Finding Support

Everyone needs support to get through stressful situations. Half the battle is recognizing that you need help, the other half is asking for it. Here are some strategies to help you get the support you need:

1. Tap the natural support system that you may have among family and friends for emotional support, companionship, and practical help.

  • Seek out family members and friends who are willing to give you support.
  • When people offer to help, accept their offer.
  • Set aside a specific time within the week to talk with important people in your life.
  • Think of things that people could do to be of assistance. Be specific about your needs.
  • Plan a time to talk to someone or seek support. Make it happen.
  • People are willing to help if they know that you are willing to receive help.
  • Join a support group.

2. Support groups help you realize that others are going through a similar situation. You are not alone. Others can verify that your worries and fears are "typical" or "normal".

  • Ask your loved one's doctor or a nurse for help in finding a support group.
  • Not all support groups are the same. Pick one relevant to your situation.
  • Support groups are good forums for exchange about resources, coping strategies, and friendship.

3. Seek professional help from a psychologist, counselor, or clergy.

4. Practice effective communication with family and friends.

  • Try to be open about your feelings. Let them know how you feel - what bothers you, and what concerns you.
  • If you need a specific kind of help or support, ask for it. Be straightforward.
  • Don't assume family and friends know what you need or want - you have to tell them.

5. Spend time with people who support you.

  • Avoid people who are critical or negative.
  • Surround yourself with positive people.
  • Optimism and a positive outlook are contagious.

6. Plan for social interactions.

  • Disclose only those aspects of your loved one's illness that you are comfortable disclosing.
  • Plan ahead and consider both positive and negative responses that you may get from others. Be ready for both.
  • Think about how you want to respond to questions about your loved one's illness.
  • Role-play the responses you would give with a friend.

Obtaining Accurate Information About Ovarian Cancer

The first and most important step in getting accurate information is for you and your loved one to find a skilled physician. Ovarian cancer requires treatment by a physician who has been specially trained. These physicians are called "gynecologic oncologists" and they have received extensive training in the surgical, medical, and supportive care of women with ovarian cancer. Several organizations have information to help you find a good gynecologic oncologist:

  • The Society of Gynecologic Oncologists (SGO) and its consumer group, the Foundation for Women's Cancer, maintain a membership directory of Gynecologic Cancer specialists. You can reach them by phone at 1-800-444-4441 or via the internet at www.foundationforwomenscancer.org.
  • The National Cancer Institute also offers important suggestions and information resources to help you with these important decisions. www.cancer.gov/cancertopics/factsheet/Therapy/doctor-facility

Doing your own research

Tap into organizations that have been created specifically for women with ovarian cancer. They often serve as a hub for important information as well as a way to connect with others who have gone through the same experience you are going through.

Some of the best resources include:

Realize that you're not going to find the definitive cure for ovarian cancer. You will find, however, information about the best current treatment options. Decide in advance how much or how little research you want to do. Try to set limits on how much time you devote to research. It's important to be well-informed, but be aware of how it is making you feel and whether it interferes with other things in your life. Share your findings with your loved one's doctor. They can help you relate the information you find with your loved one's particular situations.

If you want to find original research articles, there are two medical databases available on-line:

  • Medline/PubMed: www.nlm.nih.gov allows you to search abstracts from 4,500 medical journals.
  • CancerLit: www.cancer.gov/search/cancer_literature allows you to search from over 4,000 sources. You can also chat online with information specialists who can help you with your search.

Evaluate the quality of the information you find on the internet. Consider the following criteria when accessing information:

  • What is the mission of the site? Is it to provide information, support, advice, or to sell a product?
  • Who produces the site? Is it an academic center, a government agency, a private citizen, a non-profit group, or a for-profit group?
  • What is the reputation of the resource? How long has it been in existence?
  • Are sources of funding for the site disclosed and do they reflect any potential for bias?
  • Is there an editorial board or a review process? What are site authors' or site editors' qualifications?
  • Is the material up-to-date? Does the site post a current date and a "last revision" date?
  • Does the information make sense and is it consistent with information you have read elsewhere?

Find a good guidebook for ovarian cancer. Much of the above information can be found in more detail in the book: Ovarian Cancer: Your Guide to Taking Control: by Kristine Conner and Lauren Langford. Published by O'Reilly and Associates, 2003.

Top 10 Ways to Help Reduce Your Stress When Your Loved One Has Been Diagnosed with Ovarian Cancer

There are programs, services and care techniques that can help reduce the burdens and stress after a loved one has been diagnosed with ovarian cancer.

