Episode 13: Survivor Story: Thriver, Survivor, Fighter! Life with Brain Cancer with Ruth Kavanagh
Have you ever tried to tell your story while in the middle of it? Seeing the light and lessons can be challenging in hindsight let alone while living it. Ruth Kavanagh who is currently fighting, surviving and thriving with brain cancer shares her message of hope, courage, and strength in the midst of metastasis. She is a true warrior advocating for others even while she is in the throes of her own treatment. Our souls were touched and tissues were wet during this recording. Be prepared for tears, laughs, goosebumps, and inspiration. We caution you that this is an emotionally powerful episode, please be in a safe space while listening.
In this episode:
Traumatic vs. Acquired Brain Injury
Traumatic- from an outside injury or force, i.e. car crash, hitting head, concussion
Acquired- an internal factor, i.e. lack of oxygen, aneurysm, stroke, infection, brain tumor
Ruth Kavanaugh’s story
Thriver, survivor, fighter!
Listen to your body, it will tell you if something is wrong
Anaplastic Ependymoma: one of the rarest forms of brain tumor, only about 2% of brain tumors are this type. It is cancerous and extremely aggressive. Because it is so rare there is little research or treatment options.
Ruth set her mind that she will get through this
If you go online, make sure it is a reputable site (see below for suggestions)
Radiation therapy
Caused extreme fatigue
Life after treatment: too tired to do anything and left to your own thoughts. Can be a very dark time.
Taking care of your emotional and mental health
Remove the stigma. There is zero harm in seeing a counselor. Only good will come from it. You’ve got nothing to lose!
Important to “date around” and find a counselor/psychiatrist who is the right fit
The cancer chaos
“Scan-xiety” is a real thing. Cancer survivors, you are not alone when you feel anxious about upcoming scans
Recurrence
More discussions in tumor boards, consultations, surgeries, and therapies
Stereotactic radiotherapy
Avastin- side effects bleeding and prevention of wound healing
Infection
Loss during hard times
Revisional surgeries
Metastasis, only 25 cases known in the world that spread the way Ruthie’s has
More chemo
Lessons for healthcare professionals: listen to your patient, don’t make pre-judgements, be very cognizant of where the patient is now rather than basing all judgement on your past experience with the patient, sitting with a patient lowers the power divide (standing over a patient is very intimidating and strengthens a patriarchal model of care), respect the person as a person (not just a condition)
Self advocacy is advocacy for those who don’t have a voice. By standing up, telling your story, and advocating for better care; you can serve to stand up for those who can’t do it for themselves and help others.
“I'm tired, but there is hope!”
Strength, courage, and hope through extended trauma
“There’s always hope. It doesn’t necessarily mean that there is going to be a magical cure. Look for it in the little things.” Hope can be finally being able to eat real food, getting out of bed, hoping for peace and being surrounded by loved ones
Find your tribe--find someone who has been through your experience
To get connected with others and reputable resources:
National Brain Tumor Society,
American Brain Tumor Association,
First Descents- free camps for young adults with brain tumors or MS
Epic Experience: cancer camp for adults
American Cancer Society:https://www.cancer.org/
Connect with the social worker in the hospital or cancer center to get more resources
Links to any resources mentioned:
Brain Injury Association of America: https://www.biausa.org/
National Brain Tumor Society: https://braintumor.org/
National Institute of Health (NIH): https://www.nih.gov/
American Brain Tumor Association: https://www.abta.org/
First Descents: https://firstdescents.org/
Epic Experience: https://www.epicexperience.org/
American Cancer Society:https://www.cancer.org/
To find Ruthie: www.braincancerbabe.com
Twitter: @braincancerbabe
Instagram: @braincancer_babe
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