Your coping toolbox

Once diagnosed, there is a lot of information to take in – and well-meaning family and friends may give you even more. Too much information may leave you confused about what to do. Instead, you may need information relevant to your situation or a way of dealing with the information you already have.

• Get organised – Start a filing system for all your test results, information and records.
• Keep a diary – This may help you to keep track of appointments and side effects, and highlight where information may be missing. This will also be a useful, accurate record in the future (especially if you are seeing different professionals in different locations).
• Take time to work out what you need to know – It may help to write down your questions and to put them in order of how important they are right now. For example, you may know what treatments are available to you, but you may not know the specific pros and cons of each treatment for your situation.
• Involve other people – Ask people you trust to help gather and make sense of new information.
• Find out about suitable clinical trials – Research shows that people who take part in clinical trials often have better outcomes than people treated outside of a clinical trial. They help test new or modified treatments to see if they are effective. You can find trials online at australiancancertrials.gov.au.
• Consider different sources of information – Look at websites, books and different organisations. Take care with cancer information from the internet as some of it is unregulated and of poor quality.
• Ask questions – If you are unsure or confused about certain information, it can help to talk to your doctor. Write down your questions beforehand so you remember what to ask when you see your health care team. You can also call Cancer Council 13 11 20 Information and Support service with your questions.
• Take a close family member or friend to consultations – They can take notes to help you remember the details. If you are comfortable with it, they can also ask questions.
• Update your affairs – Many people with cancer review their insurance policies and update their will. This doesn’t mean you have given up or that your prognosis is poor. Everyone needs to do these things at some point.
• Find support – Some people join a support group as it gives them the opportunity to talk to other people in a similar situation. If you think a support group is not for you, there are other ways to connect with people.

– Sam

Cancer can cause physical and emotional strain. Some days you may feel better than others. Looking after yourself can enhance your wellbeing and reduce stress during this time.

• Eat well – Eating well gives your body better fuel to help it cope with the stress of illness and treatment. Call Cancer Council 13 11 20 to ask for a copy of Nutrition and Cancer, or download one below.
• Be active – Physical activity can lift mood, lower blood pressure, improve sleep and reduce stress. It is also an important way to manage fatigue – helping you to feel more energetic and less tired. Even a short daily walk can help. Cancer Council’s booklet Exercise for People Living with Cancer has useful suggestions.
• Make time for yourself – Even though life may be very busy, it is important to make time each day just for relaxation and enjoyment. Think about things you do (or have done in the past) that help you to relax and feel good.
• Sort out issues – A cancer diagnosis may happen in the context of other life stresses such as financial problems, work-related issues, relationship concerns and family stresses. Dealing with other sources of stress in your life may help you cope better with the additional burden of cancer treatment.
• Stay connected – Keeping in touch with the world through work, hobbies, or time spent with family and friends may help you see a life outside of cancer and provide a break from your worries.
• Tap into spiritual beliefs – Some people find meaning and comfort from their faith and spiritual practices. Others may experience spirituality more generally. A cancer diagnosis may challenge the beliefs of some people, and it may help to talk to a spiritual leader or pastoral care worker about your feelings.
• Recognise signs of stress and anxiety – In times of stress, your body releases adrenaline, your heart beats faster, your blood pressure goes up, your breathing is shallow and fast, your hands get sweaty, and your mouth gets dry. These natural responses help people deal with a crisis. For most people, these feelings settle, but for others they are ongoing. For ways to reduce stress and lower anxiety levels, see Tools to help measure distress.

Does thinking positively help?

A common belief is that the most important thing in coping with cancer is staying positive.

While it can help to be hopeful, this doesn’t mean denying the reality that cancer is serious or frightening. Trying to put on a brave face all the time drains energy, and generally doesn’t work well because the negative thoughts just keep coming back. Pressure to be positive all the time can lead to people being afraid to discuss fears and feelings, which can make problems worse.

Try to be realistic about what is happening and talk to someone about your fears and concerns so you can better deal with them. Explaining how you feel to those around you may also help you get the support you need.

