Disaster Nursing in a Ubiquitous Society

Care Package for Cancer Patients In Times of Disaster :Series①

A Handbook for Cancer Patients Undergoing Chemotherapy

UNIVERSITY OF HYOGO Graduate School of Nursing Art and Science / Research Institute of Nursing

Care for People and Community (RINCPC) The 21st Century Center of Excellence Program ＜Cancer Nursing Care Development Project＞

Contents About this handbook ..................................................................... ........................................ 1

1. If normal treatment is unavailable due to a disaster: ............. ........................................ 2

1) Where can I receive chemotherapy at the time of a disaster? .................................................................................. ........................................ 2

2) Can I take other medicines if a disaster strikes during the chemotherapy period? ............................................................ ........................................ 2

3) How should I take care of the stoma at the time of a disaster? .................................................................................. ........................................ 3

4) What support can I obtain at the time of a disaster? ........... ........................................ 4

5) How can I alleviate my stresses at the time of a disaster? .. ........................................ 5

6) What should I do if I can’t eat at the time of a disaster due to the side effects of anticancer drugs? .................................. ........................................ 5

7) How should I care for alopecia (loss of hair)? ....................... ........................................ 7

8) What can I do to prevent infections? ..................................... ........................................ 7

9) What should I be careful about if there is a possibility of coagulopathy? ......................................................................... ........................................ 9

10) What should I do if I have pain in my mouth, gums or throat? .................................................................................... ........................................ 9

11) What should I do if I have difficulty eating due to dry mouth? .................................................................................... ........................................ 11

12) What should I do if I have diarrhea at the time of a disaster? .................................................................................. ........................................ 11

13) What should I do if I have constipation at the time of a disaster? .................................................................................. ........................................ 12

2. Talking with doctors and nurses ..............................................

........................................ 12

3. Payment for the medical treatment.......................................... (for residents who have Japanese insurance)

........................................ 13

In conclusion .................................................................................. ........................................ 14

About this handbook

This handbook guides cancer patients on chemotherapy and cancer drugs in the event of a disaster during their chemotherapy periods. It helps you prepare for chemotherapy, and helps you find out what you can do, at the time of a disaster. The handbook particularly emphasizes "self help," or the things that you can do yourself during a disaster. You can help yourself alleviate physical side effects caused by the treatment, as well as provide mental care. You will feel assured if you know that there are things that you can do yourself, to better the situation in cooperation with doctors and nurses, even in depressing times.

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1. If normal treatment is unavailable due to a disaster: 1) Where can I receive chemotherapy at the time of a disaster?

Although cancer patients in Japan used to be hospitalized for therapy in normal times, the time spent in hospitalization has been shortened nowadays to reduce medical costs and maintain the patient’s work and life. Therefore, a larger part of tests and therapeutics are now being provided on an outpatient basis. Outpatients can receive chemotherapy at lower cost than through hospitalization. Some hospitals also provide nighttime care so that patients can continue their work. Hospitalized patients can take continued care at the time of a disaster, but outpatients may not be able to go to their usual hospitals. If you experience a disaster during your chemotherapy period, you might be required to stay at a hospital for some time so that doctors can observe drug effects closely and provide required adjustments. Or you may have to visit a medical institution from the shelter.

You will feel better prepared if you consult your doctor and nurses in advance about how to visit the hospital as an outpatient during a disaster, what cares you can take, and/or what medical institution(s) nearby would be able to receive you instead.

2) Can I take other medicines if a disaster strikes during the chemotherapy period?

Some medicines may retard the effects of chemotherapy. Make up a list of all the drugs you are taking so that you can show it to a doctor when a disaster happens. The list should include information on the name of each drug, as well as the dose and frequency that you take. Make sure that the list also covers cathartics, cold medicines, painkillers, vitamins and other OTC drugs. At the time of a disaster, the doctor will determine from the list if you should stop taking any of the medicines before resuming chemotherapy. If you want to take a new drug after resuming your therapy, be sure to consult with a doctor in advance. Advance consultation with a doctor is also required when you want to stop a drug that you have been taking. Although some patients are reluctant to inform doctors of alternative medicines, fearing the doctors' objections, it is important information that should be communicated to doctors. Doctors will consider a way to continue your alternative medicines along with the chemotherapy.

