Patients and loved ones will find tools and support on this page that focus on empowerment and self-care and address:
>> Advocating for the Care You Want — Ocular Melanoma Foundation's Survey of OM Patients
Authors of a 2018 medical journal article that was based on results of a survey of ocular melanoma patients "propose a short list of standards of care for patients with ocular melanoma, as a basis for discussion and refinement." In the article's link above, go to the 7th page of the article (page 286 – table 3) for a printable list of their 20 suggested standards of care.
>> Becoming More Tech-Savvy Online for Your Health Needs — Patient Empowerment Network
The Digitally Empowered™ 10-module course includes "Identifying Credible Resources and Websites," "Using Social Media to Connect and Learn," "The Benefits of Your Patient Portal," and "How to Use Telemedicine." (Also available in Spanish.)
>> Creating a Private Website for Support from Friends and Family — Cancer Support Community's MyLifeline.org
"By creating your own private website [at no cost], our goal is to help you find hope, regain control, document your journey, and receive social, emotional, and practical support from friends and family throughout the treatment process and beyond." Optional features include a blog and a helping calendar. You can select your website coordinator.
>> Deciding to Quit Smoking — National Cancer Institute
"Smokefree.gov provides free, accurate, evidence-based information and professional assistance to help support the immediate and long-term needs of people trying to quit smoking." A large variety of topics includes "Preparing to Quit," "Create Your Quit Plan," "Smokefree Apps," and "Talk to an Expert [Phone Support]." (Also available in Spanish.)
>> Managing Your Cancer Treatment — American Cancer Society
"Learn ways to manage common side effects. Use worksheets to track your medicines and side effects." Includes chemotherapy and radiation side effects tracking worksheets, a pain diary, and a medicine tracking worksheet as well as information on side effects.
>> Protecting Yourself Against Health Fraud Scams — U.S. Food and Drug Administration
"Health fraud scams refer to products that claim to prevent, treat, or cure diseases or other health conditions, but are not proven safe and effective for those uses." Page links go to safety alerts and recalls as well as to topics such as tainted dietary supplements and info on how to report problems. (Also available in Spanish.)
Discussing Your OM Diagnosis and Treatment Options With Your Doctors
Writing down in advance what you want to discuss can help lower your stress level. Needing help getting started? Wanting to make sure you haven't missed an important topic? A list of "Questions to Ask" is provided in almost all the Ocular Melanoma Guides for patients shown on the EyeMelanoma.org's Diagnosis and Treatment webpage. You can review their suggested questions and create your own customized lists to bring to your medical appointments.
>> Creating Advance Directives — National Hospice and Palliative Care Organization
NHPCO's CaringInfo.org website "provides free advance directives [Healthcare Surrogate and Living Will forms] and instructions for each state that can be opened as a PDF. [...] Every state allows you to choose someone to make decisions about your healthcare when you are not able to make decisions for yourself."
>> Discussing Medical and End-of-Life Care Wishes — The Conversation Project
"A public engagement initiative with a goal that is both simple and transformative: to help everyone talk about their wishes for care through the end of life, so those wishes can be understood and respected." All guides are available to download and print for free. Topics include "Your Conversation Starter Guide," "Your Guide to Choosing a Health Care Proxy," "Your Guide to Being a Health Care Proxy," "Your Guide for Talking with a Health Care Team," and "What Matters to Me Workbook."
>> Finding or Keeping Your Job — CancerAndCareers.org
"Cancer and Careers empowers and educates people with cancer to thrive in their workplace, by providing expert advice, interactive tools, and educational events." (Also available in Spanish.)
>> Managing the Costs of Cancer Care — American Society of Clinical Oncology Topics in this free online booklet include "Health Insurance," "Organizing Your Financial Information," and "Questions to Ask." (Also available in Spanish.)
>> Navigating Cancer Rights in Employment, Insurance, and Finances — Triage Cancer
"Free one-on-one help in the areas of health insurance, disability insurance, employment, finances, medical decision-making, estate planning, and more" through its Navigation Program. Also, many items under both the resources and materials tabs, such as "Cancer Rights Guide," "A Toolkit for Navigating Finances After Cancer," and "State Laws."
>> Resolving Cancer-Related Legal Issues — Cancer Legal Resource Center
"CLRC is the only national dedicated center for patients, survivors, caregivers, and health care professionals to access confidential cancer-related legal information and resources at no cost [...] on matters like maintaining employment through treatment, accessing healthcare and government benefits, taking medical leave, and estate planning."
"CancerCare for Kids program provides free, professional support services for parents and children affected by cancer, as well as information about helping children understand cancer." Their booklet includes "Talking About Diagnosis, Treatment, and Prognosis" and "Keeping Lines of Communication Open."
"Family Connections program is dedicated to supporting cancer patients who are parents and their children. Our comprehensive resource offers guidance, information, and resources." Topics on website include "What Children Want to Know," "How to Explain Treatment," and "How to Help Children Cope."
This not-for-profit website does not contain any advertising, does not receive or request funding/donations of any kind, and does not make claims about the performance of any treatments or services.
Copyright © 2011–2021. EYEMELANOMA.ORG. All Rights Reserved.