Complementary therapies are widely used by people with cancer in Australia. They are generally used alongside conventional cancer treatments such as surgery, chemotherapy and radiation therapy. They may offer physical, emotional and spiritual support, reduce side effects from medical treatment, and improve quality of life.

Complementary therapies are different to alternative therapies. Alternative therapies are used in place of conventional cancer treatments, but many alternative therapies have not been shown to be effective treatments for cancer.

Many complementary therapies focus on a mind–body connection. These techniques are based on the belief that thoughts and feeling can affect physical and mental wellbeing. When your emotions or mental state are under pressure, your physical body can be affected. Similarly, physical symptoms can have a negative impact on your mood and mental wellbeing. Below are examples of some types of mind–body complementary therapies.

Relaxation and meditation

Both of these therapies can help reduce stress, anxiety and fatigue, and improve quality of life.

• Relaxation usually includes slow breathing and muscle-loosening exercises to physically and mentally calm the body.
• Meditation involves focusing on a single thing, such as breathing.
• Mindfulness meditation helps you to take things one day at a time. It allows you to focus more easily on the present, rather than worrying about the past or fearing the future.

Counselling

Through discussions with a counsellor or psychologist, you can identify problems and explore ways of resolving unhelpful thoughts and feelings that affect your health and day-to-day life. Counselling allows you to express your emotion in a safe and supportive environment, and to learn new coping skills.

Art therapy

This technique uses visual art (drawing, painting, collage, sculpture or digital work) to express feelings. It can be done individually or in groups – some hospitals run programs. You do not need artistic talent to participate or benefit – the emphasis is on the process of producing artwork, not the end result. An art therapist helps you explore the images you have created to encourage understanding of your emotions and concerns.

– Ray

Let your doctor know about any complementary or alternative therapies you are using or thinking about trying. Some may not be appropriate and may be harmful if you are having some types of medical treatment. Some alternative therapies may even cause harm.

Contact Cancer Council 13 11 20 to ask for a free copy of the booklet Understanding Complementary Therapies or for a copy of our meditation and relaxation CDs. These are also available to stream from cancercouncil.com.au.

People affected by cancer may find themselves going over and over the same distressing thoughts about the past or future. Ignoring such thoughts or trying to distract yourself may work at first, but they often return once you are no longer distracted – for example, during the night or early in the morning.

• Identify where the thoughts come from – Ask yourself if your thoughts are the result of an underlying belief, such as ‘The world should be a fair and just place’, ‘If I can’t do everything I used to do, I am useless’ or ‘I am a burden to my loved ones’. Or perhaps you have a tendency to attribute personal meaning to everything that is happening, even to events that are beyond your control. For example, if you arrive at the treatment centre and can’t find a carpark you think, ‘Nothing ever goes right for me. I don’t know why I’m bothering with the treatment, I know it won’t work’.
• Imagine what you would say to others – Think of someone you love and imagine what you might say to them if they felt the same way.
• Check your thoughts – Ask yourself if you are jumping to conclusions or exaggerating the negatives. If so, is there something you can do to change the situation or improve it?
• Write down your thoughts – This helps slow down your thinking and makes it easier to focus. It may also help you determine if a thought is based on facts, realistic or helpful.
• Acknowledge life events – Check if you are focusing on the difficult things and ignoring the little achievements or happy events that may also be occurring. Sometimes we notice the bad things that happen and don’t notice the good. Writing down three good things that have happened to you each day may help. They don’t have to be major events – just the everyday things that often go unrecognised.
• Practise letting your thoughts come and go – Thoughts are fleeting. Some we notice and many we don’t. Practise letting your thoughts come and go without getting caught up in them. The Cancer Council Mindful Meditation CD may help you practise this. Contact Cancer Council 13 11 20 for a free copy.
• Coach yourself – For thoughts to be helpful, they need to be balanced and believable. Use encouraging thoughts to talk yourself through difficulties, rather than undermining yourself. Learn to be kind to yourself. Counsellors can teach you these techniques.
• Seek help – There are a range of professionals who help people manage how they’re feeling. Check if one of these is available at your treatment centre, or ask your GP for a referral. Medicare provides rebates for mental health services provided by a psychologist – talk to your GP about this.

