Survivor's Guide
Loss and Grief

Change & Loss associated with Different Cancer Stages

Different stages of cancer bring different changes and losses. 
A cancer diagnosis can come as a huge shock. It can make you feel very frightened, out of control and unsure about your future. Even if you were expecting the diagnosis, you may still have these fears.

Having to wait between diagnosis and starting treatment may cause you to fear the cancer could get worse and spread to other parts of your body before you even begin treatment. You may be especially afraid of this if you have symptoms that seem to be getting worse. Your doctor will explain that it's unlikely your cancer will spread during this time, although you may still worry.

It's important you find out as much as you can about the type of cancer you have and its treatment. Knowing what to expect and making plans for how to move forward can help you cope better and ease the stress during this difficult time.

In the early stages of your illness you grieve for the loss of:
  • good health and well-being
  • your body as you have known it, because treatment may change your body
  • control over running the family home (getting the kids to school, shopping, paying the bills, being the breadwinner, looking after elderly parents,
  • or organising family functions)
  • being physically active: you may be afraid that symptoms and side effects will slow you down
  • freedom (life may now be full of attending medical appointments, having tests and beginning treatment)
  • income
  • social life
  • time to yourself and with those close to you
  • work and hobbies
  • a secure future and being able to plan ahead
  • privacy: you may feel like you have become ‘public property'
  • things you enjoyed even though they were not good for your health (such as cigarettes and/or alcohol).
People can suffer a huge sense of loss as they withdraw from an addiction to alcohol, nicotine and other drugs. For help with stopping smoking call the NCSM’s Smoking Cessation Clinic at 03-26987300.

Even if told treatment will help or cure their cancer, many people say they still have thoughts about dying. It's natural to feel afraid that you may never fulfil your future goals and dreams. Having cancer can turn your life upside down. Many people feel full of confusion, fear and uncertainty about their future. You may feel like you're already grieving for what could or should have been.
As treatment begins many people say they feel more in control of the situation. While there's still fear, knowing more about the cancer and treatment can help. However, you may now be more aware of other changes or losses that may affect you during treatment (especially chemotherapy) such as:
  • nausea and vomiting
  • loss of appetite
  • weight loss or weight gain
  • tiredness (fatigue)
  • hair loss
  • feeling low in mood (sad, anxious or depressed) or changes in mood such as being less patient, angry or ‘moody'
  • problems sleeping (unable to sleep or sleeping too much)
  • bowel changes such as constipation or diarrhoea
  • being more at risk of getting an infection.
Although these changes usually disappear once treatment finishes, it can be a ‘rough ride' for a while. Trying to stay positive and believe things will improve can be hard or even impossible when you're the one going through it. Others may keep telling you to ‘stay positive', ‘it will all be OK', ‘and just hang in there'! People often mean well but such clichés can be annoying and unhelpful for you at the time.

Permanent losses can be more difficult to cope with. These may include:
  • fatigue, which may change your ability to work and enjoy life as you used to
  • loss of fertility
  • changes in your ability and desire to have sex
  • loss of a body part and related functions
  • mood changes
  • hair loss from radiotherapy to the head area (this may be just a small patch on the scalp)
  • changes to the way you look or how your body functions.
Such changes can have a huge effect on a person's confidence, self-esteem and view on life. It's not surprising that many people grieve as they try to understand and adjust to changes brought by cancer and its treatment.

A loss may affect one person more than another. For example, certain chemotherapy drugs can damage nerves, especially in the hands and feet, causing numbness or ‘pins and needles'. This usually improves once treatment is over but it can take months. This may be a great loss to someone whose main hobby was knitting, sewing or playing piano or guitar. For someone else, it may just be an annoyance as they struggle to do up their buttons or tie their shoelaces.

It's important to give yourself time to adjust to any change. Be patient and kind to yourself and don't expect miracles. At first, it may feel like you'll never come to terms with certain things. But most people say they feel better in time and find a way to cope.

