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LEARNING ABOUT CANCER
WHAT IS MY ROLE AS A CARER?
CARERS AND THE MEDICAL TEAM
CARING FOR THE PATIENT
WHEN THE PATIENTíS HEALTH FAILS
PALLIATIVE AND ADVANCED CANCER CARE
DEALING WITH PRACTICAL & PERSONAL AFFAIRS
PRACTICAL TIPS
STORIES OF HOPE
LIST OF HOSPITALS IN MALAYSIA
SUPPORT GROUPS

 
 CARING FOR THE PATIENT

  What kind of care is required will depend on your friend or relativeís condition:
  • Whether they are still undergoing treatment or are recuperating.
  • How well they are responding to treatment
  • Whether they need palliative care
Expect to make changes as both of you adjust to the new lifestyle, at least temporarily.

CARING FROM HOSPITAL TO HOME

Make sure you provide comfortable transport beforehand, ready and waiting. If you canít drive, enlist help from a relative or have a taxi waiting.

Have a comfortable resting place ready. Get the necessary equipment if needed. Speak to the medical team on what needs to be done.

Once your loved one has been discharged or after undergoing treatment, they may be anxious to settle back into their normal routine. Encourage activities that would be good for them (exercise, etc) where possible. Discourage others (alcohol consumption, smoking, etc).

AT HOME

If your loved one is well enough, a small gathering of friends to welcome them home would be nice. Keep it to a small group as after their trauma and treatment, a noisy, highspirited crowd may be too much.

Have their favourite books, videos or music ready for them. Even favourite foods if the doctor allows it.

If they are able, encourage them to be independent as much as possible. This builds confidence and enables them to see how they are recovering.

EQUIPMENT

Some things you may need:
  • Wheelchair
  • Urine bottle/bed pan
  • Commode
  • Sliding Sheets
  • Moving Aids
  • Bed & Chair Raisers
  • Special bed and mattresses
  • Pillow support or back rest
  • Handrails and ramps
  • Bath aids
  • Adapted cutlery
  • Intercom
  • Personal alarms

MEDICATION

As a carer, you will need to know what medication needs to be given, when, in what dosages and so on. Consult the medical team if you are not clear.

If your relative is not stable enough to take medication by themselves, keep all drugs away from them. Administer the correct dosage yourself.

What You Should Do:
  • Follow the instructions given on labels and by your medical team. If there are conflicts between the two or you are unsure, refer back to the medical team for an explanation.
  • Drugs can be in many forms - pills, liquids, self adhesive patches, etc. Different manufacturers may make the same drugs in different dosages. The doctor may use a combination of drugs to find what works best with your loved one.
  • Never stop using a prescribed drug until you are advised by the medical team.
  • Make your own chart or timetable if there are many drugs and you feel itís hard to keep track of them all.
  • Most pharmacists would supply specially designed tablet containers with separate compartments that you can fill as required.
  • Never buy products for your relative off the shelf without medical advice.
  • Ensure your medical team is aware of any supplements or complementary therapy you may be taking as there may sometimes be drug interactions.

TRANSPORT

Most likely you will need to arrange for transport either to take your loved one for hospital appointments or perhaps for yourself when attending to other daily needs. Or as your dear one gets better, take them on short trips.

What You Can Do:
  • Enlist help of friends or neighbours to drive you and your loved one around. Alternatively, you can also request for their help with errands such as collecting the laundry, doing shopping and so on.
  • Arrange for a taxi to pick you and your loved one for hospital appointments and vice versa.
  • Make sure your car is in good condition (well serviced). Have the number of a good mechanic or auto breakdown service (such as the Automobile Association of Malaysia or AAM) just in case.

STOMA CARE (COLOSTOMY OR ILEOSTOMY)

Colostomy means that an opening (stoma) is made in the patientís abdomen to allow body waste (stools) to exit the body. This opening leads to the big intestine whereby waste products are channelled from the intestine to the stoma and into an external bag.

Colostomies are performed normally when certain portions of the rectum or colon have to be removed due to cancer. They can be either temporary (until the intestines heal) or permanent.

An ileostomy is the same except that the stoma leads to the small intestine.

Nowadays permanent colostomy users enjoy almost total freedom of lifestyle - going on holidays trips and even enjoy sexual activity. But during the early days, they are likely to need your help in adjusting.

