Emotion and Symptom Management Toolkit

Crisis Resources

Anxiety (Distress)

What is anxiety (distress)?

People with cancer often experience anxiety This is a normal reaction. Like other cancer symptoms, anxiety can be mild, moderate, or severe.

How do people describe anxiety?

People who have anxiety say they feel uneasy, tense, vulnerable, apprehensive, wary, and agitated. They have a feeling of restlessness, uncertainty, distress, and are fearful or have a sense of dread or impending doom. Anxiety may cause a feeling of loneliness and affect your quality of life. Those with anxiety may have difficulty concentrating on tasks.

Those with anxiety may have some of the following symptoms:

  • Excessive worrying
  • Restlessness and muscle tension
  • Changes in sleep habits
  • Physical signs, such as: rapid heartbeat, sweating, difficulty breathing, nausea, diarrhea, dizziness, palpitations, chest tightness, flushing, and high blood pressure.

What causes anxiety?

Anxiety can result from many different aspects of cancer and cancer treatment. Uncontrolled symptoms, such as pain or nausea can make a person feel anxious. Certain procedures, such as receiving chemotherapy, having to clean an ostomy bag, or undergoing surgery can also cause anxiety.

Other possible causes of anxiety include the costs of cancer treatment, or changing roles within the family. In addition, a lack of information or understanding about your cancer or cancer treatment can cause anxiety.

Factors that can lead to increased anxiety include lack of social support, previous anxiety or mood disorders, and limitations in performing usual activities. Changes in your treatment plan, diagnosis, or prognosis can also increase anxiety.

What can I do about anxiety?

While no two people experience anxiety in the same way, here are some tips you may find helpful:

ACTIVITY

  • Exercise and activities: dance, art, meditation, mindfulness techniques, controlled breathing techniques, guided imagery, relaxation tapes.
  • Education: gathering information, cognitive behavioral training.
  • Treatments: massage, acupuncture, reflexology, music therapy.

DIET

  • Limit your caffeine intake by decreasing your intake of coffee, caffeinated soda, tea, energy drinks, and chocolate.
  • Avoid alcohol, which can increase anxiety.

MOOD

  • Try to identify what “triggers” your anxiety.
  • Review coping strategies that have helped in the past.
  • Talk with others, such as in a support group or your nurse or doctor, about your anxiety.
  • Keeping a daily written record of your life and experiences with cancer can reduce anxiety for some people.
  • Discuss financial concerns with a social worker who may be able to offer financial resources.
  • Ask your nurse or doctor for a counseling referral if these tips are not helpful.

MEDICATIONS

  • Medications may be needed to help control anxiety, including anti-anxiety/ antidepressant medication.
  • If medication is needed, it should be tailored to your situation, taking into account your treatment and other medical conditions.
  • It may take time experimenting with different medications to find the right one that will work for you.
  • Once your anxiety symptoms have decreased, your doctor may decrease the dose of your medication or decide to discontinue this medication.
  • Discuss medication for your anxiety with your nurse or doctor.

What can my family members and friends do to help me with my anxiety?

Ask family members and friends to:

  • Talk about anxiety and fears with you, but to not force you to discuss your feelings before you are ready.
  • Help with relaxation exercises, such as deep breathing or visualizing pleasant scenery.
  • Help with situations or chores that you have identified as stressful, such as accompanying you to nurse or doctor’s appointments.

What should I report to my nurse or doctor about my anxiety?

  • If you experience any of the following symptoms, report them to your nurse or doctor:
  • Trouble eating (a noticeable decrease in appetite for a period of weeks).
  • Persistent fearfulness.
  • Shortness of breath that lasts for a period of time.
  • Persistent problems sleeping or getting to sleep.
  • Heart racing or beating hard in the chest.
  • No relief after trying relaxation techniques.
  • Anxiety that interferes with daily activities.
  • Constant feeling of uneasiness or nervousness that lasts for more than 2 weeks.

What should I discuss with my nurse or doctor about my anxiety?

  • If you are experiencing anxiety, you should discuss the following with your nurse or doctor at your next appointment:
  • How to recognize the symptoms of anxiety.
  • How it will be determined if you have an anxiety disorder and what kind of help you might need.
  • Could my cancer, medications, or treatment be causing or contributing to my feelings of anxiety?
  • Will treating my anxiety interfere with my cancer treatment?
  • Can you refer me to a social worker or other reliable sources of information about counseling and support groups?
  • Talk with your nurse or doctor about any history of mood disorders or substance abuse that can increase feelings of anxiety.

