Finding Support Services for All Types of Cancer and Needs

Finding Support Services for All Types of Cancer and Needs

A cancer diagnosis brings changes, challenges and new information needs to your life. Fortunately, there are many services and programs available to support you and your family. Support spelled out in blocks in a circle of hands

Your healthcare team (especially social workers and navigators) can be a wealth of information about the resources available. You and your caregivers and family members can also seek out the many services available in your community and virtually.

You may benefit from a support group, a social group, a yoga or meditation class, housekeeping services, physical activity programs (e.g. LiveStrong at the YMCA) or places where you can get help paying for medical care or living expenses. There is something for everyone whether you are ready today, tomorrow or in a few years so take advantage of all the wonderful work that organizations are doing t ohelp those diagnosed with cancer and their friends and family. Cast a wide net to find the exact kind of support you need to help you live your best life with a cancer diagnosis.

Are you a survivor or caregiver? We encourage you to seek out support services and programs near you. Are you a healthcare provider? Take a few minutes to learn about the many resources nationally or in your community that can benefit your patients.

Here are some of the types of support and information we provide in our Bag and Cancer Resource Center. (To explore resources on your own, see tips below.)

  • Contact info for programs that help with practical needs including financial assistance, transportation and lodging.
  • Lists of organizations providing support groups and resources for 14 categories of types of cancer such as blood, breast, brain and lung.
  • Resources for clinical trials, legal rights and supportive care.
  • Specialized help for populations groups such as American Indians/Alaskan Natives, Latino/Latina, LGBTQI+, Black/African Americans and adolescents to young adults.

Sometimes forgotten is the need for social support.  Barbara L. Andersen, PhD at The Ohio State University and Caroline Dorfman, PhD at Duke University wrote The Importance of Social Support for People with Cancer that includes links to other articles such as Six Ways to Support a Friend with Cancer.

Cancer Collaborative of Southern Arizona

Cancer Collaborative of Arizona logoLast month, Bag It Cancer, as part of the Cancer Collaborative of Southern Arizona held an Open House for Healthcare Providers to share with them the numerous services and resources provided by nonprofit organizations in our community to help their patients. The providers who attended were very positive and excited to learn about all the programs available and gathered lots of resources they can share with their patients and their families.

The purpose of the Cancer Collaborative of Arizona (CCA) is to provide a community supporting our common mission – providing resources and support for those dealing with the challenges of a cancer diagnosis. 

How to Find Support Services and Programs Near You

  • Ask your healthcare team if they offer support services and programs at their facility, or where you can find them locally.
  • Check with other cancer medical providers in your area. Many serve all patients, no matter where they receive treatment.
  • Contact the national offices of large cancer nonprofits to see if they have a local chapter in your area.
  • Contact local nonprofits that offer programs for your type of cancer.
  • Check with faith-based organizations, local libraries, community centers, and health departments.
  • For seniors, reach out to your local Area Agency on Aging.
  • Ask other people with cancer and their caregivers you meet along the way.

 

Explore Our Vetted Support Services List

There are many resources and organizations offering cancer information and all types of support for people diagnosed with cancer and those around them. But it can be tricky and take a lot of time to sort through them to find sources that are reliable, and have what you are looking for.
The vetted resource lists on the Resources document at right may have everything you need–or it is a good place to start if you prefer to do your own research. We’ve also added phone numbers if you prefer to call and speak to someone.

Resources Bag It Cancer

Tips & Rewards For Going To Healthcare Visits With Your Loved One

Tips & Rewards For Going To Healthcare Visits With Your Loved One

For many people, having a trusted friend or family member join them during a doctor’s visit or test (in person, virtually, or by phone) can be a great source of comfort and practical help. Sitting in may also bring you some peace of mind.

Photo of Caregiver and patient

Besides being there for support and a second set of eyes and ears, you may also be that person’s advocate—gathering and sharing information with the healthcare provider, collecting information for them, and following up after the appointment to ensure continuity of their care. Knowing what to do before, during, and after a medical appointment can help safeguard the health and well-being of your loved one.

 

The Bag It Cancer’s Bag contains a nifty take-everywhere binder that was designed to help people get prepared for their medical appointments, keep track of information and records in an organized manner, and accompany them to each visit.  Here are some of the tips from the binder.

