Glioblastoma Diagnosis
“Everyone needs a friend who really gets them.
When you’re going through a major life challenge, one way to maintain a positive mindset is to find a like-minded individual or community.
These are people who have been through something similar and understand the ups and downs that come with it.
Whether that’s from leaving a marriage, moving to a new country, a health crisis, or grief.
Back in 2016, my 47-year-old husband Adam was diagnosed with glioblastoma (GBM), the most aggressive form of brain cancer.
This diagnosis is terminal, giving the patient an average of 15 months to live.
The day we got this terrible news, it unraveled everyone around us. From our children and relatives to colleagues and neighbors.
Only months before we were discussing long term plans. Now we were living with the idea that Adam would be gone soon.
As his caregiver, I never could have imagined how challenging the road ahead would be. The learning curve with this disease was steep since neither of us had personally known anyone with it before.
We both did our research, spending every free minute searching online journals and speaking with anyone affiliated with the medical community.
With a craniotomy looming only two weeks later, we had little time to prepare for it and what life would be like afterwards.
Life As A Caretaker
I accompanied Adam to all of his appointments, monitored his medications, and sometimes made daily follow-ups with on-call nurses about his concerns.
As many caregivers can confirm, caring doesn’t end with just the patient. You are still in charge of many other aspects of home life too. At the end of most days, you are physically and mentally drained.
And the times you do get together with friends, you may not want to talk about your loved one or are more likely to not be asked about them as those outside of your circle tend to feel uncomfortable doing so.
It’s totally understandable. No one wants to talk about death and certainly less so if the person is close to your age. I might have been like this prior to living this experience.
I was grateful to the Brain Tumor Foundation of Canada for their group support programs.
Towards the end of Adam’s life was the most emotional and stressful time, as there was little hope left for any improvement. Watching him slip away mentally and physically was heartbreaking.
Life After Loss
When Adam passed away in February 2020, I shared the news with a casual acquaintance. She immediately said, ‘You need to meet my friend whose husband passed away from the same disease. I think you’d both hit it off.’
As wonderfully supportive as our family and friends were during his cancer journey, I often hoped to meet another widow who really understood what life was like with GBM.
Sheryl Goldstein and I started to text and then speak on the phone from her home in Montreal and mine in Toronto.
Our stories were very similar. We both had spouses who were in the prime of their lives only to have them taken from us far too soon. We are both mothers, and like to laugh and enjoy life.
Sheryl’s husband Ira died from glioblastoma in September of 2019, just shy of his 56th birthday. Only five months before we lost Adam.
Unexpected Friendship
She and I regularly talked at length about our experiences, what life with GBM was like, how we were coping as single mothers, and trading stories of life on our own. We got each other.
As Sheryl puts it:
‘We were both gifted a friendship that is very special at this stage of our adult lives. Navigating a family through a journey like brain cancer and losing our beloved spouses is something that is difficult to explain on many levels. We understand some of the victories in taking steps to build our next chapter with courage and positivity. I look forward to our friendship continuing to grow and be there with each other through our next steps.’
Early into Adam’s illness, I had an elderly neighbor named Kay who gave me some great advice that I still use to this day. She said, ‘Don’t tell people it’s okay. It’s not okay. It’s f***ing shit. Don’t tell people you’re okay.’
From that moment in 2016, I began to be more open about my feelings and am very grateful to her and to the woman who introduced Sheryl to me. Because if I hadn’t mentioned Adam’s passing to her, we never would have met and become good friends.
For anyone who has a partner living with glioblastoma, or if you’re living with any sort of a personal challenge, please be open about your struggle and be honest when someone asks you, ‘How are you doing?’
You never know who may come into your life because you shared your story.”
This story was submitted to Love What Matters by Janet Fanaki. You can follow her journey on Instagram, Twitter, podcast and website. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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