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Coping as a Patient

Each person’s experience with a brain tumor is different, but a similar sense of fear is felt by everyone. With a little help, most people can learn to manage their feelings and the changes brought on by a brain tumor and its treatment. You can learn how to gain more control, every step of the way. This is true for both patients, and their loved ones. Coping with a brain tumor is easier with support from others.

You Are Not Alone

Many people feel alone, confused, and afraid when they first learn about their diagnosis. In all cases, (for patients and caregivers alike) it helps to sort through information with people who have experience. To find others who have dealt with a brain tumor diagnosis, you can connect with support groups, counselors, online chats, or organizations that offer over-the-phone support.

Things to Remember:

  • It’s normal to feel scared, insecure, and angry about a brain tumor diagnosis– and it is possible to deal with these feelings.
  • You can take an empowerment approach to gain a sense of control over this disease.
  • You are not alone.
  • No question is wrong to ask.
  • Take time to process the information you’re given. You probably have enough time to take a deep breath and think about your next steps.
  • Talking openly with your family members and your doctor can help keep the treatment process smooth. Remember what’s important to you and think about your goals and values. Aim to enjoy the things that make your life special.

More detail on support groups, coping strategies, side effect management, quality of life improvements, and practical matters can be found throughout our website or in the Frankly Speaking About Brain Tumors booklet.

Coping as a Caregiver

Being a Caregiver

A caregiver is anyone who provides unpaid help, or arranges for help to care for someone with an illness or disability. Help comes in many forms for caregivers. It can range from emotional and spiritual to financial and logistic. The best help comes from people who’ve “been there” and can teach you about options for treatment, expectations for recovery, and resources for support.

It’s easy to forget to take care of yourself when you’re caring for someone else. It becomes hard to focus on work, chores and other demands, yet the pressures continue. There are ways to build-in time for yourself. This is essential for your own wellbeing. Though it’s hard, aim to find a balance between caring for others, and caring for yourself. With this aim, you will be less likely to feel exhausted or resentful about caregiving. Remember that taking time to care for yourself is not selfish.

People who are forced to become a “caregiver” can find balance as they learn to manage the task before them.

Care for Yourself - Things to Remember:

  • You can help your loved one think through treatment options, goals and priorities during this difficult period.
  • The medical team can help you know what to expect and how to plan. Recovery after treatment can take time, and it helps to feel prepared. Ask all of your questions.
  • You can get tips from people who are also caring for someone with a brain tumor. These people are often very helpful.
  • You can ask for help, and say “YES!” when someone offers. It’s vital for your own well-being to ask for and accept help. Online organizers (like “lotsahelpinghands.com”) can be very useful.
  • Schedule self-care into your day. You can’t help others unless you take care of your own physical, economic, spiritual and emotional well-being.
  • End-of-life care plans can help your loved one feel more control. Try to get key family members talking about plans. Make sure the doctor is aware of your loved one’s preferences.
  • If you are grieving the life you used to know, it’s normal. Give yourself time to grieve.
  • Focus on the things that really matter. Find ways to enjoy the little moments together.

When a Loved One’s Personality Changes

Depression, anger, confusion and mood swings are common symptoms for people with brain tumors. Personality swings are caused by the tumor, the treatment, or the patient has run out of ways to cope. Under all cases, these changes can be very hard to manage, whether they are small or drastic.

Speak with your doctor if you notice these types of changes. Many emotional shifts can be treated.

Tips to Manage Difficult Moments

  • Don’t let your own feelings of anger, resentment or guilt grow. Admit your feelings so you can address the problem.
  • Be compassionate with yourself. There’s no one way a caregiver should feel. Give yourself permission to separate your feelings from your actions.
  • Ask your support network for some coping ideas. Call a family meeting and say, “Let’s figure out how we can help each other.”
  • Set limits. It’s ok to say “no” when you can’t do something.
  • Remember that you do not need to have all the answers or fix all the problems.
  • Often, just “being there” and quietly listening is all that’s needed. Listen, but try not to react to irrational behavior.

Making Important Decisions

Often, a brain tumor will make it harder to thinking clearly and process information. This may be from the tumor pressing on the brain, from treatment or from generally feeling overwhelmed. Whatever the cause, a loved one may have to become the patient’s advocate and care coordinator. If you must be the treatment decision-maker, remember that you can take time to ask questions, research options, and find support.

