‘You don’t hear too much after you’ve been told by the urologist that you’ve got prostate cancer, your head is just in a whirl.’
You may have been dealing with prostate cancer for a long time, you may have just discovered you have prostate cancer, or you may have recently discovered your cancer is more advanced than you first thought. You may be experiencing a range of feelings, from anger to fear, shock, guilt and loneliness. Whatever you are feeling, it is likely those around you may be experiencing similar emotions.
Fear and shock
As prostate cancer advances, there are times when the whole experience may be frightening. You may feel afraid of:
- being left alone
- being responsible for taking your own medications or confusing them
- dealing with new people and situations
- not knowing what to do
- not knowing the best decisions to take
- dealing with your failing health
- being faced with the possibility that you may die
- making the wrong decision
- the uncertainty of what will happen next.
Often, it helps to learn more about prostate cancer. However sometimes people decide they do not wish to know more. Either way, it is important to find ways to feel as much in control as possible. Focus on the things that you can control. Most men reach a point when their different care choices and arrangements change due to altering situations or advancing illness. For some men with advanced prostate cancer, a time comes when they may think about and choose to discontinue treatments they find unpleasant.
Anger and frustration
Feeling angry and frustrated are normal reactions for people who are living with advanced prostate cancer. Anger and frustration often go together – when things do not go the way we want them to. Anger is also linked to other negative emotions, or may be a response to them – you may be feeling hurt, frightened, or disappointed. For some people, it may be easier to express the anger, rather than the feelings underneath it, such as sadness or hurt; for others, anger may get buried under tears or sadness.
You may feel angry, frustrated and resentful at:
- having to be cared for
- no longer being the bread winner in the family
- the burden of extra responsibilities of medical and health care along with managing home, finances, family matters and work
- family members who don’t pull their weight
- feeling isolated or abandoned by family and/or friends
- friends who don’t make contact at a time when more social support is needed
- the fact that prostate cancer has interrupted your plans and dreams for the future
- not being listened to by health professionals
- not having clear information about the best way you should be treated or what is going to happen to you.
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 increased anxiety and depression. Some of the treatments for your prostate cancer, such as hormone therapy and chemotherapy, may alter how you feel and would normally react to situations. Understanding some of the things that may be making you angry can help you to deal with them better. You may also be able to learn strategies to deal with these emotions.
- Recognise the situations that make you angry and make a list of them. If you know what makes you angry, you may be able to avoid some situations, or do something different when they happen.
- Notice the warning signs of anger in your body (tense jaw, heart beats faster, feeling hot, shaking, feeling out of control).
- Take time out. Step outside the room and go for a walk – Try relaxation techniques like controlled breathing.
- Talk to your healthcare team about ways to manage your feelings.
Feeling guilty is a common emotion experienced by men with advanced prostate cancer. You may feel guilty about:
- not having cared for your health earlier in life
- feeling you are not doing a good enough job as a family member
- feeling angry and/or resentful
- wanting a break from your illness and treatments
- resenting that people around you are healthy and well
- being embarrassed by changes in your body and emotions.
You may be able to learn some ways to manage your guilt:
- recognise it and say it out loud (‘I feel guilty for … ’)
- look for the causes of guilt
- ask for help – talk to a trusted friend, family member, health professional
- do not use the words I SHOULD or I MUST – they just make you feel more guilt!
‘I think there’s very much a feeling that you’re going it alone.’
Isolation and loneliness are common feelings reported by men with advanced prostate cancer. Maybe your family and friends don’t contact you as often – perhaps they think you are too busy or they just don’t know how to talk to you about your illness. You may feel too tired or busy to socialise and take time out for yourself. When people are facing a life threatening illness, it is common that their priorities change.
‘The thing that happened for me when my prostate cancer advanced, I worked out what was most important to me. I just couldn’t do what I used to.’
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 may like to try to:
- keep in touch with family and friends more regularly – this can be in person, through phone calls or emails and social media (e.g. Facebook)
- accept help from others
- join a support group or network for people with advanced prostate cancer so you’re around other people who understand some of what you are going through. Locations of support groups can be found at www.pcfa.org.au.
The physical and emotional demands of coping with advanced prostate cancer are high. You need to look after yourself or the demands of treatment and changed responsibilities can wear you down. You need care and support for yourself as well as others you are close to.
Stress can be caused by managing changing treatment regimens. It can be exacerbated by side effects of some medications. As time goes on, your needs and concerns may change and lots of different emotions may arise – adding to your stress. You may also have to adjust to changes in your lifestyle, or find that you are taking on more responsibility for yourself or others. All this can feel overwhelming.
Symptoms of stress may include trouble sleeping, headaches, heart problems and emotional signs such as feeling tired, unwell or oversensitive. If high stress levels continue for a long time, you may experience exhaustion and burnout. Some strategies that may help you deal with stress include:
- exercise regularly (even if it is just a walk around the block)
- learn meditation and other relaxation techniques
- do something you find relaxing (listening to music, reading a book)
- talk to someone you trust, join a support group or talk to a health professional
- rest and try to get enough sleep
- eat proper meals that are nutritious and limit alcohol and other drugs
- take time out
- speak to a health professional about ways to manage your stress levels.Maintaining
Everyone feels anxious from time to time, but some people may experience these feelings often and strongly. With all the stresses and worries you are facing, sometimes it is hard to know whether you have a problem with anxiety. Anxiety is common amongst men with advanced prostate cancer.
Anxiety disorders can be treated with medication or psychotherapy, or by a combination of the two.Some warning signs:
If for a long period of time you have:
- been worried and have found it hard to stop worrying
- your anxiety has made it hard for you to do everyday activities.
If you have experienced any of the following:
- felt sweaty and/or shaky
- your heart rate has increased
- you have felt short of breath and/or like you are choking
- you have felt nauseous, dizzy, faint and/or light headed
- you have felt numb or tingly
- you have hot or cold flushes
- you have felt scared.
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. General practitioner (GP), psychologist, social worker or qualified counsellor).
‘I found the hardest part was that – I needed tactile support. I would wake up in the morning just crying.’
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 is not just a ‘mood’ that someone can ‘snap out of’.
Depression among men with advanced prostate cancer is common. This may be related to the illness experience, it may be a side effect of the treatments, or it may be caused by other life and family concerns. Mood changes are particularly common in men who are receiving hormone therapy, also known as androgen deprivation therapy (ADT). Some warning signs:
If for a period of at least 2 weeks you have:
- felt sad or empty
- felt irritable or frustrated
- felt helpless and/or hopeless
- had problems concentrating
- lost confidence in yourself
- felt guilty and/or worthless
- been worrying all the time
- had problems sleeping
- lost interest in things that you used to find enjoyable
- noticed a change in your appetite
- felt more physical health problems, like pain or fatigue
- had thoughts of wanting to die.
Things you can do to help yourself:
- try to do at least one thing every day that you enjoy
- do some gentle exercise
- keep up or resume your sporting activities (e.g. swimming, walking)
- improve your sleeping patterns by talking to members of your healthcare team (e.g. psychologist, nurse) about ways that can help you to get a good night sleep
- try to manage your stress before it gets too much by talking to members of your healthcare team (e.g. psychologist or GP) about ways that can help you manage your situation.
Suggestions for dealing with a bad day:
- do not lie around in bed – get up as soon as you wake up
- catch up with friends, either in person or on the phone
- do some relaxation
Depression is a serious illness and treatments are available that can help.