plwc cancer buddy booklet

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The Cancer Buddy Booklet The aim of this patient guide is to assist in gaining knowledge that will empower you to be an active member of your treatment team as you start navigating your journey with cancer.

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Page 1: PLWC Cancer Buddy Booklet

The Cancer Buddy Booklet

The aim of this patient guide is to assist in gaining knowledge that will empower you to be an active member of your treatment team as you start navigating your journey with cancer.

Page 2: PLWC Cancer Buddy Booklet

Production of this book is made possible thanks to an unrestricted grant from Novartis South Africa (Pty) Ltd. Tel. (011) 929 9111

People Living With Cancer, 0861 ASK NOW (0861 275 669)[email protected], www.plwc.org.za

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Contents

Foreword 4

About People Living With Cancer 6

Patient Active Approach 8

What is Cancer? 19

Radiotherapy – General Information 21

Chemotherapy Side Effects and Complementary Therapies 26

Nutrition During and After Cancer Treatment 27

Phase I: Cancer Treatment 28

Phase 2: Recovery from Treatment 30

Phase 3: Preventing Cancer Recurrence, Second Primary Cancers, 30 and Nutrition-Related Disease

Phase 4: Living With Advanced Cancer 31

Specific Nutritional Issues for Cancer Patients 31

Emotional Impact of Cancer on Patients and Families 35

Factors that affect the adjustment to a diagnosis with cancer are: 37

Information need 40

Possible Questions to Ask Your Oncologist 44

Resources for Cancer Patients and Their Families 46

Page 4: PLWC Cancer Buddy Booklet

F ForewordFor many, September 11th conjures up images of death and grief. For me, it was a good day. I was told I had beaten cancer.

For the 6 months prior to 11 September 1998, I had taken nothing for granted. There was nothing certain about the next day. Each day was a fight for survival. Each day, my body reacted differently to the level of toxic chemicals in my blood. I was either sliding towards that point, 7 days after a “heavy” dose of chemo where I couldn’t move. Or, after getting through that low point in the cycle I was moving with a sense of dread, toward the next date in the calendar of receiving another nauseating round of the drugs. All in the hope of killing this thing growing inside me, and not knowing if it would consume me.

On September 11 there was finally real hope that the end of a dark journey was coming to a happy ending. So I started thinking about my future. Realizing there was a greater degree of certainty about what lay ahead for me, I started to reflect on the various promises I made to myself on what I would do if I got back on my feet.

There were a number of aspects of my life I wanted to change, but there was one thing in particular I wanted to do. I wanted to help others deal with the uncertainty of what lay ahead when they were diagnosed with cancer. I didn’t want someone else to have to “re-invent the wheel of learning” that I had been through. After all, I had learned so much during this period I felt it was a waste not to pass this knowledge on. In addition when I had been diagnosed with cancer I really needed to talk to someone who understood what I was going through and who could help me cope.

So in 2002, after I was well enough mentally and physically, I co founded People Living With Cancer (PLWC) with Linda Greeff, another cancer survivor. We recognized that when a person initially discovers that they have cancer, they may feel overwhelmed, vulnerable and alone. At the same time they must also learn about complex medical treatments and will need to choose the one best for them.

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PLWC was started to ensure that all people diagnosed with, and living with, cancer have access to information, peer support (“Cancer Buddies”), resources and services that will assist them in regaining their lives after being diagnosed with the disease. Through education and support the organisation intends to empower patients and their families. My dream is to make this kind of support network available to all people living with different diagnoses of cancer countrywide.

So as you read through this “Cancer Buddy” information booklet, I sincerely hope it helps you to gain a better understanding of the situation you are in and what resources you have available to you. I also hope you will make use of the Cancer Buddies around South Africa (by calling the 0861 ASK NOW telephone number) to connect you to someone who has been through what you are going through and to help you answer the many questions you may have.

All the best,Carl LiebenbergCo-founder and DirectorPeople Living With Cancer

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AAbout UsPeople Living With Cancer (PLWC) was established in 2002 by Carl Liebenberg and Linda Greeff, both of whom are cancer survivors. For the past seven years the organisation has set about developing volunteer counselling guidelines that are aligned with international protocols and this has allowed the organisation to have one of the most established volunteer psycho-social programmes in the country. PLWC is a national non-profit organisation and receives no state funding. It is registered as a Section 21 Company with registration number 2002/026507/08.

