An enormous challenge for people when cancer is diagnosed is learning all the complex medical features of the condition. Cancer treatment has advanced over recent years and patients now have more options. They are also now more involved in their treatment plan. Radiation therapy and/or chemotherapy often take place in an outpatient setting, it allows for greater freedom. However, it also means that patients and their care-givers may spend less time with medical staff and other members of their treatment team allowing for greater responsibility for one’s own personal care.
So how do you cope with this situation?
- Get to know all the members of your team and learn how each one helps you.
- Identify who is in charge of your care during your treatment and channel all information through them.
- During regular clinic visits take notes or ask a family member to take notes.
- Ask your doctor if you can tape-record your visits, allowing you to later listen to all the information presented.
- Ask your doctor, nurse or allied health professional to recommend books, brochures, and websites.
- When visiting different websites or hearing about clinical trials or new treatments, write down questions for your next doctor's visit.
- Look for reputable educational sources about your cancer. Remember everything on the Internet may not be as it is presented.
- As a health care consumer, it is your right to have a good health care team that listens to your questions and concerns.
Dealing With the Emotional Impact
A diagnosis of cancer can be terrifying and overwhelming. Many will experience feelings of helplessness and hopelessness and question whether they know how to deal with these feelings. Some people may be reluctant to tell their doctor or even other members of the treatment team about their concerns because they don't want to upset anyone or distract the treatment team from the main focus of treatment.
Everyone is different; unique, therefore it is natural for emotional needs to vary between individuals depending on life-stage, age, presence of family and friends, access to medical care, and other factors. Grief, loss, sadness and helplessness may be experienced when confronted with cancer.
After cancer life may be different, however there are many things that may assist with dealing with the emotional impact of cancer.
Try:
- Keeping track of your feelings. Some find it helpful to keep a journal or record their emotions through photography, drawing, painting, music, or other expressions.
- Sharing your feelings with people close to you.
- Telling your treatment team about your feelings. Sometimes, a referral for counselling or a medicine for anxiety or depression may assist.
- Seeking individual counselling with a professional. Oncology social workers, psychologists, and psychiatrists can help you deal with many complex emotions.
- Joining a support group or buddy program. Support groups may help you feel less isolated. They provide reassurance, suggestions, and insight, allowing you to share similar concerns with your peers in a safe and supportive environment.
Advice for Caregivers:
Being a caregiver can be a full time job. Focusing on your own needs is an important part of that job.
The following tips may assist:
- Organise help: Make a decision on which of the patients needs can possibly be best met by you, the care giver and which needs may require assistance. Accept help from other family members, friends and colleagues or neighbours if it has been offered. Do not be afraid to ask for assistance if someone is hesitant in offering. Ask the Oncology Social Worker which services may be available in the wider community and is there a cost.
- Seek support: If able, then attend a support group for caregivers, a shared experience can be beneficial. Or seek individual, couple or family counselling to explore the complexities of being a caregiver.
- Use your health care team as a resource: Prepare questions and note the answers. Seek other members of the team as supports eg. physiotherapist, occupational therapist, dietitian, oncology nurse, pharmacist, etc.
- Assess carers respite services or Neighbour Aid: Taking a break from caring from a couple of hours to a few weeks is important for your well-being. Check if respite services are available in your area. Or ask the Oncology Social Worker to link you to these services.
- Take time out: A long bath, a walk, reading a book. Do something good for yourself; just sitting in a chair with music in the background or with a pet on your lap can help in the tough times.
Resources and Links for patients and families
Couples Confronting Cancer
Joy L. Fincannon, RN, MS, Katherine V. Bruss, PsyD
Published by the American Cancer Society
ISBN: 0-944235-25-5 ©2003, paperback, 288 pages
Cancer in the Family Helping Children Cope with a Parent's Illness
Sue P.Heiney, PhD, RN, Joan F. Hermann, MSW, LSW, Katherine V. Bruss, PsyD, Joy L. Fincannon, RN, MSPublished by the American Cancer Society
ISBN: 0-944235-34-4©2001, paperback, 240 pages
Caregiving A Step-By-Step Resource for Caring for the Person with Cancer at Home
Peter S. Houts, PhD, Julia A. Bucher, RN, PhD
Revised Edition Published by the American Cancer Society
ISBN: 0-944235-45-X ©2003, paperback, 304 pages
Other Recommended Books
Mindfulness-Based Cancer Recovery: A Step-By-Step MBSR Approach to Help You Cope With Treatment and Reclaim Your Life
Linda Carlson, PhD, Michael P Speca PsyD
Published by New Harbinger Publications, 2011
Living with Leukaemia, Lymphoma and Myeloma: A guide for patients and their families
Pam McGrath Published by Researchman, 2008
Carers Australia
The members of Carers Australia are the state and territory Carers Associations.
Jim Bacon Foundation
Helpful Guide for Cancer Patients and Carers
Seniors.gov.au
Listed are some relevant programs and services available to carers.
Caregiver Resource Directory
This is a practical guide intended to help family caregivers feel less alone and overwhelmed. It offers resources, facts, and advice about caring for a loved one, as well as the caregiver. This resource guide can be downloaded.
National Alliance for Caregiving
Is dedicated to providing support to family caregivers and the professionals who help them and to increasing public awareness of issues facing family caregivers.
Carers Haven
CarersHaven.org is an Australian owned and operated site dedicated to bridging the gaps between carers and the community. We are an online support group for anyone who finds themselves in the caring role. It does not matter what condition you are caring for, the emotional needs are fundamentally the same for every carer.
Livewire Parents
Livewire Parents is a free and supportive online community for parents and carers of someone living with a serious illness, chronic health condition or disability.
Centrelink
Centrelink pays a range of benefits to eligible carers and people suffering an illness or disability.
Australian Securities & Investment Commission
Financial tips and safety checks
Australian Prudential Regulation Authority
Information on early release of superannuation
The Association of Superannuation Funds of Australia
Above site lists helpful links regarding Superannuation questions.
Superannuation Complaints Tribunal
The Superannuation Complaints Tribunal is an independent tribunal set up by the Commonwealth Government to deal with complaints about superannuation funds, annuities and deferred annuities and Retirement Savings Accounts.
The Financial Ombudsman Services
The Financial Ombudsman Services independently and impartially resolves disputes between consumers, including some small businesses, and participating financial services providers.
Australian Government Attorney's General Department
Gives information about the Legal Aid Program and provides links to each state's Legal Aid Commission.
National Association of Community Legal Centres
Community legal centres (CLCs) are independent, non-profit community organisations that provide free legal services to the public.
Also contact your state Cancer Council Helpline for further information & resources
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