Brain tumors are not the same as other major life events. They can be ongoing and often unpredictable. Try to think through reasonable short- and long-term expectations.

Tips for Making Important Decisions

  • Learn about the brain tumor’s type, location, grade, treatment options, and expectations for recovery and side effects.
  • Talk to the best experts you can find in your loved one’s (or your) area for a first and second opinion.
  • Research credible websites, like the National Cancer Institute, and the National Brain Tumor Society.
  • Weigh the pros and cons of each treatment option with your loved one. This should include things like time, location and cost.
  • Create a “to do” list of short and long-term needs. Decide what your loved one can do with and without help.
  • Recognize and respect the capabilities and wishes of your loved one.
  • Set limits for yourself. Define what you can and can’t do for your loved one.
  • Organize a care-plan with others. Stress open communication. (Who is doing what, when?). This plan will help reduce family stress and bring needed relief.
  • Remember that each stage of care calls for different levels of support. Roles will change along the way.
  • Gather copies of medical and treatment records (including operation reports and x-rays). If it makes sense, ask to be the legal “Power of Attorney” for your loved one so you can help with follow-up care plans and future medical decisions.
  • Talk to an oncology social worker at the cancer center or with your oncologist. They can answer many logistical, personal and financial questions.
  • Try to value the good moments you spend with your loved one. Every moment is special.

Moving Forward

It’s frightening to envision a different future than you planned. It can also be difficult to talk about painful topics.

Finding ways to talk about what is happening makes most people feel relieved. The conversation often leads to hope about the life you have together now. Often, people want to make the most of their time together with family, as they make peace with the circumstance. These can be uplifting conversations that give you both a sense of peace.

Bereavement

Research shows that caring for someone with a brain tumor is just as stressful (but in a different way) as the diagnosis. As with other difficult emotional issues, you can contact a social worker or counselor who has experience with caregivers like you. Or talk with a spiritual leader that you trust.

Losing someone you love to cancer is one of the most difficult and profound experiences in life.

In the weeks and months after a death, people feel an enormous mixture of emotions. It is important to know that practically any emotion you feel is normal. Sadness can also be physical, so you can feel tired, achy, and slow.

Be assured that over time, you will feel better. Some people move quickly through grief; others move slowly. No matter how you grieve, it is important to know that your feelings are normal, and that in time, it’s okay to move on.

Resources for Caregivers

There are several organizations and websites that can help family caregivers and volunteers get organized:

National Brain Tumor Society

  • Offers information, connection, and advocacy for people affected by brain tumors. NBTS has excellent resources listed throughout their webpages.

American Brain Tumor Association’s Connections Online Support Community

  • ABTA connects patients, families, friends, and caregivers for support and inspiration.

Lotsa Helping Hands

  • Has the “Help Calendar” where you can post requests for support - things like meals for the family, rides to medical appointments, or just stopping by to visit. Members of your community can quickly find ways to help. Lotsa will send reminders and coordinate logistics automatically.

My Lifeline

  • Those with cancer can create their own personal webpage to communicate with family and friends. Pages include online calendar tools, scheduling timelines, and information about ways friends and family can offer support.

Musella Foundation for Brain Tumor Research & Information

  • Offers education, support (emotional and financial), advocacy and guidance to brain tumor patients. Online support groups and opportunities to participate in fundraisers for brain tumor research are also available.

Respite care and palliative care services

  • Respite care is short-term, temporary relief to caregivers who provide full-time support. It offers intensive care for the patient in their home so a caregiver can take a break. You can contact a respite care organization when you need time away.
  • Palliative care is a service used at any point in a patient’s experience to help a caregiver with the management of pain and other symptoms. Palliative care provides comfort, symptom management, and quality of life tools. Palliative care professionals may come to a person’s home to teach caregivers how to manage problems. Check with your insurance, and ask your hospital or doctor for a referral.

Side Effects

The information here is offered to help if you experience any of these more common problems. Keep notes about how you feel, and work closely with your doctors and nurses to find the best ways to feel better.

