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The Colon Cancer Alliance (CCA) cannot respond to specific requests for advice concerning a particular medical case. We do, however, respond to general questions when we can.
Here you will find a series of commonly asked questions, with answers that we have provided in the hope that they may be useful to others.
DISCLAIMER: Please note that all contents of this message, including any advice, suggestions, and/or recommendations have NOT been generated as part of any professional evaluation. No patient has been examined prior to making these comments; no professional fee has been charged by or paid to the CCA. The reader is advised to discuss these comments with his/her personal physicians and to only act upon the advice of his/her personal physician. Note that in answering an electronically posted question, we are NOT creating a physician—patient relationship. Medical recommendations and advice can only be generated after a complete (in person) physical examination and review of the patient's history.
Q: How can I make sure the patient is getting the best medical care?
A: Talk to people you know and trust about where they were treated and the names of physicians that were helpful to them. See what names come up repeatedly and then call those physicians and interview them about their approach to treating people with colon cancer.
Encourage the patient to be treated at a major cancer center (link to NCI’s Cancer Centers). The few extra days it takes to get to a major center won’t make a difference, especially if it takes you to leading-edge care by surgeons and oncologists who are experienced in the latest treatments for colorectal cancer.
Get clear, detailed information on all treatment options before settling on one. Make a list of questions, and make sure the answers make sense. If they don't. ask the doctor to rephrase a statement until it's clear.
Get a second or third opinion before making a final decision. Before starting treatment, know what type of therapy will be administered, and by what method. Know what chemicals will be used, how often, and for how long. Ask what side effects can be expected.
Supplement your medical information by getting involved in a support group such as CCA, as well as support groups offered at major cancer treatment centers. Refer to organizations like the American Cancer Society and others highlighted in this website.
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Q: Why is nutrition important and how can I learn more about it?
A: Good nutrition is important for optimal body weight and good general health. Other benefits are improved tolerance to treatment, reduced side effects, enhanced immune function (which can increase the effectiveness of therapy), and improved quality of life.
Balanced nutrition is not always possible for persons receiving treatment because of side effects. Persons unable to keep food in their stomach or whose bowels cannot tolerate fibrous foods, fresh fruits, and vegetables need to be on a special, low-residue diet, such as the one outlined on the NCI website listed below.
Don’t push food or get angry when the patient can’t or won’t eat. Encourage and prepare things the patient wants to eat, but remember that what sounds good to them, may not actually taste good to them once you have prepared it. The important thing is to try to ensure that the patient doesn’t lose weight. Sometimes a patient should eat whatever they want to eat, whatever tastes good — just to get the calories in! Talk with the doctor or a nutritionist at the hospital. Find a registered dietitian, preferably one who specializes in nutrition and chronic disease. Also refer to Internet websites such as the following:
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Q: What causes malnutrition?
A: Poor eating habits, lack of appetite, effects of the illness itself, side effects of therapy, depression, and emotional stress can contribute to malnutrition. Mouth sores from chemotherapy can make eating painful, and severe diarrhea may cause dehydration and loss of nutrients through improper absorption. Malnutrition can be life threatening, which is why it's very important to consult with the doctor and a registered dietitian who specializes in nutrition for people with cancer or chronic disease.
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Q: What are some tips for ensuring good hygiene?
A: This depends on the stage of disease and the response to treatment. Helping the patient to maintain good hygiene is beneficial not only for hygienic but also for self-esteem reasons. To make good hygiene easier, make sure disposable, unscented, alcohol-free, pre-moistened cleaning pads, and soothing ointments such as Desitin, are available in the bathroom and at the bedside. Provide a basin of warm water, fresh cotton cloths, and mild soap. If the patient doesn't want help with washing, leave it there and return later to take it away. Always explain that cleanliness reduces risk of infection, which would only add irritation and discomfort. Emphasize how much their comfort means to you.
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Q: What can I do to make the patient more comfortable emotionally?
A: Mostly, be yourself. Interact with the patient in ways that you always have. Really listen to what they want to talk about and take your cues from them. Recognize that the patient’s feelings are valid, no matter what they are. Some people will be angry, some will be sad, and others will be in denial. Don’t try to tell them how they should feel. You might offer suggestions about how others have dealt with these things, but don't try to push these suggestions as the "right" way. Share your own feelings.
Hugs are comforting, and so is saying how much you care about the person. Tell the patient you want to help in whatever ways you can. Take time to really listen. Put positive self-help books within reach, as well as family photos, pictures, and materials that appeal to the patient's personal interests. Play his or her favorite music and make sure TV and films are available. Laughter is good medicine, and a light heart can lift the shadows of sadness.
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Q: What about making the patient more comfortable physically?
A: Common sense can help here, and consider what you would want for yourself. But remember that the patient may feel pain and weakness to which you cannot relate. Extra pillows and a back support are helpful, as well as a bed tray on which the person can eat or set magazines and books. Keep bedding, clothing, and surfaces clean and fresh, making sure all supplies and medications are within easy reach. Ask what you can do to make a person feel better. Listen with compassion and be creative in making the person comfortable. Play it by ear — comfort is an individual thing, so take your cues from the patient. Don't hesitate to call the doctor if you don't have an answer to a persistent problem.
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Q: I'm feeling run down and overextended. What can I do for my own well-being as a caregiver?