Where can I get more information?

For more information, contact the organizations at the numbers or websites listed below:

Breakthrough Pain

What is breakthrough pain?

Many people with chronic cancer-related pain experience intermittent flares of pain called breakthrough pain. These flares can occur even though a person is regularly taking medication for pain control.. It can occur with or without activity, and usually occurs without warning. Breakthrough pain is pain that gets beyond the control of pain medication before it is time to take your next dose.

How do people describe breakthrough pain?

People with cancer pain often notice that their pain changes throughout the day. Breakthrough pain is more intense than the pain you have been having over a period of hours or days, in spite of taking pain medication around the clockThe pain may be described as aching, sharp, shooting, burning, or throbbing. It is often acute and abrupt.

While breakthrough pain flares may vary in length, intensity, or cause, the typical episode reaches peak intensity in as little as three minutes and lasts an average of 30 minutes.

What causes breakthrough pain?

Breakthrough pain occurs when your pain medication is no longer at a level sufficient to control your pain. This kind of pain can happen unexpectedly for no obvious reason, or it may be triggered by a specific activity like coughing or moving. Most people who have breakthrough cancer pain experience several episodes a day.

What can I do about breakthrough pain?

Almost all people experiencing chronic cancer pain should receive pain medication for around-the-clock pain control and a medication specifically for treatment of breakthrough pain. Current medicines used to treat breakthrough pain include immediate release morphine tablets, capsules, or solution.

However, patients with a stoma can be especially sensitive to medications that are poorly absorbed or cause constipation, diarrhea, or other uncomfortable side effects. Your doctor will prescribe you medication that will help relieve your pain without irritating your stoma.

Here are some tips you may find helpful:

ACTIVITY

  • Keep a pain diary. When does your breakthrough pain happen? Rate your pain on a 0-10 scale at set times throughout the day, (0 no pain to 10 worst pain imaginable). Write the new rating in the journal, along with the time it happened. Keeping track of these details will help your nurse or doctor make recommendations for you.
  • Practice relaxation techniques, such as controlled breathing or meditation, to help take your mind off the pain

MEDICATIONS

  • Take your prescription pain medication (e.g. hydrocodone or oxycodone) exactly as a nurse or doctor has instructed you to. Use only approved over-the-counter medications that your doctor has said are compatible with your stoma.
  • If your current medication is not sufficient in relieving your pain, talk to your doctor about trying a different medication.

What can my family members and friends do to help me with my breakthrough pain?

Ask family members and friends to:

  • Pick up prescriptions or over the counter pain medications on your behalf.
  • Remind you when it is time to call your nurse or doctor.
  • Ask your family members and friends to help you with daily activities that your breakthrough pain makes difficult.

What should I report to my nurse or doctor about my breakthrough pain?

  • Pain not relieved by current medication, how often it occurs, how long it lasts, and how severe it is for you.
  • Any new breakthrough pains or worsening of existing pain.
  • Unbearable side effects to pain medication (example: uncontrolled constipation or diarrhea).

What should I discuss with my nurse or doctor about my breakthrough pain?

If you are experiencing breakthrough pain, you should discuss the following with your nurse or doctor at your next appointment:

  • What medications can I take to help relieve my breakthrough pain?
  • Will this medication affect my stoma?
  • What can I take to help with the side effects of my medication (e.g. constipation)?

Changes in Your Ability to Have Sex

What are changes in your ability to have sex?

Changes in your ability to have sex can include any changes or difficulties with physical pleasure, desire, preference, arousal, or ability to reach orgasm. Sexual function is an important factor for both men and women so when issues arise, this can greatly impact your quality of life.

How do people describe changes in their ability to have sex?

Women and men may describe changes in their ability to have sex differently. It may be described as:

  • Loss in interest or desire for sex.
  • Avoidance of sex or sexual activity.
  • Inability to feel “excited” or reach orgasm even with sensual touch and groping.
  • Orgasms that do not feel as good as before (less intense).
  • Sex that is uncomfortable or painful.

What causes changes in your ability to have sex?

Many aspects of your cancer or cancer treatment can affect your ability to have sex, which may or may not improve with time. These changes can be different for men and women.