If you have close family and friends, accept their support as much as you can. You may not want to upset people by telling them your worries but you may be surprised by how much people will appreciate it and want to help you.

Call our NCSM’s Resource and Wellness Centre staff at 03-26987300, they can refer you to a cancer support group. Strong friendships are often formed in these groups, and people who would otherwise feel isolated and lonely can find support and laughter.
When treatment is over people have more time to think about their losses. You may think you should get on with your life and return to ‘normal', but it isn't always that easy. Returning to work, trying to resume your social life, your sex life or hobbies may be far more difficult than you imagined. You may begin to grieve for the life you once had and find it hard to create your ‘new normal' life.

While you can still live a fulfilling and rewarding life, it's important to remember that it will not be the same as before – cancer changes people's lives forever. This doesn't mean life has to be bad. With cancer can come a new and deeper appreciation of life and the realisation that you can cope with a major change. But it can take time to adjust and start enjoying things again.
Most people who have had cancer and been through treatment worry about their cancer coming back (recurrence). This is a very common fear, especially in the first couple of years after treatment finishes. It's often worse in the lead-up to and during regular check-ups with your doctor.

For some people the fear is so strong that it affects their day-to-day living. Any ache or pain may make them feel their cancer has come back. They become anxious and find no joy in life. They don't see that it's possible to enjoy anything again. Some say it's like living with a shadow – always there, no matter which way they turn. Although many survivors say with time the fear lessens, they're often still reminded of their losses at certain times, such as the date they were first diagnosed, follow-up appointments, Christmas, birthdays and other anniversaries. Hearing of someone else's diagnosis or death from cancer can also raise old fears.

You may wonder how long people who have had your type of cancer live. Your doctor is the best person to talk to about your situation. But they won't be able to tell you for sure what will happen. It can be hard not to have definite answers but most people say that with time you find a way of coping with the possibility of your cancer coming back.
Some people's cancer is too far advanced to be cured, or treatment that worked at first doesn't control cancer when it recurs. Living with the fear and uncertainty of having advanced cancer and knowing that it can't be cured can be overwhelming. Trying to live day to day and cope can be very hard for people with advanced cancer and their careers.

Your doctor won't be able to predict exactly how much time you have – it may be weeks or months or even years. However much time someone has, just living with the fear that you may die is far from easy.

Facing death at any stage in life means leaving people, places and things you hold dear. It's natural to grieve for these losses. And it's natural to want to share your hopes and fears with an understanding listener. You may be overwhelmed with all you feel you have to and want to do before you die. You're likely to feel very anxious at times. You may need to prepare a Will, organise your finances, and visit certain people and places. When talking things over with people you trust you may find grief and loss are not the only feelings you have. Talking about some of these issues with a Cancer Helpline nurse (call 1800-08-1000) may help you feel less isolated. They may be able to link you to a face-to-face, telephone or cancer support group for people who are going through similar experiences.

Some people feel it's important to find ways to feel calm. They want to be able to prepare their mind, body and soul for dying. A lot of people living with advanced cancer say how important it is to say goodbye to significant people: work colleagues, family and friends (near and far, old and new).
Written by Annie Angle, cancer nurse (Dip. Oncology Nursing, Royal Marsden, London). Reviewed by Voula Kallianis, Social Worker, St Vincent's Palliative Care Unit; Eugenia Georopoulos, Project Officer, Centre for Culture Ethnicity and Health; Wendy Thurling, Senior Bereavement Counsellor, Australian Centre for Grief and Bereavement; Jane Fletcher, Deputy Head, Cabrini Monash Psycho-oncology Research Unit and Director Melbourne Psycho-oncology Service; Associate Professor Michael Jefford, Medical Oncologist, Peter MacCallum Cancer Centre; Marie Craw; Nadia Montibellar; Neil O'Loghlen; Lesley Bawden; Meg Rynderman, Cancer Connect and Australian Cancer Survivorship Centre Volunteer; Majella Franklin.