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3) How should I take care of the stoma at the time of a disaster? You should know how to take care of your defecation and related appliances

at the time of a disaster. Major ostomy appliances include skin protectant to protect the skin around the stoma, and the pouch to store the excrement. Know the kinds of protectant and pouch that you are using, so that you can take care of them by yourself. • Important points to remember at the time of a disaster: ① The durability of the skin protectant varies by the stoma type, condition of

the skin around the stoma, and the stoma shape and height. Observe the dermal conditions around the stoma and the melting rate of the protectant to determine a safe number of consecutive days you can use the ostomy appliances before exchanging them.

② The exchange days would be set on, for example, every Wednesday and Saturday, every third day, or every fourth day, in between which the appliances may be safely used in continuance.

③ At a shelter, if you have itching or other unpleasant symptoms around the stoma, exchange the appliances even before your regular interval is up.

④ If anything necessary for the stoma care runs out, visit a medical institution for quick replenishment.

⑤ There are no restrictions for activities like bathing except that you should wear the appliances at public bathhouses.

⑥ As for clothing, you should take care that the clothes will not weigh down on the stoma.

⑦ Be sure to prepare a set of the appliances in the event of a disaster. It is recommended that you carry another set on you (in a bag, etc.) for immediate use in an emergency.

⑧ If you are required to stay at a shelter or similar temporary housing, inform the assigned nurse about your stoma.

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4) What support can I obtain at the time of a disaster? There are many kinds of support that you can obtain in the event of a disaster.

Some major support sources are listed below:

< Doctors and nurses > If you have any questions or concerns about your cancer treatment, try

talking to the doctors, nurses or other members of the medical care team who are assigned to the affected area.

< Friends and relatives >

Talking to your friends and relatives will also help stabilize your emotions. They can relax and comfort you in a way that only they are capable of doing. However, they need your help in supporting you. You are encouraged to take the first step to ask for their help.

Although it is natural that you may feel anxious at a shelter, support may be available if you talk about your problems to other persons there.

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< Other cancer patients and support organizations > You may be able to exchange diverse information with other cancer

patients. Patients who have received the same chemotherapy session become good friends. Support organizations also comprise many other people who may have similar experiences as yours. While cancer patients might find difficulties in sharing their feelings with others, they often feel that they also have much in common with members of support organizations. Support organizations also provide practical and valuable information to people who are forced to live with cancer. If you follow a religious faith, you may also consult a member of your religious group. It is important that you confirm in advance how to contact support organizations, other cancer patients, and/or religious representatives in the event of a disaster.

You can also visit websites that provide information on support programs for cancer patients, or other similar organizations including patient associations at hospitals.

◎ If a disaster occurs and you are forced to live at a shelter:

Nurses and doctors are continually on hand at shelters. It is recommended that you inform them of your disease before any problems occur to your body so that they can provide you with better support.

5) How can I alleviate my stresses at the time of a disaster?

There are many ways to alleviate stresses caused by the disaster and/or by the cancer and its treatment, even when you are forced to live at a shelter following a disaster. An easy way to relax yourself is to relieve your physical tensions by breathing deeply. It is also effective to talk to somebody about your feelings. 6) What should I do if I can’t eat at the time of a disaster due to the side

effects of anticancer drugs? Here are some things that you can do at a shelter:

* Drink some water one hour before and after a meal, but not at the same time.

It is recommended that you drink a small amount of water frequently.

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* Eat and drink slowly. * It is better if you eat a small amount of food at shorter intervals than eating

three large meals. * If smells bother you, eat the meals cold, or at least at room temperature. * If you don’t have any appetite, lighter foods and drinks seem to be easier to

take. * If there are any juicy fruit (e.g., melons, apples and oranges) and/or

vinegared foods available, keep them. * Chew your food well, for it helps your digestion. * After eating, sit down and relax yourself. You should keep your upper body

vertical for at least two hours after a meal, instead of lying down. * Wear loose clothing. * If you feel nauseous, breathe deeply and slowly. * Divert yourself by talking with your friends and relatives. * Do some relaxation practices. * If you feel nauseous often during chemotherapy, avoid eating for several

hours before the treatment. * Avoid sweets, fried or heavy foods. * Eat a light meal before the treatment, instead of during it. * Avoid bothersome smells, such as of foods, cigarettes and perfumes. It may

be difficult at a shelter, but try to explain your condition to the staff and ask for prioritized allotment of your space.

