Wellbeing

This booklet is for partners and carers of men affected by prostate cancer. It contains information to help you understand important issues about prostate cancer diagnosis, care and support.

In Australia, prostate cancer is the most commonly diagnosed cancer in men. It is estimated that in 2014, about 21,000 Australian men will be diagnosed with prostate cancer, accounting for approximately 30% of all new cancers in men.

After a diagnosis of prostate cancer, it’s common for the man to see a number of health professionals with different expertise who work together as a team, called a multidisciplinary team (also known as a healthcare team). Best practice treatment and supportive care for people with cancer involves a team of different health professionals. Each team member brings different skills that are important in managing care and in making decisions around the individual’s needs. The team includes health professionals who are involved in diagnosis, treatment, managing symptoms and side effects, and assisting with feelings or concerns during the cancer journey.

The cancer journey is a personal experience of cancer. It does not look the same for everybody, even when care is given to people with the same type of cancer. Depending on the stage of prostate cancer, the situation and other underlying conditions, the experience and support will be quite different.

As the diagram ‘The cancer journey’ shows, it can be useful to think of the journey for your partner or the person you’re caring for in stages that may include detection, diagnosis, treatment, follow-up care and survivorship. For some, it may include end of life care. Take each stage as it comes so you and your partner or the person you’re caring for can break down what feels like an overwhelming situation into smaller, more manageable steps.

Many people want to take an active part in making decisions about the care. Gaining information about prostate cancer, its treatment and support will help you support your partner or the person you’re caring for to make decisions about his care. The aim of this booklet is to provide you with information and ways of managing issues you may experience when supporting your partner or the person you’re caring for so you’re able to maintain a positive wellbeing and good quality of life. Being informed enables you to participate in decisions about the care and support you provide. This leads to improved experiences and better care.

A partner can be a wife, same or opposite-sex de facto. Many willingly care for a person as an important part of their relationship. However, a partner is not always the carer.

A carer is someone (e.g. partner, child or friend) who supports another person through a chronic condition or disease. Carers provide both emotional and practical support. This could be for a short time, some months or years.

As a partner or carer of a man with prostate cancer, you may find yourself dealing with feelings of fear, anxiety, anger, depression and loss. A lot of partners and carers say they feel as though they are on an emotional rollercoaster. You may experience changes to your lifestyle and relationships. Your life may change quickly with many decisions to be made around work, finances and new roles and responsibilities.

What do partners and carers do?

Each situation is different. As a partner and/or carer, your role will depend on the needs of your partner or the person you’re caring for, your relationship and what you are able to do. You may be providing help with daily activities such as:

Whether you are doing one or all of these things, you are providing care to someone with cancer.

Caring can involve positive and negative feelings. Partners and carers say they have felt joy, loved, anger, appreciated/unappreciated, scared, frustrated, that they are making a difference, hopeful, lonely, sad and guilty. All these emotions are normal. Whatever you are feeling or have felt, chances are that others in your position have been through the same sorts of feelings. Your feelings may be similar to those experienced by your partner or the person you’re caring for.

Anger, frustration, resentment

Feeling angry, feeling frustrated and feeling resentful are all reactions experienced by people who are carers. Anger and frustration often go together when things do not go the way we want them to or when people do not behave the way we think they should. Anger is also linked to other negative emotions, or may be a response to them. You may be feeling hurt, frightened, or disappointed. Research has shown that men and women may express their anger in different ways. Men often find it easier to express the anger rather than the feelings underneath such as feeling sad or hurt, weak or vulnerable. For women, anger may get buried under tears or sadness.

People who provide care have said that they feel angry, frustrated and resentful at:

Letting your anger ’explode’ only increases anger levels and aggression. But holding your anger inside can be just as bad, and has been linked to anxiety and depression. If anger is expressed in a controlled way, you can start to look at some of the things that may be making you angry. You may also be able to learn strategies to deal with these emotions.

Fear

Cancer and caring for someone with prostate cancer can be frightening. People who provide care say that they have felt afraid of:

Often learning more about prostate cancer helps carers feel more in control. You can also then focus and prioritise things that you can control or seek advice and assistance.

Guilt

Feeling guilty is one of the most common emotions that partners and carers report feeling. They may feel guilty about:

When supporting a person with prostate cancer, you may reach your physical, emotional and material limits or that the person you are caring for has to have some residential care. It is important to not feel guilty when this happens. In dealing with your feelings, it can be useful for you to recognise your limits, acknowledge the uncertainties you face, recognise the burden that caring has placed, seek and accept assistance. There are professionals and services such as home care, home nursing and ‘Hospital in the Home’ that can help. Respite care is important, it enables partners and carers to maintain their health, emotional and physical strength when providing support and care.

