Buddy Info Pack

jana — Tue, 28 Jul 2009 08:23:03 +0000

1. Covering letter:

“The most important support I needed after my diagnosis was to simply talk to others who understood.” – Carl Liebenberg, co-founder and director of PLWC

Hello,

If you are reading this letter, you or a member of your family has just been diagnosed with cancer. A frightening experience and something that we at PLWC all understand – because we’ve been through it too.

PLWC was started in 2002 as a non profit organization and we aim to provide psycho social support to all South Africans who has been diagnosed with and who is living with cancer. Broadly, we aim to assist patients and their families deal with the following:

Diagnosis;
Treatment;
Emotional issues;
Legal, and advocacy issues
Living with, and beyond the treatment of cancer.

A large component of the support programme revolves around the use of “cancer buddy’s” who are volunteer cancer survivors. These survivors have previously been diagnosed with cancer and would like to support newly diagnosed patients. Using their experience in successfully coping with the disease, they have been trained in how to assist newly diagnosed patients and their families ; who are going through the crises of just hearing that you have cancer and the starting of treatment .

By linking you to a “cancer buddy “ with a similar diagnosis and more or less someone that had similar treatment to what you will be having (if possible even more or less your same age ) we hope to assist you and your family with information and support that will help you get started on your treatment differently

If this information is just handed to you by a hospital staff members please do not hesitate to call us in order to find a buddy who has had the same diagnosis as you.

In addition to having access to a buddy, we have enclosed some basic information for you and your family to read through to help you deal with varying aspects of the diagnosis. Visit our website for more information on support groups available and other PLWC activities.

We wish you and your family all the very best in learning to cope with your diagnosis and assure you of our support.

The PLWC team

2. Buddy Pack Contents

What is Cancer
Radiotherapy – General Information
External Radiation Therapy
Emotional Impact of Cancer on Patients and Families
Chemotherapy Side Effects and Complementary Therapies
Nutrition During and After Cancer Treatment
Possible Questions to Ask Your Oncologist
Home Nursing Services in Cape Town Southern Suburbs
Resources for Cancer Patients and Their Families
Reading List of Some Locally Available Books About Cancer
Cancer Related Internet Addresses

1. What is Cancer?

When a patient is diagnosed with cancer, it is usually a turning point in his / her life. Few forget the initial shock and disbelief after the diagnosis, as well as the fear and the feeling of helplessness that is experienced. In between all these emotions there is usually further tests that must be done and an urgency to start treatment – patients may be forced to make important decisions in spite of feeling unsure and confused. The aim of this information brochure is to provide more clarity on what may happen to a patient when he / she is referred to an oncology unit after a cancer diagnosis. Through knowledge comes empowerment for the patient and his/ her carers in their battle against cancer.

A cancer cell is formed when there is a change in the genetic material (control centre) of a cell; the total definition of the cell is changed in this way. The cell starts to grow in an uncontrolled fashion, irrespective of the body’s needs. The cells are abnormal in their appearance and function, faults in their structure are however not recognised and the dysfunctional cells continue to divide. Tissue planes do not bind cancer cells; it can invade and destroy surrounding tissues, it can also break away from the main growth and enter the bloodstream or lymphatic system.

What causes the transformation from “healthy tissue” to “cancer tissue”?

Various risk factors for the development of cancer exist, the transformation process is however often multifactor and in most cases still largely unknown. Factors that may play a role include:

· Genetic factors (e.g. in breast cancer)

· Physical factors (e.g. sunlight)

· Chemical factors (e.g. smoking)

· Viruses (e.g. HIV)

· Hormones (e.g. testosterone in prostate cancer)

· Immune status (the immune system must distinguish the body’s own tissues from foreign structures and must also be able to destroy the latter. The precise role of immunity in cancer is not clear yet; because cancer growths consist of abnormal cells the immune system should theoretically be able to recognise such growths as foreign and destroy it.)

What are the consequences of a group of abnormal cells dividing without control?

· It can press on or infiltrate surrounding tissues.

· It can gain access to the lymph- or blood system to give origin to sites of spread in other parts of the body (metastases).

· It can infiltrate spaces surrounding an organ and spread throughout such a space.

· Cancer cells can produce chemical substances that may cause symptoms and signs in other parts of the body in an indirect way (paraneoplasms).

Different types of cancer exist; it is important to remember that cancer is but a collective term for more than 200 different diseases sharing certain qualities. A specific cancer’s name is derived from the tissue of its origin:

· Carcinoma (epithelium or outlining cells)

· Sarcoma (connective tissue, muscle and bone)

· Glioma (nerve tissue)

· Lymphoma, leukemia, myeloma (blood system)

· Melanoma (melanocytes)

In an oncology center the management of a patient is aimed at confirming the diagnosis of a specific cancer type and establishing the stage of development thereof. This enables the treating doctor to decide on the best treatment plan for the individual patient in order for definite treatment to start as soon as possible.

2. Radiotherapy – General Information

What is radiotherapy?

Radiotherapy (also known as radiation or x-ray therapy) is the treatment of cancer through the use of high-energy x-ray beams. These rays can penetrate tissue, in doing so they deposit their energy to the cells in the treatment area and cause cell damage and cell death resulting in reducing the cancer growth.

Normal cells are also influenced by radiation. In contrast to cancer cells, most of them recover from the effect of radiation. Normal tissue however still needs to be protected from radiation as far as possible; the total amount of radiation is thus limited to the dosage normal tissue can tolerate, the radiation treatment is also given over a varying period of time. Every patient’s treatment is planned individually with the use of highly sophisticated 3-D computer technology. Normal tissue is protected from radiation beams when possible through the use of specialized alloy or lead blocks.

Aims and benefits associated with radiotherapy.

The aim of radiotherapy is to kill cancer cells with as little risk as possible to normal cells. Radiotherapy can be used in the treatment of different kinds of cancer in nearly any part of the body.

