When you hear, "You've got brain cancer"

No one wants to hear the words, “You’ve got brain cancer.” Approximately 140,000 people received this diagnosis in North America every year. 

Men and women, young and old. 

In 2016 it became my family’s worst nightmare when my husband Adam - at only 47 years old - was told he has glioblastoma, and would likely only live for another 15 months.

Over the last eight years I’ve gotten to know many others who received the same news. Through my advocacy work, I’ve spoken with husbands, wives, children and friends of patients who were learning to navigate this unsettling journey. 

Through my own experience of being alongside Adam for three and a half years of surgery, treatments, his passing and then the years of being a public speaker and advisor, I have some advice to share for caregivers, friends and clinicians in managing the early days of hearing that you have brain cancer.

1.    I’ll start with the Emergency Room doctors, Neurooncologists and family physicians. Please ensure that the patient is not alone at the time that you are telling them this life-altering news. If a family member or friend can’t be there, have someone on the phone for support. 

And please practice empathy and compassion. This may be standard daily practice in delivering this type of news for you, but it's something completely different for the patient and their loved ones. 

2.    Patients and caregivers. You are not alone. When you get the news, you’ll feel as though no one else could understand what you’re feeling or going through. But there are many who do. 

Ask your clinician for authorized resources, both in-person and online, that will help guide you in your decision-making and choices. 

In North America, organizations like Brain Tumour Foundation of Canada, American Brain Tumor Association and WeTrials offer excellent support. 

3.    Caregivers. This will be an overwhelming shift in your life but there are things you can do to feel supported. 

Start by forming your circle of support. You want the right people around you at this time. The real listeners and empaths. 
Don’t take on the role of central command for your friends and extended family. Designate someone to be that person who can share updates with others. 

Rest when you can.  

4.     Friends and family. Be there for the people who are in this fight. 

Do not call or text them endlessly. Instead offer to drop-off meals or to sit with the patient while their spouse or partner gets some respite. 

And build your own support system if you are struggling with this news. The caregiver should not be your go-to since they are already dealing with so much.

The first few weeks of a brain cancer diagnosis are filled with appointments, hours of research, tears, anger, little bits of rest from time to time - while still managing a house, groceries and raising children. 

Having been through it, I know how things change.

Hopefully this article gives you some ideas to help yourself and others.