What You Can Do:
    Your loved one may need help in changing their waste bags.
  • Talk to your doctor on the type of bag, fixing style, materials and emptying arrangements.
  • When they leave the house initially, accompany them in case they need assistance in bag changes and so on. Check out toilet facilities in advance to avoid problems and embarrassment later on.
  • If travelling long distance, make sure adequate toilet facilities are available throughout the journey. Have your bag changing kit ready. Take a good supply of antidiarrhoea medication. Check travel insurance policies if your loved one is covered for trips.
  • Diet - wind may be a problem for some patients. Here are some helpful tips:
    • Get your loved one to chew their food thoroughly.
    • Eat smaller portions at regular intervals.
    • Avoid foods that may cause wind such as onions, beans and carbonated drinks.
  • Odour - Donít worry too much about odour as bags nowadays have odour proof linings and are tightly sealed with in-built filters. But you can still use deodorant sprays and perfumes when changing pouches.
  • Diarrhoea - The main culprits are stomach problems, unsuitable food and excessive fluid or anxiety and stress. Review your loved oneís diet. Identify problem food and remove them from the diet until the problem stops. Consult your patientís medical team for further advice if needed.
  • Constipation - Review the diet. Identify and remove problem foods.
  • Alcohol consumption - Stoma patients can drink alcohol in moderation. Too much beer or lager though may lead to wind and diarrhoea.

BREAST RECONSTRUCTION

Some form of breast reconstruction would be offered if your loved one has undergone a lumpectomy (removal of tumour or cancerous tissue in the breast).

If she has had a mastectomy (removal of the entire breast), a prosthesis would be used. Prosthesis is an artificial breast made of silicone to be worn inside the bra. They now come in a variety of colours, sizes and shapes to achieve as natural a look as possible.

Breast reconstruction is performed either using silicone or saline implants or transplanted tissue taken from elsewhere in the body. All methods are safe and painless.

The psychological and practical advantages of breast reconstruction outweigh that of prosthesis. The former makes dressing easier, and gives the survivor a stronger feeling of being Ďwholeí again.

However, the new breast will not be identical to the one removed during surgery. The new tissue may be less sensitive and the reconstructed nipple may look different.

What You Can Do:
  • Discuss all options for breast reconstruction with your loved one and the medical team. This includes prosthesis, if required. Provide emotional support during this difficult time.
  • Take showers instead of baths and carefully dry the area.
  • Massaging the area with oils or creams (check with your doctor) will help keep the skin supple and elastic. This will also help reduce fibrous tissue from forming around the area.
  • You can help shop for special support bras that your loved one can wear.
  • As advised by the medical team, there may be exercises you can get your friend or relative to do which will add suppleness and mobility to the breast.

HAIR CARE

Hair loss is often temporary but the sight of losing oneís hair can be distressing for many.

What You Can Do:
  • Use soft brushes as the scalp may be sensitive after treatment.
  • Avoid using strong chemicals for at least a few months after treatment ends as these can damage growing follicles. Babyís shampoo and mild variants would be better.
  • Dry hair with towels rather than driers as heat can make the growing hair brittle.
  • Dispose of fallen hair discreetly.
  • Provide fashionable hats, caps and other head gear for your loved one to choose from.
  • When new growth begins, suggest a short haircut, at least for the first six months. This prevents too much weight dragging on the damaged roots and gives a uniform length until thicker growth is established.
  • If the hair loss is in large areas, suggest wigs, hairpieces and suitable caps. Consider whether the wig should be made of real hair or synthetic materials; it fits well and doesnít trigger allergies.

DIET (NUTRITION)

Know that your choice of foods, preparation methods and serving portions will impact how well your loved one copes and even recovers from cancer.

A nutritious diet high in energy, protein, healthy fats and vitamin and minerals will help your dear one:

  • Maintain physical strength
  • Regain loss weight and prevent malnutrition
  • Replace healthy cells faster after chemotherapy and radiotherapy
  • Boost the immune system to fight infection
  • Look and feel better
Things To Consider

Consider your loved oneís body size, age and gender when planning a diet for them. Also, people with cancer often need lots of calories and protein so you may want to think about that too.

But remember, nutritional needs can differ from one person to another and may change over time. Talk to a nutritionist, dietician or the medical team for specific advice.

