Day 20 – SUPPORT OPTIONS ~ Education and Interpersonal:
With so much of the focus rightfully on medical care for the disease, lung cancer is a psychologically traumatic event for the patient as well as the family, friends and caregivers. Indeed, it is a disease from which everyone involved suffers, and hence psychological, emotional and practical support can all be critical parts of coping. When faced with this diagnosis, your needs can range from more information on treatment options and what to expect to help with chores to just having someone to talk to. Luckily, the need for support beyond medical care is now well understood, and there are a plethora of groups involved.
Support can take a number of different forms: online and in-person and geared toward caregivers / family, survivorship / patients and grieving / bereavement. There are lung cancer-focused, general lung disease or general cancer resources. Chances are if you have a specific question or need, you can find help somewhere nowadays.
Below is a listing of some of the major organizations and support available. This is by no means exhaustive, but these organization have national or international networks, a range of services and partnerships with local organizations and treatment centers.
• American Cancer Society (www.cancer.org) – The gold standard in cancer support, their website is the most comprehensive and easily digestible compendium of information on all types of cancer. They maintain a huge web of up-to-date listings for all sorts of cancer groups and in-person resources, including everything from lodging for people who need to travel for treatments, men groups, wig programs, kids groups – something for just about everyone. See here: https://www.cancer.org/about-us.html. They also maintain a helpline and an online support group via www.whatnext.com.
• American Lung Association – A national advocacy group specializing in all sorts of lung diseases. In addition to their advocacy, they maintain online education resources, an online support community at www.inspire.com as well as a network of groups called the Better Breathers Club which focuses on practical support and lifestyle changes. They also maintain a support hotline.
• The Cancer Support Community (https://www.cancersupportcommunity.org/) – Formed by a merger of Gilda’s Club and The Wellness Community in 2009, they maintain a network of 175 locations worldwide and recently merged with mylifeline.org to provide online support. A general cancer support organization, they offer a hotline, in-person one-on-one group and individual counseling for patients, caregivers and bereavement.
• LUNGevity (https://lungevity.org/) – Focused specifically on lung cancer, this organization provides a number of services to patients and caregivers, including online support communities, Facebook groups, individual peer-to-peer support, a hotline and survivorship summits and conferences. They also maintain quite a comprehensive list of support organizations with whom they partner: https://lungevity.org/about-us/strategic-collaborations-and-partnerships
• Lung Cancer Alliance (https://lungcanceralliance.org) – A major national advocacy group which offers in-person, online and phone peer-to-peer support for caregivers, patients and grievers. They also maintain partnerships with hundreds of treatment centers across the country (https://lungcanceralliance.org/resources-and-support/support-groups/) as well as a helpline.
- Bonnie J. Addario Lung Cancer Foundation (https://lungcancerfoundation.org) – Formed to empower and educate, fund cutting edge research, and raise awareness. Their materials and support staff help point patients and families to education, clinical trials, research fundraisers, and interpersonal connections.
• Your local hospital or cancer center – Many of these have support groups for patients and caregivers. Check with your doctor or support team!
- Cancer drug companies – Unbeknownst to many people, the drug companies actually have a variety of programs to provide free or discounted experimental or yet-to-be-approved drugs that your insurance programs may not cover. Many people have gotten access to life-saving immunotherapies this way.
• …And yes, even your Social Media outlets have support groups! From information sharing and interpersonal support form other patients – and families – in your shoes, these groups may focus on treatment options, end-of-life care needs, religious/spiritual support, clinical trials, personal blogs and pages, etc, and there are a variety of groups for both patients and caregivers across social media channels. Many can be emotionally based, not scientifically based; some pedal products, and some are most definitely quackeries. Do your research! Here’s to YOU getting the support you need!