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Cancer Caregiving A-Z: An At-Home Guide for Patients and Their Loved Ones

Cancer Caregiving A-Z: An At-Home Guide for Patients and Their Loved Ones

by American Cancer Society

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Winner: 2011 National Health Information Award, Silver, Health Promotion/Disease Prevention; 2011 National Indie Excellence Award, Self-Help, General; 2009 National Health Information Award, Silver; 2009 IBPA Benjamin Franklin Award ——— Whether caring for one’s self at home or providing care for a loved one, this indispensable


Winner: 2011 National Health Information Award, Silver, Health Promotion/Disease Prevention; 2011 National Indie Excellence Award, Self-Help, General; 2009 National Health Information Award, Silver; 2009 IBPA Benjamin Franklin Award ——— Whether caring for one’s self at home or providing care for a loved one, this indispensable quick reference can improve quality of care and quality of life for those with cancer. Organized in a straight-forward alphabetical format, the book covers more than four dozen critical cancer caregiving topics, from anxiety to weight changes, and is filled with vital checklists, as well as time-saving—perhaps life-saving—“What-to-do-ifs," which are readily accessible.

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American Cancer Society, Incorporated
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5.90(w) x 8.90(h) x 0.60(d)

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Cancer Caregiving A to Z

An At-Home Guide for Patients and Families

By American Cancer Society

American Cancer Society / Health Promotions

Copyright © 2008 American Cancer Society
All rights reserved.
ISBN: 978-0-944235-92-8


Anxiety and Fear

Anxiety is a feeling of worry or unease. Anxiety and fear are common feelings that patients and families sometimes have when coping with cancer. These feelings are normal responses to the stress of the cancer experience and may be noticed more in the first week or two after a cancer diagnosis. Feelings of fear or anxiety may be due to changes in one's ability to continue family duties, loss of control over events in life, changes in appearance or body image, or simply the shock of a cancer diagnosis. These feelings may also stem from uncertainty about the future and concerns about suffering, pain, and the unknown. Fears of loss of independence, changes in relationships with loved ones, and becoming a burden to others may overwhelm the patient and complicate family life.

Family members may feel fear or anxiety because they, too, are uncertain about the future or are angry that their loved one has cancer. They may feel guilty and frustrated that they are not able to "do enough." Or they may feel overwhelmed by everything they now have to do. A caregiver can have stress due to problems with balancing work, child care, self care, and other tasks with more responsibility at home. All of this stress is on top of having to worry about and take care of the person with cancer.

Sometimes a person with cancer becomes overly anxious, fearful, or depressed and may no longer cope well with his or her day-to-day life. If this happens, it often helps the patient and family to seek help from a professional therapist or counselor.


* Talk about feelings and fears that you or your family members may have. It's okay to feel sad and frustrated.

* Decide with your family or caregiver what you can do to support each other.

* Avoid blaming yourself and others when you feel anxious and afraid. Instead, try to talk about your feelings and concerns.

* Seek help through counseling and support groups. Consider asking your doctor or nurse for a referral to a counselor to work with you and your family.

* Use prayer, meditation, or other types of spiritual support.

* Try deep breathing and relaxation exercises several times a day. For example, try the following exercise: Close your eyes. Breathe deeply. Concentrate on one body part and relax it, starting with the toes and working up to the head. When you are relaxed, imagine being in a pleasant place, such as a warm beach at sunset or a peaceful meadow.

* Cut down on caffeine. It can worsen anxiety symptoms.

* Talk with your doctor about the possible use of medicine for anxiety.


* Gently invite the patient to talk about his or her fears and concerns. Avoid forcing the patient to talk before he or she is ready.

* Listen carefully without judging the patient's feelings — or your own.

* Decide with the patient what you can do to support each other.

* If the patient is experiencing severe anxiety, reasoning with him or her is usually not helpful. Instead, talk with the doctor about the symptoms and problems you notice.

* Pay attention to your own stress level as well. Try suggestions from the list on the previous page to reduce your own stress, along with any others that have worked for you in the past.

