Feb 1, 2018
TRANSCRIPT (links to follow)
This is Episode 024 of Glioblast‑O‑Cast. What would I do differently if I could start treatment over?
Hello, and welcome to Glioblast‑O‑Cast, the podcast about my life beyond glioblastoma. I'm your host, Meg Turecek.
In this episode I answer the question, What would I do differently if I could start treatment over? And, as usual, some links can be found on my show page wit this episode.
Nearing my two year craniotomy anniversary, I find myself reflecting on my journey so far. And tat brings up the question of did I do things best for me or could I have done them differently?
One thing is for sure, I would still do surgery and the standard chemo and radiation.
As scary as the idea of surgery was, being told by one of the anesthesiologists that I would probably die during surgery due to the seated position I was in so my neurosurgeon could have the best approach, I would still opt to start with surgery.
As my7 tumor was only 9 millimeters, a biopsy to diagnose would have been more traumatic as they would have cut through good brain to take a small sample to test. The risk for that seemed too great. If it turned out to be what it was—glioblastoma—I would have needed a second procedure to remove it all.
At the time, I had wanted to get a second opinion before proceeding. But my surgeon made a lot of sense and I just wanted it out. ASAP.
Chemo and radiation would still be on my protocol list, despite knowing my extreme low platelet reaction to chemo.
For that, I would be more diligent in seeking natural remedies for the low platelets such as using vitamin B12, checking iron levels, adding folate by boosting diet with peanuts, orange juice, kidney beans. I would try supplements such as papaya leaf extract, melatonin, chlorophyll.
I would have searched harder to work with a naturopathic oncologist.
Instead of just doing standard treatment and waiting to see if that worked, I would have started on the naturopathic supplements much earlier. And that includes cannabis oil.
Now I know supplements are not for everyone. I certainly was resistant as I have a long history of being terrible at remembering to take any pills. And I really wanted to give the standard treatment a chance to work.
But knowing what I know now from my two years of living this journey, I would have really done my supplements sooner. I find they help me.
But so does daily exercise. I would have been more diligent in doing the easiest stretching and moving routines daily—even when I was worn out from the chemo and radiation. I remember trying but I was so very worn out from treatment that the sofa became my new best friend.
It seems typical for us humans to second guess decisions we make, but we need to know that those decisions are the best in the moment with the available information.
So my big advice is to make the effort to get a second opinion, to seek reliable information, and breathe before jumping into a treatment plan.
Ask every conceivable question. Don’t be afraid to ask the surgeon and oncologist anything.
It’s been a huge help to share stories and protocols with other glioblastoma warriors. And it’s very easy to do that these days completely online—no need to schedule a weekly support group if there aren’t enough potential members local to you. You can share questions and tips globally, internationally and maybe find a way to tackle the glioblastoma situation the best way for you.
As finding support from fellow glioblastoma warriors has been such a help for me, and I wish I had ventured into that earlier in my journey, I have a list of support organizations as well as the many groups on Facebook.
Thanks for listening. This has been Glioblast-O-Cast Episode 24.
Theme music for Episode 024: “Quirky Dog” Kevin MacLeod (incompetech.com) Licensed under Creative Commons: By Attribution 3.0 License, http://creativecommons.org/licenses/by/3.0/
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Facebook Groups: Most are closed groups and may ask qualifying questions to join.
The Brain Tumour Charity: https://www.facebook.com/groups/114009085471466/
Brain Tumor Talk: https://www.facebook.com/groups/221698948725/
Brain Tumours With Humour - Support Group: https://www.facebook.com/groups/464851293720408/
Beating Brain Cancer: https://www.facebook.com/groups/1706278459631561/
Glioblastoma Support Group: https://www.facebook.com/groups/gbm4cure/
GBM Surviving and Winning...../ Support Group: https://www.facebook.com/groups/GBMgrade4survivors/
Glioblastoma Brain Tumor GBM4 and Cannabis Oil: https://www.facebook.com/groups/glioNOmore/
Glioblastoma Warriors and Brain Tumors Fighters: https://www.facebook.com/groups/931060136966040/
Glioblastoma Brain Tumor GBM4 and Cannabis Oil: https://www.facebook.com/groups/glioNOmore/
GBM Brain Tumors: https://www.facebook.com/groups/gbmdx/
Glioblastoma Awareness and Information: https://www.facebook.com/groups/1884618351565011/
Glioblastoma Traveller's Network: https://www.facebook.com/groups/142724062951560/
Other Support Organizations:
Brain Tumour Alliance
Australia: The only national Australian organization for the brain
tumour patient, family and caregiver.
a good list of groups
www.btaa.org.au/page/26/support-organisations
Cancer Support
Community: So that No One Faces Cancer Alone
www.cancersupportcommunity.org
Chris Elliott Fund End
Brain Cancer: Fueling Research & Clinical
Enrollment
https://endbraincancer.org/we-can-help/
Imerman Angels: Your
One-on-One Cancer Support Community
https://imermanangels.org
Greg's Mission:
Providing one-on-one brain tumor support
http://gregsmission.org