A PERSONAL GLIMPSE INTO THE LIFE OF A GLIOBLASTOMA PATIENT AND CAREGIVER

Today is Glioblastoma Awareness Day. 

If you’re not familiar with this disease, it's the most common as well as most aggressive primary brain tumour. In 2016, my 47 year old husband Adam was diagnosed with it and passed away in 2020, one month before the global pandemic. 

For me and many others who have experienced life with GBM, today isn't something to celebrate or enjoy like other national days. Personally I wish I were instead writing an essay about ice cream or my favourite hobby. 

I was thinking about what to share with you on how I look back on our GBM journey. So I’ve chosen to give you a glimpse into the typical challenges for a GBM patient and their caregiver. 

Often I say that life with this terminal brain tumour started out horribly, got better through the middle years and ended badly with our loss. 

From the first moments that he heard, “you have terminal brain cancer and an average of 15 months to live” it threw Adam into fight or flight mode. Me too. We prepared ourselves to confront this news rather than escape it with the help of our medical team, friends and family by our sides. 

Never knowing anyone who had experienced GBM before, we couldn’t have imagined how hard the fight would be. So much in our lives changed:

• Preparing for brain surgery (known as a craniotomy) and his recovery with 47 staples in his head
• Staying on-top of the plethora of medications 
• Daily and weekly hospital visits
• The feeling of waiting in a cancer centre 
• Adam no longer being able to drive because of seizures and the risks of more
• Suffering depression from isolation, changes to cognitive abilities and physical decline

​Adam fought hard with a totally focused mindset. He changed his diet to be strictly Keto with only meat and vegetables; exercising for hours on our treadmill everyday; walking everywhere he could; and working as much if not more than before (and this is saying a lot because he was already a workaholic before the diagnosis). 

As he said to me, “If any of this makes me 1% better, I’m going to do it.” How do you argue with that logic? Here’s a hint…you don’t. You support it. 

With all of his efforts, Adam doubled his mortality rate to living with GBM for three and a half years. This may not sound like a big deal to those who don’t know this disease firsthand, but it WAS a big win. 

On top of the changes that their loved one is going through, caregivers to a GBM patient feel the complete upending of their own personal space and time. 

I became mission control for all aspects of his care, getting tasks done with the precision of a senior project manager and communicating his progress or regression with others. As no one wants to bother the patient, they go to their partner for all updates. 

Once his immediate needs were met, it was another challenge to find the time for housekeeping both inside and around our house, grocery shopping, laundry, paying bills, staying on top of his medications, helping with the children's homework and projects, preparing meals (only complicated more by the fact that he ate a restricted diet while my children and I did not) and hoping to grab a few minutes to myself for a bit of reprieve. This last bit was always a luxury but one that I recommend that caregivers schedule into every day.

All of this was done with the utmost care and love but when a GBM caregiver tells you they are exhausted, it's not a stretch by any means. It’s the honest truth. They are completely spent.

Many people came to our rescue with drives to appointments, meals dropped off on our porch, offers to sit with Adam so I could get away freely to run errands without being rushed and calls with funny unrelated stories that just made me laugh for a bit. They were our angels. 

What didn’t help were the “looky loos” as I call them who would only call or message to find out about Adam without offering help or any real emotional support. On top of that, I heard from them, “Do you think he got it because he uses his cell phone so much?”

Dr. Alireza Mansouri, a neurosurgeon-scientist at Penn State and my colleague at WeTrials, offers this recent data-driven explanation, “there's no solid evidence linking GBM to common environmental factors like diet, smoking, alcohol, or cell phone use.” Read more in his post here. 

In closing, it's been years since I’ve been in the thick of living with a brain tumour patient while caring for him and our children. Days like today still hit hard but it motivates me to help others through their difficult journey. 

I’m lending my experience as an advisor and advocate at WeTrials, speaking at brain tumour conferences, blogging and being a peer support to those who are struggling to understand their next steps. 

Support is the most helpful thing that you can offer a GBM patient and their families so please reach out to those people in your life. To learn more about GBM go to WeTrials.com