Things to remember:

  • Your symptoms are linked to the location of the tumor in your brain, and result from your treatments.
  • Many cognitive symptoms (memory loss, anger, anxiety or depression) not only affect you, but also people close to you.
  • Keep notes and bring them to appointments to help you remember what you’d like to discuss.
  • Relieving symptoms and side effects is not a perfect science. It requires time. Try to be patient with yourself and others as you strive for a higher quality of life.
  • Rehabilitation specialists (physical, speech and occupational therapists) can be terrific help. Try to find a team that is experienced in working with brain tumor patients.
  • Licensed social workers and support groups can help as you cope with depression, anxiety, or other changes in your life.
  • Complementary or alternative medical techniques, such as diet changes, exercise, or relaxation techniques, may also help.

Location of the Tumor Matters

As a brain tumor grows, it presses on the surrounding brain tissue, which affects the function controlled by that part of the brain. Below are the symptoms that can be caused by tumors in different parts of the brain and the spinal cord.

Frontal Lobe

  • Changes in personality
  • Loss of inhibitions, behaving aggressively
  • Losing interest in life (apathy)
  • Difficulty with planning and organizing
  • Being irritable
  • Difficulty speaking
  • Weakness in part of the face, or on one side of the body
  • Difficulty walking
  • Loss of sense of smell
  • Problems with vision or speech

Temporal lobe

  • Forgetting words
  • Short term memory loss
  • Seizures associated with strange feelings, smells

Parietal lobe

  • Difficulty speaking or understanding what is said to you
  • Problems with reading or writing
  • Loss of feeling in part of the body

Occipital lobe

  • Sight problems or loss of vision on one side

Hindbrain (cerebellum)

  • Poor coordination
  • Uncontrolled movement of the eyes
  • Nausea and vomiting
  • Neck stiffness
  • Dizziness

Brain stem

  • Poor coordination
  • Drooping eyelid or mouth on one side
  • Difficulty swallowing
  • Difficulty speaking (slurred speech)
  • Seeing double

Spinal cord

  • Pain
  • Numbness in part of the body
  • Weakness in the legs or arms
  • Loss of control of the bladder or bowel
  • Difficulty walking

Pituitary gland

  • Irregular or infrequent periods
  • Infertility in men and women, impotence
  • Lack of energy
  • Weight gain
  • Mood swings
  • High blood pressure
  • Diabetes
  • Enlarged hands and feet

Nerves controlling sight or hearing

  • Blurry vision
  • Hearing loss

Meninges

  • Headache
  • Nausea and vomiting
  • Sight problems
  • Neck pain

Questions to Ask About Side Effects

  • What side effects should I expect?
  • When should I call you for immediate help? (With which side effects?)
  • What can I do to manage my side effects? Can you help me create a management plan?
  • How do you recommend I keep track of how I feel, and what do you need to know?
  • What can I do to feel better?
  • Will more side effects occur the longer I am in treatment?

Rehabilitating Physical Symptoms

Physical symptoms like weakness, difficulty speaking, stiffness, problems with movement, etc. can be relieved with rehabilitative treatment (rehab). Every person with a brain tumor deserves to function well and should be evaluated for rehab.

Physical, occupational, and speech therapists are experts in this area. Try to find someone who has worked with neurological disorders (rather than only sports injuries, for example):

  • Physical therapists help patients improve walking, balance and strength. Some people experience permanent mobility problems. Physical or occupational therapists will offer exercises to support your range of motion. They make sure your body has proper positioning to help decrease pain and stiffness.
  • Occupational therapists teach patients how to manage changes and regain skills for daily activities, such as cooking, writing, and driving.
  • Speech therapists help people overcome problems with language. They teach patients how to improve their speech process and adjust how they verbalize or otherwise express ideas. Speech therapists also help with eating and swallowing caused by oral motor problems.
  • Cognitive therapists help people develop exercises and strategies to overcome problems with thinking and memory that may result from the brain tumor.

As needed, there are devices and exercises that can be prescribed. Handrails, grab bars and bath or shower chairs are some. There are also tools to help with eating, dressing, and computer access. Rehabilitation specialists can help you get the support you need.

The Americans with Disabilities Act was created, in part, to help people who experience a disability from illness go back to work with reasonable accommodations. It can help patients gain access to federal and state resources.

Headaches

Headaches are most often caused by edema. Edema is swelling of the brain caused by the tumor or treatment. Steroids may be prescribed to reduce edema. Unfortunately, steroids can cause their own set of problems (difficulty sleeping, sweating, over-eating, agitation). If you take steroids, tell your medical team if you can’t sleep or have other new symptoms so they can adjust the dose. Avastin, a drug often used to treat glioblastomas is also very helpful in reducing edema.