Also consider that your friend or relative may complain of poor appetite, sore throat, no taste, nausea and other ailments such as:

  • Refusing to eat due to depression and worry
  • Dentures no longer fit properly
  • Constipation
  • Anxious of affecting their colostomy

As a guide, you can refer to the Dietary Management Chart at the end of this chapter for more specific information. The guide will tell you how to manage diet and nutrition based on your loved oneís side effects i.e. constipation, mouth pain, etc.

You can also refer to the following tips for some ideas as well.

What You Can Do:
  • If possible, serve familiar and favourite foods. Cancer patients are often more willing to eat these.
  • Youíre encouraged to serve a variety of foods and new foods. But do it progressively without making too many changes too quickly. Let your loved one adjust slowly.
  • If youíre busy, cook foods the night before and pre-heat the next day.
  • Serve foods fresh especially vegetables and fruits. Both are full of nutrients that help prevent and fight cancer by removing toxins, repairing DNA, strengthening the immune system and so on.
  • Take note when your loved one is feeling his / her best and schedule meals at this time.
  • Healthy snack foods such as cereal bars, cheese and crackers, yogurt may work better than full meals. Keep an ample supply at home.
  • Let your loved one eat on request. Do not force feed.
  • If he / she is too weak to eat, feed them.
  • Try all-in-one drinks if meals are not suitable. Fruit flavoured drinks and juices are good for stimulating taste.
  • Ice-cream is a good choice for cancer patients as it is soft, high in calories and tasty. They are great for kids with cancer.
  • If your loved one can exercise, encourage them to do so. This helps boost appetite.
  • For adult patients, if taste is not a problem, cut back on salt, fat, alcohol and sugar.
  • Use disposable plastic utensils if your loved one experiences unpleasant metallic tastes while eating.
  • You can give nutritional supplements such as multivitamins. But consult the medical team before doing so.
Nutrition After Cancer
  • Continue to provide a well balanced diet of all the food groups in the right portions. Talk to the medical team about developing a menu plan
  • Emphasise on fruits and vegetables, high-fibre foods, such as whole grain breads, low-fat dairy products and cereals and reduce fatty foods.
  • Keep alcohol consumption as low as possible or in moderation.
Nutrition for Kids With Cancer
  • Encourage your child to eat high-calorie, high-protein foods. Donít worry about the fat unless your child has water retention or weight gain due to steroid medication.
  • Make the meals attractive with appealing presentation. A cookie cutter is a good idea to cut foods into Ďbite sizedí, fun shapes and sizes. Or make patterns and shapes such as faces out of fruits and vegetables.
  • Use colourful cups and utensils.
  • Make meal times a fun activity that involves playing and storytelling. Or have a picnic in your backyard, living room and so on if your child is well enough. Invite his / her friends to make it more enjoyable.
  • If you can, get your child involved in preparing the meal.
  • If your child has a low white blood cell count, he / she is at higher risk of infection. Ensure proper hygiene is maintained during food preparation. Avoid food bought from roadside stalls and hawkers. Clean and cook food well. Also avoid raw food.
  • If your child is on steroid medication, your child may develop a bigger appetite leading to weight gain. They may also retain fluid. Choose low salt and sodium foods. Avoid processed and preserved foods.
  • Offer your child fresh, nutritious, filling foods, such as fruits and vegetables, homemade soups, non-processed meats, dairy products, breads, and pastas.
  • The appetite changes and fluid retention caused by steroids are temporary and will recede after therapy. But expect a temporary appetite loss as the body adjusts after the steroids.
  • Some children may have difficulty going back to their normal weight.
Dietary Management Chart for Cancer Patients

Courtesy of Department of Dietetics, University Malaya Medical Centre, Kuala Lumpur.

Adopted from Task Force on Nutrition Support USA and Nutritional and Cancer, Department of Dietetics, Hospital Kuala Lumpur, 1995

Managing Health Issues at Home :

What the Carer Can Do






LIFESTYLE

A healthy lifestyle can make a big difference in reducing risk of recurrence.

It is advised that alcohol consumption be reduced or stopped totally for cancer patients.

If your loved one insists, make sure they consume less than the recommended weekly allowance for healthy adults - 20 and 12 units per week for men and women respectively.