Do not feel guilty if the person you’re caring for requires more support, this may be related to the cancer or his need for further treatment, not your caring capability.

You may be able to learn some ways to manage guilt:

Loneliness

Isolation and loneliness are common feelings that partners and carers report. These feelings may arise because family and friends may not contact you as often – perhaps they think that you are too busy. Some people just do not know how to talk to you and the person you care for about prostate cancer and all the changes that are occurring in your lives. You may feel too busy to socialise or take time out for yourself.

Even if you do have a lot of help, you may still feel as though no one really understands what you are going through. To help deal with these feelings you can try to:

Stress

Caring for someone with prostate cancer can be stressful at times. Throughout the journey, your needs and concerns may change. Lots of different emotions may arise, which add to or cause more stress. You may have to adjust to changes in your lifestyle, or find that you are taking on more responsibility. Some carers can find the role overwhelming. Some days it may feel as though the need is so great that you cannot possibly get it all done or that you have not done enough.

Research has found that people who provide care often experience higher levels of distress than cancer patients themselves. This can arise from the high expectations partners and carers set for themselves.

The physical and emotional demands of caring can be high. You need to look after yourself or these demands can wear you down. The care you give to yourself is as important as the care you give to the person you’re caring for – it helps you to care.

Symptoms of stress may include trouble sleeping, headaches, heart problems and emotional signs and symptoms such as feeling tired, unwell or over-sensitive. If high stress levels continue for a long time, carers may experience exhaustion and burnout.

Some strategies that may help you deal with stress include:

Anxiety

Everyone feels anxious from time to time – but some people may experience these feelings often. Sometimes it may be hard to know how much is too much. Caring can be a difficult role and there are many stresses and worries that you may face. Anxiety among people who provide care is common – some research has found that about half of all carers experience anxiety.

Anxiety disorders can be treated, sometimes with medication, by counselling or psychotherapy or by a combination of the two.

Some warning signs:

If for a long period of time you have:

Some signs of anxiety include:

If you feel really anxious, or it has lasted for a long time, you should speak to a member of your healthcare team (e.g. GP, psychologist, social worker or qualified counsellor).

Depression

Feeling sad and down are all normal emotions and usually only last for a short period of time. They may only have a slight impact on your life. Depression is an emotional, physical and thinking state that is severe and lasts for a long period of time. It usually interrupts a person’s life to a significant extent.

Depression among people who provide care is common and some research has found that about one quarter of all carers suffer from depression.

Some warning signs:

If you have been:

Things you can do to help yourself:

Suggestions for dealing with a bad day:

Some partners and carers have found it useful to keep a diary of their cancer journey.

Some of the benefits of keeping a diary include:

Asking for and accepting help

Some partners and carers say that they feel as though they cannot ask for help because they don’t want to impose on others’ busy lives. Sometimes carers can feel as though they are the only ones who know how to properly look after the person they’re caring for. Others say that they feel as though they have failed in some way if they cannot manage it all by themselves.

It is important to remember:

Some carers say that they are just not sure how to ask. A good place to start when asking for and accepting help is to be specific, to know what has to be done and who could possibly help you with it. Write down:

Having a clear idea about what needs to be done, and how long it will take, may help you say yes more often to other people’s offers of assistance.

Some ways of coping and living with prostate cancer

Coping skills

Think of occasions when you were faced with a difficulty or challenge – What did you do? What strategies did you use to help you cope? What worked? What didn’t work? What helped you? What didn’t help you? Who is in your support network – partner, family, friends and professionals? What did they do that helped or didn’t help?

Although these difficult or challenging occasions might not be cancer related, understanding the ways you dealt with them successfully in the past could be useful.

Being properly informed and up-to-date with all the information about prostate cancer can help you feel in control. While there is a lot of information about prostate cancer on the internet, it is important to make sure the information is from a credible source and not someone’s unsupported personal opinion. To confirm information, talk with members of the healthcare team.

Debrief

Talk with people you trust such as your family, another carer or close friends. Talking about your reactions to a situation can be a ‘release’ so you don’t have to ‘bottle up’ your feelings. Allowing yourself to talk about how you are feeling is not a sign that you’re not coping, it can help you cope. There are PCFA support groups specifically for prostate cancer, where carers are welcome to attend. To locate your nearest support group, please visit www.pcfa.org.au. For specific carer support, counselling, carer information and services you can also call Carers Australia (Tel: 1800 242 636).

