#BTVoice: Sharing Our Knowledge

Throughout Brain Tumor Awareness Month, we asked you to bring your unique perspective and expertise to our two-week, online Brain Tumor Awareness Month campaign, #BTVoice. You tweeted, posted on Facebook, and submitted through this page your knowledge and experience using the hashtag #BTVoice. 

#BTVoice Gallery 

You can view the gallery of the BTVoice infosnaps on our Facebook page.

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#BTVoice Submissions

Submitted by Kelly Nori on May 30, 2014
As a parent of a cancer patient, keep a detailed list of all medications AND their generic equivalents. Know the metric system and how to convert liquid medications. Know which pharmacies stock liquid drugs for younger cancer patients. Keep a "chemo " kit in the car. Stock with a change of clothes, sanitizing wipes, (anything that makes your child comfortable).

Submitted by Kami Martin on May 30, 2014
Learning to embrace uncertainty allows you to be at peace and overall see the positive in every situation.

Submitted by Heather Z on May 30, 2014
That a 13 hour brain surgery doesn't need to define the rest of your life. It does get better. The pain does lessen. #BTVoice

Submitted by Melanie Coval on May 30, 2014
I never values life as much until I was a survivor!

Submitted by giselle bartolo on May 30, 2014
the tumor can be gone and the scan can be clear, but that doesn't always mean that right away, everything will feel all better. heck, sometimes, everything will feel all worse. sometimes the path to fixed is a little less straightforward than that, sometimes it takes a little longer than that. and that can be rough. but you know what? that's okay. it's okay. and slowly but surely, you'll be okay, too.

Submitted by Lesley Pander on May 29, 2014
Don't be afraid or intimidated by the doctors. Don't settle for baseline information if you want detailed information. If the answer doesn't make sense, keep saying "I need you to be more specific." or "Don't tell me what you think I want to hear, tell me the truth.

Submitted by Susan Beymer on May 29, 2014
After being diagnosed with a brain tumor, it is natural to want to find out as much information as you can about your specific type of tumor. Just remember that every person is different. Even with the same type of tumor, the symptoms, treatment and recovery of each patient can vary greatly. Try not to compare your case with others, but do talk to your doctors if something seems very "out of the norm". One thing I learned is that brain surgery can be like a brain injury, and recovery can take a lot longer than you might expect.

Submitted by Steffanie Flack on May 29, 2014
Understand what an acquired brain injury is & how it might affect you before you have brain surgery.

Submitted by Roxanna on May 29, 2014
TIP: I wish we would've known everyday headaches is NOT normal. Having to wake someone up with an Excedrin just to get them going, is NOT normal. #BTVoice

Submitted by Allison Bishof on May 28, 2014
Always get a second opinion

Submitted by femme hensen on May 27, 2014
bring all your research data to oncologist/neurologist next visit and discuss/share the standard treatment and what is available worldwide.

Submitted by Catherine Sansing on May 27, 2014
In the final stages of brain decline, a teddy bear serves as a great comforter.

Submitted by Amy on May 27, 2014
When meeting with your Neurosurgeon, record the meeting (you can easily use your cell phone) Listen to it when you get home, call the office to ask any questions you might have. #BTVoice

Submitted by Gay Gawron on May 27, 2014
My son had astrocytoma and later GBM. This effects the entire family. Everyone suffers. It was so hard to watch his decline that eventually everyone abandoned him. This can be an isolating disease. Families need support and education so that they can help the patient.

Submitted by Lyndie Miller on May 22, 2014
I had a hemangioblastoma and so they stretched my neck muscles to get to the tumor. Definitely do physical therapy afterwards!!