Prepare for the appointment

  • Set time aside with your family member or friend to discuss the primary purpose of the appointment. Is this a check-up? Follow up visit? Possible new medical condition? Together make a written list of questions, notes, or updates to share with the provider, keeping it to a single page and leaving room for the answers). This might include new symptoms, possible side effects of medications, or a new medical condition since the last visit. Also, discuss how they would like you to assist them during the appointment so you come to an agreement about your role.
  • Star the three top priorities on your list to discuss in case you don’t get to all of them. Some people prefer to make an extra copy to hand directly to the doctor at the start of the visit.
  • Gather everything needed for the appointment. Use Bag It’s My Companion Guidebook to store and record all your information in the tabbed sections and on the helpful patient forms. You will need:
    • Day/date/time of the appointment. (Note that providers often ask you to arrive earlier to complete paperwork.)
    • Name, address, phone number of the provider’s office.
    • Driving directions if needed. If someone is attending virtually or by phone, make sure you have the log in or call-in details in advance.
    • Insurance cards and copays due at the time of service.
    • Copies of your medical records, including medical and family history.
    • A notebook, pen or a recording device such as a smart phone with recording app.
    • A complete and accurate list of current medications, vitamins/supplements, and over the counter medicines being taken.
  • If lab work, tests, imaging, or other procedure needs to be completed so the doctor can review the results at your appointment, schedule them in advance and with enough time for the report to be available to the provider. Call to make sure the results have been received by the doctor’s office. Or pick up a copy of the results and bring it with you to your appointment, if needed.
  • If communication with the provider will be difficult for the patient due to a language barrier, request that a professional interpreter be present during the appointment. Relying on a family member or friend to perform this role is not the best choice when complicated medical terms may be used to discuss the patient’s diagnosis and treatment options, or difficult treatment decisions may need to be made.
  • If you decide to go online to research the patient’s disease or condition, avoid misinformation by visiting only reliable medical websites. Download our tips on how to evaluate medical websites. Always discuss with the provider any information you find online to make sure it is appropriate for your loved one and their situation.

 

The information and forms are just what is needed to assist with recording your cancer journey. The guidebook gives information to help explain and understand what to expect and record for the future.  The bag helps you feel more comfortable speaking up for yourself by providing forms to write down questions and concerns which will help to explain at future doctor appointments.

–Caregiver, California

 

During the appointment

  • Introduce yourself to the provider if you have not met them and explain your role and who you are to the patient. If you will be attending appointments on a regular basis, begin to build your relationship as a member of the patient’s care team.
  •  If your loved one is unable or hesitant to actively communicate with their provider, speak up on their behalf early in the conversation if this is what was agreed to by you and the patient.
  • Verify the doctor has received the results of testing or procedures completed since the last visit. Provide a copy of the results if they have not been received.
  • Address the priority concerns and questions on your list. Be direct, honest and respectfully assertive when speaking with the provider.
  • Listen carefully. Take notes and write the down the answers to the questions asked. Another idea is to record the conversation, with the provider’s permission. There are apps to download onto a smartphone, or use another recording device.
  • Before the visit concludes, make sure any information relayed to you is well understood, including how to perform any medical tasks required at home. If not, ask for it to be explained again in a different way or using everyday language. Ask follow-up questions as needed. Repeating or rephrasing the important parts back to the provider are good ways to confirm you interpreted the information correctly.
  • You can also ask for information to be provided to you in writing so you can refer to it at home. This is especially helpful for instructions on how to perform home care tasks.
  • Review the patient’s current medications. Understand why any new medications are being prescribed, and make sure you are clear on how, how much and when the medicine should be taken to avoid medication errors.
  • Find out the best way to communicate if a non-urgent matter arises between visits. Some offices prefer a message sent through the portal, some use email, and some will ask you to call a specific member of the health care team. If your loved one agrees, consider giving the provider your phone number and/or email as another point of contact.
  • If there wasn’t enough time to address all the questions and concerns with the doctor, ask if a nurse or other member of the healthcare team can help you further that day, or follow up with you after the visit. You can also ask to make another appointment to continue the conversation.
  • Request copies of any test results, reports or other medical records related to the appointment if not given to you automatically. If they are available online through the patient portal, confirm you have the correct URL for the website and instructions on how to set up a user name and password.
  • Before leaving the office make any follow up appointments needed, if possible. Be sure any orders for lab work or other testing or procedures are given to you or sent electronically to the medical facility. This also includes any referrals to other providers.

