Resources

While the journey can be overwhelming, there is support, hope and help available to all survivors.

You are not alone.

Survivor Resources

There are many issues a woman faces when living with ovarian cancer. While the journey can be overwhelming, there is support, hope and help available to all survivors. You are never alone!

The American Cancer Society has a comprehensive website with a search feature to help survivors and family members find resources. In addition, MOCA has compiled this list of links to programs that ovarian cancer survivors and the larger cancer community have found to be beneficial.

Transportation Assistance

  • Road to Recovery (Rides to Treatment) – This American Cancer Society program provides resources for cancer patients who have trouble getting to and from treatments.
  • Corporate Angel Network – Arranges free air transportation for cancer patients traveling to treatment using the empty seats on corporate jets.

Financial Assistance

  • Angel Foundation – A community resource that provides emergency financial assistance to people while receiving treatment for cancer.
  • Pay It Forward Fund – Provides assistance to women’s cancer patients to help pay their bills while they undergo treatment at North Memorial, Unity, Mercy or Monticello-Big Lake Hospitals.  Covers essential living expenses.
  • Financial Grants for Adoption – Lists numerous organizations that offer financial assistance to those looking to adopt.
  • Patient Advocate Foundation – The Patient Advocate Foundation is now offering co-pay relief to qualifying women with ovarian cancer.
  • Cancer Care – Provides assistance for cancer-related costs and co-pays, and professional oncology social workers can help you find additional resources.

Household Assistance

  • Lotsa Helping Hands – Free, private, web-based communities for organizing friends, family, and colleagues – your ‘circles of community’ – during times of need. Easily coordinate activities and manage volunteers with our intuitive group calendar.
  • Open Arms – A Minnesota-based service, Open Arms provides home delivered meals to women with ovarian cancer in the Twin Cities.

Other Assistance

  • Alska – A secure platform created by an ovarian cancer survivor and healthcare professional. It helps patients and their caregivers better manage the details of care and more easily provide updates, coordinate tasks and store medical information. It is offered to MOCA members at no charge.  You can see a demonstration of Alska here.  To set up your care portal go to alska.com and click on the “Get Started” tab.  Email support@alska.com and tell them you were referred from MOCA.
  • Cancer Legal Line – Provides free legal information and resources for cancer patients and their loved ones.
  • Gilda’s Club – Emotional, social and psychological support community for everyone living with cancer.
  • Look Good… Feel Better – The Look Good… Feel Better program of the American Cancer Society is a community-based, free, national service that teaches female cancer patients beauty techniques to help restore their appearance and self-image during chemotherapy and radiation treatments.
  • Pathways Minneapolis – Pathways is a building, space, and a community. It is a place set aside for exploring ways to come to holistic health through classes, special events, and individual sessions.

Additional Resources for Young Survivors

Association of Cancer Online Resource (ACOR) An initiative of this organization includes a listserv dedicated solely to young survivors of all types of gynecologic cancers, including ovarian cancer. Members of this listserv include young survivors of MOCA, as well as young survivors of gynecologic cancers across the country and around the world. Click here to find out more about the listserv or to sign up.

Stupid Cancer Non-profit organization that addresses young adult cancer through advocacy, research, support, outreach, awareness, mobile health and social media.

Information on parenthood options can be found at: Fertile Hope.

Established in October 2001, Fertile Hope is a national nonprofit organization dedicated to providing reproductive information, support and hope to cancer patients whose medical treatments present the risk of infertility. This website also provides resources for alternative parenting options including egg donation, surrogacy, and adoption.

For information on domestic and intercountry adoptions, we recommend you look at: National Adoption Information Clearinghouse.

Congress created this organization in 1987 to provide free information on all aspects of adoption.

Caregiver Resources

Show support.

Be there with compassion and understanding, but put aside your desire to help. This will allow your partner, family member, or friend the time to reach a healthier state of mind. The first few weeks and months after diagnosis are often a blur for families. Remember that every family is different and that it is important to ask the family how they would like for you to be involved. Always assure the family that you are there to help them in any way that you can. It is also helpful to develop a list of things that you can do in case they cannot think of anything.