Radiation, like surgery, is a local treatment. It thus influences only the tissue in the specific area of the body that is being radiated.

Radiation is often used in combination with surgery to treat cancer. Radiation can be given before surgery to shrink a cancer mass, this may enable them to remove all cancer tissue by using less extensive surgical methods. Radiotherapy can also be given after definite surgery to reduce the chances of regrowth of any remaining cancer cells.

In some cases radiation is used in combination with chemotherapy. The radiation can be given before, during or after chemotherapy. Combination therapy is tailored carefully to suit each individual patient’s needs according to the type of cancer, the location thereof and the disease stage.

Where cure isn’t a realistic option anymore, radiation is often used to shrink cancer masses and in doing so to relief pressure, pain and other symptoms associated with uncontrolled cancer growth. This treatment is known as palliation (symptom relief). Most cancer patients find that they can lead a better quality of life after radiation for problematic symptoms.

How is radiotherapy administered?

Radiation can be given in one of two ways: external or internal radiation. The treatment you will receive depends on the type and stage of the disease as well as the location thereof.

Most people who receive radiation therapy for cancer have external beam radiation. The beams are generated in a machine called a linear accelerator. The machine directs the high energy x-rays at the cancer, treating that and a small margin of normal tissue around the edge of the treatment field.

When internal radiation therapy is used, the radiation source is placed inside the body. This method of radiation is termed brachytherapy.

Some patients have both forms of radiation, one after the other. Others receive one or the other.

What does treatment planning mean?

Before starting with the actual radiotherapy treatment, the precise location of the area to be radiated must be determined. It is further necessary to ensure that you will be positioned in the same manner every day when receiving treatment. Your radiation will be planned specifically for you as an individual in order to deliver the maximum amount of radiation to the cancer mass while limiting the dose to the surrounding normal tissues to the minimum.

You will be asked to lie very still on a treatment couch while a radiotherapist will use a special x-ray machine, the simulator, to define your treatment field. Depending on the location of your cancer, single or multiple treatment fields may be necessary. The planning process may also involve a CT scan of the effected area in order to plan radiation fields more accurately by taking different tissue densities into account. After completion of the CT scan it may take another day or two to develop a final treatment plan, a process during which different radiation combinations and options are considered in order to determine the best possible treatment plan for every individual patient.

Masks or other immobilization devices may be used to prevent any movement during treatment. Again these devices are individualized for the needs of each patient, and they will also be used every time when treatment is delivered to ensure correct treatment setup.

Small tattoos in the form of pinpointed dots will be placed on your skin to define the treatment area. This is to ensure that treatment is delivered to exactly the same area every day; the tattoos also enable one to determine areas where radiation has been delivered previously, even years after definite treatment. Non-permanent pen marks will also be used to ease daily setup and treatment field determination.

Before your first treatment a set of special x-rays will be taken. This is to again confirm that the radiation will be delivered to the correct area; it also serves as a record of your treatment. These x-rays are often repeated during your course of radiotherapy to verify the correctness thereof.

How long does treatment last?

Most cancers are treated with radiotherapy for 5 days per week over a 6 to 7 week period. (When radiation is given for symptom control only, shorter treatment periods are used, which could be from a few days up to 3 weeks.) Every treatment lasts 10 tot 20 minutes, the actual radiation therapy takes only a few minutes per day, while setting you up in the correct position, and adjustments between various radiation fields make up for the remainder of the time.

The use of smaller daily doses of radiation given over a longer period of time instead of a few large doses over a shorter time period helps to protect normal tissue in the treatment area. Rest periods over weekends also help normal cells to recover from the radiotherapy. Treatments are therefore scheduled for every day except on a Saturday and Sunday. This fits in with a normal working week that also leaves time for tissue repair.

What happens during radiation treatments?

Wearing clothes that are easy to take off and put on is advisable.

The radiotherapist will use the marks on your skin to position you correctly and to determine the treatment field. You will be asked to lie very still on the treatment couch; although you will be alone in the room during the treatment, continuous monitoring through a closed circuit camera system will be done. External beam radiation is painless, and is comparable to x-rays taken for diagnostic purposes. You will not see or smell the radiation. You may hear a sound whilst the radiation beam is running, this is normal. The radiation will not make you radioactive. After starting treatment, your doctor will see you at least once a week to monitor your treatment progress as well as your reactions to treatment.

You need to remain very still during the treatment so that the radiation reaches only the area where it’s needed and the same area is treated each time.

You don’t have to hold you breath – just breathe normally. The radiation machine is controlled from the control area nearby. You will be watched on a television screen from the control room. There is also an intercom system. If you should feel ill or very uncomfortable during the treatment, tell your therapist at once. The machine can be stopped at any time and treatment restarted without any bad effects on the treatment.

What are the side effects of treatment?

Most side effects of radiation therapy are related to the area that is being treated. The side effects of radiation therapy, although unpleasant, are usually not serious and can be controlled with medication or diet. They usually go away within a few weeks after treatment end.

Depending on the area being treated, you may need to have routine blood tests to check different levels as radiation treatment can cause decreases in the levels of different blood cells.

What can I do to take care of myself during therapy?

Each patient’s body responds to radiation therapy in its own way.

Some general guidelines:

Before starting treatment, be sure your doctor knows about any medicines you are taking and if you have any allergies.
Fatigue is common during radiation therapy. Your body will use a lot of extra energy over the course of your treatment, and you may feel very tired. Be sure to get plenty of rest and sleep as often as you feel the need. It’s common for fatigue to last for 4 to 6 weeks after your treatment has been completed.
Good nutrition is very important. Try to eat a balanced diet that will prevent weight loss.
Check with you doctor before taking vitamin supplements or herbal preparations during treatment.
Avoid wearing tight clothes over the treatment area.
Be extra kind to your skin in the treatment area:

– Wear loose, soft cotton clothing over the treated area.

– Do not scratch, rub, or scrub treated skin.

