It’s important to know what resources are available to you if you’re battling cancer – it can be very lonely, even if you’re surrounded with love. There are so many support resources for cancer patients available through the cancer community. There is a whole community out there of cancer patients and survivors who can relate to your challenges. It can be overwhelming to know where to look or start if you need support. Knowledge is power so I want to share what resources I’ve found. I will admit I have not tapped into many of these resources yet, but knowing what’s available to me is helpful in itself.
Your care team
The most valuable resource to you should be your Oncology treatment team. They should ensure you know how to reach them, when to reach out, and be responsive to your questions and needs. They should provide social work support, financial assistance options, and they work with your insurance company if needed to get you what you need throughout your treatment. They should check in with you regularly and closely monitor your blood work, symptoms, and imaging. They can provide you with free or low-cost resources such as therapy, events, support groups, nutrition coaching, and life coaching.
I’m a lucky girl because I can say that my treatment team does all of the above, and more. If there are things you feel your treatment team hasn’t covered with you, be sure to jot it down and bring it up. As the patient it’s your responsibility to keep your team in the loop on how you are doing. There are no dumb questions. They can only treat and care for you effectively if they have the full picture. Blood work and imaging gives them a lot of the information they need, but only you can report on how you are actually doing and what you’re experiencing.
CancerCare
CancerCare.Org is a really valuable resource. The website is very easy to navigate and is filled with helpful information and resources. The first thing I did was navigate to the page for brain cancer, and I noticed that CancerCare literally offers free professional support for those battling cancer or cancer survivors. That’s pretty incredible. They offer counseling, resource navigation, financial planning, financial assistance, support groups, and programs. You can also read up on the latest publications and find out about upcoming workshops.
Here are some other resources I pulled from CancerCare.Org:
CancerCare
800-813-HOPE (4673)
www.cancercare.org
211 Collaborative
www.211.org
American Cancer Society
800-227-2345
www.cancer.org
U.S. Administration on Aging
800-677-1116
www.eldercare.gov
The United Way
(find your local United Way at www.liveunited.org)
American Cancer Society
The American Cancer Society can help with arranging transportation and lodging during treatments. They can connect you with a Cancer Survivors Network where you can tap into an endless amount of support from people who have fought their own battles. The ACS website is also a great resource for research.
24/7 Cancer Helpline:
National Foundation for Cancer Research
The National Foundation for Cancer Research is another valuable resource for cancer research. Similar to Cancer Care and the ACS, they offer ways to get involved, the latest cancer-related news, valuable information about your condition, and they even offer research programs to read about and get involved with. There are so many ways to get involved whether you’re a cancer patient/survivor or a loved one of a cancer patient/survivor.
Phone apps
There are actually a lot of appts out there that are targeted towards cancer patients. The following 6 free apps are listed on the National Foundation for Cancer Research website:
Cancer.Net Mobile: Provides up to date information on more than 120 types of cancer. Patients can log and track their treatments, receive advice on how to manage side effects, provide cost of care information, and connect to links for cancer-related podcasts, videos, and blogs. This app also allows patients to track symptoms, log medication and facilitate communication between doctor and patient.
CareZone: Helps patients set up reminders for treatments, plan care notes, summarize drug administration protocols, deliver medication and doctors’ visit reminders, and simplify treatment through taking and retaining pictures of medications, prescriptions, and supplements. The app also provides a journaling area for tracking appointments and keeping notes to discuss with doctors.
Create to Heal: This one is not a treatment or symptom management tool, rather it’s a healing tool that focuses on creativity and stress relief. It provides guided meditations, soothing music, and art with a view to reducing stress and assisting in the healing process.
Chemo Brain: This one is actually only free on Apple devices. Chemo brain is a real thing often experienced by chemo patients that presents as thinking or memory problems. This app is designed to aid patients with these challenges. Patients can jot down reminders for medications, appointments, questions for the doctor and thoughts on side-effects, as well as record what physicians say during an appointment and send e-mails to friends or family to keep them updated.
Cancer Dictionary Free: This one’s also only free on IOS devices. The app gives instant access to oncology-specific information in an easy to use quick reference guide to facilitate understanding and give patients clarity. This is more of an informational tool to help you learn the terminology related to your condition and treatments.
LivingWith: Cancer Support: A “My Circle” function gives patients a simple way to communicate with the family members and friends who matter most to them. It has a feature that allows patients to request someone manage the app on their behalf when needed. A “Requests” function allows patients to send requests for help with daily tasks like meals, rides to doctors’ appointments or other support. A “Health Notes” function records key takeaways from doctors’ visits, and tracks notes and questions in between appointments to improve communication with healthcare teams. It stores test results, medication details and insurance documents in one central folder. And a “Living With” function allows patients to track mood, pain, sleep and counts steps.
iHealth Log is an IOS app that is offered at $4.99. This app tracks appointments, test results, lab values and even fluctuations in weight. It is supposed to be more thorough than some other apps and includes features like an audio diary to record questions for the doctor, keep memos to stay organized and keep on top of necessary tasks. This app also includes the option to protect patient sensitive medical information with a separate password.
Whatever your goals may be along your journey, there is likely an app that can be a really helpful tool for you. I find apps helpful because I’m in my phone often anyways, and between chemo brain and radiation brain I’m often lucky to keep my head screwed on straight 😊 Many cancer patients (including myself) are often dealing with fatigue and lack of energy from their treatments, so seeking out support groups, networking and making phone calls isn’t for everyone. These apps are a great way to maintain valuable support while also protecting your limited energy. We all spend time scrolling on our phone at some point, whether it be in bed at night, on your lunch break, or when you wake up in the morning. If every once in awhile you use that time to scroll through a phone app instead of Instagram, even that will make a difference. Stay tuned for future blog posts where I review some of these phone apps!
Ways to give
For loved ones of cancer patients, it can be a really helpless feeling when your loved one is battling cancer. One way to counter that helpless feeling is to research how you can get involved. For anyone out there wondering how they can get involved, one place to look is the Support Us page on CancerCare.org. You can donate, make a contribution in honor of a loved one, find/attend events, volunteer, participate on online forums to facilitate meaningful discussions, etc. The ACS website also offers ways to get involved. You can volunteer, donate, fundraise, be an advocate, etc.
♡ Hailey
Coming Up on Kiss My Astrocytoma
A New Reality: Human Resiliency
Phone Apps for Cancer Patients
BELONG: Phone App Review
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