I belong to an online group for people who have lost family members to glioblastoma. As I read about the distress these dear people endured because of brain cancer, I am often struck by how comparatively easy we had it. I guess that’s easy for me to say, I didn’t suffer like Joe did. And no doubt he kept much of his discomfort to himself. But much of what I read regarding symptoms from treatment and from the cancer itself seem foreign to me.
Pain, for instance. Joe did have some monster headaches, but he never had what many call “cancer pain”. His cancer originated in his brain and stayed in his brain. The rest of his body didn’t always cooperate with him, but it didn’t often hurt either, as far as I know.
Many caregivers describe major personality changes in their loved one, usually negative changes. Anger, anxiety, major depression, and fear are common. During Joe’s cancer journey he did become laser-focused on spiritual matters and important things like love, generosity, and personal discipline. He also felt restless at times. But he was always pleasant.
Seizures, delirium, and severe confusion are mentioned as well. One man said his wife had 19 seizures her first year after diagnosis and he didn’t have a full night’s sleep for over three years, always on alert in case she needed help during the night. Joe never had visible seizures; his seizure activity was only noticeable on an EEG test.
Long-term cognitive decline and even dementia are frequently noted. Joe’s mental decline was noticeable only during his last couple of weeks. It was accompanied by aphasia (inability to communicate) so it was somewhat difficult to discern between the two. He did experience a constant “brain fog” throughout his journey and as I recently wrote, he did his best to fight against it until the end.
Many also mention frequent infections such as cellulitis and bladder infections. Other than an early bout of pneumonia, I think the only infection Joe had was a case of shingles. He was generally pretty healthy, even during typical cold and flu seasons. Before his last surgery in April of 2017, the resident doctor who saw Joe in pre-op told him, "other than cancer, you are a very healthy young man!"
As an aside, but worth mentioning: my own migraines virtually ceased during Joe’s three and a half year cancer journey. What a blessing that was!
Caregivers use terms like “horror” and “nightmare” to describe their experience watching their loved one fade away as a result of glioblastoma. Several of them called 911 on numerous occasions when their family member fell and they couldn’t help them up. Some of the caregivers are suffering from PTSD or unrelenting guilt over things they wish they had done differently.
I can’t say our journey was pleasant, although we had countless pleasant moments. There were many setbacks and bumps in the road: Joe endured vision problems, nausea, headaches, constant fatigue, and several seasons of aphasia. He experienced feelings of restlessness and mild depression. And as his caregiver, it was hard to witness those things. But I don’t remember our journey as nightmarish or horrific.
And I can say that I—and I hope the rest of my family—experienced an inexplicable peace throughout those difficult years. We are so grateful for the prayers of hundreds on our behalf, and for the many mercies God showed us during that time.
The steadfast love of the Lord never ceases; his mercies never come to an end; they are new every morning; great is Your faithfulness. —Lamentations 3:22-23
