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Excerpted with permission from A Guide to Coping with Gynecological Cancer, a booklet produced by the Regional Women's Health Centre of Toronto Women's College Hospital, DES Action, and Willow Breast Cancer Support and Resource Services. The entire booklet is available online (English only) here.
Being told you have a gynecological cancer is a very scary experience.
Gynecological cancers include cancers of the: vulva, vagina, cervix, uterus, endometrium, ovaries, fallopian tubes, and labia. Beginning to accept the reality of the diagnosis can be very hard. The meaning of what the doctor has said can take time to sink in.
With all the information coming at you and all the information not coming at you, you shut down emotionally. It became all foggy. I had to focus only on getting through. - Anne-Marie
You may feel angry or sad about what is happening to you, and anxious about what's coming next. You may also be wondering, why me? Most of all, you will probably be concerned about surviving.
Relating To Medical Professionals
Having confidence in your treatment and health care team may ease some of your anxiety. If you can, seek out a doctor who is a good 'fit' for you, someone who gives you the kind of medical care, information and support you need. Try to change doctors if the one you are seeing is not treating you in a way that meets your needs.
It can be difficult to assert your needs with health professionals. Remember you are the most important person on the health care team, and that you have the right to have them work with you.
Never be afraid to ask questions. If there is something you need, ask. If they say no, you haven't lost anything. - Anne-Marie
Absorbing the information being given to you, and remembering to ask all of your questions during a short doctor's appointment can be overwhelming. Here are a few ideas other women with cancer have had for keeping track of what your doctors say and making sure you get the information you need:
Take a supporter along, a friend or family member.
Make a detailed list of your questions with space for answers. Have a copy for yourself, one for your supporter and one for the doctor. Your supporter may be able to take the most detailed notes. If something does not make sense to you, ask the question differently, or ask the doctor to explain the answer in a different way. Check your understanding of what was said by repeating the information back to the doctor.
Imagine what is being explained to you in as much detail as you can. Your doctor may be able to draw or give you a picture that will help.
Take a tape recorder with you, and let the doctor know you want to record what is said. This saves you from taking notes. It also allows other family members or friends who want to understand more about your situation to hear the conversation between you and your physician themselves, if you want them to.
Ask the specialist's office to send all reports to your family physician. Your family physician might have more time to talk with you about your feelings, test results, and options.
Taking Care of Your Feelings and Needs
Sometimes you may feel very alone dealing with your cancer, even if you are surrounded by family and friends.
Many women find nighttime the hardest. One woman suggested having music, a good book, comfort food or anything else that will help you feel safe when you wake up in the middle of the night. It may help to line up a few friends who don't mind if you call late at night.
I would be alone in the middle of the night and be afraid...It's not that people didn't want to be there with me...It's just that I felt so alone....Within, so apart. - Linda
Talking with other women who have had gynecological cancer can be really helpful. It can be a real relief to talk with someone whose reactions you do not have worry about, someone who has been there and understands in a way that friends and family cannot.
Sometimes you may want to be alone, on your own in a quiet place to sort through all of your feelings. Try to create alone time for yourself when you need it.
Even though life is out of control, there are still ways to make choices. - Patti
Consider seeking professional help to help cope with your changing feelings, roles, relationships and self-image. A counsellor can also give you the opportunity to deal with feelings that are difficult to express to family, your spouse, partner or friends.
Seeing a counsellor has helped, because my partner and I were not talking about it.
You may also want to check out a support group, a spirituality group, or art therapy. Most urban centres offer a wide variety of support services.
I've been trying to do things that make me happy. - Carol
Writing in a journal can also be a source of comfort. You may want to keep one journal for your personal feelings and another for a log of doctor's appointments and treatments.
The mind is busy and powerful put it to work in a positive, hopeful way. - Chris
For some women, being positive, having a hopeful outlook, is very important. At the same time, keeping your negative feelings bottled up can be very hard on you. It is important to allow yourself to feel sad and scared so that you can deal with these feelings, and other people can help you through them. One woman said that this time, though terrible, can be an opportunity to work through old feelings and move on to focusing on healing and creating a better future.
It has taught me that every day is special and that the fear does not go away. I feel my feelings. My heart is open. - Linda
Seeking support is also extremely important.
At a practical level, you may want to try to establish a good diet for yourself.
If you are interested, do some research, and/or talk with people about alternative remedies, therapies and treatments. Complementary therapies may help you feel that you are taking an active role in your health, especially when medical treatment is completed.
As well, once your treatment is over, you may find that your feelings about what you have been through come to the surface. Most of the women we spoke with talked about gynecological cancer as a journey. Talking, thinking, and reading can help you adjust to your changed sense of self and the changes in your body.
At times I never thought I would get through it. But I did somehow you find what you need, in yourself and around you. - Lily
Other sections of A Guide to Coping with Gynecological Cancer cover Dealing with Infertility, Work and Money, Body Image, Creating a Support Network, plus Places to Go & People to Call.
Single copies of the booklet can be ordered at no cost within Canada by calling the Cancer Information Service 1-888-939-3333.
For more information on the booklet, or for bulk orders, contact:
The Gynecological Cancer and Endometriosis Network
Adelaide Resource Centre For Women
67 Adelaide Street East
2nd Floor, Health Centre
Toronto ON M5C 1K6 Canada
Tel: (416) 392-9282
Fax: (416) 392-9238
Disclaimer: This material provides general information and is not intended as a substitute for professional advice. If you think you need medical advice, please see your health professional.