Going Grey for May

May is Brain Tumour Awareness Month, a month to Turn May Grey or Go Grey for May.  

Brain Tumour sites like the Brain Tumour Foundation of Canada's page or Brain Cancer Canada's page include information on Brain Tumour and Brain Cancer Awareness and Fundraising, and here I hope to share more information for any who might want to learn more.  Earlier this year, I began adding grey nail polish to my thumbnails as my own "Go grey for Me" reminder, and it's become more poignant for me this month.

Brain Tumour Awareness to me is part of broader health awareness topics, where it's important for us all to be aware when something seems 'off' even when we might not know what the cause is, and especially when we might be nervous about what the cause could be.  It's so easy to go down a 'Dr. Google' rabbit hole that can sometimes make us hesitant to reach out for help.  Only when we seek help can we find answers and a path forward, so I always encourage others to be self-aware and have confidence to reach out for help for anything related to our health.  

For me, it was about new and atypical panic attacks I described in an earlier post: About my symptoms...  This is why I start here with some signs & symptoms that can be common for different types of brain tumours.  To be clear, experiencing these symptoms doesn't automatically mean you have a tumour or not.  For the generation that remembers the 1990 movie "Kindergarten Cop" with Arnold Schwarzenegger, let's just say that sometimes Arnie gets it right, sometimes he doesn't.

The Brain Tumour Foundation of Canada has some helpful Signs & Symptoms on their page at https://www.braintumour.ca/facing-a-brain-tumour/signs-symptoms/ 

I find this quick chart to be helpful both for giving some clues about when it's appropriate to seek professional guidance, and for starting to better understand what someone living with a brain tumour or brain cancer might be experiencing.

I've just mentioned both brain tumours and brain cancer, so here's a good time to explain a little.  Tumours in the brain can come from brain tissue growing abnormally (referred to as a primary tumour) or sometimes from another tumour elsewhere in the body where some cells break off and travel to the brain through the bloodstream, where they cause a secondary brain metastases, such as cancer of the breast, colon, kidney or lung spreading to the brain.

There are many types of brain tumours, where I'll link again to the Brain Tumour Foundation of Canada at https://www.braintumour.ca/facing-a-brain-tumour/brain-tumour-types/.  Some can be cancerous, others non-cancer, but all have the ability to change the life of someone living with a tumour.

The next part I think about when discussing a brain tumour or brain cancer is about WHERE in the brain this thing is...  The brain is a phenomenal organ that holds our memories, emotions, manages our physical abilities and takes incoming senses to build our exterior world.  A brain tumour in one location of the brain will create different symptoms from a tumour elsewhere.  There's plenty of information online about the anatomy of the brain so I'll point to Johns Hopkins Medicine at https://www.hopkinsmedicine.org/health/conditions-and-diseases/anatomy-of-the-brain as one starting point.  

The location of my now diagnosed Oligodendroglioma, in my right temporal lobe, clearly explained the symptoms I began experiencing, and further understanding the job the Temporal Lobe does has helped me to understand what it has meant to have removed a ½ cup of it in my surgery.  It explains to me why I'm now different than I used to be and gives me ways to plan my own therapy and practices to improve my skills and rebuild what I've lost.

To further Awareness, I'll share now some personal thoughts on how people can best support those with brain tumours.  

To me, awareness grows with MEANINGFUL CONVERSATIONS.  I get frustrated when people ask general, surface-level questions like "how are you doing" then quickly dismiss my reply by saying something like "Oh, Stu, don't worry, you're doing fine!" or "I get headaches too!" or "Don't be silly, everyone has trouble remembering things".  I'm much happier when a friend asks me something more like "tell me about your experiences, what have things been like for you?" or "tell me as much as you're comfortable with about what you're learning and what support you need" or "what can someone like me do to help you or others like you?".

Brain Tumours and Brain Cancer can have common starting points and symptoms, but they are as unique and individual as the people who live with them.  People with Brain Tumours can experience deep changes in their personality, their perception of the world, and are often faced with decisions for treatment that comes with further risk of damage from decades-old antineoplastic treatments or radiation targeted to destroy tumour tissue but sadly with non-zero collateral damage to surrounding healthy brain tissue.  The spectrum of experiences for those with Brain Tumours is complex, and conversations should not automatically be reduced to simple phrases of encouragement unless that's what the person wants.  Open and honest discussion is healthy both for the person experiencing a brain tumour and for those around them to foster more open understanding.

If you're interested in supporting further with donations or time, there are excellent local and global charities and foundations who support Brain Tumour and Brain Cancer research and patients.  I'll link to a few that quickly come to mind:

• https://www.braintumour.ca/ is the home page for the Brain Tumour Foundation of Canada.  This organization provides resources and support for patients and those who care for them.  They are a great support for anyone who wants to learn more or to get involved in patient-level care and support.  They support funding for research through patient care and support and advocacy.
  

• https://braincancercanada.ca/ focuses their support on funding research, technology and treatment for people diagnosed with malignant brain tumours.  Donations are directed to research grants that fund MUCH NEEDED research into the associated rare diseases that still largely rely on decades-old therapies.  
  

• https://braintumor.org/ is the home page for the National Brain Tumor Society, as a progression of the National Brain Tumor Foundation and the Brain Tumor Society, both USA-founded organizations with roots back to the 1980s.  They are the largest patient advocacy organization in the United States and blend patient advocacy with a push to accelerate developing and delivering effective treatments.
  

Beyond supporting these or similar organizations with time or money, it's important to recognize the way we also support important topics at the ballot box.  Supporting charitable organizations who further advances for our health and the health of those we care about, but it signifies a gap in the funding models that prioritize care.  Whether we each raise money to support research in the spaces of Brain Tumours, Brain Cancer, other Cancers, Heart & Stroke, Diabetes, Alzheimer's or other contributors to Dementia, Huntington's Disease, Multiple Sclerosis, or any other areas - it highlights that many of these health areas are funded from people like us.  

I'm reminded that each time we vote in in local, provincial or federal elections, we're voting for leaders who can influence funding decisions and policy.  I'll close this post with this ask: when voting at any level, be alert for vague promises about education and other plans that can train, recruit and retain the vital health care team members we need wherever we live.  Do your best to decipher what the leaders seeking your vote really mean when they talk about funding or reallocating funds that go into anything from research to direct patient care, and ask pointed questions about the real concrete steps being taken so you can better understand whether there's a realistic and well-thought-out plan that will meet our future needs.  

We all have an opportunity to learn more, whether about Brain Tumours or any other health topic that interests us, and it starts with open and meaningful discussion.  Please use what you learn to guide your own contributions of time, money, and votes.  We all deserve our best chance at health and happiness, and awareness is key as we head together to drive to that goal.