They should also have 2-3 alcohol-free days each week. Consult the medical team for further advice.

More Tips:
  • Avoid undiluted spirits or drinking on an empty stomach
  • Avoid drinking several drinks after a large, rich meal.

If they smoke, quitting the habit will have almost immediate health benefits.

What You Can Do:
  • Change routines or avoid situations that would tempt them to smoke. For instance, get them busy with something after meal times when he/ she would be itching for a cigarette.
  • Offer substitutes such as tea, nicotine patches and chewing gum.
  • Offer plenty of fruit juices to drink to flush out the chemicals in the body.
  • Offer plenty of praise and support if theyíre smoke free. Do not scold or show disappointment if there is a lapse. Just start again.
  • Get friends and family to respect your loved oneís decision to be smoke free. Tell friends and family not to smoke in his / her presence.
  • Talk about the benefits of quitting smoking such as reduced chances for lung cancer and heart attacks, as well as better fitness and energy levels.
  • Highlight how much money is being saved.

EXERCISE

Regular physical activity is beneficial for cancer patients - both in physical recovery and mental well being.

However the level of activity must be tailored to the patientís condition. Consult your patientís doctor before starting any exercise.

What You Can Do:
  • Encourage your loved one to start slow and progress with time. Choose activities that are pleasurable and not competitive.
  • Ensure they warm up before any physical exertion
  • As a carer, it would be a good idea to join your dear one as well. For instance, both of you can take walks and go swimming together. Make it a group activity with friends and family. The social and interactive aspect adds to the fun and will encourage your loved one to exercise more.
  • Stop immediately if there are signs of discomfort or pain.
  • Some patients may experience leg cramps, particularly after a long period of being inactive due to treatment and recovery. Consult your medical team for further advice.
Some beneficial exercises for cancer recoveries include:
  • Walking
  • Swimming
  • Golf
  • Bowling
  • Badminton
  • Yoga
  • Cycling
  • Dancing
Consider Your Relationship With Your Loved One

The relationship you share with your loved one will evolve due to the life experience you both have shared. The whole cancer episode can alter the dynamics of your relationship.

There may be a greater appreciation for each other. Sometimes, the carer may feel resentful because the cancer patient has got all the attention while you have been shouldering the burden. Or the patient may feel helpless - an inconvenience to the carer. The loss of independence may make them resent their carer.

Parent and child may develop renewed relationships. Between husband and wife, there could be a deeper love shared by both. Or the strains of the trying period could have impacted the marriage. If you are feeling various emotions, it is good to talk to someone.

Good communication with the person you are caring for is the most important part of your role. It may be difficult for the patient to participate in daily planning and decision making because he is dealing with the physical, emotional, and social effects of cancer and treatment. Your job is to involve the person as much as possible, so he feels that he is contributing to his getting better and doesnít feel a burden to you. Below are some things you can try to do to keep the patient involved:

  • Help them live as normal a life as possible. To accomplish this you might start by helping them decide what activities are most important to them and help them to continue to do those activities. They might put aside those activities that are less important in order to do those they enjoy most.
  • Encourage them to share feelings and support efforts to share. For example, if they began talking to you about how they feel about cancer, donít change the subject, but rather listen and let them talk. You might share how you feel as well.
  • Let them know you are available, but donít press issues. This might involve an activity that they are trying to complete such as dressing himself. They may be struggling but it is important that they are able to do this. Let them decide when help is needed.
  • Remember that people communicate in different ways. Try sharing by writing or through gestures, expressions, or touching. Sometimes, it may be really hard to say what you are feeling, but a gesture such as holding hands might communicate what you feel.
  • Take your cues from the person with cancer. Some people are very private while others will talk more about what they are experiencing. Respect the personís need to share or his need to remain quiet.
  • Be realistic and flexible about what you hope to talk about and agree on. You may need or want to talk at a time when the patient does not. Be flexible with your wants and needs.
  • Respect the need to be alone. Sometimes, we all need time to be alone. Respect this need.

You may find that your loved one is acting different. They may be angry, quiet and withdrawn, or just sad. If you get the feeling that they arenít talking to you because they want to spare your feelings, make sure they know that you are always open to talking, even about tough topics.

 

 
A Community Service Project by: Malaysian Oncological Society and Pfizer Malaysia - (latest update: 24-02-2011)