Finding Hope & Meaning: Living Fully with a Glioma Diagnosis

“Do your best to live a normal life and live a life to the fullest … Spend time with your loved ones, do things you enjoy, find things to do that bring meaning to your life,” Dr. Ormond adds.

If you do find yourself struggling emotionally, as many patients do, know that there are many groups and professionals available to help you cope at every stage of treatment and learning to live with glioma.

There are resources available to help you cope emotionally, physically, and financially.

Medical Team & Treatment Centers

Your medical team is your primary source of information and support. Oncologists, neurologists, and palliative care specialists can guide you through treatment options and symptom management.

If you’re unsure where to start, consider reaching out to a major cancer center or a university-affiliated hospital, as they often have specialized teams dedicated to treating gliomas.

Support Groups & Counseling

Connecting with others who understand your experience can be incredibly valuable. Support groups, both in-person and online, provide a safe space to share feelings, exchange practical tips, and find encouragement.

Organizations such as the American Brain Tumor Association (ABTA), National Brain Tumor Society, and local cancer support centers offer resources to help you connect with support groups.

Additionally, speaking with a counselor or therapist who specializes in chronic illness can help you process emotions and develop coping strategies.

Faith & Spiritual Communities

If spirituality or religion is important to you, seeking guidance from a faith leader, attending spiritual gatherings, or engaging in personal practices like prayer or meditation can provide comfort and strength.

Many people find that reflecting on their values and purpose helps them navigate their journey with greater peace and acceptance.

Financial & Practical Assistance

Financial concerns can add stress to an already difficult situation. Fortunately, there are organizations that offer assistance with medical bills, transportation, and even daily living expenses.

Nonprofits like The Brain Tumor Charity and the Patient Advocate Foundation provide financial aid and guidance on insurance and disability benefits.

A glioma diagnosis affects not only the individual but also their loved ones. Managing practical matters while prioritizing emotional well-being is essential for both you and your family.

Honest conversations with family members can help ease anxiety and foster understanding. While it may be difficult, discussing your needs, fears, and wishes openly can bring you closer and allow your loved ones to offer the support you need.

Can I Work After A Diagnosis?

If you’re concerned about work and income, talk to your employer about possible accommodations, such as flexible hours or remote work.

Dr. Ormond encourages patients to work if they are able.

“[Working is] an important part of what makes humans feel value and it’s important to do that,” he explains.

If working becomes too difficult, consider applying for disability benefits. Social Security Disability Insurance (SSDI) and other programs may provide financial assistance. Consulting a financial advisor or social worker can also help you explore your options.

Living with Purpose

“Don’t let the cancer define you, but instead, define yourself, how you want to be defined,” Dr. Ormond suggests. “… You may have to change aspects of your life because of the cancer, whether temporarily or permanently if you have deficits from it, but don’t let it be the defining feature of your life.”

Maintaining a sense of purpose is crucial. Whether it’s spending time with loved ones, pursuing hobbies, or engaging in advocacy work, finding activities that bring you joy can help you live fully despite the diagnosis.

Some individuals find comfort in sharing their stories, mentoring newly diagnosed patients, or raising awareness about brain tumors.

Coping With Side Effects From Treatment

Treatment for gliomas, including surgery, radiation, and chemotherapy, can cause side effects. While these can be challenging, there are ways to manage them effectively.

Fatigue

Fatigue is one of the most common side effects of glioma treatment. Prioritizing rest, maintaining a balanced diet, and engaging in light physical activity (like short walks) can help combat exhaustion. Speak to your doctor about medications or supplements that might help boost your energy levels.

Nausea & Appetite Changes

Chemotherapy and other treatments can lead to nausea and loss of appetite. Eating small, frequent meals, staying hydrated, and avoiding strong odors may help. Your doctor may also prescribe anti-nausea medications to make eating more manageable.

Cognitive & Memory Issues

Some patients experience “chemo brain,” which affects memory and concentration. Keeping a journal, using reminder apps, and engaging in brain-stimulating activities like puzzles can help. If cognitive challenges become severe, occupational therapy may be beneficial.

Emotional & Mental Health Struggles

Anxiety, depression, and mood swings are common when facing a serious illness. Don’t hesitate to seek professional help if you’re struggling emotionally. Mindfulness, meditation, and journaling can also provide emotional relief.

Pain & Neurological Symptoms

If you experience headaches, seizures, or neuropathy, communicate with your healthcare team immediately. There are medications and therapies that can help manage these symptoms and improve your quality of life.

Questions to Ask Your Doctor

• Can you connect me with local support for patients living with glioma?
• What sort of side effects should I expect after treatment?
• Will I be able to work during or after getting treatment?
• Where can I turn if I am struggling to pay for treatment?

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