– Do not use adhesive tape on treated skin. If bandaging is necessary, use paper tape and apply it outside of the treatment area.

– Use only lukewarm water for bathing the area.

– Use an electric shaver if you must shave the treated area. Do not use a pre-shave lotion or hair removal products on the treated area.

– Protect the treatment area from the sun. Do not apply sunscreens; cover treated skin (with light clothing) before going outside.

– Ask your doctor about washing the affected area

3. External Radiation Therapy

External radiation therapy does not cause your body to become radioactive. There is no need to avoid being with other people because you are undergoing treatment. Even hugging, kissing, or having sexual relations with others pose no risk of radiation exposure.

4. Emotional Impact of Cancer on Patients and Families

The diagnosis of cancer is a life-changing event for the person touched by the illness as well as the special people surrounding the person living with cancer. Cancer impacts on all aspects of life namely the physical, emotional, spiritual, social and financial aspects of the whole family.

Each person living with the illness and his or her family members will have unique experiences as their reactions and needs differ. It is of the utmost importance that the distress associated with cancer by all parties concerned should be identified and dealt with effectively. Research has shown that patients that seek support individually or within groups have a greater chance of going into remission and also show better coping abilities.

It is impossible to make an informed decision with a lack of information to assist you. Consider the reading list provided as well as the list of Internet addresses given for your convenience. Please also think of inquiring about joining one of the Hoping is Coping courses presented country wide and any other appropriate support groups.

As you live with cancer, you will experience many emotional ups and downs. These feelings will involve fluctuating between times of hope and despair. This emotional roller coaster can leave you, your family and friends with uncertainty about how to deal with all the issues that you have to face. Adjusting to all these emotions requires you to come to terms with all the changes that take place in the course of learning to live with a disease like cancer. Dealing with all these emotions associated with the diagnosis of cancer is important, as this is the first step in learning to live with your illness. Remember emotions are not wrong or right; they are true to you and need to be expressed in a constructive manner. Learn to use them as a means to a much greater end.

The following destructive attitudes should be avoided as much as possible as they will not assist you in coming to terms with your cancer experience. The challenge is to address these issues in a therapeutic relationship with a counselor or oncology social worker to assist you in changing these negatives by means of talking it through and acknowledging the fact that these feelings are real :

Bitterness
Guilt
Despair
Pride
Shutting yourself away
Blaming others
Anger
Being a martyr
Cursing God

Work on developing more constructive attitudes that will aid your adjustment to the process of learning to live with your cancer. Work on developing your

Acceptance of what is happening
Faith in future
Ability to make the most of everything
Willingness to work towards small goals
Willingness to accept help
Spirituality

Control versus no control issues need to be dealt with as a priority as being out of control will mean:

Letting other people decide for you.
Abdicating responsibilities for treatment decisions.
Being alienated by your body and ignoring its special needs during treatment and rehabilitation.

These reactions will make you feel as if you have no choices and will enhance fear and anxiety, isolating you from much needed support systems.

Work on taking more control by means of:

Being free to ask questions (make a list of questions and ask your oncologist or any of the other team members that you encounter in your treatment unit)
Being able to participate in making treatment decisions by getting information and asking questions
Being able to set goals on all levels of your life
Learning to embark on the journey with cancer (keep a journal and consider going for counseling. This might mean dealing with unresolved issues from the past)
Learning new skills like relaxation and visualization.

Focusing on body, mind and spirit issues that will ensure that you are accepting of your emotions and that you learn how to express your emotions in appropriate ways that would contribute to your own healing process.

Factors that affect the adjustment to a diagnosis with cancer are:

(A) Interpersonal Issues

1. Emotional Aspects:

You need to be aware of the fact that you will experience many different emotions like:

Shock and disbelief

Hearing you have cancer can be paralyzing, because cancer has a reputation for shocking and disrupting the lives of the people touched by it. Many people consider it a deadly, spreading and fatal disease . Disbelief is an understandable reaction to the diagnosis. Thoughts like ;“Cancer is a disease that will strike someone else, not me!” are very normal

Surprisingly, disbelief can actually serve a useful purpose, since it provides a calming, numbing effect that softens the harsh news . It acts like a local anesthetic when you need it most. While insulated from the reality of the diagnosis, the person with cancer has an opportunity to begin adjusting to a major life change. It is however very important not to stay stuck in this emotion.

Anger

“How dare this happen? I won’t allow it! It isn’t fair! Why now? I don’t deserve it.”

All these reactions are examples of expressed anger. Anger at the cancer. Anger at God for letting it happen. Anger at friends and loved ones who are still healthy reminders of the way life used to be.

Anger is a mask to cover other feelings that are more difficult to express. To admit you’re hurting or afraid means acknowledging that you are vulnerable. Expressing anger is easier than admitting helplessness. Anger also sometimes disguises feelings of panic. By denying the disease or lashing out in anger, people with cancer can buy some time to let the debilitating panic they are feeling subside.

Many people believe that if their cancer had been diagnosed earlier with the first symptoms, their chances of survival could have been greater. It is wise to remember that the diagnosis of cancer is often difficult and not easy to ensure early detection. When the diagnosis is finally confirmed, this anger at the medical fraternity is normal and is the result of built-up frustration. Although anger is generally considered a self-defeating emotion, when dealing with cancer, some anger can be viewed as healthy. It indicates a person’s active involvement in life.

Sadness and Depression

Depression has been defined as anger turned inward. If anger cannot be openly expressed, or once denial is finally replaced with reality, depression commonly occurs. For people with cancer depression is usually the result of feeling helpless. One day you are strong and vital and in control of your life. The next day you find out you have cancer. The control is lost. People begin to feel that the cancer, the medical team and their family members are controlling their lives. When people see their health fading and they no longer feel in control of their own destiny, they begin to question their self-worth. Almost overnight, this active, productive family member may feel like a dependent invalid. In this situation, in order to cope it is important to: take control in of your treatment process by becoming involved, asking questions, seeking emotional support, and deciding on the way in which you would like to face your journey with this illness. These steps will assist you in becoming a active member of your own treatment team

Dependence:

Feeling really dependant on the medical practitioners and other professionals that form part of your treatment team is normal. Be careful not to abdicate your own control/power over your life and situation. Learn to stand up for your needs and plan to set goals and targets. Your loved ones can also experience dependence and this may add to your emotional concerns. Reach out for assistance and support if you feel you are not coping.