PLWC offers a free buddy support network (Cancer Buddies) where cancer patients can interact with and receive practical advice and support from cancer survivors who have a similar profile, disease and treatment protocol. The buddies are trained on how to assist patients that are currently facing treatment to deal with diagnosis, treatment, emotional issues and living with and beyond the treatment of cancer. PLWC volunteers also offer hope because they themselves have survived the disease and have regained their lives.

Patients are supplied with a “buddy information pack” which supplies patients with relevant information about cancer and support systems available.

People touched by cancer may independently contact the organisation or may be referred to us by their treating doctors or hospitals. Once contacted, PLWC assigns a buddy to the patient who has a similar profile taking into account considerations such as religion, gender, race, type of cancer etc. The volunteer will then offer their support through one on one visits; telephone and/or email support. We have an interactive website where patients can obtain information, post comments, ask questions and read the stories of other cancer survivors. Monthly or bi-monthly support meetings are held, where topics of interest are discussed. There are no charges for any of the above.

In order to deliver on its vision, PLWC created a network of support groups throughout the country and develop PLWC “buddy” support groups.

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We have established branches in:• Mpumalanga – Nelspruit

• Gauteng – North Johannesburg, Pretoria

• Eastern Cape – Port Elizabeth

• Western Cape – Cape Town, Stellenbosch/Somerset West

Should you, a friend or a family member have been diagnosed with cancer and have the need to talk to others who have been in the same position; have any questions or concerns or would like to attend one of our general support group meetings please contact us on 0861 ASK NOW (0861 275 669) or email us at [email protected] or [email protected] or visit our website www.plwc.org.za

“Survivorship begins at the moment of diagnosis and continues throughout the course of life, no matter how long or short that life may be. But there are cycles and varying terrains on the journey of survivorship.” - National Coalition for Cancer Survivorship, USA.

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AApproaching your Cancer Journey Differently - Empower Yourself and Become Patient Active Do you recognise some of these thoughts:-

• How will I manage to get through this crisis?

• Why is this happening now?

• Why me?

• How do I tell my wife/husband/children?

• I did everything right and now this! How can this be?

• What must I do?

• Should I be seeing an oncologist?

• What do all these terms mean?

• How do I know which option to choose?

• What are my survival chances?

• What will the treatment entail?

These are just a few of the thoughts racing through your head as you start your journey with your cancer. It is of the utmost importance that you develop a personal and individualised approach right from the start of your treatment. You need an individualised plan that will address your own personal needs on all levels of your life - body, mind and spirit.

In June 1982, Harold Benjamin, founder of The Wellness Community, pioneered an approach called the PATIENT ACTIVE APPROACH.

The essence of this approach is that patients are encouraged to become active members of their treatment teams thus engaging right from the start with their oncologist as part of the team, developing and deciding on all treatment decisions. Being actively involved in planning of your recovery strategies on more than one level is crucial. According to Dr Benjamin, ” People with cancer who participate in their fight for cancer will improve the quality of their life and may enhance the possibility of their recovery.“

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The objectives of this program are:

• Gain valuable information about cancer treatment and treatment side effects

• Learn patient active strategies to prevent and manage common side effects

• Develop an action plan for your personal experience.

• Improve your partnership and communication with your healthcare team.

• Be well-informed.

• Keep your treatment on schedule as much as possible.

• Integrate medicine-mind-body-spirit.

• Create a strong support system.

• Set small achievable goals in all areas of your life.

• Plan some fun filled events.

• Surround yourself with the people you choose to be part of your teams.

• Do not listen to all the stories that you are told.

• Limit people that are negative.

• Develop active partnerships with your health care team.

It is important to remember that Your Experience is Unique!

• Use your resources

• Learn from others

• Make choices that are right for you

Develop an individual, personalised action plan for yourself which embraces all the aspects that are important to you. This action plan will focus on improving your quality of life all through your journey with cancer and will address not only the physical aspects but also attend to the emotional and spiritual needs that you have.

The development of healing behaviors and a healing attitude forms the crux of this process.

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Choosing to embark on the cancer journey more actively is a choice you have to make. Making this choice is not easy as it requires you to address the challenges of this cancer journey differently.

