Support for Mesothelioma Patients, Family and Friends
The diagnosis of a serious illness like mesothelioma can be devastating for patients, their families and friends. Powerful and confusing emotions can arise all at once: Fear, anger and grief may surface or shock, numbness and denial may set in. There is no right or wrong way to react to a mesothelioma diagnosis, there is only doing the best you can manage. Allow others to be supportive and, most importantly, ask for help. Knowing who to ask can make a big difference, and there are plenty of places to turn for understanding and guidance.
As with most cancers, mesothelioma takes people into previously unexplored territory. It is common for people to feel a loss of control. At a time when so much is unknown, finding people and organizations to turn to may help diminish that loss.
Maybe you have questions and need specific answers. Patient navigators are a good starting point because they have a broad base of information and can point you in the right direction. The Livestrong Foundation recognizes anyone with a cancer diagnosis is already a survivor. They provide the Livestrong SurvivorCare Program. All services are free, and intake coordinators are available at 866.235.7205. They can answer questions, direct you to resources and may be able to provide exactly the services you are looking for. The Livestrong Foundation also offers a free guidebook with many resources and information about the personal and practical issues faced by many cancer patients.
You may be confused or overwhelmed and need help sorting things out. CancerCare is a free program staffed by trained oncology social workers who will provide support and guidance. The toll-free number is 866.673.7205. They are not an emergency service and are available during typical weekday work hours.
Perhaps it is time to share with others who are facing the same or similar circumstances. Mesothelioma is not a common disease, so connecting with others who have it – or their families – can provide comfort, strength and understanding. The Mesothelioma Applied Research Foundation (MARF) sponsors free telephone support groups. You can visit their website via the link above or call 877.363.6376 for more information. There is also a link to the community of mesothelioma patients, family and friends on their website.
Another free program is the Cancer Support Community, formerly The Wellness Community. They have communities of support around the country, expertise in resources and knowledge of how to take full advantage of the many professionals and organizations you may encounter on your journey. Their toll-free phone number is 888.793.9355.
The National Coalition for Cancer Survivorship offers practical information on how to cope with cancer and treatment. They also have a free audio Cancer Survival Toolkit designed to educate cancer patients about the territory that comes with the diagnosis and treatment. Topics include communication with health care providers, decision-making, problem solving, looking for information, and more. You can reach them at the link above or at 877.622.7937.
Applying for compensation for the asbestos exposure that may have caused mesothelioma may not be the only reason legal questions arise. Sometimes questions about workplace rights, disability eligibility, discrimination because of a cancer diagnosis, managing health insurance claims, how the Family Medical Leave Act works, etc., come up. Free helps is available from the Cancer Legal Resource Center, at 866.843.2572 (allow 2-3 days for a call to be returned). Their website also has downloadable information, such as resources for co-pay help, and state-specific information on topics such as health care proxy or power of attorney.
The American Cancer Society offers information, support and resources for those diagnosed. They have patient navigators to help people with cancer find their way through the health care system. They also offer a program, Taking Charge of Money Matters, dealing with the money issues that can come up during or after cancer diagnosis and treatment. They can be reached at the link above or at 800.227.2345.
Because mesothelioma is a rare disease, there are far fewer organizations dedicated exclusively to dealing with it. The National Organization for Rare Disorders fills in some of that gap. Its services include a medication program for uninsured and underinsured individuals, as well as links or other organization, a newsletter and disease-specific information. Mesothelioma is on their list of identified rare diseases. You can reach them at the link above, or at their toll-free number 800.999.6673.
The Cancer Information and Counseling Line (CICL) provides emotional support, up-to-date medical information and resource referrals through brief, professional counseling. This toll-free, national service is funded by the AMC Cancer Fund and housed at the University of Colorado Cancer Center. The CICL provides evidence-based counseling for the whole person. Hours are Monday – Friday, 8:30 am to 4:30 pm MST. They can be reached at 800.525.3777.