Disruption

The cancer experience requires adjustment to many disruptions:

Disruption of your future perspective
Disruption of your daily routine
Disruption of your peace of mind
Disruption of your family’s peace of mind and daily routines

I am sure there are many other issues that you could add to this list. Acknowledge these disruptions and learn to deal with them as creatively as possible.

Fears

Fears are part and parcel of the cancer experience as you move through the different phases of the illness from diagnosis, special investigations ,start of treatment, ending of treatment. The following issues should also be considered.

Disability:

Fears and uncertainty about what lies ahead in facing the diagnosis and treatment of the cancer are part of your quest in coming to terms with your cancer experience. Questions about what your life expectancy entails, how the illness is going to influence your career and uncertainty about your ability to deal with your responsibilities, as wife/husband/parent/employer/employee/sibling/daughter/ext. are real and take a lot of emotional energy. Be aware of these thoughts and feelings and discuss their impact on you with a neutral person that understands your situation.

Disfigurement

Facing the reality of disfiguring procedures after surgery (like dealing with the realities of a mastectomy, stoma bag, loss of hair, amputation or whatever physical changes your illness requires you to face.) These realities are hard to face and require time and effort in coming to terms with.

Death

The diagnosis with cancer destroys our illusion that we might live forever and forces you to come to terms with the reality that you will die some day. This realisation is harsh and very difficult to come to terms with, but the challenge is to learn to live fully and joyfully until you die, not die while you are living.

2. Information need

You will need knowledge and information about the physical process of the illness and the different treatment options you may be required to consider. Seek information before agreeing to any treatment.

You need to learn about your treatment in order to develop coping strategies for your different treatment options. This will assist you in managing the side effects and physical aspects of the disease and treatment. It’s crucial if you want to learn to cope with your illness. Detailed information on different aspects associated with a cancer diagnoses is available on the internet; please also think of inquiring about joining one of the Hoping is Coping courses presented country wide or any other appropriate support groups.

Learning to take things slowly will assist you to focus on the future and on the quality of life after a diagnosis with cancer. Knowledge about resources will assist you in developing a holistic approach to your treatment options. Focus on body, mind and spirit by exploring medical, psychological and complementary approaches for the treatment of your cancer.

(B) Family aspects:

Individuals who are diagnosed as having cancer are not alone in this experience; they are always a part of some type of a family unit or relationship system. The cancer experience effects the whole family / system and causes disruption and turmoil in many ways as family members roles may change as they move through the experience with cancer .It is important to talk about these changes in roles and expectations to ensure open and effective communication though the cancer experience. The fact that you loved one is diagnosed with cancer disrupts the family in a real way and adjustments have to be made to ease the emotional distress of all concerned. It is important to remember that the issues of importance will differ for all families depending on the life stage of the family and the children. Families with young children will have other issues and needs than a family with adolescents or a retired couple would have a whole set of different needs to deal with. It is however important to seek professional assistance in addressing these family issues as they can become very difficult and sensitive issues .

Remember that the problems existing in a family prior to the cancer being diagnosed can be made worse by the added pressure of the illness. Marital problems are often made more unbearable because of the impact on the family and may prove to be devastating. I would like to encourage you to seek professional assistance when you are experiencing these kinds of problems as it is important to lessen the emotional pressure on you while going through the cancer crisis.

There are many uncertainties and concerns about the illness and the treatment process, these issues make it very difficult to continue living your life normally. Allow yourself as well as your family time to adjust.

Family members are often “out of step” with your needs and experience because of the illness and are often not sure how to handle the person living with cancer. The treatment process may for example leave you exhausted and feeling overwhelmed. This is a well-known side effect of both radiation and chemotherapy and should be discussed with the treatment team. Other guidelines are often also needed about how the family should cope and a social worker may be able to be of assistance in this regard.

(C) Social consequences:

Dealing with all the changes in the family and social relationships are very difficult as there are often changes in family roles and functions. Open communication about your feelings and needs are very important and you need to learn to speak your mind, as this will assist every one around you to be aware of your needs and expectations.

Living with cancer in the community is also very difficult as there are still many misconceptions and stigmas attached to the word cancer. People often do not know how to behave around you.

Part of the social impact of cancer refers to the overcoming of financial obstacles, financial instability, job insecurity and problems with medical insurability. All these factors increase the burden on the person living with cancer

(D) Navigating the health care system

This has become a major factor to contend with when diagnosed with cancer and requires people living with cancer to consider the following aspects:

In the current economic environment it is often very difficult to deal with inadequate medical insurance and the red tape of acquiring authorization for treatment. All these issues add emotional pressure and can cause unnecessary concern.
Finding your way through the cumbersome state health system with limited resources and support can also be a daunting process and a true challenge.
The financial burden of comprehensive cancer care, or the inability to access such care (including rehabilitation, complementary therapies and spiritual care), can add stress to an already pressured situation.

(E) Conclusion

After considering all these factors, it is important to develop a solution-oriented approach that works towards solving problems rather than being dragged down by problems. Consider the word “COPE”:

To C O P E means

C for Creativity – in learning to see the problem differently
O for Optimism – learning to see the most positive side of the problems
P for Planning – learning to identify the steps to take to reach a solution
E for Expert - learn to seek adequate information to assist you in making informed decisions and learn to accept help.

HEALING is therefore much more than being free from cancer.