Taking time out

Managing stress and taking time out from caring to do something you enjoy is an important part of your caring role. It allows you to recharge your energy, to keep a sense of who you are as a person and to feel better about yourself. All these things then benefit the person you care for because you feel calmer, more in control, and less stressed.

Taking time out to relax does not have to be complicated, time consuming or expensive. Try to give yourself time-out each day. Some things you may like to try are:

Take a few minutes and think about what you would do if you had 10 minutes a day to yourself, or 30 minutes, or an hour. You may think of things you have never done before but always wanted to do. Build ways into your life to allow you to do these things.

There may be times when you need support or time out for a longer period. Talk to the healthcare team about arranging respite care services.

Looking after your own physical health

Maintaining your health is vital to your role as a carer. It can help you feel you are still in control. Have regular check-ups with your doctor. Ask your doctor or a member of the healthcare team for help with sleeping or dietary problems or if you are feeling really overwhelmed, anxious, stressed or depressed.

Partners and carers often forget or neglect to keep a check on their own health and wellbeing and tend to downplay their own health needs when they notice they are not feeling well. You can acknowledge that you are not feeling well, without having to compare your symptoms to how another person is feeling. It is purely a statement about how you are feeling. Not ‘better than’, not ‘worse than’.

Regular health checks will help you maintain your health and wellbeing.

Sleep

Signs yoiu may not be getting enough sleep include:

• Difficulty waking in the morning
• Inability to concentrate
• Moodiness, irritability, depression, anxiety
• Drowsiness during the day.

Some sleeping tips:

• Going to bed and waking up – try to keep to regular times
• Start bedtime habits (e.g. write in your diary, listen to music)
• Relax before going to bed
• Limit caffeine and alcohol intake
• Do some physical exercise
• Do not go to bed hungry.

Exercise

There may be times when you are feeling too fatigued to even think about exercising. You may have never really enjoyed any physical exercise. However, exercise has a wide range of health benefits. Exercise can also help with depression.

Regular gentle exercise can:

• Help prevent you from getting sick
• Help you sleep better
• Make you feel more energised
• Reduce muscle and mental tension.

Talk to a physiotherapist, exercise physiologist or another member of the healthcare team about a suitable exercise program for you.

Taking care of yourself also means eating proper meals and eating healthy food

It is important to maintain your strength. What you eat can impact on your sense of health, vitality and wellbeing. A nutritionist or other members of the healthcare team can offer personalised nutritional advice on your diet.

In general, the Australian Dietary Guidelines suggest:

• Eat plenty of vegetables, legumes/beans and fruit
• Eat wholegrain (cereal) food such as bread, pasta, rice , noodles
• Eat lean meat, fish and poultry as well as other protein sources such as tofu – include milk, yoghurt and cheese (reduced or low fat)
• Drink plenty of water
• Limit saturated fat such as biscuits, cakes, pies and processed meats
• Limit added salt
• Limit added sugars such as confectionary, sugar-sweetened soft drinks
• Limit alcohol.

Some treatments for prostate cancer may affect your partner and impact on your own sexuality. Some of these impacts may include loss of interest in sex, changes in your ability to give or receive sexual or intimate pleasure, or changes to the way in which you see yourself or your partner.

Sexuality and intimacy are different, but often intertwined. When people speak of intimacy they are referring to the giving and receiving of love and affection, comfort and safety, understanding and warmth. Sexuality refers to feelings of sexual desire and engaging in sexual activity. But sexuality is not just about sexual intercourse, it involves how you feel about yourself and how you express yourself sexually.

If you feel exhausted, out of shape and tired, sex and intimacy may have been put on the back burner. It is difficult to feel sexy when you are feeling run down.

You may also have different feelings about intimacy now that you are a carer. Some carers who are caring for their husband or partner say that they feel:

These are common reactions.

Are you avoiding sex/intimacy because you are afraid to talk about it?

Talking about sexuality and intimacy openly can be awkward and challenging because they can be sensitive issues. Talking about fears and concerns can be difficult if you’re not used to talking about these matters. Some people don’t like to talk to anyone about what is going on or they ‘imagine’ and ‘second guess’ what is going on for their partners. However, communication is a vital part of maintaining intimacy in a relationship. Talking with your partner openly can improve your relationship and sexual experience. One uncomfortable moment may be nothing compared to what you can gain by taking the risk to open the conversation. Talking about it openly may even bring you closer, and avoid the frustration and misunderstanding that can make it harder to deal with the changes.