After the Appointment

  • Recap the visit with your loved one. Finish writing any notes or instructions you didn’t jot down in the office. Listening to the recording of the visit would be helpful here.
  • Update the patient’s file with any new reports, test results or other documents you received during the visit. Download and print a copy to file if they are online in the patient portal.
  • Fill all prescriptions promptly. Verify the pharmacy has a complete and accurate list of all the patient’s medications to avoid drug interactions. Report to the doctor any new symptoms or side effects that could be related to new medicines the patient is taking.
  • If any lab work, tests or procedures, or referrals to other doctors were ordered during the visit, schedule these appointments in a timely manner. Ask when and how you will receive the results. Be sure to follow up with the office if you do not receive the results within the expected time frame –do not assume “no news is good news.” If you do not understand the results, reach out to the provider’s office for an explanation of what they mean.

We hope that these tips guide both you and your loved one to better health and more peace of mind.

 

Is Your Oncology Patient-Care Team Complete?

Is Your Oncology Patient-Care Team Complete?

Every cancer patient deserves the best care possible. There isn’t a provider on the planet who disagrees with that. For many cancer centers and health systems, the best means putting together an all-star team capable of meeting the full needs of the patient, including “financial, psychological, social, logistical or related to communication.” That is why no oncology team is complete without an Oncology Nurse Navigator.

An Oncology Nurse Navigator is a clinically trained individual (typically a professional RN with oncology-specific clinical knowledge) who offers individualized assistance to patients and caregivers to help address barriers to timely and appropriate cancer treatment. They advocate for their patients throughout the cancer care continuum from diagnosis through survivorship and coordinate all components involved in cancer care, including surgical, medical, and radiation oncologists; social workers; patient education; community support; financial and insurance assistance; etc. They perform a vital role on the patient’s cancer care team.

Bringing on an Oncology Nurse Navigator is the first step. Equipping them with the best tools available is the second. That is why so many providers turn to Bag It Cancer. Oncology Nurse Navigators can assist patients with various issues beyond healthcare; comprehensive patient education tools like Bag It matter a lot in these situations. By providing a Bag It Bag, an Oncology Nurse Navigator can also help a patient learn to advocate for themselves and introduce them to reliable information that can often be difficult to find.

Mary Verplank photo Nurse Navigator, Retired

”When meeting patients for the first time, we often find the devastation of the new Cancer diagnosis to be overwhelming.  They are not sure who to turn to, or where to begin.  As certified Nurse Navigators, our first meeting is a cornerstone for care needs and coordination.

Having the Bag It Bag helps to introduce our ability to support and stabilize the care they need.  At the same time, we use it to education them in essential ways.  Lastly, it is a place to keep things from getting misplaced, and helps keep the Cancer ‘in its place’ in their lives from the start.”

Anyone that has ever met with an Oncology Nurse Navigator knows that support like patient education matters a lot and can be the difference between a good and bad experience for patients and caregivers.

So, if you don’t already have an Oncology Nurse Navigator on your team, or are interested in becoming a certified navigator, reach out to our friends at the Academy of Oncology Nurse & Patient Navigators (AONN).

If your practice needs to upgrade your patient education materials to match your new all-star team, please reach out at cj@bagitcancer.org and learn how Bag It can enhance your practice.

 

 

 

A Healthcare Provider’s Role in Patient Education

A Healthcare Provider’s Role in Patient Education

For many patients, except for a fellow cancer survivor, no one other than their healthcare provider understands how devastating a cancer diagnosis can be. When worry or smiles turn to fear, anger, or sadness, providers are there.

While some providers have long recognized the value of providing comprehensive patient education materials, others have missed the mark by giving little to none, placing the burden on patients to find their own resources or information. When implemented correctly, patient education goes beyond informing patients about their cancer and treatment. It can play a crucial role in helping patients cope better, learn how to become a self-advocate, and how to be engaged in their care.