Submitted by Shannon on May 22, 2014
Nov. 1, 2010 I looked at my best friend with her beautiful cat eyes one pupil largely dilated and said "it's time". After 4 years of emotionally and physically assisting my best friend from the effects of a brain tumor, the time had come that she HAD to have it removed. We gathered a few personal things for an undetermined stay at the hospital. There is never a "good" day to walk in to a hospital for brain surgery. Your imagination goes through a gambit of possible outcomes. I'll never forget the raw emotion of that day. Adonnah and I became best friends in 1998 because of our strong Christian faith, and it is what has been the bond that has brought us through some of the darkest hours. What we knew before we parted ways that morning, was that whatever events transpired over the next 24 hours the outcome would be healing. What we wish we knew was how that would actually play out. The surgery was a success and because of Adonna's dedication to a clean diet packed with nutrition her initial recovery was a mere 5 weeks despite the 6 months the doctors were expecting. It has been almost 4 years since the tumor was successfully removed and although the surgeon gave her a full recovery prognosis, I still assist her with certain tasks since the 9 1/2cm tumor had blocked nerve pathways to her left arm. What I can tell you NOW is that her ATTITUDE and what she BELIEVED, had and continues to have everything to do with her success. THIS is the year of her COMPLETE restoration!!

Submitted by Shana on May 21, 2014
Do your research! Know all options and get 2nd, 3rd, even 4th opinions. Choose the surgeon who has the best results and make you feel most comfortable. Make this your JOB! It's your health and there are too many people who need you to stick around! So take care of you! - I'm 3.5 months post surgery to remove a meningioma from behind my left ear. I'm thrilled to get to share my experience.

Submitted by Roseanne Service on May 21, 2014
Before surgery, prepare your mind. Accept whatever new version of you might come afterwards. I'd rather focus on living thankful than wishing I looked perfect!

Submitted by Jeanna Donoho on May 20, 2014
Radiation WILL make your hair fall out where the radiation is focused. Prepare for some interesting hairstyles. Only about 3/4 of my hair grew back.

Submitted by Dana J on May 20, 2014
Knowledge is power. Seek out other survivors and learn from them. Share your story, and listen to theirs. You will always learn something. Experience is more precious than gold!

Submitted by Jessica Robbins on May 19, 2014
25 years ago my husband and fa oour sons was diagnosed with a Stage 2 Posterior Fossa Ependymoma brainstem tumor, rare in adults and a childhood cancer. Symptoms were vision problems, balance problems, severe neck pain, headaches, and vomiting only in the mornings. Always listen to your gut feelings as we went to the ER and asked for a CT scan to be performed in which it was found. Surgery was able to remove full tumor but being located in the brainstem left quite a bit of damage after the removal. After a eight month hospital stay and his will power to get better and get home to his family, he learned to walk and talk again. The tumor has damaged lung function and swallowing which resulted in feeding tube and ventilator at nights but we thank God that there is always that hope and miracles and thank Doctors for their expertise. Never give in, fight all the way!!

Submitted by Ruthe Smith on May 19, 2014
1. Don't be afraid to ask for 2nd and 3rd opinions. 2. Do you own research. 3. Build a team of doctors, family and friends that you trust to help make decisions. 4. Lower the stress in your life by meditating, exercising, eating good food, and enjoying life.

Submitted by Beth Finn on May 19, 2014
Try to keep a sense of humor about things. If you keep laughing, you can't spend your time crying.

Submitted by Shelly Mundell on May 19, 2014
14 year GBM survivor. Have FAITH in Jesus and have a good support system. Also, stay current on treatments and new trials because you never know when a tumor will come back. Thankfully mine has not. :-)

Submitted by Mary Grampp on May 19, 2014
My husband is currently still being treated for a Glioblastoma. He is a walking miracle, going on two years now! Our advice would be to always take a moment each day to see and even record all of the miracles in your life. Miracles happen every day, whether they be big or small, they are miracles, and they embrace each of us and show their face in so many different inspiring lights. What a beautiful thing that is and tender mercy from God for each of us, to grant us with miracles every single day. Much love.

Submitted by Sharon Burns on May 19, 2014
My tumor was benign so I feel somewhat hypocritical in giving any advice. But if you have time to do research prior to your surgery and can go for another opinion, by all means, do as much as you can! Ask lots of questions and always take someone with you to doctor visits to help write things down.

Submitted by Melanie on May 19, 2014
When someone offers help, let them help you. Rest is a must after brain surgery. Just relax.