It means accepting that death is not a failure but part of the cycle of life.
Learn to create an innate gentleness towards your body, mind and spirit; take time to be quiet and to reflect on what your needs are.
Healing means living with loving-kindness and with greater harmony.
Learn to explore the illness with greater awareness and participation on all levels of your life.
Learn to live fully one day at a time making memories that are special and lasting and that inspire you to live until you die, not die while you are living!!!!

To face cancer is a great challenge. This process of learning to come to terms with this illness requires tenacity and creativity but when the challenge is faced, a special journey lies ahead that may assist you in learning to live with the diagnosis of cancer creatively.

“ Having cancer means that you’re never the same again ……………,but what is important to me is to make my life count.”
Linda Greeff, Head of Oncology Social Work Services, GVI Oncology

5. Chemotherapy Side Effects and Complementary Therapie

The following strategies can be useful in assisting you to cope with chemotherapy.

Please discuss this with the counsellors in the unit.

(i) Distraction includes television, radio, reading, movies, needlework, puzzles, building models or painting.

(ii) Hypnosis.

(iii) Imagery is a way of daydreaming that uses all your senses. Usually done with your eyes closed.

(iv) Massage Therapy involves touch and different methods of stroking and kneading the muscles of the body. A licensed massage therapist should do the therapy.

(v) Meditation and Prayer – Meditation is a relaxation technique that allows you to focus your energy and your thoughts on something very specific.

(vi) Muscle Tension and Release.

(vii) Physical Exercise.

(viii) Rhythmic Breathing.

(ix) Visualization – is similar to imagery.

(x) Yoga – All you need is a quiet, comfortable place and some time each day to practice breathing, stretching and meditation.

Most mineral and vitamin supplements also as prescribed by Homeopaths can be used in conjunction to conventional medical treatment. Please be sure to check with your Oncologist to ensure there is no potential for any cross reactions with your chemotherapy.

6. Nutrition During and After Cancer Treatment

One of the most devastating effects of cancer is a profound sense of loss of control. Behavioural research has clearly shown that those who have higher levels of self-efficacy generally feel better and function better than do those who feel they have lost control over their situation. Seeking one’s own course of treatment and disease management, as well as confidently choosing the best course of action for oneself, is extremely important for enhancing quality of life. After a diagnosis of cancer, many survivors are highly motivated to especially seek information about diet, physical activity, dietary supplement use and nutritional complementary therapies. Soon, though, they discover that it is difficult to find answers to even the simplest of questions! Cancer survivors and those who care for them thus desperately need a credible framework of accurate information. The American Cancer Society (ACS) through their Workgroup on Nutrition and Physical Activity for Cancer Survivors strives to provide such information. It should be remembered that the state of the scientific evidence regarding the effects of nutritional factors on the clinical outcomes among cancer survivors is not sufficient at this time to support a set of firm guidelines for cancer survivors. There is sufficient information, however, to serve as a basis for a framework for reasonable informed choices.

The different phases of cancer survival raise different nutritional issues. These phases include an active treatment phase; a recovery phase in which the body needs to be restored; a health maintenance phase to prevent both cancer recurrence, second primary tumours and other preventable diseases; and, for some, a phase of living with advanced cancer.

Adequate dietary intake can improve the nutritional status of nearly all cancer survivors. During all the phases of cancer survival, even for cancer survivors with no apparent nutritional problems, the principles outlined in the ACS Guidelines on Diet, Nutrition, and Cancer Prevention should be regarded as the basis for a healthy diet. These guidelines are as follows:

Choose most of the foods you eat from plant sources.
- Eat 5 0r more servings of fruits or vegetables each day.
- Eat other foods from plant sources, such as breads, cereals, grain products, rice, pasta or beans several times every day.
Limit your intake of high fat foods, particularly from animal sources.
- Choose foods low in fat.
- Limit consumption of meats, especially high fat meats.
Be physically active – achieve and maintain a healthy weight.
- Be at least moderately active for 30 minutes or more on most days of the week.
- Stay within your healthy weight range.
Limit alcoholic beverages, if you drink at all.

Individual phases also warrant individual consideration, these are discussed below.

Phase I: Cancer Treatment

Cancer treatment may interfere with the ability to eat, digest, or absorb food due to side effects such as nausea, vomiting, changes in taste or smell, loss of appetite, or bowel changes. When these problems occur, usual food choices and eating patterns may need to be temporarily adjusted. For example, small, frequent meals or snacks may be easier to tolerate than are three large daily meals. Food choices during this time should be easy to chew, swallow, digest, and absorb and should be appealing, even if they are also high in calories or fat.

During active cancer treatment, maintaining caloric balance through intake of proteins, carbohydrates and fat is the most important nutritional goal. Loss of appetite is commonly experienced during and after treatment. The list below suggests ways to perk up your appetite when it’s poor and to make the most of it when you do feel like eating.

Eat when you are hungry, even if it is not mealtime.
Eat several small meals during the day rather than three large ones.
Eat when you feel best.
Keep simple meals in the fridge for when you become hungry; also keep healthy snacks close by for nibbling when you get the urge.
If other people offer to cook for you let them. Don’t be shy about telling them what you’d like to eat.
If you are able to eat only small amounts of food, you can increase the calories per serving by:
- Adding butter or margarine.
- Mixing canned cream soups with milk rather than water.
- Drinking eggnog and milkshakes
- Adding cream sauce or melted cheese to your favourite vegetables.
- Some people find they can drink large amount of liquids even when they don’t feel like eating solid foods. If this is the case for you, try to get the most from each glassful by making drinks enriched with powdered milk, yoghurt, honey, or prepared liquid supplements.
Eat your favourite foods; if familiar foods no longer taste good, try new foods and use different methods of food preparation.

If it is not possible to meet nutritional needs through regular diet alone, nutritious snacks or drinks (Ensure, Nutren, etc) may be advisable. These products are best used as only temporary aids.

Even though cancer treatment can cause fatigue, light, regular physical activity during treatment should be encouraged to improve appetite, stimulate digestion, prevent constipation, maintain energy level and muscle mass, and provide relaxation or stress reduction.