* Drink cold and clear drinks containing no caffeine, such as clear apple or grape juice, and non-carbonated soft drinks.

* If you vomit in the morning, eat a piece of toast or cracker before getting up.

But you should avoid doing this if you have stomatitis (inflammation of the mucous tissue of the mouth) or a sore throat due to oligosialia (abnormal deficiency of saliva).

* Eat some mints or other sour candies. But try to avoid sour candies if you have stomatitis or a sore throat.

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7) How should I care for alopecia (loss of hair)? Here are some things that you can do to care your scalp and hair at a shelter

if you experience a disaster during your chemotherapy period: * If you can’t take a shower, keep your scalp clean by wiping your head with a

wet towel steamed in a microwave. * Use a soft hairbrush. * If you can’t use an electric drier, etc., dry your head well with a towel to

remove water. * Cut your hair short in advance since a shorter cut makes your hair appear to

have a larger volume, and makes it easier to take care of the alopecia. * If you don’t have much hair, apply some sun block or wear a hat or scarf to

protect your scalp from the sun.

8) What can I do to prevent infections?

While you are undergoing chemotherapy, doctors need to take your blood

counts frequently. If your white blood cell counts are lower than normal, refer to the separate

"Handbook on Chemotherapy Side Effects in Times of Disaster —How to Deal with Infections, Bleeding and/or Anemia—".

Below are some ways you can protect yourself from infections at a shelter: * Keep your hands clean. Wash your hands very carefully especially before

meals and after going to the toilet. If you can’t wash with water, use alcoholic hand disinfectants, etc.

* After defecating, clean your anus completely but softly. If you have sores or hemorrhoids around the anus, tell this to a doctor or nurse for advice on what

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to do. When you want to administer an enema or a suppository, be sure to consult a doctor in advance.

* Keep away from people with infectious diseases (e.g., colds, flu, measles, chicken pox). If you have to stay at a crowded shelter, etc., wear a mask.

* Keep away from children who have recently undergone vaccinations against chicken pox, polio, measles, mumps, rubella, etc.

* Do not cut or tear off a hangnail on your finger. * When you use scissors, a needle or a knife, be careful not to cut or scratch

yourself with them. * Use an electric shaver instead of a razor to avoid hurting or cutting your skin. * Use a soft toothbrush to avoid hurting your gums.

* Do not scratch or squeeze your pimples. * If possible, take a warm (but not hot) bath or shower, or wipe your body with a

wet towel every day. When doing so, be careful to wipe your body softly and not to rub roughly.

* If your skin tends to dry out and chap, apply some lotion or oil to make it softer.

* If you happen to sustain a cut or scratch, clean it at once with warm water,

soap and disinfectant. * Wear protective gloves when you handle soil or excrement from a child or

pet. * You must not get a vaccination without advance approval of a doctor.

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If you have any symptoms of infection, report to a doctor immediately. Immediate reporting is particularly important when you have a low white blood cell count. Similarly, you should consult a doctor before taking aspirin, other painkillers, or any other drugs when you have a fever. 9) What should I be careful about if there is a possibility of coagulopathy?

Here are some things that you can do at a shelter to take care of

coagulopathy (a disease or condition affecting the blood's ability to coagulate):

● You are the one who can discover coagulopathy in its early stages: Be sure to report to a doctor if you have any of the following symptoms:

bruises appear without hitting that part on anything, red spots appear on your skin, your urine appears reddish (or pinkish), your stool is blackish or bloody, your gums bleed, etc. While you are undergoing chemotherapy, doctors need to take your platelet counts frequently. If the count is too low, doctors may need to give you a blood transfusion. * Aspirin, non-aspirin painkillers (e.g., acetaminophen and ibuprofen), and

other OTC drugs that are available without prescriptions influence the function of platelets. Be sure to consult a doctor before taking such medicines.

* Use a very soft toothbrush when you brush your teeth. * When you wipe your nose, use soft tissues and wipe gently. * When you use scissors, a needle, a knife or other tools, be careful not to cut

or scratch yourself with them. * When you iron or cook, be careful not to burn yourself. * Avoid doing sports that have a high risk of getting injured or getting in

physical contact with others. 10) What should I do if I have pain in my mouth, gums or throat?