Women

  • Loss of sexual desire or stamina: Some medications, anxiety, stress, or emotional aspects from cancer or cancer treatment can affect your ability to have sex.
  • Women with a stoma or stoma bags from surgery may feel unattractive or undesirable as a result of their surgery. Stomas or stoma bags may also make it physically difficult to engage in intimacy.
  • Pain, irritation, dryness or early menopause resulting from surgery or chemotherapy may also cause difficulty with intimacy.

Men

  • Loss of sexual desire or stamina: Some medications, anxiety, stress, or emotional aspects from cancer or cancer treatment can affect your ability to have sex.
  • Men with a stoma or stoma bags from surgery may feel unattractive or undesirable as a result of their surgery. Stomas or stoma bags may also make it physically difficult to engage in intimacy.
  • Nerve damage, pain, irritation, loss of sensation, dryness and fatigue resulting from surgery or chemotherapy may also cause difficulty with intimacy.

Here are some tips that you may find helpful:

ACTIVITY

  • Use foreplay.
  • Set the mood with lighting, candles, soft music.
  • Experiment with your partner to try different positions or techniques.

Women

  • Use vaginal moisturizers as needed for vaginal dryness.
  • Use proper lubrication during sex or while touching genitals.
  • Relax prior to sexual intercourse.

Men

  • Take medications to produce an erection as needed.
  • Use penile devices as directed and as needed.

DIET

Certain foods are known to increase vaginal lubrication in women:

  • Soybeans
  • Olive Oil
  • Soymilk
  • Tofu
  • Fermented soy products
  • Red clover
  • Flaxseed or flaxseed oil
  • Apples
  • Legumes
  • Seeds
  • Nuts
  • Vegetable oil
  • Avocados
  • Fish
  • Evening primrose oil
  • Oral vitamin E supplement

Avoid foods that may cause stomal irritation such as cabbage, asparagus, broccoli, spinach, eggs, and carbonated drinks.

PSYCHOSOCIAL

  • Verbalize your concerns or desires regarding sex.
  • Communicate any pain or discomfort during sex and resolve it if possible.
  • Find new ways to express sexuality, through touch, kissing, and massaging.
  • See a sex therapist, psychologist, or clinical social worker if needed.

What can my partner do to help me with changes in my sexual function?

Ask your partner to:

  • Communicate openly and honestly with you.
  • Listen to your concerns regarding changes in your sexual function.
  • Establish new ways to pleasure each other.

What can I report to my healthcare provider about changes in my ability to have sex?

  • Loss of desire for sex.
  • Negative thoughts and feelings during sex.
  • Difficulty getting aroused, maintaining arousal, reaching orgasm, or orgasms that are less intense.
  • Vaginal dryness.
  • Experiencing orgasm without semen.
  • Pain or discomfort during sex or sexual activities.

What can I discuss with my healthcare provider about changes in my ability to have sex?

  • When is it safe to have sex?
  • Are there any types of sex or sexual activity that I should avoid?
  • Is my partner at any increased risk as a result of my cancer treatment?
  • What medications can affect my sex life?
  • How will the cancer I experienced and my cancer treatment affect my sex life?

Consider involving your partner in discussions with your physician about your changes in your sexual activity to facilitate a more open discussion.

Where can I get more information?

If you have an ostomy or urinary continent diversion, United Ostomy Associations of America (UOAA) has helpful sexuality resources including the "Intimacy After Surgery Guide:"

Communication with Family and Friends

A message from United Ostomy Associations of America:

WHO SHOULD I TELL? WHAT SHOULD I SAY ABOUT MY SURGERY?

You should first tell those who need to know, such as healthcare providers, your spouse or partner, and people who are involved in your recuperative care.

Don’t feel that you have to explain your surgery to everyone who asks. It is your choice who you choose to share with and how much information you are comfortable sharing. Some people are just curious and explaining that you had an abdominal surgery is more than adequate. Sharing your story can be powerful however and help educate the larger community and your circle of friends that people with an ostomy are all around us living healthy lives.

If you are beginning an intimate relationship, thorough discussions with your future partner about life with an ostomy and its effect on sex, children, and family acceptance will help alleviate misconceptions. If you have children, answer their questions simply and truthfully. Depending on their age, a simple explanation may be enough for them.

You may want to confide in your employer or a good friend at work. An ostomy is nothing to be embarrassed by and keeping it a complete secret could cause practical difficulties.

Why is it important to effectively communicate with your family and friends?

