11 Things You Need To Know If You Have Survived A Brain Tumour

  1. Ways To Help With Memory Issues

My memory was terrible when I came out of surgery. Take a recorder or take somebody with you for all appointments, so you don’t forget the conversation later. If you are taking a recorder (use a Free App), you must tell the doctor you are using it.

(Bit On The Side: Here is a reason you may be making your memory worse)

  1. Ideas To Keep Busy while stuck at home

When you are bored, and that will happen, which gives you time to overthink things and that can spiral into depression, or you become completely unmotivated. When we have been given what feels like a 2nd chance at life. We need to make sure we start with the right mindset.

Try some of these great ideas, depending on your situation and how much you are able to do. Never overdo things, just do things at your time. – Click Here

  1. Be Inspired by these books, eBooks, or Audiobooks

A way to inspire you may be to read other people’s stories. Inspiring, Real and Honest accounts.

Stories by People From All Over The World! who heard the words, ‘You Have A Brain Tumour.’

These books may be helpful to people newly diagnosed and to family, friends who want to understand more.

Read my top suggestions HERE

  1. Confidence Building with CBT

Look online about Cognitive Behaviour Therapy. It is a talking and practical therapy where you change your thought process which may be causing your anxiety or anger or a number of personal struggles since your diagnosis. Find Out More Here

  1. Be kind to yourself.

While you try to come to terms with everything. Cry at any opportunity to get the overwhelming feeling out of you. Do it into a pillow quietly or find your best confidante to talk about it. From my own experience, I just shut myself off from the world and reached out to God and to my 2 besties.

  1. Seek counselling

If you are struggling to deal with life and struggling to talk about it to family or friends, seek counselling. It was one of the best things I ever did.

  1. Brain Tumour Information.

It is not signposted from the hospital what to do next, and you may be left thinking, what now! I highly suggest you look at one of these charities which have loads of information.

Here are some of my top charity suggestions:

Relevant Posts:

Feel Better About Yourself With These 4 Ways

Puzzles For Brain Tumour Patients

Journals To Write Your Thoughts Down

What have you learnt on your journey so far?

 Leave a post below

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

Follow:
ClaireB
ClaireB

Find me on: Web | Twitter

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.

Related Posts:

My Brain Tumour Story

Top 10 Ways To Stay Focused During Conversations

Mother of 4 was Diagnosed with a Hemangioblastoma

 

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?


Related Posts

My Brain Tumour Left Me Incredibly Positive

I Was Diagnosed With A Central Neurocytoma

I Won’t Let My New Diagnosis Define Me

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

Follow:
ClaireB
ClaireB

Find me on: Web | Twitter

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