Many relationships survive prostate cancer with people saying:

If your are caring for your partner

You may want to think of ways that you and your partner can keep intimacy alive such as:

The major issues surrounding sexuality and intimacy will be equally important whether you are heterosexual or homosexual. If you are in a same-sex partnership, it is important to feel that your sexuality is respected and included in your discussions with healthcare workers. More information is available in a series of free booklets specifically for gay and bisexual men living with prostate cancer available through PCFA (www.pcfa.org.au).

If you and your partner have children, it could come to you to discuss prostate cancer with them. Members of the healthcare team will be able to assist you in this task.

If you have younger children, you may need to discuss parental roles and responsibilities. There are psychologists, social workers and counsellors on the healthcare team that can assist you with working out a plan.

Younger children will probably notice that something important is happening but nothing more specific. What understanding they have will depend on their age.

Things that will probably help:

Things that probably won’t help:

There are professionals (e.g. psychologists, social workers, counsellors) who can help you with these situations. Members of the healthcare team will be able to assist or refer you to an appropriate service.

Prostate cancer can bring you closer to family and friends. Many people talk about how much they enjoy the time spent together, being able to talk together, sharing in the journey, and learning to appreciate the good things about each other. Being able to maintain your own dignity and having a good quality of life are positives people identify as important at this time.

Talking to others

As a carer, and sometimes as a partner, it is your obligation to the person you are caring for not to go outside what they are ready to have discussed with people. Only you and the person you care for can know when you are ready to let people know about prostate cancer. Supporting and communicating with each other will be necessary to work out a strategy for discussing this cancer journey with people. Clarifying who to speak to, how to ensure confidentiality and what information to give to others are important decisions you both need to make.

Some of the advantages of talking with other people are that they can:

Support groups

You may feel cut off from your community, friendships and other supports. Family and friends may have withdrawn and you feel as though you have lost:

One way to connect to other people who are in a similar situation to you is by joining a support group. Partners and carers can feel empowered in their caring role after talking to other people who understand. They can also gain practical tips along the way.

Research suggests that people who join a support group feel:

Research shows that people who join a support group feel:

• A sense of belonging
• A sense of community
• As though they are not alone
• Accepted and supported
• Empathy
• Understood
• As though they are being cared for
• Safe to express their feelings and fears.

There are support groups specifically for partners and carers of men with prostate cancer, please visit www.pcfa.org.au. In addition to face-to-face support groups, telephone and internet support are also available (for contact details, please see the ‘Organisations and services’ section further on).

The GP

The GP can help coordinate care and provide you and your partner or the person you’re caring for with support and information to help you make informed choices about treatment and care. The GP can also help with the management of ongoing physical and emotional health needs your partner or the person you’re caring for may have throughout the cancer journey.

The healthcare team

As mentioned at the start of this booklet, you will meet a number of health professionals (the healthcare team) who can provide advice on treatment and support relating to the prostate cancer care and support role. This team of medical and allied health professionals will meet to discuss the best treatments and support for your partner or the person you’re caring for, and will develop a specific plan to enable support and follow-up care.

Generally, there is a member of the healthcare team who will be the main contact person for the man you are caring for. This person may change during the cancer journey. If you’re unsure who this person is, ask one of the health professionals. The contact person can talk with other health professionals on your behalf to make sure all your health care questions are answered.

The benefits of having a healthcare team include:

Health professionals

There are other forms of support available to you. Under the Medicare Benefits Schedule (MBS), people who have a chronic medical condition (e.g. cancer) are able to access the following services: multidisciplinary care, Aboriginal and Torres Strait Islander health practitioner, Aboriginal health worker, audiologist, chiropractor, diabetes educator, dietician, exercise physiologist, mental health worker, occupational therapist, osteopath, physiotherapist, podiatrist, psychologist and speech pathologist (see www.health.gov.au).

Specifically relating to mental health, also through the MBS, the Better Access initiative allows the man you are caring for to get Medicare rebates for selected mental health services offered by GPs, psychiatrists, psychologists and eligible social workers and occupational therapists (see www.health.gov.au/mentalhealth-betteraccess).

The words listed below are used in this booklet, and you are likely to hear used by members of the healthcare team.