The use of nutritional supplements is a topic of considerable controversy, especially in the cancer treatment phase. It is counterproductive for patients to take vitamin supplements that contain high levels of folic acid, or to eat fortified food products that contain high levels of folic acid when using chemotherapy agents that specifically act by interfering with folic acid metabolism. Moderate amounts of foods such as breakfast cereals that do not exceed the Recommended Daily Allowance for folic acid are unlikely to reduce efficacy of these drugs.

Many vitamin supplements contain higher levels of antioxidants, such as vitamins C and E, than the Recommended Daily Allowance while other dietary supplements may contain high levels of non-vitamin antioxidants, all combating free radicals. Since free radicals are involved in cancer development and since some studies have suggested that certain antioxidants may reduce cancer risk, it may be concluded that antioxidants are effective in preventing cancer recurrence. However, free radicals are also involved in the mechanisms of action of radiotherapy and several classes of chemotherapy agents. Taking antioxidant vitamins during chemotherapy or radiation therapy might therefore reduce the effectiveness of those therapies. Although the possible harm of supplements may only be hypothetical, this is one of the many critical questions without a good answer at this time. Therefore, it would be prudent to advise patients undergoing chemotherapy or radiotherapy not to exceed the upper intake limits of the Recommended Daily Allowance for vitamin supplements and to avoid other nutritional supplements that contain antioxidant compounds.

Phase 2: Recovery from Treatment

After treatment is completed, the nutrition and physical activity plan should help rebuild muscle strength, and correct problems such as anaemia or impaired organ functioning. During this phase, survivors need a nutritionally balanced diet sufficient in caloric intake and sufficiently varied to provide adequate micronutrients (as specified in the ACS Guidelines for Diet, Nutrition and Cancer Prevention).

Phase 3: Preventing Cancer Recurrence, Second Primary Cancers, and Nutrition-Related Disease

In general, there has been very little research on the nutritional factors that influence cancer recurrence. In the absence of such data, it seems reasonable, though, to recommend that cancer survivors follow carefully the guidelines for prevention defined by the ACS and others. In addition to the risk of recurrence of the primary cancer, survivors can be at increased risk for second primary cancers, either at the same site (e.g., contra lateral breast cancer) or at other sites (e.g., lung cancer after oral cancer). Again diet may play an important role.

Phase 4: Living With Advanced Cancer

Nutrition is an important factor in establishing and maintaining a sense of well being and quality of life in survivors with advanced cancer. In addition to adapting food choices and eating patterns to meet changing nutritional needs, effective management of symptoms and side effects, such as pain, constipation, and loss of appetite, can help promote optimal nutrition support. Various medications and physical activity can help to increase appetite, and, if needed, nutritional support can be provided in other ways for those whose intake is still not enough.

Specific Nutritional Issues for Cancer Patients

Food safety is of special concern for people with cancer, especially during episodes of bone marrow suppression. During any immunosuppressive cancer treatments, patients should be particularly careful to avoid eating foods that may contain unsafe levels of microorganisms. To make food as safe as possible, patients should follow the general guidelines for food safety namely:

Wash hands thoroughly before eating
Keep all aspects of food preparation clean and use special care in handling raw meats, fish, poultry and eggs
Cook food to proper temperatures and store foods promptly at low temperatures to minimize bacterial growth
When eating in restaurants, avoid foods that may have bacterial contamination such as salad bars, sushi, raw or undercooked meat, etc.

Avoid consumption of impure water.

Cancer and its treatment can place extra demands on the body, greatly increasing nutrient and caloric needs. Body weight changes often occur, intentional weight loss during cancer treatment is however not recommended and should only be attempted after the active treatment and recovery phases are complete. Some cancer survivors, especially breast cancer survivors, may gain weight during and after treatment. In these situations, a healthy eating plan that meets, but does not exceed, caloric needs is advisable, along with increased physical activity.

Regular physical activity is associated with reduced risk of several cancer types; the impact of physical activity on the prognoses of people with cancer is less clear. Increased levels of physical activity can however improve overall quality of life, and result in less fatigue, lower levels of anxiety, increased energy, and a renewed sense of vitality. Cancer patients and their family members should be encouraged to engage in moderate regular physical activity defined as activities that make a person breathe as hard as they would during a brisk walk. Activities such as walking, biking, and swimming are considered of moderate intensity, as well as activities such as yard work and brisk house cleaning. Ideally, at least 30 minutes of activity should be accumulated each day. Even if the disease and/or treatment results in confinement to bed rest, limited physical therapy should still be initiated to maintain strength and range of motion of joints. Some situations or conditions may limit the ability of cancer survivors to be active. For instance, some cancers can cause electrolyte imbalances and deplete the body of fluids. In these situations, adequate hydration should be ensured. Survivors with metastasis to the bone, or with bone loss due to therapy, should be careful to prevent bone fractures by avoiding activities that involve jumping or twisting the hips. Survivors with chemotherapy-induced neuropathy that affects their balance should be careful to exercise in ways that avoid the risk of falls.

Alcohol can be irritating to patients with inflammation of the mouth and oesophagus; alcohol intake should be avoided or limited among these patients and among those starting head and neck radiotherapy and/or chemotherapeutic regimens that put them at risk for mouth and throat sensitivity. Alcohol should also be avoided during chemotherapy with methotrexate and other agents that may cause liver damage. While there is substantial evidence that alcohol may increase the risk of developing several cancers, there is less evidence related to alcohol and survival from cancer. If alcohol is consumed, cancer survivors should be encouraged to limit its use to no more than one to two drinks per day. Caffeine will have no adverse impact on cancer.