Some headaches are connected with dizziness, nausea, or vomiting. This is often linked to the location of the tumor in the brain. The surgical removal of the tumor will often relieve those headaches. Post-operative headaches often go away after a short period of time.

If your headaches don’t go away or if they return, it could be a sign of recurrent edema or a new tumor. This should be addressed by your treatment team.

Seizures

A seizure is when an abnormal burst of electrical activity in the brain causes an attack. It can cause muscle contractions, staring, or a loss of consciousness.

Some people only experience one seizure, others suffer from many. They are common with slow-growing gliomas, meningiomas, and metastatic brain tumors.

  • Simple Partial Seizures can cause abnormal taste or smells, involuntary jerking, tingling or numbness in one part of the body, buzzing in the ears, lip smacking, and dilated pupils.
  • Complex Partial Seizures cause altered consciousness. A patient may be aware of his or her surroundings but unable to speak, or may feel confused and hallucinate (imagining sights, odors, and sounds).
  • Generalized Seizures are also called grand mal seizures. They begin with a sudden loss of physical control with flailing arms and legs, unconsciousness, twitching, incontinence, and short breaths. After, the patient may be limp or confused.

A patient may be put on an antiepileptic (AED) or antiseizure drug to prevent future seizures. The type and amount of AED medicine is based on your symptoms and how well you react to it. Also, some AEDs should not be used with chemotherapy.

Patients who have many seizures can keep a journal to keep track. Write down when they happen, what happens, and for how long. The doctor can find a pattern and provide the best antiepileptic drug to help. You may find it’s helpful to wear a medical alert bracelet with information about the AED drugs you use (or shouldn’t use).

Low Blood Counts

Anemia is when red blood cell (RBCs) levels are unusually low. RBCs are important because they allow oxygen to circulate through our bodies. Low RBC levels lead to fatigue or symptoms like dizziness, or shortness of breath. Anemia can be treated with medicine or with a blood transfusion.

Chemotherapy may increase your risk of infection. This is because they lower the number of white blood cells, the cells that help your body to fight infection. During chemotherapy, there will be times in your treatment cycle when the number of white blood cells (called neutrophils) is particularly low and you are at increased risk of infection. Steroids can also lower certain WBCs, called lymphocytes. Your doctor may prescribe antibiotics to help protect you.

Thrombocytopenia is when the level of thrombocytes or platelets is unusually low. Platelets are important for our blood to clot. Chemotherapy can decrease these cells. When they fall too low, we risk excessive bleeding. If thrombocytopenia becomes too severe, platelet transfusions may be needed.

Thrombosis is when clotting factors in the blood get too high. With deep vein thrombosis (DVT), blood clots form in the legs and disrupt the flow of blood, causing pain or swelling in the calf, behind the knee, or in the thigh. If blood clots break loose and block blood vessels in the lung, it is called pulmonary embolus (PE). This requires immediate medical attention. DVT and PE may occur after brain tumor surgery, especially when a patient is not physically active. Staying active and walking as much as possible is the best way to prevent DVT. Compression stockings and blood thinners are also used for prevention.

Gastrointestinal (GI) Problems

GI problems can include any difficulty with digestion or stomach discomfort. Chemotherapy is well known for causing GI problems.

Tips to relieve constipation:

  • Eat more fiber-rich foods (whole grains, fruits and vegetables)
  • Increase physical activity
  • Consider laxatives
  • Drink more water

Tips to relieve nausea and vomiting:

  • Antinausea medications called antiemetics may help
  • Diet changes are useful. For example, when you don’t feel like eating, try frequent healthy snacks rather than large meals
  • Bland foods, crackers, and clear liquids between meals may be better tolerated
  • Avoid foods with strong odors, heavy spice, alcohol, and greasy or fried foods
  • Suck on a lemon drop candy to relieve nausea

Fatigue

Feeling extremely tired is the most common side effect reported by patients.

Fatigue is caused by many things. It can be from tumor treatments to the tumor itself, to the healing process, to poor sleep, stress, or anemia. It is not relieved by a good night’s sleep. Fatigue is one of the most troubling symptoms of a brain tumor because it limits a person’s ability to function.

No matter what the cause, fatigue can be managed. The goal is to conserve energy so you can do the things that are important to you.

