I am sharing five of what I found to be the most important lessons in the hope that others facing similar situations can benefit from what I learned.
The first lesson is for everyone: You should be able to recognize a few telltale symptoms of a brain tumour. Some important ones are blurred vision, weakness or paralysis, frequent headaches, personality changes and confusion.
Don’t panic if you find these symptoms; the cause is likely something else. Nonetheless book an appointment with your doctor. The chance of developing a malignant brain or spinal cord tumour is about one in 140 for a man and one in 180 for a woman over a lifetime, according to the American Cancer Society. Many of the 120 different kinds of brain tumours are operable.
Second lesson: If facing an inoperable brain tumour, it’s better to know what you’re up against than to live in denial. Swallow hard, read up, and talk to someone.
I spent the first few weeks after my mom’s diagnosis avoiding thinking about what the future might hold, closing browser tabs that carried news I didn’t want to absorb. The terror came for me anyway. One weekday morning waiting for the kettle to boil, I was swept into an abyss of grief by a wave of brutally cold reckoning about the things to come.
Instead I ought to have found a supportive forum to talk through the dark fears gathering above me and my family. The Brain Tumour Foundation of Canada, offers information on support groups as well as counselling over the phone for patients and their families.
The third lesson: Be ready for the brain cancer to take away the patient’s capabilities – which it can do with terrifying speed. Because the brain is the centre of both locomotion and thought, a tumour can cause havoc with either, leaving a person with serious disabilities.
We experienced my mother’s illness mostly as a series of vanishing abilities. Conversation, for example, gradually faded away. On Mother’s Day we had a nice talk about my summer plans. But by July and August she lived in a fog of confusion. It was too fast to get used to, and too slow to be merciful.
Physical symptoms – notably problems with walking and vision, and often seizures – may also worsen, depending on the location of the tumour(s), type and aggressiveness. Another cruel aspect of brain cancer: Its progression is devilishly unpredictable.
Fourth lesson: If you’re close to a person with brain cancer, prepare to drop a lot of activities and pitch in to care for her. It’s all pretty challenging: figuring out how to access community resources, such as in-home care; managing and administering medications; keeping track of appointments.
Even figuring out exactly what the doctors are trying to tell you can be tough – their language is sometimes quite technical, and they will often avoid being too blunt when talking about the patient’s prospects for recovery. My mother’s neuro-oncologist didn’t say, “Your mother is going to die soon.” What he said was: “I can’t really do anything for her.” You have to listen carefully.
The best advice I’ve received is that you should treat the ordeal like a complex business project. My mother’s condition changed too quickly for us to keep up, but if I had to do it all over again (God forbid), I’d create a system for sharing documentsamong family members, and schedules to co-ordinate care, treatment and medication.
It was no surprise that my stepdad, a corporate executive, took charge of my mother’s care with a steady hand, despite the heartbreak of it all. I watched with pride and awe as my sister and brother, both in their 20s, put their lives on hold to provide care for my mom around the house. Serving a nurse to a loved one is an unspeakably difficult commitment.
Despite the challenges, going all-in is probably the best plan, psychologically speaking. I made as much time as I could, but I wish I had been able to drop more of my life just to be there with my mom. My siblings and stepdad came out of the experience with memories they cherish, while I still live with questions about whether I did enough.
If you’re a friend or a more distant relative, meanwhile, I urge you to put aside the clichéd talk about fights and battles. With my mother’s prognosis as bleak as it was, this struck my ears as unhelpful and frankly obnoxious. Instead, figure out what help you can give, and offer it. I guarantee help is needed.
Fifth lesson: Even in the face of certain death, you can live in hope that there will be happy moments.
Depression is common among brain cancer patients, but my mother was spared, in a sense, by (apparently) being unaware of what was happening to her. My stepdad marvelled at how happy she seemed. She kept singing along with classic rock hits from her youth – the lyrics untouched by the cancer.
My mom spent the last weeks of her life at Toronto General Hospital. She could barely move, slept most of the time, and didn’t say more than a few words a day. Yet she was still, in essence, herself. As we observed a bedside vigil, she kept up her manners, saying hello and thank you to the nurses.
In the last handful of days, the elder of my two sisters teased my mom by whispering in her ear that she was going to dye her hair either bright red or pink.
My mom opened her eyes wide and scowled – this was the look that used to freeze us solid when we were misbehaving as kids. “Well, there’s your verdict,” I said. In that bleak hospital room, my sister and I laughed.
Even as it became clear we were losing her, the lighter moments gave us strength. So remember, when the days are darkest: The person you have loved is still in there, and flashes will shine through.
Be there. Watch for it.