Submitted by Marian Salzman on May 19, 2014
After two brain tumors and surgeries, I can report recovering is a work in progress and as the brain heals, you see the world in a new tint. After each surgery I was back to demanding meaningful work with insanely bad hair in two months. Brain surgery, with an awesome surgeon, means awful hair for 7 months...

Submitted by Shellie on May 19, 2014
As a parent, never doubt the strength and courage of your child experiencing a brain tumor. He or she will amaze you.

Submitted by Patti & Ron on May 19, 2014
23 years ago we started on this journey and could not imagine we would have a future. Never stop living, hoping and dreaming each day you are given. Share your story with others you never know who you may impact.

Submitted by Anita Adams on May 19, 2014
radiation is worse than chemo. Makes you more tired than you have ever felt in your life. The Hope Lodge in Boston is incredible.

Submitted by Kate D. on May 19, 2014
Build a great team of doctors, use them and dont be afraid to speak your mind, You are your best advocate!!!

Submitted by Rose Swensen on May 19, 2014
Write down every question you want answered, bring the notepad and another set of ears with you, and ask for pictures of patients who have gone through the same surgery. Educate yourself and don't be afraid to take your physician's time!

Submitted by Cari S. on May 19, 2014
A survivor is a person who copes with difficulties in their lives. It's a mind- body-spirit experience. Embrace them all!

Submitted by Paul Gaulke on May 19, 2014
I have a number of items to share: - Keep close ties to your nurse. They will have great insight and help. - Do accupcture to help with side effects like nausua - Go to tumor groups to share you issues - Find a good theripist who specializes in helping cancer patients - Look for free services that help - Attend as many of meetings that educate you on the tumor you have - Get off seriods as quick as possible - Talk to others about your condition you never know who else has been touched by the disease - Don't believe timelines for survivial - Search Facebook and internet for people who are living with you disease

Submitted by Erin on May 19, 2014
You aren't alone. Brain Tumors are more common than I could have ever imagined. Reach out to those around you!

Submitted by David Fitzgerald on May 19, 2014
Know what th long term after affects will be on your body... Have great docs you trust like family...

Submitted by Lindsay Pastore on May 19, 2014
Get ready for your life to change! After surgery, you will begin to appreciate and live each day with purpose. It's an amazing rediscovery of life.

Submitted by Mark W. Grace on May 19, 2014
I pray to Jesus all the time. I had an 8.3 cm tumor on the Parietoccipital lobe. I am still hear after well over 40 months. Pray!

Submitted by Jaclyn Sabol on May 19, 2014
No one spoke to me about freezing my eggs before treatment, but I followed my gut, took 2 weeks and did it anyway. Only you know what's best for you: think about what you'll need before, during, and after treatment to resume your life.

Submitted by Kate Walters on May 19, 2014
There is no "time frame" for recovery. Let your body do the thinking for you & listen.

Submitted by Stephanie Lawton on May 19, 2014
My husband is 29 and was diagnosed with GBM stage IV in Feb 2013, following an emergency surgery to remove the mass. He had a 2nd surgery in Oct 2013. One thing I have learned is to use your own judgment and do your own research. Stay positive, stay active, and stay healthy! Spread awareness as much as possible because people are unaware of the seriousness of this diagnosis... He may look fine, but hes not. GBM is the deadliest form of cancer and is way underfunded, it needs ALOT more research and awareness! Our story is at www.Facebook.com/supportingandy

Submitted by Nancy Harkins on May 19, 2014
Try to share facts and knowledge with family and friends. Since my tumors are benign they do not understand the implications and the damage they cause regardless. A Meningioma is a very serious brain tumor. It needs to be treated as such.

Submitted by Neil on May 19, 2014
Use the 'Voice Memo' function on your iPhone to record ALL meetings with your doctors. Listen intently, hear everything, miss nothing!

Submitted by Karen on May 19, 2014
Try to keep your humor, but allow yourself those "poor me" moments too. When I was diagnosed almost 2 years ago with a mixed oligoastrocytoma it changed our world. Luckily I had surgery and haven't had to have chemo or radiation yet. I kept my humor up by naming my tumor. It helped me get through the experience.