The experience of cancer or any life-threatening illness affects the entire family, as well as friends and co-workers. Spouses or partners can sympathetically suffer the same symptoms you suffer such as nausea or pain. Children and parents of cancer patients face uncertainty and fear.

Effective communication is important to help discuss your needs. Asking for help is essential for the support that you will need to deal with cancer and caring for your stoma.

Effective communication can actually improve feelings of anxiety, fear, depression, and quality of life. It can help you and your loved ones cope more effectively with your diagnosis and treatment.

How can I effectively talk to my family and friends?

You do not have to face the cancer alone. Call your friends, family, and anyone else who supports you. Even if you are coping well and able to function, the additional stress of the disease and its treatment puts a strain on the body. There are no disadvantages to having support in place in case you need it. Asking for help is a sign of strength and allows you to take control.

What are some effective communication strategies?

Here are some tips you may find helpful:

ACTIVITY

  • Use “I” statements, such as “I feel angry when…”, “I feel frustrated because...”, “I feel sad because…”
  • Avoid using “you” statements, such as “you always…” or “you never…”
  • Clarify statements, such as “Correct me if I heard you wrong, but I thought you said…”
  • Schedule time every day to talk. You can minimize interruptions by not answering the doorbell, turning off the ringer on the phone, and turning off the TV.
  • Express your feelings and try to communicate openly.
  • Know what you want; set priorities by making a list before asking for help.

ASKING FOR WHAT YOU NEED

  • Please help me with emptying my ostomy bag.
  • I need a hug.
  • Would you be able to pick up ostomy paste for me at the pharmacy on your way home?

Having cancer brings up many topics to discuss with the people in your life. In addition to sharing feelings about your cancer, other main topics you might want to discuss are:

  • Your short-term and long-term goals for your life, which are most important to you.
  • Your goals for your health, and which are most important to you.
  • Major decisions about your health care. For example, who should be your health care proxy? Should you try an experimental treatment?
  • Your symptoms. It is helpful for a second person to know how you feel and be able to report details to your nurse or doctor.

What can family members and friends do to help me communicate more effectively?

Ask family members and friends to:

  • Encourage you to tell them what you need.
  • Tell you when they think you are not being clear in telling them what you need.

Where can I get more information?

For more information, contact the organizations at the numbers or websites listed below:

  • Contact your healthcare provider.
  • Seek the assistance of a licensed counselor, therapist or clergy.
  • If you have an ostomy or are considering surgery and have concerns, United Ostomy Associations of America (UOAA) has emotional concern resources: https://www.ostomy.org/emotional-issues/
  • National Cancer Institute: 1-800-4-CANCER or http://cancer.gov/cancerinfo.Click on coping with cancer.
  • National Coalition for Cancer Survivorship: 1-888-YES-NCCS or go to the Cancer Survival Toolbox - http://www.canceradvocacy.org.
  • American Cancer Society: 1-800-ACS-2345 or http://www.cancer.org. Click on information for patients.

Communication with Healthcare Providers

Why is it important to communicate with your healthcare providers?

Almost everyone feels better and more in control of their treatment when they understand why it is being given, as well as side effects that may happen. However, many people have a difficult time talking with their nurse or doctor. Some feel uncomfortable asking questions or talking about their stoma and proper stoma care.

You will need a great deal of information to be informed and make decisions. Some of this information is complicated, and often it must come from different sources. Many people have difficulty getting the information they need.

Some cancer centers have navigators or care managers who will help patients manage their information. It is important that you let the nurse or doctor know you need information, or when you do not understand something.

How do I talk with my healthcare providers to get the information I need?

  • Take notes before, during and after your appointment about topics you would like information on.
  • Ask questions if you aren’t sure about something. For example, if yougo your doctor or nurse to provide a walkthrough of common stoma care procedures.
  • Bring a friend or family member to your appointment to take notes or help you ask questions.

What should I report to my healthcare providers?

  • Symptoms: report how they occur, how severe what makes it worse or better
  • Symptoms: report how severe (0-10 scale; 0 no symptom to 10 worst imaginable symptom).
  • Other physical, emotional, or financial problems you have been experiencing.
  • Need for assistance with physical functions or managing stoma.

What should I know about my stoma and stoma care?

People should have all the information they need to provide the best possible care at home. There are many kinds of information that you need, including:

  • An understanding of your diagnosis and stage of disease.
  • Stoma and stoma accessories terminology
  • How your diet and lifestyle needs change due to your stoma
  • Recommended stoma care products and where to obtain them
  • How to best keep track of treatment and side effects.