Below are listed cares that you can take at a shelter to keep your mouth, gums and throat in better condition:

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* If possible, go to the dentist and get all necessary treatment before starting chemotherapy. Have all your decayed teeth, abscesses/diseases in the gums, or unfit artificial teeth treated. Also learn the best way to brush your teeth or use dental floss during the chemotherapy period. Chemotherapy may increase the risk of sustaining decayed teeth. Dentists may propose the use of mouthwash or toothpaste containing fluoride to prevent tooth decay.

* Clean your teeth and gums after each meal. Touch the teeth/gums gently with a soft toothbrush. Harder toothbrushes may damage your oral tissues. If your gums are very sensitive, consult a doctor, nurse, or dentist to select a toothbrush and toothpaste gentle enough for your gums.

* Each time you use a toothbrush, wash it well and keep it in a dry place. * Avoid using an OTC mouthwash that contains a lot of salt or alcohol. Ask a

doctor or nurse about what mouthwashes you should use.

If the pain in your mouth intensifies, be sure to tell this to a doctor or nurse. You may need a drug to treat the pain. If the pain is too intense to eat, try some of the following methods: * Ask a doctor if there is any application for your pain. You can also ask a

doctor to prescribe some medicine to ease it. * Eat food cold or at room temperature. Hot or warm meals sometimes give too

much stimulation to your sensitive mouth and throat. * Eat soft and light meals, for example: a stew of assorted steamed vegetables

and other foods, egg custard, cold tofu, Chinese paste or jelly, ice cream, milkshake, baby food, soft fruits (e.g., banana and grated apple), mashed potatoes, rice porridge, soft-boiled/scrambled eggs, cottage cheese, macaroni & cheese, custard, pudding, Japanese gelatin, etc. Although there are restrictions to foods available from relief supplies, check if any of the above is provided in vacuum packs. You can also process cooked food in a blender to make it softer and easier to eat.

* Avoid sour foods or juices, such as tomatoes and citrus fruits (e.g., oranges, grapefruits and lemons). Also avoid eating spicy or salty things, as well as rough or dried foods such as raw vegetables, rice crackers, slices of toast, etc.

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11) What should I do if I have difficulty eating due to dry mouth?

If you have difficulty eating because of dry mouth, try some of the following methods: * Ask a doctor if you should use artificial saliva to wet your mouth. * Drink water frequently. * Eat a piece of ice, ice candy, or sugarless candy. Sugarless chewing gums

may do as well. * As for dry food, wet it with butter, margarine, sauce or other juicy substance

before eating. * Soak crispy foods in some liquid before eating. * Eat strained, soft foods. * If your lips tend to dry, apply lip cream.

12) What should I do if I have diarrhea at the time of a disaster?

Here are some cares for diarrhea that you can take at a shelter: * Eat small amounts of food at shorter intervals. * Avoid foods containing a lot of dietary fiber because it could cause diarrhea

or sudden side pains. Foods with a lot of dietary fiber include: whole-grain breads or cereals, brown rice, raw vegetables, beans, nuts and kernels, popcorn, fruits (including dried fruits), etc. Try instead to eat foods with a smaller amount of dietary fiber such as white bread and rice, udon noodles, rice porridge, ripe bananas, canned or cooked fruits (except the peels), cottage cheese, yogurt, eggs, mashed or baked potatoes (except the peels), peeled and strained vegetables, chicken or fish, as well as tofu, boiled fish, a stew of assorted steamed vegetables and other foods, and grated apples.

* Avoid drinking coffee, tea, alcohol, or eating snacks, as well as anything fried, oily or spicy. These things may give stimulation and cause diarrhea or sudden side pains.

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* If you find that milk and dairy products worsen your diarrhea, avoid these things too.

* Drink a lot of water to replenish the water that you have lost from diarrhea. Ideal beverages include water, apple juice, weak teas, clear soups, ginger ale, thin miso soup, sports drinks, and other clear, mild drinks. Confirm that these beverages are at the room temperature, and drink slowly. When you drink carbonated drinks, wait until the bubbles disappear.

* If you are having severe diarrhea, be sure to let the doctor know this, and ask if you should restrict your diet to give your bowels some rest. As the condition improves, little by little add foods with small amounts of dietary fiber to your diet. You may not be able to get the required nutrition sufficiently only with clear liquid meals. Restricting your diet, then, should not be continued for more than three to five days.

