A brain tumor diagnosis is more than life-changing, it’s life-upending — both for the individual who receives it and the family and friends who love them. This is especially true when the diagnosis involves glioblastoma, which is one of the most aggressive and treatment-resistant cancers in existence.
Also known as glioblastoma multiforme (GBM), these grade IV tumors are the most common form of brain cancer in adults, accounting for 13,000 brain cancer diagnoses — or nearly half of all primary malignant brain tumors — in the United States each year.
It’s devastating to learn that your loved one has an incurable, fast-growing brain tumor. As a fellowship-trained neurosurgical oncologist who specializes in improving outcomes for patients with high-grade brain tumors, Jose Valerio, MD, aims to slow GBM advancement, ease symptoms, and prolong your loved one’s life.
Here, Dr. Valerio explores the various ways you can support your loved one along the way.
1. Be present and available
In the early days following a glioblastoma diagnosis, you may feel desperate to do everything you can to support and help your loved one — but you may not know exactly how, and your loved one probably isn’t in a place to offer any direction.
No matter how extensive your support role is or winds up becoming, first and foremost, be present and make sure your loved one knows you’re available. Check in often, and offer specific things. Instead of asking, “What can I do?” say, “I’m heading to the store — what do you need?”
2. Be an involved caregiver
If you’re the main caregiver for your loved one, be as involved as possible. Learn as much as you can about glioblastoma and the specific diagnosis, and accompany them to as many medical appointments as you can. Get to know their treatment team, which includes Dr. Valerio as well as:
- Oncological nurses
- Social workers
- Physical therapist
- Occupational therapist
Talk with these collaborative providers to learn everything you can. For example, learn how to keep your loved one comfortable, monitor or give their medication, and manage side effects. You should also learn what symptoms to look out for and how to manage mood or cognitive changes.
3. Help with daily tasks
Even if you’re not the main caregiver, there are many other ways to support your loved one as they deal with their GBM diagnosis and begin to undergo treatment. Simply lending a helping hand with necessary daily tasks is a straightforward way to make their life less stressful.
Help may include driving to appointments or on errands, cooking meals, taking young children to activities, attending to weekly yard work, or doing more frequent tasks, such as the dishes, the laundry, or light cleaning.
4. Keep things organized
If you have good organizational skills, helping your loved one make and keep track of medical appointments and other health care provider visits can take the pressure off, so they don’t have to worry about overseeing their new and varied schedule.
Another important way to apply your organizational skills involves keeping track of vital medical records, such as surgery, chemotherapy, radiation, and clinical trial records. These records are especially important when a second opinion is in order. You may also be able to help with medical bills and insurance paperwork if you have special skills, such as accounting know-how.
5. Be a social intermediary
Often, people with glioblastoma seem fine because obvious symptoms or effects remain hidden until they’re faced with certain circumstances or situations. Your loved one may suddenly have difficulty trying to remember names, directions, or how to do a simple task, for example.
When such occasions arise, you can help other people understand these GBM symptoms or effects, reassuring your loved one by acting as a “buffer” to stressful social interactions.
6. Assist with rehabilitation
Both before and after treatment, glioblastoma often causes problems with speech, cognition, and mobility. Physical and occupational therapy can help your loved one manage these problems and restore a better quality of life.
Learn everything you can about your loved one’s rehab plan, so you can find ways to help them reach their goals. Ask what more you can do to help improve your loved one’s cognitive health, which can be especially important once cancer treatment ends.
7. Don’t think too far ahead
Instead of ruminating over the eventual outcome, remember that what your loved one needs most is for you to be present in the here and now. This means being a good listener and spending quality time with your loved one.
Beyond all the tasks and invaluable assistance, sometimes showing up to talk, watch a movie, attend a religious service, go for a drive, or simply spend quiet time together is the best kind of support you can give.
To learn more about life with glioblastoma or to help your loved one get treatment, contact the practice of Jose Valerio, MD, to book an appointment. We have offices in South Miami, Hialeah, and Weston, Florida.