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Welcome to my little corner of the internet. Here's where I will be discussing life with a terminal diagnosis, specifically a brain tumor known as glioblastoma, or GBM. I had surgery to remove the tumor from my left temporal lobe, deep inside. I have stories all about treatment, recovery, and living life despite the bad news.

Thanks for visiting. Hope you have a listen! Check out the ARCHIVE for more episodes!! 

Dec 3, 2017

TRANSCRIPT 

This is Episode 017 of Glioblast‑O‑Cast. What do I do for glioblastoma awareness? 

Hello, and welcome to Glioblast‑O‑Cast, the podcast about my life beyond glioblastoma. I'm your host, Meg Turecek. 

In this episode, I will answer the question, What do I do for glioblastoma awareness? You can check my show notes for some helpful links for supporting awareness. 

While a brain tumor diagnosis is first and foremost a private medical issue, and regardless of their publicity status, no one is obligated to share their diagnosis, share their prognosis, or share their health status with the public. But keeping quiet doesn't help promote understanding or much needed fundraising for finding a cure. 

So what am I doing for awareness? As I don't have the bank account to fund research, my way of promoting awareness is to be open and share about my diagnosis, the details, and how it impacts my life and the lives of those close to me. 

Early on with my glioblastoma diagnosis, I wanted to share my experience, my protocols and all the information I researched. I knew that after finding out what limited treatment was available that I needed to do something to help others in my situation.  And preparing each and every podcast helps me with my approach while, hopefully, helping others on this journey find information that is useful to them. 

I hope by sharing what I have learned it can help others by giving them a jump start to reliable sources. Others support awareness with clever t‑shirts and caps or by supporting various research fundraisers like 5K walks.  If there were 5K walks in my area, I would certainly participate.  But as there aren't, I can support others that are doing that. 

Many people show their awareness with ribbons. We all know the pink ribbon is for breast cancer.  And red ribbons usually means AIDS and HIV awareness, but those red ribbons are also used for 34 other worthy causes.  So some ribbon colors don't always have the instantly identifiable awareness that you hope they do. 

For all brain tumors, the ribbon color is a clever grey for the grey matter, the brain. But grey is also for allergies, asthma, and borderline personality disorder.  I find that if I have to explain a ribbon, then it's not making an impact.  So, for me, the ribbon use is not the best tool for awareness. 

I think a well‑designed logo or image with easy‑to‑read text is a better visual for impactful awareness. At least that's my opinion.  I also don't get too strictly involved with brain tumor awareness month, which happens to be in May.  I believe awareness and fundraisers like 5K walks should be throughout the year and not arbitrarily relegated to whatever month.   

With such a short average survival rate for glioblastoma, waiting for the assigned month seems like many missed opportunities to me. I am very happy to be alive for the brain cancer month and support those efforts, but I see no reason to limit any awareness events to only in May.  I'm surviving and battling this year-round, not just in one month. 

Last year I got into an online discussion in a brain tumor support group where one of the members was very adamant that, since September is childhood cancer month, we should only post and support childhood cancer in September. That we should wait to seek support for glioblastoma until September was over.  Now, I fully support the awareness efforts for childhood cancer in September, but I am not going to stop promoting awareness for glioblastoma in any month because of some arbitrary designation, especially when I'm facing a possible recurrence.  Time is precious. 

There are many cancer causes, and they all need research for a cure every day. So I say pick your cause, find a ribbon, wear a shirt.  But, most of all, share your story and encourage donation and funds for research as well as helping warriors now.  Finding a cure is unpredictable, but there are many who need help now. 

In my show notes are some links for support organizations.

Thanks for listening.  This is Glioblast‑O‑Cast Episode 17.

 

Theme music for Episode 017: “Little Idea” Bensound.com

 

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AWARENESS LINKS

 

Awareness Ribbons https://www.disabled-world.com/disability/awareness/ribbons.php

American Brain Tumor Association, BT5k Run and Walk http://hope.abta.org/site/PageServer?pagename=bt5k_splash

National Brain Tumor Society, Brain Tumor Awareness Month #BTAM http://braintumor.org/our-events/btam-bteam-in-2017/

American Cancer Society Cancer, Awareness Calendar https://www.cancer.org/about-us/who-we-are/cancer-awareness-calendar.html

International Brain Tumor Alliance, awareness raising activities http://theibta.org/awareness-raising/

Accelerate Brain Cancer Care, Go Gray in May http://abc2.org/join-us/events/go-gray-may

Brain Tumor Research, Wear a Hat Day https://www.braintumourresearch.org/fundraise/wear-a-hat-day

The Brain Tumor Charity, #WearItOut 2018 https://www.thebraintumourcharity.org/get-involved/wearitout/

Brain Tumor Association of Canada, Brain Tumor Awareness Month https://www.braintumour.ca/3087/awareness-month

Brain Tumor Alliance Australia, International Brain Tumor Awareness Week https://www.btaa.org.au/events/17/international-brain-tumour-awareness-week-

Cure Brain Cancer Foundation, events including walk/runs https://www.curebraincancer.org.au/events https://www.walk4braincancer.com.au/