There are five things you can do to improve your ability to get information you need.

  1. Make a log or write questions down and bring to appointments.
  2. Be sure your questions are phrased clearly and specifically.
  3. Ask for tutorials or walkthroughs from your nurse or doctor.
  4. Learn who can answer your questions.
  5. Be sure you know whom you need to reach and how to reach them.

Where can I get more information?

For more information, contact the organizations at the numbers or websites listed below:

  • If you have an ostomy or are considering surgery, United Ostomy Associations of America (UOAA) has a self-advocacy toolkit: “Expect More: Take Control of Your Health Care” including a section on finding your voice that has 10 Questions to help you speak up with your medical professional:https://www.ostomy.org/expect-more-take-control-of-your-healthcare/
  • American Cancer Society at 1-800-227-2345 or visit on the internet atwww.cancer.org Hover over “Find Support and Treatment”, then click on “Finding and Paying for Treatment”.
  • National Cancer Institute at 1-800-4-CANCER or visit on the internet at:www.cancer.gov/cancerinfo/ Click on “Coping with Cancer”. Then click on “Finding Healthcare Services”.
  • National Coalition for Cancer Survivorship at 301-650-9127 or www.canceradvocacy.org/ Hover over “Healthcare Professionals”, then click on “Career Resources for Patients”.

Depression

What is depression?

Depression is sadness that is more than normal, and typically lasts at least two weeks. It can happen in response to an event, or because of changes in your body chemistry.. Most people have felt sad or depressed at times. Feeling depressed can be a normal reaction to life’s challenges, including living with a stoma.

Sometimes depression becomes more severe. This is called major or clinical depression. Signs of clinical depression are depressed mood, loss of interest, abnormal eating and sleeping habits, and/or inability to do one’s daily activities. Clinical depression occurs in about 25% of people with cancer. It can cause great distress, impaired functioning, and decrease a person’s ability to follow his/her treatment schedule.

What causes depression?

Some people with surgically created stomas may experience depression after their procedure due to changes in body image and self-esteem. Depression can also be a result from medication, constant pain, being tired, poor physical function, or from chemical changes in the brain.

What can I do about depression?

Here are some tips you may find helpful:

COMMUNICATION

  • Make an appointment with your nurse or doctor, telling them exactly how you feel and ask for help.
  • Talk with your nurse or doctor about any history of depression.
  • Discuss any lasting irrational beliefs or negative thoughts regarding your stoma with your nurse or doctor.
  • Make an appointment to talk to a counselor, clergy, spiritual advisor, or psychologist about your depression.

What should I report immediately to my nurse or doctor about my depression?

If you experience any of the following, report them immediately to your nurse or doctor:

  • Feelings of desire for suicide (if so, call 911).
  • Feelings about wanting to hurt others.
  • Constant desire for substance abuse - drugs or alcohol.

ACTIVITY

  • Try to determine the cause of your depression.
  • Try to get enough sleep at night; avoid napping during the day.
  • Try relaxation techniques such as meditation, massage, controlled breathing, and art or music therapy.
  • Participate in regular, routine exercise such as regular walking and yoga.
  • Join a support group or make an appointment with a counselor.

DIET

  • Avoid alcohol consumption; it can make you more depressed.
  • Try to maintain good health by eating nutritious foods. Speak with your physician or a dietician to identify nutritious foods that won’t irritate your stoma, as well.

What can my family members and friends do to help me with my depression?

Ask family members and friends to:

  • Stay with you, especially during difficult times. Sometimes just having someone there with you is enough.
  • Help you with your daily needs until you are able to care for these on your own.
  • Help you with relaxation exercises, controlled breathing exercise, or visualizing pleasant scenes.
  • Communicate with your nurse or doctor on your behalf if you prefer them to.

Below is a list of symptoms for depression or sadness. If you have five or more symptoms on this list including one of the first two items, then you should contact your nurse or doctor.

  • Depressed mood every day for most of the day.
  • Very little interest or pleasure in most activities nearly every day for most of the day.
  • Noticeable weight loss or weight gain - or a major change in appetite.
  • Sleep disturbance: not being able to get to sleep or waking early or being very sleepy nearly every day.
  • Feeling agitated, or feeling slowed-down nearly every day.
  • Feeling excessively tired or lacking in energy nearly every day.
  • Feeling worthless or guilty nearly every day.
  • Feeling unable to concentrate or make decisions.
  • Frequent thoughts of death or suicide.

