What I Wish I Knew: Tips for Brain Tumor Patient Caregivers
Caregivers don’t receive a diagnosis, but they are often right beside the person who does – and like the patient, the caregiver’s life changes forever.
A Caregiver’s Role After Diagnosis
Fourteen words changed Kathy Oliver’s life.
Her son, Colin, was a healthy 24-year-old who started getting double vision and headaches that wouldn’t go away. Something wasn’t right. After several misdiagnoses, and finally an MRI, the devastating cause of the symptoms was discovered.
“I’m so very sorry to tell you that your son has a brain tumor,” a neurosurgeon told Kathy Oliver and her husband Gordon. "Colin needs immediate surgery."
And with that one sentence, life changed forever for the Oliver family.
They were suddenly transported to a strange new universe where they didn’t speak the language of medicine or know anything about brain tumors. But, little by little, they learned it.
Kathy Oliver investigated brain tumor therapies. She joined a support group and researched clinical trials and medicine development. She became an expert patient advocate. Colin Oliver survived for seven-and-a-half years, heroically coping with three neurosurgeries and years of treatment for his brain tumor and its associated epilepsy.
Today, as one of the founders and the current chair of the International Brain Tumour Alliance (IBTA), Kathy Oliver reflects on those first few days after her son’s diagnosis and offers insight to caregivers adapting to the new reality of their family’s brain tumor journey.
When my family was on the brain tumor journey with our son, I took great comfort and also great hope from knowing that when I went to bed at the end of the day, across the world, other people in different parts of the world were just getting up, facing a new day in their laboratories, in their clinics, in their work on brain tumor research. And it gave me hope to realize that even as we sleep and the world turns people are busily trying to find a cure and better treatments for this terrible disease.
My five suggestions for dealing with a brain tumor diagnosis as a caregiver would be these:
Make sure the patient is being treated at a center of excellence. This is a rare disease and needs as much expertise as you can find.
Next, make sure that the tissue which is removed during surgery if the patient has surgery, is properly stored and analyzed for genetic mutations, this is very important because you might need this information to enroll in a clinical trial or to inform treatment decisions.
The third suggestion I would make is, talk about clinical trials. Ask the patient if he's interested in them. Discuss them with your doctor from the benefit and risk side and make sure you do this early on. Educate yourself, that's the other suggestion I would make. Know about the disease, understand it. Know about the treatments.
And finally, this is a tough journey. So, as the caregiver you need support and the patient needs support. Make sure you seek that out.
Our main message from the International Brain Tumour Alliance is, you are not alone. There are other people going through this and there are other people who have gotten through this terrible period of their lives and there's no need for you to be alone.