Advanced prostate cancer Prostate cancer that has spread to surrounding tissue or has spread to other parts of the body.

Biopsy - The removal of a small amount of tissue from the body, for examination under a microscope, to help diagnose a disease.

Cancer - A term for diseases in which abnormal cells divide without control.

Cells - The building blocks of the body. Cells can reproduce themselves exactly, unless they are abnormal or damaged, as are cancer cells.

CT (computerised tomography) scan - The technique for constructing pictures from cross-sections of the body, by x-raying the part of the body to be examined from many different angles.

Cultural engagement - Actively involve people with respect to their cultural needs.

Diagnosis - The identification and naming of a person’s disease.

Digital rectal examination (DRE) - An examination of the prostate gland through the wall of the rectum. Your doctor will insert a finger into the rectum and is able to feel the shape of the prostate gland. Irregularities in the shape and size may be caused by cancer.

External beam radiotherapy (EBRT) - Uses x-rays directed from an external machine to destroy cancer cells.

Grade - A score that describes how quickly the tumour is likely to grow.

Locally advanced prostate cancer - Cancer which has spread beyond the prostate capsule and may include the seminal vesicles but still confined to the prostate region.

Lymph nodes - Also called lymph glands. Small, bean-shaped collections of lymph cells scattered across the lymphatic system. They get rid of bacteria and other harmful things. There are lymph nodes in the neck, armpit, groin and abdomen.

Lymphoedema - Swelling caused by a build-up of lymph fluid. This happens when lymph nodes do not drain properly, usually after lymph glands are removed or damaged by radiotherapy.

Magnetic resonance imaging (MRI) scan - Similar to a CT scan, but this test uses magnetism instead of x-rays to build up cross-sectional pictures of the body.

Metastatic prostate cancer - Small groups of cells have spread from the primary tumour site and started to grow in other parts of the body – such as bones.

Multidisciplinary care - This is when medical, nursing and allied health professionals involved in a person’s care work together with the person to consider all treatment options and develop a care plan that best meets the needs of that person.

Perineal (perineum) - The area between the anus and the scrotum.

Prognosis - The likely outcome of a person’s disease.

Prostate cancer - Cancer of the prostate, the male organ that sits next to the urinary bladder and contributes to semen (sperm fluid) production.

Prostate gland - The prostate gland is normally the size of a walnut. It is located between the bladder and the penis and sits in front of the rectum. It produces fluid that forms part of semen.

Prostate specific antigen (PSA) - A protein produced by cells in the prostate gland, which is usually found in the blood in larger than normal amounts when prostate cancer is present.

Quality of life - An individual’s overall appraisal of their situation and wellbeing. Quality of life encompasses symptoms of the disease and side effects of treatment, functional capacity, social interactions and relationships and occupational functioning.

Self-management - An awareness and active participation by people with cancer in their recovery, recuperation and rehabilitation, to minimise the consequences of treatment, promote survival, health and wellbeing.

Shared decision- making - Integration of a patient’s values, goals and concerns with the best available evidence about benefits, risks and uncertainties of treatment, in order to achieve appropriate health care decisions. It involves clinicians and patients making decisions about the patient’s management together.

Stage - The extent of a cancer and whether the disease has spread from an original site to other parts of the body.

Staging - Tests to find out, and also a way to describe how far a cancer has spread. Frequently these are based on the tumour, the nodes and the metastases. Staging may be based on clinical or pathological features.

Support group - People on whom an individual can rely for the provision of emotional caring and concern, and reinforcement of a sense of personal worth and value. Other components of support may include provision of practical or material aid, information, guidance, feedback and validation of the individual’s stressful experiences and coping choices.

Supportive care - Improving the comfort and quality of life for people with cancer.

Survivorship - In cancer, survivorship focuses on the health and life of a person with cancer beyond the diagnosis and treatment phases. Survivorship includes issues related to follow-up care, late effects of treatment, second cancers, and quality of life.

Testicles - Organs which produce sperm and the male hormone testosterone. They are found in the scrotum.

Testosterone - The major male hormone which is produced by the testicles.

Tumour-Node- Metastasis (TNM) System A staging system used by clinicians to describe how advanced a particular cancer is, which then informs the type of treatment provided.

Tumour - An abnormal growth of tissue. It may be localised (benign) or invade adjacent tissues (malignant) or distant tissues (metastatic).

Urethra - The tube that carries urine from the bladder, and semen, out through the penis and to the outside of the body.

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