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Building resilience while living with a brain tumour

  May 20, 2021

by Janet Fanaki

It was December 2019 when I wrote my last article for this website.

At the time, my husband Adam and I were about to turn 51 years old. I wrote about sharing the same birthday and his battle against an aggressive brain tumour called, glioblastoma.

We celebrated that birthday, Christmas, New Year’s Eve and a few other fun events to follow.

The pandemic would come only a few months later and Adam was sadly gone by February 2020. A day doesn’t go by that I don’t think of him and wish that he were still with us.

But as he told me only a few weeks before he passed away, “I feel lucky that I had a great marriage and family. Not many people can say the same.”

It was that “glass is half full not half empty” attitude that pulled us through many of our darkest days. A reminder to treasure what we have as opposed to what we are missing.

There’s no mistaking that the day when Adam was diagnosed with GBM was by far the worst day of our lives. Ironically though, it would also prove to be a time when we discovered our real strength as a couple and resilience as individuals.

Any of you reading this essay may be in the same position as we once were in September 2016. Scared, angry, tired and feeling very alone.

I’m here to tell you that I was once in your shoes but there were things that Adam and I did to build our resilience throughout his brain tumour experience. Things that kept us positive and looking forward.

I can remember the exact moment when our focus became crystal clear.

We were holding each other in his hospital room, following his MRI scan. I looked at Adam and said, “We now know what this is, so let’s get the best team around us to fight it.”

Lesson #1: Build your team

This doesn’t just apply to your medical team but also the people you choose to always have around you.

Start by picking medical professionals whose personalities align with yours. We met with many Neuro Oncology specialists and surgeons. In the end, their knowledge was similar but our team’s listening skills, empathy and kindness were unparalleled. This helped us to trust them, as well as giving us strength and confidence.

The same applies to your personal circles. It’s also not enough to say that you have a lot of support, but is it the right kind of support?

To build a resilient mindset, it’s crucial to have the right tools and people around you. This includes having upbeat, positive friends and family.

I wasn’t raised in a household that shared a lot of personal details with others. I must admit that there were many times when things were going sideways, like during my parents’ separation, when I could have used a close friend’s advice but was ashamed to open up.

Lesson #2: Be honest

The saying, “honesty is the best policy” will serve you well. Know that it’s ok to say that you’re not ok. A 90-year old neighbour had given me that advice when I would go around saying that I’m ok when really I was far from it.

When someone asks you how you’re doing, tell them honestly. You’ll be amazed at how many others might be living with the same disease, can relate to your plight and you will benefit from having another person in your tribe.

Lesson #3: You are not alone

You are already on the right path to finding your “people” because you’re reading this article. On the Brain Tumour Foundation’s website you’ll find so many fantastic resources like patient and caregiver guides, virtual programs, research news and opportunities to get involved and meet others.

Take advantage of everything that this community has to offer you and your loved ones.

It’s a well-known fact and clinically proven that waking up everyday with a plan or purpose promotes positive thinking.

Lesson #4: Have a purpose

Adam was eventually able to return to work a year after his diagnosis, but even when he was at home he continued to be connected with his colleagues either by phone or at-home visits. It gave him a purpose and made him feel good.

I take the dog out for a long walk every morning while listening to podcasts, and work on my blog everyday. My friend whose husband also had GBM played golf regularly because she needed to “hit that ball”. Choose what gives you joy.

Last but certainly not least…

Lesson #5: Take care

This particularly applies to you if you’re a caregiver. Brain tumour patients have many resources available to them seeing as they’re the ones at the heart of the matter. The caring of caregivers and their families is vital too.

For young children, alert their schools of health changes at home and tell their friends’ parents too to build their support circle.

There are many easily accessible ways to give yourself a break and practice a little self-care. A bonus is that many are free online.

Enroll in a virtual pilates class, take music lessons, or simply lie down and close your eyes for 20 minutes a day.

Shortly after Adam’s diagnosis in 2016, his surgeon had told us that, “you’ll eventually be able to put this illness on the back burner”.

Only with the combination of determination, self care and having the right people around us was this possible. Living with a brain tumour or being the caregiver to someone with one is a major challenge and can be a very isolating existence.

Having the right tenets in place will help to make you more resilient.

Janet Fanaki is the lead content creator and host of the RESILIENT PEOPLE podcast. She interviews EXTRAordinary people from around the world who are admired for their resilience. Learn more at www.resilientpeople.ca or on Twitter and Instagram. She is also the founder of The Adam Fanaki Brain Fund. Janet lives in Toronto with her children Isobel and Sam.