* Also, you will need to take IVs to replenish any lost water and nutrition if you suffer from severe diarrhea.

13) What should I do if I have constipation at the time of a disaster?

Here are some cares for constipation that you can take at a shelter: * Drink water to improve your bowel movements. Warm or hot drinks are

particularly effective. A glass of water immediately after waking up is also believed to promote your bowel movements.

* Eat foods with a lot of dietary fiber, such as whole-grain breads, brown rice, raw or cooked vegetables, fresh or dried fruits, nuts, popcorn, etc.

* Do some light exercise. Just walking often proves effective. You don’t need to be particular about the exercise methods, but consult a doctor before increasing the amount of exercise.

2. Talking with doctors and nurses

At the time of a disaster, do not hesitate to inform medical practitioners (doctors and nurses) around you of your physical condition. Otherwise, you may be forced to suffer the same conditions as healthy people without any special

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considerations unless it is clear from your appearance that you are under cancer treatment. It is very important that you let other people know about your condition. 3. Payment for the medical treatment (for residents who have Japanese insurance) A few words about the medical insurance system in Japan:

The cost for chemotherapy varies by the type and amount of your medicines, the period and frequency of their administration, and the place where you receive the chemotherapy (i.e., at home, at a clinic, in surgery or at a hospital). Your coverage (payment) differs by what health insurance applies to you. Also confirm with the social affairs department of your hospital, or with the social welfare department of your municipality, if you can apply for public medical aid when the cost becomes larger. Even when you are in confusion at the time of a disaster, you are recommended to keep all receipts concerning your cancer treatment. There is a system to provide financial aid for large medical costs. In this system, if your monthly medical payment exceeds a certain amount, the exceeding portion will be paid back to you. The refund rates differ by your age, income, insurance type, etc. Ask for details at the municipality office for your area. Also ask about payment details at your insurance companies if you hold any cancer insurance policies.

If you experience a disaster, and need help for your medical payment, contact the social affairs department of your hospital. At the same time, call the social welfare department of your municipality, to ask if you can apply for public medical aid, and whether this aid will cover your chemotherapy expenses.

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In conclusion

We sincerely hope that this handbook will be of help to patients and their families (including those currently undergoing chemotherapy, and those planning to), in the event of a disaster. Please consult with your doctors and nurses on the information in this handbook, and make good use of it for your health management if you happen to experience a disaster during your chemotherapy period. Strong coordination between you, your family, and the medical staff will form the best team to fight the cancer.

Acknowledgments We thank the following person who cooperated in preparing this booklet. Ms.Miyuki Shigeno（Former Faculty of College of Nursing

Art & Science, Hyogo） Ms.Naoko Otsuka（Former Faculty of University of Hyogo

College of Nursing Art & Science） Ms.Sachiko Makino（Former Faculty of University of Hyogo

College of Nursing Art & Science） Ms.Tamami Kobayashi（Former Faculty of University of Hyogo

College of Nursing Art & Science）

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The 21st Century Center of Excellence program

「Disaster Nursing in a ubiquitous Society」 Care Package for Cancer Patients in Times of Disaster :Series①

A Handbook for Cancer Patients Undergoing Chemotherapy(Second edition)

Published: Mar 2007.

Publisher: Center of Disaster Nursing, University of Hyogo

13-71 Kitaoji-cho, Akashi,Hyogo, 673-8588 JAPAN

Editor: University of Hyogo, Graduate School of Nursing Art and Science

The 21st Century Center of Excellence Program

「Disaster Nursing in a ubiquitous Society」

Research Section for the Development of Nursing Care

Nursing Care Method Development Project

Cancer Nursing Care Development Project

Atsuko Uchinuno, Harue Arao, Reiko Sakashita

Yasuko Numata, Yuko Kawasaki, Megumi Narimatsu

Tel/Fax 81-78-925-9435

Web Site http://www.coe-cnas.jp

E-mail atsuko_uchinuno@cnas.u-hyogo.ac.jp

Copyright©2006 Graduate School of Nursing Art and Science and Research

Institute of Nursing Care for People and Community (RINCPC),

University of Hyogo. All Rights Reserved.