The focus of this approach is about making small day to day decisions regarding your treatment that will assist you in staying in control of your life as much as you can as you embark on your journey with cancer.

Being PATIENT ACTIVE means taking individual steps to learn about your cancer and its treatment thus empowering you to make informed de cisions about your treatment as well as the manner in which you will be addressing your psychological, emotional, social and spiritual needs that impact on your well being and your health in general as you navigate your treatment journey.

By adopting this PATIENT ACTIVE approach you choose to deal differently with the emotional stresses that are associated with the cancer experience, namely: fear, anxiety, isolation, loss of hope and meaning.

By taking up the challenge of this journey in a PATIENT ACTIVE way you empower yourself and your family to take actions with regards to all aspects of your life thought by the cancer. This PATIENT ACTIVE approach will encourage you to embrace support from your family, other cancer survivors , peer support systems like the “CANCER BUDDY “ program and any other resources that may be needed as part of your action plan.

By empowering yourself and taking back your control and being part of all your treatment decisions and planning of your treatment plan is of great importance in determining your quality of life all through the journey with cancer. This approach encourages the “Combining the will of the patient with the skill of the physician” according to Harold Benjamin and in so doing, a very powerful team emerges to assist you in this fight against Cancer. In this booklet you will some helpful information regarding the side effects of treatment. Learn as much as you can about your treatment and the management of side effects. By empowering yourself with knowledge you will be able to ask more relevant questions and will then be more able to plan a strategy for the management of these side effects that is acceptable to you. We will like to encourage your design and development

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of your own unique Action plan that will form the basis of your strategy in becoming cancer survivor.

We would like to highlight the following most common side effects and suggest some coping strategies in this regard to get your action plan going:

Side effects like:

• Anemia and fatigue

• Hair loss

• Risks of infection

• Pain and discomfort (including skin rash)

• Nausea/vomiting

• Emotional distress

Develop a specific plan to deal with the side effects that you are experiencing most.

Managing fatigueConserve your energy by:

• Asking others to help you (delegate tasks)

• Take short naps

• Plan your activities with realistic goals

• Walk daily or develop an exercise routine

• Limit caffeine, especially in the evening

• Drink water – at least 4-5 glasses a day

• Eat a well-balanced diet

• Discuss your fatigue problem with your doctor.

Managing Hair lossDevelop a plan:

• Consult your hair stylist or visit a wig shop

• Check to see if your cancer center has a wig bank

• Consider a short haircut before hair loss begins

• Obtain hats, scarves, or turbans

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• Protect yourself from exposure to sun and cold

• Discuss your concerns with your healthcare

Remember: Not all treatments cause hair loss and not all hair loss is permanent

Chemotherapy-related Infection

• Causes: low white blood cell count (neutropenia)

• Can lead to treatment delays or dose reductions

• Decreased quality of life (missed work, family time, social connections)

• Can be a life-threatening complication

Increased Risk for Infection when:

• Chemotherapy given is known to decrease the white blood cell count

• If you already have a low white blood cell count, or have been previously treated with chemotherapy and/or radiation

• If you are 65 years and older

• If you have other conditions affecting the immune system your risk for infection will increase.

Symptoms of Infection:

• Fever and chills

• Sore throat, cough, shortness of breath, chest pain

• Urinary problems – pain, burning, or difficulty

• Dental pain, impaired chewing, mouth sores

• Red, tender, or draining wound sites

• Diarrhea

• Pain, redness, or heat around catheter sites

Take Control of the risk of infection

• Assess your risk factors (type of chemotherapy, previous treatments, etc.)

• Track your white blood cell count and temperature

• Talk with your doctor about taking a white cell growth factor to prevent low counts

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Anemia

• Anemia is when the number of oxygen carrying red blood cells falls below normal

• Symptoms include fatigue, exhaustion, shortness of breath, confusion or loss of concentration, pale skin, rapid heartbeat

• Affects tolerance & stamina

• Decreases quality of life

Take control of Anemia and Fatigue

• Track your complete blood count (CBC)

• Talk to your doctor or nurse about red cell growth factors

• Prioritize what activities are important to you (Ask for help or let go!)

• Nap, get adequate rest

Pain from Cancer or its Treatment not the rule but if you have problems in this regards address them immediately.