Tips to Manage Fatigue:

  • Try to establish a daily routine
  • Listen to your body. Rest when you need to
  • Mild exercise will help give you more energy
  • Make lists of things you need to do and recruit help
  • Make plans to get things done when you have the most energy (during the day)
  • If you have anemia (a low level of red-blood cells), medicine may help
  • Ask if drugs, like Provigil, may help reduce fatigue

Cognitive and Behavioral Changes

A brain tumor and its treatment(s) can cause changes in a person’s behavior and ability to think. Patients may have a hard time with communication, concentration, memory, and they may feel moody.

These difficulties can certainly affect your daily life, and they do not always go away. This can cause stress for everyone involved.

Medicine and counseling may be prescribed to help with cognitive and behavioral changes. More tools to cope with cognitive and behavioral changes include cognitive rehabilitation.

Cognitive rehabilitation helps people regain as much of their mental, physical and emotional abilities as possible.

  • Compensation techniques develop alternate skills to make up for those that have been lost. For example, exercises to strengthen sight, speech, and movement. When full recovery is not possible, compensation includes learning to live with memory loss by keeping calendars, reminder systems, and organizers. Caregivers and/or family members also benefit from compensation tools. Neuropsychologists are cognitive experts that can help find solutions or offer medication (for example, Ritalin).
  • Anger management includes training, counseling or medication to help a patient who finds themselves impulsive, frustrated or moody.

Often, a caregiver feels frustrated (“Why can’t [the patient] do a simple task?”) and angry (“He/She’s driving me nuts!”). Mixed emotions towards a loved one are common. These feelings make home life very complicated – especially as people with brain tumors live longer in a cognitively impaired state. Caregivers also benefit from compensation techniques or anger management tools to maintain the high level of patience that’s needed.

Anxiety & Depression

Anxiety is a normal response to new and stressful situations. Feeling anxious from the tumor or treatment makes every situation feel more intense. Common symptoms of anxiety include: rapid heartbeat, fear, restlessness, nervousness, and sweaty palms. If you feel anxious it is important to talk about it. It’s the first step to regaining control in your life.

Often, depression and anxiety go together. Depression is common in people with brain tumors. People who feel depressed feel irritable, hopeless and unable to concentrate, withdrawn and moody. Sometimes they wish to harm themselves. Depression is serious. It can and should be treated on its own.

Treatments include antidepressant medication and counseling. Just talking about how you feel with someone skilled in relieving emotional problems can help make you feel better.

Most people say that their mood improves as the symptoms and side effects of a brain tumor or its treatment are managed and go away.

Tips to cope with Emotional Distress:

  • Talk with friends, family, or spiritual advisors about your feelings and fears
  • Make an appointment with a counselor, therapist, or psychiatrist for help
  • Join a support group or call a cancer outreach program
  • Ask your doctor about medications that can help
  • Try to solve only one problem at a time
  • Use relaxation techniques to reduce your body’s sensation of stress or anxiety
  • Focus on living in the moment
  • Understand that there will be good and bad days

Hormonal Changes, Fertility & Sexuality

Hormonal Changes

A tumor found in or near the hypothalamus, pituitary or pineal glands may cause hormonal changes. Radiation therapy may also cause changes in hormones and endocrine function, especially a lowering of thyroid function. If left untreated, mood and personality changes, as well as sexual problems can result. An endocrinologist is the type of specialist that can help.

Fertility

Many of the treatments used for brain tumors can impact a person’s fertility. If you’d like to bear a child in the future, it’s important to speak-up before treatment begins. You may be able to consider sperm or egg banking, or tissue freezing. Insurance is not always helpful. Ask your insurance company what’s covered before you begin.

Sexuality

Unfortunately, a brain tumor and its treatment can decreased your sex drive, lead to fatigue and impact how you feel about yourself. Many people don’t feel comfortable talking about this problem with their doctor. Your doctor or nurse may be able to offer good advice.

Tips to restore intimacy:

  • To feel connected with your partner, consider how he/she “hears” what you want to say
  • Find ways to feel more attractive to yourself, and in turn, to your partner
  • Talk about new ways that you and your partner can connect and feel close
  • Remember to make small, intimate gestures, like a smile, a touch, or a hug
  • Look online at the American Cancer Society’s content on fertility, sexuality and intimacy after cancer