• Mental health nurse – A registered nurse who has completed further study in mental health nursing. Role includes assessing people, giving medicines and assisting in behaviour modification programs.
• Counsellor – A counsellor’s education may range from a vocational certificate in counselling through to university-level studies in psychology or social work. There is no qualification standard they have to meet. Counsellors listen to what’s going on and offer strategies for dealing with issues.
• Social worker – A social worker must complete a four-year undergraduate or two-year masters degree. They provide emotional support, offer practical and financial assistance and help people find support services.
• Psychologist – A registered psychologist must complete four years of psychology at undergraduate level, followed by either postgraduate studies in psychology or two years of supervised clinical practice. Psychologists who specialise in counselling use their understanding of the mind to guide clients through issues with how they think, feel and learn. They often develop expertise in particular approaches.
• Psychiatrist – A psychiatrist is a trained medical doctor who specialises in the diagnosis, treatment and prevention of mental illness. As well as discussing issues with patients, a psychiatrist may prescribe medicines to help manage a range of emotional conditions. You need a referral from your GP to see a psychiatrist.

Distress is an unpleasant emotional state that may affect how you feel, think and act. It can include feelings of unease, sadness, worry, anger, helplessness and guilt. While everyone with cancer experiences distress at some point, it can be difficult to know if how you are feeling is a typical reaction or something more serious.

The National Comprehensive Cancer Network has developed a tool called the Distress Thermometer that you can use to measure how you are feeling. It asks you to rate the level of distress you have been experiencing in the past week, including today. The scale ranges from ‘no distress’ (0) to ‘extreme distress’ (10). If you have a distress level of 4 or more on the thermometer you may benefit from professional support.

The thermometer also includes a list of specific problems people diagnosed with cancer may experience and asks you to check or mark any that have been a problem for you in the past week, including today.

Use the Distress Thermometer on the next page to rate how you’re feeling and answer the simple questions. It should take only a minute to complete.

Talk to your health professional about the Distress Thermometer. Your responses to the problem list help health professionals to identify issues that are of concern to you and offer suitable support services. You may want to show the completed thermometer and questions to your doctor.

After a cancer diagnosis, you will probably need to make several decisions. These could include the choice of treatment, how to involve or care for your family and friends, whether or when to return to work, and what to do about finances.

• Take your time – Even with a cancer diagnosis, there is often time to consider your treatment choices. Generally, people make better decisions – and have fewer regrets later – if they take time to gather information and think about the possible consequences.
• Get expert advice – Ask your health care professionals to explain your treatment options and the benefits and side effects of each. Social workers can give you details about financial assistance and support services.
• Write it down – Organising your thoughts on paper can be easier than trying to do it in your head. Write down the aims of the treatments available to you, and the pros and cons of each option. Identify the purpose of the treatment – to cure the cancer, control it or to be as comfortable as possible. Think about what treatments will help to achieve the aim you want. You could rate how important each point is on a scale of 1–5, with five being very important and one being least important. To determine the importance of a point, look at the short-term and long-term effects on you and others.
• Talk it over – Discuss the options with those close to you, like your partner or a close friend. As most decisions will affect others in your life, it’s also important to consider their options.
• Use a decision aid – Decision aids are available for some particular issues, for example whether to have breast reconstruction. A decision aid is designed to help you make choices about different treatment options by focusing on what matters most in your own case. You could ask your doctor or cancer care coordinator if a decision aid is available for your situation.
• Expect to experience doubts – Being unsure does not mean you have taken the wrong path. Reassure yourself that you made the best decision you could with the information you had at the time. Asking yourself, ‘Did I make the right decision?’ is rarely useful. Also, decisions are not always final – it may be possible to change your mind even after you have already started down a particular treatment path.
• Get a second opinion – Asking another specialist what they think can be a valuable part of your decision-making process. It can confirm or clarify your doctor’s recommendations or reassure you that you have explored all of your options. Specialists are used to people doing this. Your doctor can refer you to another specialist and send your initial results to that person. You can get a second opinion even if you have started treatment or still want to be treated by your first doctor. Alternatively, you may decide you would prefer to be treated by the doctor who provided the second opinion.