* Consider getting support through groups or individual counseling.

CALL THE DOCTOR if the patient has trouble breathing, is sweating and has a fast or pounding heartbeat, or is more restless than usual.

Note that some medicines or supplements can cause or worsen anxiety symptoms. If anxiety gets worse after the patient begins taking a new medicine, talk with the doctor about it.

For more in-depth information on anxiety and fear, call your American Cancer Society at 800-ACS-2345 and ask for a copy of Anxiety, Fear, and Depression. More information is also available on the Web at www.cancer.org.


Appetite (Poor or Loss of)

People with a poor appetite or no appetite will eat much less than they normally do or may not eat at all. They may show a lack of interest in food, even refusing to eat favorite foods, and may begin to lose weight. Poor appetite can have a number of causes, such as swallowing problems, anxiety, depression, pain, or nausea and vomiting. It can also be due to a change in sense of taste or smell, feeling full, tumor growth, dehydration, or side effects of chemotherapy or radiation. Poor appetite is most often a short-term problem.


* Ask the doctor what may be causing your poor appetite.

* Eat as much as you want, but don't force yourself to eat.

* Think of food as a necessary part of treatment.

* Start the day with breakfast.

* Eat small, frequent meals of your favorite foods.

* Try foods that are high in calories and easy to eat (like pudding, gelatin, ice cream, sherbet, yogurt, and milk shakes).

* Add tasty, high-calorie sauces and gravies to your food, and cut meat into small pieces to make it easier to swallow.

* Use butter, oils, syrups, and milk in foods to raise calories. Avoid low-fat foods unless fats cause heartburn or other problems.

* Try strong flavorings or spices.

* Plan meals that include your favorite foods.

* Create pleasant settings for meals. Soft music, conversation, and other distractions may help you eat more comfortably.

* Eat with other family members.

* Drink liquids between meals instead of with meals. (Liquids at mealtime can lead to early fullness.)

* Try light exercise one hour before meals.

* Hard candies, mint tea, or ginger ale may help get rid of strange tastes in your mouth.

* With your doctor's approval, enjoy a glass of beer or wine before eating.

* Eat a snack at bedtime.

* When you don't feel like eating, try liquid meals of chilled, flavored supplements (such as Ensure, Sustacal, Boost, Carnation Instant Breakfast, and others). Using a straw may help.


* Try giving the patient six to eight small meals and snacks each day.

* Offer starchy foods (like bread, pasta, and potatoes) with high-protein foods (like fish, chicken, meats, turkey, eggs, cheese, milk, tofu, nuts, peanut butter, yogurt, peas, and beans).

* Keep cool drinks and juices within the patient's reach.

* If the smell of food bothers the patient, use the kitchen vent fan to reduce smells. Cover or remove foods with strong or unpleasant smells. You can also serve foods cold or at room temperature, which lessens their smell.

* Create pleasant settings for meals, and eat with the patient.

* Offer fruit smoothies, milk shakes, or liquid meals when the patient doesn't want to eat.

* Try plastic forks and knives instead of metal if the patient is bothered by bitter or metallic tastes.

* Don't blame yourself when the patient refuses food or cannot eat.

* If the patient cannot eat, offer to give him or her a back or foot massage, read aloud, or sit with him or her.

CALL THE DOCTOR if the patient has any of these symptoms:

• Nausea and inability to eat for a day or more

• Weight loss of five pounds or more

• Pain when he or she eats

• No urination for an entire day or no bowel movements for two days or more

• Infrequent urination or urine that comes out in small amounts, is strong-smelling, or is dark in color

• Vomiting for more than twenty-four hours

• Inability to drink or keep down liquids

• Pain that is not controlled


Blood Counts

The term "blood counts" refers to three important parts of your blood: hemoglobin, white blood cells, and platelets. Some cancer treatments can affect these parts of your blood. Your doctor or nurse will monitor your blood counts when you are going through cancer treatment.