• There are multiple causes and types of pain

• Pain affects tolerance of treatment

• Pain affects quality of life & hope

• Pain impacts relationships

Empower yourself with knowledge re pain and do not get caught up in the myths of Cancer PainRemember:

• Not all pain is the same - Pain can take different forms and levels of intensity

• Pain does not mean advanced disease

• Addiction to pain medication is rare

• Ensure effective pain management as soon as possible

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Mild pain (pain score between 1-3)• Common pain relievers may sufficiently relieve the pain.

• You are able to perform your normal activities.

Moderate pain (pain score between 4-7)

• Prescription pain relief is necessary

• You may not be able to perform your normal activities.

Severe pain (pain score greater than 8)

• Active management with other medications or interventions in addition to prescription medications.

• You are not able to conduct normal activities.

• Talk to your doctor or nurse and possibly consult a pain specialist

• Integrate mind-body practices with medical management

• Ensure that you also attend to constipation problems associated when taking pain medication.

Remember: You do have the right to have your pain controlled!

Treatment of Skin rashes

• Keep your skin clean and dry

• Use mild soap and water

• Use water-based lotions or emollients

• Avoid hot water

• Avoid tight clothes: pants, bra, shoes

• Notify your doctor of any sign of infection or skin problem that you cannot manage with these suggestions.

Managing Nausea & Vomiting

• Avoid eating a few hours before chemotherapy

• Eat several small meals during the day

• Eat foods that are not hot or spicy

• Avoid strong food odors

• Drink cool, clear fluids; stay hydrated

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• Practice relaxation techniques

• Ask your doctor about medicines to prevent or help with nausea & vomiting

Emotional Distress

• Emotional distress is often ignored. Don’t ignore it.

• Emotional distress can include anxiety, stress, depression, mood swings, irritability, insomnia, fear, isolation, denial, loss of hope

• These have multiple causes get support and help to address these issues right from the start as these are as important as all the other physical side effects are .

Speaking to a therapist or a counselor can assist you in developing your own individualised action plan as part of your own PATIENT ACTIVE PROGRAM.

Expressing your emotions and dealing with the emotional aspects of your journey with cancer is of the utmost importance. Do not underestimate the importance of emotional aspects and plan a strategy to attend to these issues.

General Strategies for Wellness

Get Physical Active………

• Elevates mood

• Combats fatigue

• Maintains function

• Promotes rest

Choose the right Food to eat………

• Maintains energy

• Strengthens immune system

• Avoids/limits symptoms

• Builds strength

• Provides comfort

• Assists in rebuilding normal cells as part of the healing process

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Drink Plenty of Fluids…• Drink enough water

• Avoids dehydration

• Promotes regularity

• Combats fatigue

Personal Hygiene….

• Limits risk of infection

• Keeps skin healthy

• Pampers the spirit Communicating With your Health Care Team

• Write questions down before you go to the doctor; bring them with you

• Bring a friend or family member with you to appointments to assist in listening to the oncologist to help increase your understanding.

• Ask your doctor how you can work together as a team.

• Tell your doctor about any alternative or complementary medications you are using.

• Ask your doctor whether an alternative dose or treatment schedule might be appropriate for you, considering side effects.

• Ask the doctor if there are short-term side effects or side effects that can accumulate over time.

• Ask your doctor or nurse about issues related to intimacy or other emotional concerns you may have with your partner. Remember no question is not important, keep asking until you are satisfied and clear on all your treatment issues.

• Every person’s experience with side effects is unique.

• Ask about specific actions we can take to prevent or better manage side effects.

• Speak up about your specific needs.

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In ConclusionThere is nothing magical or highly complicated about the PATIENT ACTIVE APPROACH.

Building a positive attitude and action plan takes hard work and dedication it does not just happen. You have to choose this model every day on every level of your life and implement steps to make this action plan real and a working document. This model allows the person learning to live with their cancer with guidelines to a different approach in dealing with the crisis of being diagnosed with cancer. It assists the patient and the family to move away from being a victim of CANCER to becoming and an empowered patient active team member participating actively in making all treatment decisions right from the start of the treatment.