The evidence that total fat intake is a cause of breast cancer is quite weak and inconsistent;the evidence for a role of dietary fat in the cause of colon and prostate cancers is stronger. Consumption of red meats and fat from animal sources may increase risk more than total fats or fats from vegetable oils. Low-fat diets have not yet been shown to be helpful in either treating cancer or preventing recurrence, this is still under investigation. While no specific recommendations regarding low-fat diets in the management of cancer can be made at this time, if individuals and their families choose to follow very low-fat regimens (about 20% of calories from fat), they should ensure that the diets are nutritionally balanced, contain essential fat-soluble vitamins (e.g., vitamins A, D, E, and K), and are adequate in calories to maintain a healthy body weight. Especially during cancer treatment, adding moderate amounts of fats and fat- containing foods can help to improve calorie intake.

Fruits and vegetables seem to be strongly associated with a lower incidence of colorectal and several other common cancers. A diet high in fruits and vegetables might therefore also be beneficial for improving cancer survival, though there are few studies that have examined this question. In the absence of clinical trials, it is reasonable for cancer survivors to adopt the general dietary recommendations to eat at least five servings of fruits and vegetables – fresh, canned, frozen, or juiced – each day.A serving size of fruit or vegetable is defined as: 1/2 cup of cooked vegetables or chopped fruit, 1/4 cup dried fruit, one piece of fresh fruit, one cup of raw green leafy vegetables, or equivalent amounts from multi-ingredient foods. Vegetables and fruits are low in fat, contribute fibre and micronutrients, and are generally more healthful than many other food choices.

Dietary supplements include nutrients, vitamins, and minerals that are essential for human health, as well as a wide variety of non-essential nutrients, such as phytochemicals, hormones, and herbs. As a general rule, dietary supplements should never replace whole foods; there is also no evidence that any nutritional supplements can reproduce the apparent benefits of a diet high in vegetables and fruits. Dietary supplements, especially those that have not been well studied, are further best used in moderate doses. It is also important to note that the belief that an herbal or botanical supplement is “natural” and therefore can be only beneficial, even in high doses, is incorrect. Many vitamins and herbal compounds are toxic at high levels. As mentioned earlier, a current area of controversy is the advisability of using nutritional supplements during cancer treatment. Folic acid and its derivatives, for example, should be avoided with methotrexate administration, as this nutritional supplement can alter the efficacy of this chemotherapeutic agent. There is also some reason to suspect that high doses of antioxidant supplements might interfere with free radical mediated cytotoxic mechanisms of radiotherapy and some chemotherapeutic agents. Despite the lack of firm evidence, it may be reasonable to use nutritional supplements after the active treatment phase for cancer survivors who cannot eat enough to obtain sufficient nutrients. A reasonable health recommendation to aid recovery after treatment would be for cancer survivors to use a balanced multiple vitamin and mineral supplement (once or twice a day) to correct possible deficiencies. Multivitamin supplements of this type are manufactured by a wide variety of companies, with levels of nutrients usually at approximately the levels recommended for daily consumption known as the Recommended Daily Allowance.

7. Possible Questions to Ask Your Oncologist

QUESTION	NOTES
Where is the cancer? What kind of cancer do/ did I have?
Has it spread? If so, where to?
How fast or slow-growing is this cancer?
What symptoms will the cancer cause?
Is there any room for doubt regarding the test results and diagnosis?
If I seek a second opinion, can I take copies of test results x-rays?
Are any other tests required? If so, what are they and what would they be looking for?
Will further tests hurt?
What symptoms are likely if the cancer progresses?
What are the treatment options?
Which treatment do you recommend, and why?
How often is the treatment necessary?
What are the benefits versus risks of treatment?
Is the treatment aimed at a cure, remission (control) or a response?
What are the likely side effects of the treatment? How can these be minimized?
How much will treatment cost?
What should I do or not do while having treatment?
How long will it be before I know if the treatment is working?
Can I receive specialist help for pain control?
Are there long-term side effects to treatment/ medication, and what are they?
Who will be in charge of treatment?
How will the treatment impact on my work, my relationships and my lifestyle?
Do members of my family have a greater risk of getting cancer?
What counselling or support services are available?
What happens after treatment?
Is there anything else I should be asking?
Is there anything I can read about this?

8. Home Nursing Services in Cape Town Southern Suburbs

Cape Care Agency 021-762 5575

Provide home help and assistants, companionship etc. Not a nursing service as such, but able to provide general care at home.

Careways Nursing Service 021-683 4113

Cover most of the Southern Suburbs. Various levels of care and services available. Large agency.

Day and Night Home Nursing Agency 021-761 2719

Various levels of nursing care for varying durations/ shifts

District Nursing Service 082 728 1909

Registered nursing sisters available to do specific procedures

Fish Hoek Home Nursing Services Trust 021-782 5961

Joining fee and monthly subscription determined by age, but nursing services are then subsidised and are considerably cheaper than other agencies. Small in-patient care facility.
Fish Hoek and surrounds only.

Homeleigh Nursing Services 021-671 3622

Different levels of care for different periods of time

Nurses in Action 021-671 0604

Different levels of care available

Nursing Atlantic Homecare 021-438 3138

Nurses for various needs in the Atlantic seaboard/ city bowl area.

Robin Trust 021-447 1565

Subsidised services requiring membership and monthly subscriptions, but including home help and nursing care, at various levels, plus small in-patient care facility. Services tend to be in central Southern Suburbs only (eg Pinelands, Rondebosch)

Simonstown Home Nursing 021-786 1242

Service limited to Simonstown area, with nurses who can visit the patient at home.

St Luke’s Hospice 021-797 5335

This service is able to offer support and backup at home for patients in many areas, when the care required is palliative. Hospice cannot provide round the clock nursing, but offers a variety of services in the community

Please note that we do not recommend any one agency above another, and cannot guarantee the quality of staff appointed by such agencies. We have worked with these agencies over time, but take no responsibility for their service levels, fees, or manner of operation!

It may also be worth noting that some churches offer home care as part of their ministry.

There are also several privately practising nursing sisters who can do home visits to assist with specific needs – eg bed baths, catheter change etc.