Submitted by Gina on May 19, 2014
Make sure to find a Dr. who is affiliated with a center that specializes in brain tumors. Ask about interoperative MRI's, minimally invasive procedures, surgery and recovery times. I was discharged within 48 hours after my first surgery (craniotomy) and 24 hours after the second (minimally invasive albation) both for GBM.

Submitted by Erin Burke on May 19, 2014
Do not stop living. Try to balance family, friends, living, exercise, some fun while in treatment or in follow-up care. #BTVoice ~ Erin, 11 year brain tumor survivor

Submitted by Christie on May 18, 2014
I am a 31 year Oligodendroglioma BT survivor of two brain surgeries from my teenage years...ages 13 and 18. I am now 45. In looking back through the years and to this day forward, have a good support system. I was surrounded with family and friends. ALWAYS get a second and third and even fourth opinions. I have outlived the Dr.s' prognosis. Stay POSITIVE in what is given to you. WRITE DOWN your questions and come to the Drs. office with them. Keep a journal of your thoughts as well as your medical reports. PREPARE for the unexpected. Celebrate monthly birthdays. BE POSITIVE. LET others help, be forgiving, forgive yourself, forgive others. Educate yourself and others - Thank you NBTM. I did not have you all when I was going through my surgeries. Give yourself a good year to heal. My speech was affected with the second surgery, so learned sign language to communicate before my second surgery. It was a good year before I regained my speech. Make cards with basic question/answers to help faciliate communication.Take piano as a form of OT It improved muscle weakness from the second surgery as well to the left arm to hand.... Most important, no matter what the diagnosis, give thanks to God. My life has been touched by others more so than if I did not have the tumors. It is a humbling and rewarding experience .

Submitted by Jeff Long on May 15, 2014
I am a 24 year survivor of 2 brain surgeries, chemotherapy, radiation and stroke which led to being diagnosed with epilepsy...i am a better person and no longer embarrassed by the scar on my head...strongly encourage everyone to donate and give back

Submitted by Pat on May 15, 2014
Get off Decadron as soon as possible! My husband got down to 3mg daily and became very tired if we tried to shave some off the pills. Wasn't until 2 mos of uti's that a Dr switched to hydrocortisone so we could wean in smaller increments, 2.5mg monthly. Down to 40mg, now dropping every 2 wks, but went through shunt infection and c diff along the way. Skin tears, bruising, leg weakness, all side effects. Would have started wean much sooner if I had known.

Submitted by Maddy on May 15, 2014
I may look fine from the outside but still healing on the inside. It is so hard for friends, family and esp. employers to understand because I look fine. So, despite the pressure, take the time to heal first. Everything else will have to wait.

Submitted by Warren Crowther on May 9, 2014
My wife Nidia was diagnosed with Astrocytoma III-IV over 30 years ago. She has had a fulfilling life, continuing to teach 10 years, adopting one child and having a healthy one herself. She follows doctors orders generally, but adds to them and with their consent varies them, based on networking with medical researchers and other extraordinary patients. We know now she should have had steriod injection along with the radiotherapy to mitigate the radionecrosis which will manifest itself in time and has produced her major subsequent health problems. We learned she should not eat her favorite foods when doing chemical therapy, because she will form a rejection of them. She has had personal goals each step of the way, and we have studied how she can most likely achieve them.

Submitted by Holly Houska on May 9, 2014
Brain surgery is unlike any other. The "command center" affects every system in your body. Be patient. Be gentle with yourself. Accept every offer of help from friends/family. My doctor told me it would take two years to recover from my surgery. At the time, that seemed impossible to me. Today, I think he underestimated. No one can understand what you are going through quite like someone who has been through it. NBTS is an excellent source of community. My surgery was performed at the Mayo Clinic. Mayo is outstanding in every way. Highly recommend the neurology/neurosurgery departments.

Submitted by George on May 9, 2014
6 yr gbm survivor, always do your research and follow your instinct .never be afraid to say no! To a doctor. And ask for another option, never make a decision when your stress or afraid, always believe something good is going to happen, be patient you life has forever change except that, gives you freedom.