The hemoglobin count indicates the ability of the red blood cells to carry oxygen. A normal hemoglobin range is about 14.5 to 18 for men and 12 to 16 for women. Most people still feel well with a hemoglobin level as low as 10. A low hemoglobin level is called anemia.

The white blood cell count measures your body's ability to fight infection. A normal white blood cell count ranges from about 5,000 to 10,000. A low white blood cell count may mean that you are at higher risk of infection. You will want to watch for signs of infection so that you can go to your doctor for treatment right away. A high white blood cell count may be a sign of infection, or it may be due to certain types of disease.

The platelet count looks at the cells that help your blood to clot. A normal platelet count is about 150,000 to 450,000. Normal clotting is still possible with a platelet count of 100,000. Dangerous bleeding may occur when the platelet count goes below 20,000.

It may take a few weeks after cancer treatment for your blood counts to get back to normal. If you see any other doctors or dentists during this time, be sure they know your counts are low. Some very common treatments may cause problems for you. Call the American Cancer Society at 800-ACS-2345 and ask for a copy of Understanding Your Lab Results if you would like to know more about what your laboratory results mean. The following sections give more information about low blood counts and what you can do to deal with them.

Low Hemoglobin

A person with low hemoglobin may have new or worsening tiredness that makes it harder to do regular activities. Watch for chest pain or shortness of breath, dizziness, or weakness. Other signs of low hemoglobin include pale skin, nail beds, or gums; vomiting dark brown or bright red material; or bright red, dark red, or black stools (indicating blood in the stool).


* Balance rest and activities.

* Tell the doctor if you're not able to get around as well as usual.

* Plan your important activities for times when you have the most energy.

* Eat a balanced diet that includes protein (meat, eggs, cheese, and legumes such as peas and beans), and drink eight to ten glasses of water a day, unless your care team gives you other instructions.


* Help schedule friends and family members to prepare meals, clean the house, do yard work, or run errands.

* Watch for signs of confusion, faintness, or dizziness.

CALL THE DOCTOR if the patient has any of these symptoms:

• Chest pains

• Shortness of breath when resting

• Dizziness or faintness

• Blood in his or her stool

• Confusion or inability to concentrate

• Inability to get out of bed for more than twenty-four hours

Low White Blood Cell Count

A lowered white blood cell count can increase a patient's chance of infection. If the patient has a low number of white blood cells, it is important to watch for signs of infection so that any problems can be treated promptly.

Signs of infection can include a fever of 100.5°F or higher, for temperature taken by mouth; shaking chills (which may be followed by sweating); burning or pain when urinating; sore throat; or sores or white patches in the mouth. Watch also for any new area of redness or swelling, new cough or shortness of breath, or new abdominal pain. Pus or yellowish discharge from an injury or other site is also a sign of infection.


* Check your temperature by mouth or under the arm if you can't keep a thermometer in your mouth.

* If you have fever, take acetaminophen (Tylenol) after calling your doctor. Keep warm.

* Take antibiotics or other medicine as prescribed.

* Drink two to three quarts of liquid each day, if your doctor approves. However, do not force yourself to drink more than you can tolerate.

* Avoid activities that can cause cuts in the skin. If you should get a cut or scrape, wash the injury with soap and water every day, apply antibiotic ointment, and keep it covered until it is healed.

* Keep your body clean by bathing daily and washing your hands after using the bathroom.

* Avoid crowds and don't visit with people who have infections, coughs, or fevers.

* Talk with your doctor or nurse about eating raw fruits and vegetables. Some suggest eating only cooked fruits and vegetables until the white blood cell counts come up again. If you eat raw foods, wash them carefully and peel them to avoid germs.

* Keep your mouth clean by brushing your teeth twice daily and flossing once daily (unless you were told not to floss).

* Use a stool softener to avoid constipation and straining to have a bowel movement. Do not use enemas or suppositories of any kind. If you are constipated, check with your doctor before using laxatives. (See the section on constipation on page 26.)


* Watch for shaking chills. If they occur, check the patient's temperature by mouth or under the arm after the shaking stops. Do not take a rectal temperature.

