One of my greatest sources of stress after my father’s initial brain cancer diagnosis was not knowing what to expect of him over the forthcoming days, weeks, and months. Doctors had been clear about the timeline for medical procedures but not on the speed or severity with which the cancer would affect his functions. I wanted to be prepared for every eventuality as to manage his care and reduce the impact on my family. The last thing I wanted was to scramble for a solution at the last minute while he suffered.
At the time I had no way of knowing how unique such information is to the individual patient. However, in hindsight, I still feel some guidance on what to expect could have been provided. Of course, any such list would be overwhelming to a new patient or caregiver, so it’s possible that such information is withheld to maintain hope, but preparedness has its own benefits. I write this post with some trepidation. Sometimes it’s better not knowing what is going to happen but I also feel that caregivers shouldn’t be completely unprepared for eventualities.
The following timeline depicts approximately when my father started experiencing certain difficulties. Unless noted, the medical problems listed are not related to the medical treatments they are listed under, that was done to provide a sense of progression at major milestones. Once certain functionality was impacted, it rarely improved and usually worsened. This list only pertains to my father during his year of brain cancer treatment but I hope it may provide some guidance to others.
Milestone:
Pre-biopsy
- Symptoms:
- Dizziness
- Difficulty following instructions
- Unsteady walk
- Inability to write
Post-operation (biopsy)
- Confusion
- Fear
- Unsteady standing and walking
- Weakness in limbs on side opposite the affected hemisphere
Chemotherapy (Temodar, round one) and radiation
- Some loss of peripheral vision in one eye
- Difficulty with numbers/incapable of dialing a phone
- Forgetting words and sometimes speaking incoherently
- Irregular sleeping habits
- Minor incontinence and soiling
- Some short-term memory loss
- Required cane for stability
- Sense of taste failing or skewed
Chemotherapy (Temodar, round two, no more radiation)
- Depression
- Loneliness
- Some loss of peripheral vision in both eyes
- Unable to focus on any one thing for too long (especially television)
- Further weakness and loss of control of limbs on side opposite the affected hemisphere
- Some dementia (specifically asking weird questions like, “Is this [clock] real?)
- Sensitivity to cold and heat
- Constipation (possibly from chemotherapy)
- Noticeable muscle atrophy (most likely from continued use of steroids)
- Loss of appetite
- Beginning to fall
- More confusion and difficulty in making choices
- Asked to be allowed to die if his chances were diminishing
- Began to realize that death was very likely
Chemotherapy (Avastin, round one)
- Increased need for wheelchair due to instability
- Continued muscle atrophy (most likely from steroids)
- Increase in falls
- Severe incontinence and more soiling
- Uncontrolled bleeding from scrapes (side effect from Avastin)
- Much harder to formulate thoughts and speak
- Pains, especially in limbs on side opposite of hemisphere affected
- Significant short-term memory loss
Final hospitalization and in-patient hospice
- Unable to walk
- Fatigue from sitting
- Nearly unable to speak, very difficult to think
- Nearly no short-term memory
- Long-term memory very intact (he recognized people he hadn’t seen in years)
- Still able to express a smile as well as show anger
- Increased pains
Final days
- In and out of consciousness
- Completely unable to speak, barely able to acknowledge yes/no
- Eventually coma and death
In future posts I’ll speak about how I prepared and/or handled some of these issues and how my father reacted to the circumstance. As far as the final days go, there is a great page by Diane Phillips that lists in detail the changes a brain cancer patient goes through towards the end, with perspective for the caregiver that is invaluable.
Brain Hospice is the site
The symptom timeline page
The end-stage landmarks page
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