  1. 1. Get a diagnosis as early as possible and understand usual patterns of disease and treatment so you know what you are dealing with. Help find a good gynecologic oncologist to perform your loved-one's surgery and direct her care.
  2. 2. Know what resources are available. For your own well-being and that of your loved one, become familiar with resources available in your community. In-home assistance, visiting nurses and Meals On Wheels are just some of the community services that can help.
  3. 3. Become an educated family member/friend. If the cancer progresses, different skills and capabilities will be necessary. Care techniques can help you better understand and cope with many of the challenging issues that may arise.
  4. 4. Get help. Trying to do everything by yourself will leave you exhausted. The support of family, friends and community resources can be an enormous help. If assistance is not offered, ask for it. If you have difficulty asking for assistance, have someone close to you advocate for you. If stress becomes overwhelming, don't be afraid to seek professional help. Support group meetings and phone helplines are also a good source of comfort and reassurance.
  5. 5. Take care of yourself. Family members frequently devote themselves totally to their loved one with cancer, and in the process, neglect their own needs. Pay attention to yourself. Watch your diet, exercise and get plenty of rest. Take time off for a favorite hobby, shopping, a movie, or an uninterrupted visit with a friend. Those close to you want you to take care of yourself.
  6. 6. Manage your stress. Stress can cause physical problems (blurred vision, stomach irritation, lack of concentration, loss of appetite). Note your symptoms. Use relaxation techniques that work for you or consult a physician.
  7. 7. Accept changes as they occur. Sometimes, loved ones may require care beyond what you can provide at home. A thorough investigation of available care options should make transitions easier; so will support and assistance from those who care about your loved one.
  8. 8. Do legal and financial planning. Consult an attorney and discuss issues related to durable power of attorney, living wills and trusts, future medical care, housing and other key considerations. Planning now will alleviate stress later. If possible and appropriate, involve other family members in planning activities and decisions.
  9. 9. Be realistic. Neither you nor your loved one can control many of the circumstances that will occur. Give yourself permission to grieve for the losses you experience, but also focus on the positive moments as they occur, appreciate the value of each day, and enjoy your good memories.
  10. 10. Give yourself credit, not guilt. You're only human. Occasionally, you may lose patience and be unable to provide all of the comfort, support, and care the way you'd like. Remember, you're doing the best you can. Being a devoted family member or friend is not something to feel guilty about. Your loved one needs you and you are there. That's something to be proud of.

Where can I get more information?

Call the National Ovarian Cancer Coalition at 1-888-OVARIAN (682-7426) or www.ovarian.org
Call the National Coalition for Cancer Survivorship at: 1-888-YES-NCSS (937-6277) or www.canceradvocacy.org
Call the National Cancer Institute at: 1-800-4-CANCER (22-6237) or www.cancer.gov/cancerinfo
Call the American Cancer Society at: 1-800-ACS-2345 (227-2345) or www.cancer.org
Call the Family Care Research Program at: 1-517-353-0306 or www.cancercare.msu.edu
Visit the National Family Caregiver Alliance at: www.caregiver.org or call 1-800-445-8106
Visit the AARP website at: www.aarp.org or call 1-888-687-2277

Credits

The "When a Loved One has Ovarian Cancer" publication has been adapted for friends and family members of women with ovarian cancer by Heidi Donovan, PhD, RN and Paula Sherwood, PhD, RN University of Pittsburgh School of Nursing;

From "The Caregiving Toolkit" by Barbara Given, PhD, RN, FAAN, Michigan State University

Courtesy of the Family Care Research Program at Michigan State University www.cancercare.msu.edu

We would also like to thank Amie Lefort for her work on the original toolkit.

Dr. Heidi Donovan is an Assistant Professor at the University of Pittsburgh School of Nursing. Her research, education and advocacy efforts focus on improving symptom management and quality of life for women after a diagnosis of ovarian cancer and on increasing ovarian cancer awareness among the general public. Much of her work is conducted in collaboration with the National Ovarian Cancer Coalition. She is on the National Ovarian Cancer Coalition's National Medical Advisory Board and is an active member of NOCC - Pittsburgh Division.

Dr. Paula Sherwood is an Assistant Professor at the University of Pittsburgh School of Nursing. Dr. Sherwood conducts research on the experience of caring for a loved one with brain cancer in order to develop programs to reduce the stress that can be associated with being a family caregiver.

Dr. Barbara A. Given is a University Distinguished Professor at the College of Nursing at Michigan State University and a Senior Scientist at the Mary Margaret Walther Cancer Institute. Dr. Given has conducted research in the area of persons with cancer and their caregivers for over 15 years to identify ways to alleviate the distress that may accompany providing care.

This information was funded by a grant from Office Depot and Xerox Corporation in memory of Alana Long Croft.

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