What can I discuss with my nurse or doctor about my depression?

If you are experiencing depression, you should discuss the following with your nurse or doctor at your next appointment:

  • How can I recognize the symptoms of depression?
  • How will you determine if I am depressed and need help?
  • Will treating my depression interfere with caring for my stoma?
  • Can you refer me to a psychologist, social worker or other reliable sources of information about counseling and support groups?

Where can I get more information?

For more information, contact the organizations at the numbers or websites listed below:

  • American Cancer Society at 1-800-227-2345 orwww.cancer.orgClick on the purple “Find Support & Treatment” tab at the top, then click on “Treatment and Side Effects” on the left. Scroll down and click on “Physical Side Effects”. Scroll down again to select “Dealing with Symptoms at Home”. Select “Depression”.
  • National Cancer Institute at 1-800-4-CANCER orwww.cancer.govType “depression” in the search box in the upper right corner. Select “Depression (PDQ)” and then click on the “Patient Version” tab.

Remembering Things

What is trouble with remembering things (Cognitive Dysfunction)?

Cancer patients may experience a decline in mental functioning, ranging from mild impairment (lack of concentration) to extreme impairment (delirium). People with delirium may feel confused, excited, or disoriented. Most of the time the concerns affect concentration and memory.

How do people describe difficulty remembering things?

People may describe cognitive impairment as mental fatigue, “chemo brain” or “brain fog.” This includes problems with distraction, feeling exhausted by tasks that require mental energy, or problems with handling complex information. A person may have difficulty remembering things they normally would not have trouble recalling or be slower in their thinking. In more extreme cases, people may have difficulty with their sleep cycle, mood changes, disorganized thinking and speech, inability to concentrate, or short-term memory loss.

People often notice these problems during their chemotherapy treatment. Within one year of treatment, people find that these symptoms are greatly improved or no longer exist. However, for some people, “chemo brain” can continue for years following the completion of treatment.

What causes difficulty remembering things?

The primary causes of cognitive problems are the cancer itself and the treatments involved in working to cure it. Other things that can contribute to cognitive problems are:

  • The central nervous system, including the brain, is particularly sensitive to many cancer treatments. Cancer treatments such as chemotherapy and immunotherapy are not precise. They affect more parts of your body than just where the cancer tumor is located. Cancer may also spread to the brain.
  • Poor nutrition. Low levels of iron, Vitamin B, and folic acid can decrease a person’s memory and abilities to pay attention or speak. Low iron can lead to a decrease in red blood cells (anemia).
  • Radiation to the brain.
  • Medicine. Some of the medications used to manage side effects, such as pain, nausea, or depression can make people sleepy and less alert. Others like antibiotics to fight infection and steroids can also impair mental function.
  • Rapid changes in hormone levels, such as the kind women experience from menopause-inducing chemotherapies or hormone-producing cancer can alter brain function and cause forgetfulness.
  • Stress, anxiety, depression, and ineffective coping.
  • Decreased immune function.
  • Discomfort from other side effects, such as constipation, diarrhea, severe fatigue, or sleep problems.

What can I do about difficulty remembering things?

Here are some tips that you might find helpful:

ACTIVITY

  • Keep a journal. Track to see if there are patterns as to when you forget things. This may help you plan for the future. Record how often you have symptoms and what the symptoms are. You may share this with your nurse or doctor.
  • Work a crossword, puzzles, math problems, or other mentally stimulating activities.
  • Play a musical instrument.
  • Take up a hobby such as needlework, crocheting, knitting, painting, or drawing.
  • Go to a lecture or an educational program that interests you.
  • Try walking every day for 15-30 minutes, preferably outside.
  • Take the stairs instead of the elevator.
  • Try yoga or meditation.
  • Observe wildlife: birds and animals. Look out your window and watch the birds or other animals.
  • Cancer support groups can offer a wonderful opportunity to speak with others who are likely experiencing side effects like yours.
  • Combat fatigue by taking frequent activity breaks.
  • Do things that take the most thinking at times of the day you feel the best.
  • Concentrate on what matters and divide activities up into manageable parts; you will feel a greater sense of accomplishment.
  • Use a calendar, day planner, to do list, or post it notes to keep track of planned activities and tasks.
  • Tape record things.
  • Use pill boxes for medications to aid in taking them on time.
  • Get enough sleep and rest.
  • Avoid distractions. Work, read, and do your thinking in an uncluttered, peaceful environment.
  • Organize your environment so that things remain in familiar places. For example, always hung up car keys in the same place, and keep your purse/wallet on the kitchen counter.
  • If you need to take something with you when you leave the house, place it near the door. For example, if library books need to be returned, place them in a bag on the door knob.