Help to establish a method of communication.

You can offer to be the person who gets on the phone to friends and gives updates. You can create a blog, website, or e-mail list where friends and family can go to for information. This is a valuable tool for a patient who may not have the energy to speak with everyone.

Inform yourself.

Learn about the patient’s diagnosis and treatment via the Internet or library. Do your homework and you will be doing her a favor. A good resource is the American Cancer Society website, which explains topics from cancer to diagnosis to treatment.

Prayers and positive thinking.

Don’t be afraid to offer up a word of prayer for your friend. Regardless of her spiritual practices, she and her family will appreciate your prayers. You can also send e-mails and cards with positive thoughts and understanding, but remember that she might not have the energy to reply right away.

Visitation.

Please be considerate of her feelings. If she requests that no visitors come by the hospital, then please don’t go. If she does, however, request that you come and see her, please do. She will be happy to see your smiling face.

Children and other family members.

No matter what you do, always remember that all family members need TLC too. It is very important to not disregard children. Their young minds can only comprehend the fact that mom/grandma is sick, yet they yearn for attention. You should also remember that older family members need support as well. You could offer to stay with the patient’s parents, take them out for coffee, or even be an emotional outlet for a sister or brother.

Daily life moves forward.

Daily tasks such as preparing meals, mowing the lawn, grocery shopping, and carpooling the kids can be done by organizing a pool within the neighborhood to disperse these various tasks among the neighbors.

Time is precious.

Due to the stresses of a family member with cancer, marriages can often become strained. Perhaps you can buy a gift certificate to a restaurant, babysit if needed, or buy a night at a local hotel for a couple to escape their stress for an evening. All of these things can help a couple become reconnected during such a stressful time.

Keep them busy.

During this process, she will spend a great deal of time waiting — in the doctor’s office, in the infusion room, etc. You can send over some great books, good articles, help her to get her computer set up for wireless Internet, find puzzle books, or buy her a journal. All of these will help pass the time.

Organize paperwork.

If you are great with paperwork, one big task that often is very overwhelming for families is the insurance paperwork and bills. You can offer to come in once a week and organize them for her in binders if you, and she, are comfortable with it.

Donate blood or platelets.

Cancer patients often need blood or platelets transfusions. If you are unable to donate your own blood or platelets, don’t get discouraged because you can still help. You can organize and gather other people who are able to donate, which is very helpful to the family.

Aiding financially.

The bills that arrive as a result of cancer treatment create a huge strain on a family’s finances. You can help by gathering a group of friends together and organizing a fundraiser and then buy gift cards to the local grocery store. Even $20 gift cards can buy milk and laundry detergent. Every little bit helps.

Talk about something else.

Always acknowledge the patient’s struggle, but she may want to hear about what is going on in your life. She does not need you to solve everything for her, but may just need you to talk to her about some great movies, the news, or what’s happening in the world today.

Cancer doesn’t end once active treatment is over.

Like most crisis situations, many people are there in the beginning and once things calm down, they are nowhere to be found. Be there to listen for what happens after treatment. That is an important role you can play for a friend.

Most of all, recognize that anything you do, whether it be large or small, can only help a friend in a time of need. That is truly a gift that she will need as she goes through her illness.

Originally printed in the Ovarian Cancer Research Fund Alliance (OCRFA) Connection newsletter. 

Online Support

When diagnosed with ovarian cancer or caring for a loved one with the disease, it is very easy to feel afraid and alone. Seeking support from others who are on the same journey can turn a terrifying experience into one filled with hope, strength, and inspiration. Besides the many MOCA support groups available, there are also online resources that can help you through your journey:

The Ovarian Cancer Research Fund Alliance (OCRFA) Support Community connects patients, families, friends, and caregivers for support and inspiration through their INSPIRE online support network.

The Association for Cancer Online Resources (ACORoffers access to mailing lists that provide support, information, and community to everyone affected by cancer and related disorders.