A: If you feel run-down, try to get the proper rest. However, sometimes that is not possible. If you cannot get the proper rest, be candid with family members and friends and ask them to help with whatever needs to be done. Delegate work that has nothing to do with the patient. For instance, have someone else clean your house, help with grocery shopping, and pick up prescriptions. Ask for favors. You can't do it all yourself for long periods of time without running yourself down. Maintain a proper diet, take supplements, eat five fruits and vegetables a day, and take time for exercise. A ten-minute walk may renew you in ways that sleep cannot. If you feel truly run down, see your doctor — it's important to take good care of yourself, or you will not be able to help anyone else. Take deliberate breaks for yourself, even if they’re short.
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Q: Chemotherapy causes so many side effects for the patient. How do I know when the symptoms the patient is having are a result of the chemo or the progression of the disease?
A: Know the specifics about the treatment regimen that the doctor has ordered. Know the name of the drug or procedure, the amount and frequency of each dose, and the known side effects. Get pamphlets provided by the pharmaceutical company that manufactures the particular drug. Some pharmaceutical companies have drug-specific sections written for patient audiences on their websites. Talk to other caregivers and patients. Don't be afraid to ask questions about particular symptoms or side effects. Discuss serious or unusual symptoms immediately with the doctor. Just because a patient's side effect is unexpected doesn't mean it's not real. Different people have different reactions to the same drug. Encourage the patient to talk with his or her doctor about possible solutions to the problem. Remember the adage about the squeaky wheel — its truth applies even to cancer care.
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Q: What can I do to encourage the patient?
A: Remember that everyone is different, and what is encouraging to one patient may not be to others. Don't be afraid to ask your loved one how you can help. Some ideas that have worked for others include: renting humorous videos; contacting relatives to visit; offering to go to the library or buy books and magazines; offering to contact support groups and other resources; sharing what you know that is positive; avoiding negative topics and problems; embracing positive options and solutions; listening when he or she wants to talk. There are hundreds of options — some will work, some won't — but keep trying.
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Q: What can I do to make myself feel better?
A: Make sure you have quiet time for reading or meditating or resting. Take advantage of a friend's offer to step in and give you a break. Eat well and make time for exercise. And don't feel guilty. It's important to protect your own physical and mental health, which can be jeopardized by the demands of caring for someone you love who is seriously ill for an extended period of time. Allow yourself to get the help that you need. This may include talking with a counselor or taking medication to help with depression. Many cancer centers provide counselors who work with a patient’s family, as well as patients. Grief counselors at organizations such as Hospice can also be helpful to family members dealing with long-term or terminal illnesses.
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Q: What do I do when I don't agree with the patient's choices?
A: Talk about why each of you feels the way you do about your decision. Make sure the desired outcome for each of you is clear. Then get professional advice about the likelihood of that outcome in light of the decision you are making. Share your points of view with at least two other people, someone close to the patient and someone close to you. Then come together, discuss it, and agree to respect the patient’s final decision. It is important for a caregiver to recognize that the patient may feel he or she has lost control over many aspects of his or her life. The decisions about what treatment and whether to continue treatment are fundamental choices about how one wants to live and are choices no one but the patient can make.
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Q: When is it okay to call the doctor?
A: It is always okay to call the doctor for help with pain and discomfort. Don't worry about the hour. If the doctor is off duty, another doctor who has access to the medical records is on call, ensuring that medical care is available 24 hours a day.
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Q: What do I do when I am ready for information that the patient is not ready to hear?
A: It is fine for you to seek out that information. However, do it in a way that respects the fact that the patient may not be ready, and keep silent until they are. Ask the patient’s physician if you can contact him or her with additional questions. Some physicians will correspond with family members via e-mail.
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Q: How do I help control the pain?
A: If your loved one needs help controlling pain, discuss the options with your doctor. Make sure all instructions are carried out as ordered. Make sure the patient is able to self-administer any medications that are to be taken at home, and if not, make sure someone is available to ensure that the correct dosages are taken. Hospice is particularly helpful in pain management and you may want to initiate a conversation with them to help you determine when to involve their services.
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Q: Whom should I approach for assistance?
A: Ask family and friends for help. Ask social workers linked to the hospital. Many religious organizations provide assistance to those in need. Contact Hospice. Call another caregiver through the Colon Cancer Alliance. Many, many people can and want to help.
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Q: When do I know it's time to call on Hospice?
A: It is terribly hard for many people to know when it is the right time to terminate aggressive treatment and move to a treatment program that concentrates on the control of symptoms that will keep the patient comfortable. The doctor may tell you when there is no more hope for recovery. Often physicians are uncomfortable initiating this discussion. If you feel that Hospice may be a viable option at some point, call them and discuss their services and how to initiate them. Then you as a caregiver will have a better sense of the appropriate time to have this discussion with the patient and the physician. Together you will map out a plan to transition care from treatment to pain management.
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Q: How do I retain hope but accept reality?
A: Hope, often a survival mechanism, does spring eternal. Hope for recovery may, at some point, be replaced by hope for relief from suffering. And most of us never give up hoping for a miracle, even to the bittersweet end.
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Q: How can I enjoy life after my loved one is gone?
A: By deciding to live life to its fullest. Everyone lives and dies. Live well in honor of your beloved. Search for deeper meaning. Enjoy family and friends. Celebrate life's simple pleasures.
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