Always remember you are a cancer survivor from the moments you survive your diagnosis so be proud of that and then get working on becoming more empowered by adopting this PATIENT ACTIVE APPROACH and by implementation of your personalised action plan that forms part of this PATIENT ACTIVE APPROACH. It will not be easy but you will feel less lonely, more in control and more empowered. This approach also allows the space for experiencing a whole array of emotions and acknowledging the emotions is an important part of your healing process.

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Characteristics of the PATIENT ACTIVE APPROACH

The Patient Active Approach is an effective method to manage side effects and to navigate your cancer experience differently.This model strives to engage the patient as the driver of this initiative

• Encourages the use of mind-body techniques can help reduce stress.

• Progressive relaxation.

• Mindfulness meditation.

• Visualization.

• Any other relaxation techniques

• Keep a journal to track your emotional experience.

• Keep track of all your medical treatment in a file so that you have all your information together should you want to get a 2nd opinion at any time.

• Effective communication with your health care team is critical to side effect management.

Our wish is that you will find the courage to challenge yourself and your team to adopt this new PATIENT ACTIVE APPROACH as you start your Cancer journey. Know you are not alone and reach out to those you love and to the Cancer Buddy Support network if you need any further support and information http://www.thewellnesscommunity.org/corporate/pa-concept.phpThe Patient Active Concept

Linda GreeffDirector PLWC (Ovarian Cancer Survivor -22 years)

November 2009

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WWhat 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 mustalso 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.)

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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.

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RRadiotherapy – 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

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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

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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.

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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?

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.

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.

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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 lotof 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

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CChemotherapy Side Effects and Complementary Therapies

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.

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NNutrition 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:

1. Choose most of the foods you eat from plant sources.

• Eat 5 or 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.

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2. Limit your intake of high fat foods, particularly from animal sources.

• Choose foods low in fat

• Limit consumption of meats, especially high fat meats.

3. 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.

4. Limit alcoholic beverages, if you drink at all.

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

Phase I: Cancer TreatmentCancer 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.

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• 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 antioxi-dants, all combating free radicals. Since free radicals are involved in cancer

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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.

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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.

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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 flu-ids. 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 investiga-tion. While no specific recommendations regarding low-fat diets in the

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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. Vegeta-bles 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

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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.

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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.

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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.

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These reactions will make you feel as if you have no choices and will en-hance 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 disbeliefHearing 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

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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 youare 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

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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 canalso 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.

• FearsFears 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 diagno-sis 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.

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- DisfigurementFacing 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.

- DeathThe 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.

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(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 thetreatment 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.

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(C) Social consequences:

• Dealing with all the changes in the family and social relation-ships 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 financialobstacles, 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:

1. In the current economic environment it is often very difficult to dea with inadequate medical insurance and the red tape of acquiring authorization for treatment. All these issues add emotional pressure and can cause unnecessary concern.

2. Finding your way through the cumbersome state health system with limited resources and support can also be a daunting process and a true challenge.

3. 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.

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(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 GreeffHead Of Oncology Social Work Services GVI Oncology

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Possible Questions to Ask Your Oncologist

QUESTION NOTES

Where is the cancer? What type of cancer do I have?

Has it spread? If so, where to?

At what stage is my cancer? What does that mean?

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 my treatment options?

Which treatment do you recommend, and why?

How often is the treatment necessary?

What are the benefits versus risks of treatment?

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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?

Should I follow a special diet or make other lifestyle changes?

Do members of my family have a greater risk of getting cancer?

What counselling or support services are available?

What happens after treatment?

Can you suggest any reading material?

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Resources

National and International Cancer Related Information

For any cancer information, http://www.plwc.org.za support or advocacy contact 0861 ASK NOW (0861 275 669) the national cancer call centre Monday – Friday, 9:00am – 3:00pm

American Cancer Society http://www.cancer.org

ASCO http://www.cancer.net

Good information on all cancer types.

Campaigning for Cancer http://www.campaign4cancer.co.za

An advocacy organisation which 0861 275 669 allows South African cancer patients to voice their rights.

CANSA http://www.cansa.org.za

South African Cancer Organisation 0800 226 622

Choc Childhood Cancer Foundation SA http://www.choc.org.zaSupport to children diagnosed with 011 486 1212 cancer and their parents.

GVI Oncology http://www.cancercare.co.za

Home Nursing Services http://www.plwc.org.zaThere are nursing agencies in all the provinces. 0861 275 669 For more details contact our office on or visit our website for a list.