9. More Resources for Cancer patients and their families

Most are available at the public library, and many through local bookstores or on-line booksellers. Please let us know if you have a favorite book/website that you feel should be added to our list. :

1. 101 Easy Things to do for a Loved One with Cancer. Cynthia Sleeper, 2002, Writers Club Press. This is a book full of simple ideas that friends, family, co-workers or a loved one can use to help support the person with cancer.

2. Caregiver Therapy. Julie Kuebelbeck and Victoria O’Conner, 1995, One Caring Place. A pocketsize handbook of helpful suggestions for the caregiver to take care of her/him self.

3. Couples Confronting Cancer, Joy Fincannon and Katherine Bruss, 2003, American Cancer Society. This book discusses problems that couples face and offers hands-on tools that can help partners become closer and communicate better with each other.

4. Extended Health Care at Home, A Complete and Practical Guide. Evelyn Baulch, 1980, Celestial Arts. This is a comprehensive guide about practical areas of managing health care at home.

5. Love is a Journey: Couples Facing Cancer. Jan Latona and Gary Stricklin, 1999, Greyrock Publishing. This book presents six stages that couples often go through when faced with cancer and strategies for keeping the relationship strong and loving.

6. Surviving your Spouse’s Chronic Illness, by Chris McGonigle Ph.D., 1999, Owl Press. McGonigle’s husband was diagnosed with MS. She explores the challenging expieriences of the well spouse including issues of: denial, communication, sex. anger, money, parenting and spirituality.

7. The Caregiver Resource Directory, The Department of Pain Medicine and Palliative Care, 2000, Beth Israel University Hospital. This is a comprehensive resource directory offering practical suggestions for all caregivers. Some specific information provided for people challenged with cancer.

8. Video: Spouse to Spouse: What It’s Like When Your Partner Has Cancer. This is a seventeen minute video profiling well spouses of cancer patients from different backgrounds and at various stages of their lives. It helps couples articulate difficult feelings and encourages greater communication between partners.

Other Books that address Caregiving Issues:

9. Always on Call: When Illness Turns Families into Caregivers, Carol Levine, 2000, United Hospital Fund. This is a research based perspective of the burdens of care giving. It is useful for family members as well as health professionals.

10. Caring for a Dying Relative: A Guide for Families, Derek Doyle, 1994, Oxford Press. This book gives very thorough and practical information on caring for someone with a terminal illness, including communicating with the patient’s health providers.

11. Creative Caregiving, James Sherman, 1993, Chronimed Publishing Primarily for elderly care but does provide some good strategies for working smarter, not harder, and developing creative ways to alleviate frustrating situations.

12. God Knows Caregiving Can Pull You Apart: 12 Ways to Keep It All Together,

Rev. Gretchen` Thompson, 2002, Sorin Publishers. Rev. Thompson shares many personal stories of caregivers’ experiences. This book will reinforce for the caregiver that he/she is not alone. Also includes practical “how-to” and “where-to” information.

13. Home Care Guide for Cancer: How to Care for Family and Friends at Home,

P. S. Houts, 1996, American College of Physicians. Oftentimes friends and family are an important part of the home health care team. This book offers strategies for the primary caregiver to guide them in being as effective as possible. Also provides practical information to deal with common physiological needs of the patient.

14. I’ll Take Care of You: A Practical Guide for Family Caregivers, Joseph Llardo and Carol Rothman, 1999, New Harbinger Pub. This is a practical guide to the feelings and the personal dynamics that occur between the caregiver and patient. Includes life examples, inventories and self-quizzes.

15. Love, Honor and Value: A Family Caregiver speaks out About the Choices and Challenges of Caregiving, Suzanne Geffen Mintz, 2002, Capital Books Inc. This was written by the President of NFCA (National Family Caregiver’s Association.) Primarily addresses care of an elderly parent but offers many good suggestions for how caregivers can and need to be caring for them selves.

16 Preventing Caregiver Burnout, Dr. James Sherman, 1996, Pathways. Provides easy-to-floow procedures for preventing caregiver burnout. Valuable strategies show caregivers how to maintan their vitality when under constant emotional pressure.

17. The Fearless Caregiver, Gary Barg, 2003, Capital Books Inc. A practical, sympathetic and comprehensive guide published by the writers of Today’s Caregiver Magazine. It shows how caregivers can be informed, effective and fearless caregivers while still having time for themselves.

18. The Love Knot: Ties that Bind Cancer Partners, Robert Ross and Pamela Willsey, 2001, Jones & Bartlett Pub. This book is devoted primarily to the partner’s side of the cancer story. It discusses the anger, support, fear, pain, uncertainty, and worry of the possible loss of the person loved most.

19. The Magic of Humor in Caregiving, James Sherman, 1995, Pathway Books. The book shows how playfulness can be used to increase personal effectiveness and lighten the impact of the challenges the caregiver is facing.

20. The Radiation Sonnets, Jane Yolen, 2003, Algonquin Books. Sixty-three poems than convey the feelings that arise in times of personal crisis, and how hope, love and determination can help us through them. Jane’s husband had a brain tumor. She writes from her heart about what she witnessed.

21. Witness to Illness: Strategies for Caregiving and Coping, Karen Horowitz and Douglas Lane, 1993, Pearson Addison Wesley. This book chronicles the course of illness and the positive experience of acting as an advocate for another. This book is a “crash course” for caregivers. Many practical suggestions are offered.

Internet Support Resources:

Specific for Caregivers of People with Cancer:

www.cancercare.org

www.oncolink.upenn.edu/psychosocial/caregivers

www.stoppain.org

www.cancer.org

www.cancerhopenetwork.org

General Support for Caregivers, some more specific to caring for the elderly or family members with chronic illness, but still offers practical advice.

www.aarp.org/caregiver

www.caregiver.com

www.caregiving.org

www.careSsentials.com (this is correctly typed)

www.healthycaregiver.com

www.wellspouse.org/information

*Compiled by Emily Ecker, LMSW, Oncology Social Work Intern, Hematology/Oncology Associates,