DIET

  • Drink 8 glasses (8 oz.) of fluid daily to keep hydrated. Fluids can include water, lemonade, lemon-lime soda, popsicles, broth or other soups.
  • Avoid caffeine (i.e. colas, coffee, tea, energy drinks) when possible. Caffeine can cause dehydration.
  • Maintain good nutrition. Some examples of healthy foods that contain iron, B vitamins and/or folic acid are: eggs, beans, dark leafy greens, fish, poultry, low-fat dairy products, and lean red meat.

PSYCHOLOGICAL

  • Try meditation or guided imagery exercises.
  • Try cognitive behavioral therapy.
  • Try mindfulness-based stress reduction.
  • Ask family members and friends for help remembering things.
  • Counseling may help.
  • Talk about your stress with your loved ones and your nurse or doctor who can help you cope better.

How is difficulty remembering things managed?

Some approaches that your nurse or doctor may use to treat your cognitive problems include:

  • Counseling.
  • Stimulants and anti-depression medications.
  • Nutrition evaluation and treatment.
  • Physical therapy.
  • Sleep medications.

What can my family members and friends do to help with my difficulty remembering things?

Ask family members and friends to:

  • Help remind you of important events.
  • Walk with you.
  • Take up a new hobby with you (see above Activity suggestions).
  • Help you get information on your cancer. Information can be found on the Internet, through the American Cancer Society or the National Cancer Institute.
  • Buy crossword puzzles for you.
  • Help you cope with your memory loss with reminders or suggestions.
  • Help you with some of your responsibilities.

How can I talk to my family members and friends about my difficulty remembering things?

Here are some ideas that may help you talk to family members and friends:

  • Ask for ideas to help improve your mental functioning.
  • Tell family members and friends how this problem is affecting your emotions.
  • Ask your family members and friends for suggestions to improve your memory and concentration.
  • Ask your family member how this problem is affecting them.

What should I report to my nurse or doctor about my difficulty remembering things?

If you experience any of the following symptoms, report them to your nurse or doctor:

  • Changes in speech pattern, such as slurred speech.
  • Changes in alertness, such as not being alert, or unable to recognize loved ones.
  • Changes in personality.
  • Feel confused.
  • Dramatic mood changes that last more than a few days.
  • Disorganized thinking or feeling “scatter brained”.

What should I discuss with my nurse or doctor about my difficulty remembering things?

If you are experiencing difficulty remembering things, you should discuss the following with your nurse or doctor at your next appointment:

  • If you have kept a journal of your symptoms, bring this to your appointment and share it with your nurse or doctor.
  • Will my cancer treatment cause me to have trouble remembering things?
  • How long do you think my problems will continue? What has been your experience with other patients taking similar treatments?
  • Are there treatments that can help?
  • Are psychostimulants appropriate for treating my memory problems?
  • Will my problems get worse as treatment continues?
  • Do I have any other conditions that may be contributing to this problem?

Where can I get more information?

For more information, contact the organizations at the numbers or websites listed below:

  • American Cancer Society at 1-800-227-2345 or www.cancer.org Hover over the purple “Find Support & Treatment” tab at the top, then click on “Treatment and Side Effects” on the left. Scroll down and click on the “Read More” button for “Chemotherapy Effects”. Scroll down again to select “Chemo Brain”.
  • CancerSymptoms.org at www.cancersymptoms.org Click on “Treatment Symptoms” from the top menu. Click on “Cognitive Dysfunction” from the menu along the right hand of the screen.
  • National Cancer Institute at 1-800-4-CANCER or www.cancer.gov Type “memory loss” in the search box in the upper right corner. Select “Memory Changes”.
  • Uncooling from Abramson Cancer Center of the University of Pennsylvania at www.oncolink.org Hover over the “Support” tab at the top of the page, then click on “Side Effects”. Select “Chemo Brain”.
  • Scott Hamilton CARES Initiative from The Cleveland Clinic Taussig Cancer Center at www.chemocare.com/managing/ Select “Chemo Brain”.