Submitted by vivian soto on May 8, 2014
education of Brain tumor and Shunts before being send home from hospital.what you should expect during recovery..ext...

Submitted by nick on May 8, 2014
I have more than a dozen BT'S for the second time in my life. u can servive.

Submitted by Linda on May 8, 2014
Stay positive. Don't accept a death sentence. I was diagnosed with Glioblastoma multiforme i March 2007. I am still here in May 2014, and doing well.

Submitted by Brett Johnson on May 8, 2014
If you can, before surgery, read "Preparing for Surgery: Heal Faster." Changed my whole experience. If you're having radiation, read "Songs for a Lead-Lined Room." We ended up making a cd for my drives into treatment.

Submitted by Marianne Carey Hayes on May 8, 2014
Check out Novocure as tumor treatment field therapy for brain tumors

Submitted by Sharon Morin on May 8, 2014
Make sure you have a person with you for all of your pre and post surgery appointments; you'll be glad you had a second set of ears. Doctors may be hesitant to discuss what you can expect re: length of recuperation, possible side effects,etc. But get as much info as you can. Believe that you will feel better. It may take longer than anticipated (it did for me), but BE PATIENT.

Submitted by Liz on May 3, 2014
Things to do before brain surgery: beauty tips edition 1: Get your brows did 2: Get your nails did 3: Shave your head

Submitted by Tim Rogers on May 2, 2014
Get a notebook and take notes...there is sooo much information to remember.

Submitted by Sarah Eve Ridgeway on May 1, 2014
I found it helpful to be organized for when it's difficult to think. I set up a big binder with sections. One for each Physician, one with my medical history, one for tests... I took this to all of my appointments. I also have a separate binder to keep advice, tips and handouts. I also had a sheet of paper for every week that I recorded all of my symptoms that way when I met with the oncologist (weekly) it was easier to review my symptoms. I got creative with the symptom sheet and made each one pretty with the days mapped out. This way I didn't feel down when I was adding to the list. It was appealing to the eyes. I hope this helps someone. Initially it takes time to set up, but it was worth it.

Submitted by Kristine Neher on May 1, 2014
I have been dealing with Glioblastoma for the past 2 years. Johns Hopkins is a great place for surgeries and treatment!!

Submitted by G. Gross on May 1, 2014
Just as BT patients need assistance while undergoing treatment, so do their caregivers. It's OK to say "yes" to help - do not rob others of the chance to be able to do something, however small, to make the BT warrior or their caregiver's life a little easier.

Submitted by Frances Harder on April 30, 2014
1) Remember you are your own best advocate and don't wait to see a doctor for any symptoms! Only you know your body as well as you do! If you aren't being taken seriously, find another medical professional and if you are in the military, go immediately (within the first three months- because after that you will be labelled and sent to social workers as being over stressed so go now!) to a CIVILIAN doctor if you are being told "it is all in your head" and bring your list of symptoms! Never give up! 2) Just read this gem: "Carry a Medical ID Card identifying yourself as having a non-shunted hydrocephalus condition!!! 3) If you are a recovering Military person, who has the ability to take advantage of second career training programs, take your time to make your second career educational choices! Do not rush into it. You need time to recover, (like an entire year) heal and start over. 4) Be gentle with yourself. 5) Learn the power of forgiveness, as this will allow you to keep moving forward. 6) Trust yourself :)

Submitted by Amber B. on April 30, 2014
If you feel there is something wrong or something more to your symptoms or problems, do not take no for an answer! Keep pushing until all tests have been done and/oe get 2nd and 3rd opinions! If I had not done this I would not be here today! I just knew I had a tumor and something was seriously wrong. No one believed me not even family/friends. My doctor thought I was a hypochondriac. I went to numerous appointments with my primary care and ER visits befor I developed 3rd nerve palsy in my left eye and my doctor finally ordered the MRI that showed a tennis ball sized pituitary macroadenoma. I had even had a CT at the ER that they claimed was clear!

Submitted by Debra Askanase on April 24, 2014
I love the National Brain Tumor Society!