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Hospice Palliative Care http://www.hospicepalliativecaresa.co.zaAss of SA Provides palliative care to all cancer patients.

Lance Armstrong Foundation http://www.laf.org

Leukaemia Information http://www.gleevec.com

Look Good…Feel Better http://www.lgfb.co.za

082 344 6693

Macmillan Cancer Support http://www.cancerbackup.org.uk

National Brain Tumor Society http://www.braintumor.org

Nutrition Information Centre http://webhost.sun.ac.za/nicus

This is an initiative by the University of Stellenbosch

Oncolink http://www.oncolink.upenn.eduUniversity of Pennsylvania Cancer Centre

People Living With Cancer http://www.plwc.org.za

Quackwatch http://www.quackwatch.com

Your guide to quackery, health fraud and intelligent decisions

Reach for Recovery http://www.reach4recovery.org.za

Provides practical and emotional support to breast cancer patients and their families.

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Roche Oncology patient website http://www.becanceraware.co.za

Sunflower Fund http://www.sunflowerfund.org.za

Education and recruitment of potential 0800 121 082 bone marrow stem cell donors who are ethnically diverse.

Survivorship Care Plan http://www.livestrongcareplan.org

OncoLink has teamed up with the Lance Armstrong Foundation to create an individualized plan of care for cancer survivors

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Books

Most are available at the public library, local bookstores or on-line booksellers.

A Guide to Complementary Therapies in South AfricaFenn, C.

After breast cancer Hester Hill Schnipper & Lowell E Schnipper

Always on call: When illness turns families into caregiversCarol Levine

Allen Carr’s Easyway to Stop Smoking Method is the world’s most successful stop-smoking program. National booking line number: 0861 100 200 www.allencarr.co.za

Breast Cancer HusbandMarc Silver

Challenge Cancer the Holistic wayMonica Fairall

Chicken Soup for the Breast Cancer Survivor’s SoulJack Canfield, Mark Victor Hanse & Mary Olsen Kelly

Crossing Divides: A Couple’s Story of Cancer, Hope, and Hiking Montana’s Continental DivideScott Bischke

Hit below the Belt: Facing up to Prostate CancerF. Ralph Berberich

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It’s Not About the Bike: My Journey Back To LifeLance Armstrong

Listen With Your Heart: Talking With the Person Who Has Cancer (Online Booklet) When someone close to you who has cancer starts to talk about the disease, do you change the subject? Do you stand in silence, worried that you’ll say the wrong thing? If so, you share these feelings with many others.

http://www.cancer.org/docroot/MBC/MBC_4x_listen_with_your_heart.asp?sitearea=MBC

Love is a journey: Couples facing cancerJan Latona & Gary Stricklin

Lymphedema: A Breast Cancer Patient’s Guide to Prevention and Healing Jeannie Burt and Gwen White

Making the Chemotherapy DecisionDavid Drum

On Death & DyingElizabeth Kubler-Ross

On Grief and Grieving: Finding the Meaning of Grief through the Five Stages of Loss Elizabeth Kubler-Ross & David Kessler

When a parent has cancer: A guide to caring for your childrenWendy Schlessel Harpham

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support network

People Living With Cancer offers a “buddy” support network where cancer patients can interact with and receive advice and support from cancer survivors who have a similar profile, disease and treatment

protocol. Using their experience in successfully coping with the disease, they are trained how to assist patients that are currently

facing treatment to deal with diagnosis, treatment, emotional issues and living with and beyond the treatment of cancer.

Carl Liebenberg, co-founder and director of People Living With Cancer (PLWC) said that “the most important support I needed after

my diagnosis was to simply talk to others who understood”.

For more information send us an email at [email protected] or give us a call on 076 775 6099 Visit our website at: www.plwc.org.za

CAPE TOWN: Eldré Strydom 076 775 6099

JOHANNESBURG NORTH: Chris Olivier 083 640 4949

NELSPRUIT: Mary Stevens 082 495 0029 / 013 759 0800

PORT ELIZABETH: Mariana Lourens 041 391 0300

PRETORIA: Wilma Lotter 082 573 7342

Toll-free number – 0861 ASK NOW / 0861 275 669

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www.plwc.org.za