* Request that visitors who have fevers or any contagious illnesses visit the patient only by phone until they are well.

* Offer the patient extra fluids.

* Help the patient take his or her medicines on schedule.

CALL THE DOCTOR if the patient has any of these symptoms:

• Fever of 100.5°F or higher, for temperature taken by mouth

• Shaking chills

• Feeling or seeming "different" to others

• Inability to take fluids

Low Platelet Count

Platelets help your blood to clot, so a low platelet count can result in bleeding. Watch for bleeding from anywhere (such as the mouth, nose, or rectum); new bruises; a red rash that looks like pinpoint dots (usually starting on the feet and legs); or headaches, dizziness, or blurred vision. Other signs to look for include weakness that gets worse; joint or muscle pain; vomiting blood or dark material that looks like coffee grounds; bright red, dark red, or black stools (indicating blood in the stool); and increased vaginal bleeding during monthly periods.


* Use only an electric razor (not a blade) for shaving.

* Avoid contact sports (such as wrestling, boxing, or football) and any other activities that might result in injury.

* Protect your skin from cuts, scrapes, and sharp objects.

* Use a soft toothbrush, and talk to your doctor or nurse about whether you should put off flossing your teeth until platelet counts improve. For mouth bleeding, rinse your mouth with cold water.

* Do not blow your nose or cough with great force.

* Stay upright; keep your head level with or above your heart.

* Avoid placing anything in the rectum, including suppositories or thermometers.

* Stay away from anti-inflammatory pain medicines, such as naproxen or ibuprofen, or aspirin-containing medicines unless you first clear it with your doctor.

* If bleeding starts, stay calm. Sit or lie down and call for help.


* For nosebleeds, have the patient sit up with the head tilted forward to keep blood from dripping down the back of the throat. Put ice on the patient's nose and pinch the nostrils shut for five minutes before releasing them. Ice on the back of the neck may also help.

* For bleeding from other areas, press on the bleeding area with a clean, dry washcloth until the bleeding stops.

CALL THE DOCTOR if the patient has any of the symptoms above, or if he or she has trouble moving or speaking.


Blood in Stool

Blood in the stool may occur as a result of irritation of the bowel during a bowel movement. It can also be caused by straining very hard, an ulcer or a tumor in the bowel, hemorrhoids (enlarged blood vessels in or around the anus), a pressure sore or ulcer in the anal area, or a low platelet count. The patient might notice blood on his or her underwear or sheets or blood on toilet paper.


* Avoid placing anything in your rectum, including suppositories or thermometers.

* Keep your stool soft by taking in plenty of fluids and fiber. Use stool softeners, and avoid enemas or laxatives.

* Wash your anal area very carefully with warm, soapy water, rinse well, and pat dry.

* A sitz bath (sitting in warm water) may be helpful for hemorrhoids.

* If you are seeing signs of blood in your stool, monitor the amount and frequency of blood being passed.


* Help the patient watch for bleeding.

* Offer the patient extra fluids, fruits, and vegetables to keep stools soft.

CALL THE DOCTOR if the patient sees blood on the toilet paper two or more times, or if he or she has streaks of blood in the stool, bright red blood from the rectum, or dark red or black bowel movements. (Note: Eating beets can cause red stools, and iron tablets or bismuth medicines such as Pepto-Bismol and Kaopectate can temporarily cause black stools. This is normal.)


Excerpted from Cancer Caregiving A to Z by American Cancer Society. Copyright © 2008 American Cancer Society. Excerpted by permission of American Cancer Society / Health Promotions.
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
Excerpts are provided by Dial-A-Book Inc. solely for the personal use of visitors to this web site.

Meet the Author

The American Cancer Society is an organization committed to fighting cancer through balanced programs of research, education, patient service, advocacy, and rehabilitation. Its goals emphasize prevention, early detection, and screening; comprehensive treatment information; answers to questions about insurance, money, and planning for the future; and strategies for coping with the physical symptoms and emotional effects of cancer. They are based in Atlanta.

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