People react in different ways when they learn they have bowel cancer. Feelings can be muddled and change quickly. Having tests for, or being diagnosed with, bowel cancer can be distressing for yourself and those close to you. It can also be difficult talking about bottoms and bowels, although many of us can laugh at a bit of ‘toilet humour’.
It may be helpful to talk about your feelings with family/whānau, friends or a health professional.
For more information about emotional support, you can read the Cancer Society’s booklet Emotions and Cancer. You can download a copy from the Cancer Society’s website (www.cancernz.org.nz).
Sometimes you may find that your family/whānau and friends do not know what to say to you when you have cancer—they may have difficulty with their feelings as well. Some people may feel so uncomfortable they avoid you. Others may expect you to lead the way and tell them what you need. You may feel able to approach people directly and tell them what you need, or you may prefer to ask a close family/whānau member or friend to talk to other people for you.
For more information about talking to friends and family/whānau members, read the Cancer Society’s booklet Cancer in the Family and our information sheet “Telling others about your cancer diagnosis”. You can get copies by phoning the Cancer Information Helpline 0800 CANCER (226 237) or by contacting your local Cancer Society office. You can also download copies from the Cancer Society’s website (www.cancernz.org.nz).
When you are diagnosed with bowel cancer, suddenly you are faced with decisions and emotions you never thought you would have to deal with. The thought of bowel cancer can be frightening in different ways. Your first thoughts may be:
- how serious is this?
- am I going to die?
- will I be cured?
- will I be able to do the things I usually do?
In the time after diagnosis, you may experience a range of feelings. Common reactions are anxiety, fear, sadness and, sometimes, anger. Such strong emotions can make you feel as if you are losing control of your emotions or your life.
When you have bowel cancer you have to deal with many things for the first time. No matter how you are feeling, support services are available to you. If you speak to your general practitioner or medical team, they can refer you to someone such as a counsellor or psychologist, who can help you manage these feelings.
Psychologists and counsellors
A psychologist or counsellor:
- encourages you to talk about any fears, worries or emotions you may be feeling
- helps you to work through feelings of loss or grief
- helps you resolve problems so that you can find more pleasure in your life
- teaches you ways to handle any anxiety you have
- shows you meditation or relaxation exercises to help ease physical and emotional pain
- helps you to communicate better with your family/whānau and friends.
To find a psychologist or counsellor, contact your general practitioner or your local Cancer Society office or phone the Cancer Information Helpline 0800 CANCER (226 237).
Social workers are available to help support you and your family/whānau through the social and emotional changes a cancer diagnosis brings. If you do not already have a social worker, your hospital doctor or nurse can arrange a referral.
- provide information and support to help you and your family/whānau cope with your cancer diagnosis
- help set up support services so you can stay independent at home
- help with accommodation if you need to travel away from home for treatment
- help make travel arrangements if you are having treatment out of town
- offer advice and information about financial support available
- make referrals to other support agencies
- take part in multi-disciplinary meetings.
Help may be available for transport and accommodation costs if you are required to travel some distance to your medical and treatment appointments. Your treatment centre or local Cancer Society can advise you on what sort of help is available.
Financial help may be available through Work and Income (0800 559 009). They will also have pamphlets and information about financial assistance.
Short-term financial help is available through Jobseeker Support. Longer-term help is provided through the Supported Living Payment. Extra help may be available, for example accommodation supplements and help with medical bills.
For more information about this subject, read the Cancer Society’s information sheets Benefits and entitlements and Benefits and entitlements: What happens when you apply for Work and Income support? You can get copies by phoning the Cancer Information Helpline 0800 CANCER (226 237), or by contacting your local Cancer Society office. You can also download copies from the Cancer Society’s website (www.cancernz.org.nz).
“It’s like a home away from home [Cancer Society accommodation]. We do all our own cooking and washing. You still have to look after those things yourself. It’s not like hospital. It’s really good to meet people, talk about it, but you’ve got your own room and your own time.”
Hospitals throughout New Zealand have trained health workers available to support your spiritual, cultural and advocacy needs. Community health workers based at your local marae, or a community-based Pacific health service, may be good sources of support. Hospital chaplains are also available to people of all faiths and no faith, and offer support through prayer and quiet reflection. Talk with your health care team about the services available.
New Zealand’s Code of Health and Disability Services Consumers' Rights states that everyone has the right to have an interpreter present during a medical consultation. If you do not speak English as your first language or you are deaf, you may find it helpful to use an interpreter when you have your hospital appointments. Speak to a member of your health care team about arranging interpreters in your local area.
Cancer can affect your whole family/whānau. You may want to offer support but not know how. Here are some suggestions that may be useful:
- Learn about bowel cancer and its treatment. This will help you to understand what the person you are supporting is facing. But be careful about offering advice.
- Talk about your feelings together and be honest about what worries you.
- Try not to worry about what to say. Often listening while they talk, or just being there with them, is a good way to show you care.
- Offer to go to appointments with them as a support person. You can take part in the discussions, take notes or simply listen.
- Respect that your family/whānau member or friend may want to talk to their doctor alone.
- Do not try to do too much. Give the person the opportunity to do things for themselves—they will probably appreciate the chance to be useful.
- Look after yourself and give yourself time to rest. Taking care of yourself will help you to take good care of them.
- You may find that other people want to know about the health of your loved one. It may be useful to ask one person to be a spokesperson for your family/whānau, who will share this information with others. Or you may like to use email or text messaging rather than talk to everyone yourself.
- Accept that sometimes you will need help from others. Consider joining a local support group and do not be afraid to ask for help from other friends or relatives, or from the services available in your community.
When a loved one is diagnosed with cancer, your routines and family/whānau roles may change. The person who was the major source of income may now be unable to work and may be dependent on others. A partner who used to share responsibility for doing household chores may now have to take on extra tasks or get a job.
Maintaining your usual social life and hobbies may be difficult or impossible for a while. Cancer is not a normal event, so it is important to acknowledge this and not try to carry on with everything as before. There are a number of things you can do that may help you cope. For example:
- prepare simpler meals
- be more relaxed about housekeeping standards
- ask family/whānau to help more around the house.
“I said to them, ‘Look, you just have to support me now. It’s my time.’ It was role reversal.”
For more information on this subject, you can read the Cancer Society’s booklet Supporting Someone with Cancer/Te Manaaki i Tētahi e Māuiui ana nā te Matepukupuku. You can get a copy by phoning the Cancer Information Helpline 0800 CANCER (226 237) or by contacting your local Cancer Society office. You can also download a copy from the Cancer Society’s website (www.cancernz.org.nz).
While your health care professionals will do everything they can to cure your bowel cancer, factors (such as the stage of your cancer at diagnosis) sometimes mean that their best efforts cannot cure you.
Advance care planning is about helping you to think and talk about the end of life, and about what treatments and care you might want.
You and your health care providers should be working together to ensure that your future care choices fit your needs. This will then guide your family/whānau and doctors when you can no longer tell them yourself.
Advance care planning is voluntary—no-one can make you do it. For more information on advance care planning, visit www.advancecareplanning.org.nz