At Bag It Cancer, we believe patient education is primarily the provider’s responsibility. Most Bag recipients receive their Bag It Bags directly from their providers, ensuring that they’re receiving the trusted information at the right time. So yes, please continue to give your patients the Bag It Bag if you are a current Bag distributor. If you are not, consider how offering this critical aspect of patient care benefits both patients and clinicians.

Studies show that patient education can help patients be more informed, more engaged in their care, better equipped to ask better questions, more compliant with treatment, and enjoy a better quality of life. Providers who directly provide quality education materials like the Bag It Bag can be confident that their patients are accessing reliable information rather than obtaining misinformation that could be dangerous.

Ideally, here is what a patient education session for a newly-diagnosed patient would look like:

A provider walks in with a Bag It Bag and opens it up to introduce it to the patient. The patient, having been informed of their diagnosis, opens My Companion Guidebook to section 1 (My Personal Details) to see that the provider has already written in the details of their current diagnosis. The provider shows them  copies of their recent scans and lab work which have already been added to the appropriate sections and discusses the results and next steps. The patient would also be directed to one of the booklets that the provider feels would be most helpful to them at that time. Now a difficult appointment where many patients often leave dazed and confused has become one where the patient leaves feeling cared for, prepared, empowered, and with a better sense of what to expect.

If you or your team are interested in seeing how Bag It can improve your oncology patient education services, please feel free to reach out at crispin@bagitcancer.org or call 520-337-2800.

 

6 Ways to Mind Your Mind During Cancer

6 Ways to Mind Your Mind During Cancer

We all know that a cancer diagnosis can be life-changing for everyone. Its impact isn’t just reserved to the physical changes experienced by patients, but also the mental health toll it can have on patients, families, friends, and entire communities. In recognition of Mental Health Awareness Month, our team at Bag It would like to share some helpful tips for you and your loved ones to ease your journey to survivorship. 

Number one

Change your environment (even for a short while)

Take a vacation with a loved one. Vacations offer many mental health benefits, including reducing depression and anxiety. Your vacation doesn’t need to be extensive; even a weekend road trip can help reduce stress. A study found that “a short, three-day leisure trip reduced perceived levels of stress and reduced levels of the ‘stress hormone’ cortisol.” Another option is to take some time to enjoy nature. A 15-30 minute walk outside offers a chance to get some fresh air and reset. Maybe a stroll at the park or a hike on a trail might do the trick.

Number 2

Take advantage of support programs in your community

Support groups are a safe, confidential space to share experiences and connect with others navigating similar challenges. They are often available in person or virtual, and you may find one at a local religious group, cancer center, or local cancer nonprofit. Studies have shown that attending a support group can lead to a better quality of life due to improved mood, self-image, and increased coping ability. 

Number 3

Take some time to count sheep

Sleep plays a vital role in how our bodies recover. A lack of adequate sleep has previously been thought to result from depression, but “growing evidence suggests that poor sleep may induce or exacerbate depression.” Inadequate sleep can also lead to anxiety disorders and may become an added source of worry and hyperarousal, which is a key contributor to insomnia. So find a bedtime each day that works for you. Wind down with some relaxation techniques as part of your bedtime routine and maximize comfort with a great mattress, pillow, and bedding. Your body will thank you for it.

Number 4

Let’s get physical

Exercise offers so many benefits beyond just building muscle and burning calories. Moderate exercise “relieves stress, improves memory, helps you sleep better, and boosts your overall mood.” No matter your age or fitness level, 30-minutes of moderate exercise five times a week can make a lot of difference. You`ll feel more relaxed and see a change in your self-image. Physical activity is also essential for managing some of the side effects of cancer, including fatigue, weight loss, weight gain, and cardiovascular issues. It also plays a role in survivorship by reducing inflammation and joint pain.  

Additional information can be found in the booklet Living Well with Cancer and Beyond.  So find a fun activity that works for you, and get started today!

Number 5

Form your squad

People face so many challenges daily, and these challenges get even more complex after a cancer diagnosis. It’s natural for people to retreat alone and deal in silence, but it’s not always the healthiest route. Find family members or close friends you trust as members of your support network. Social interactions are good for our overall physical and mental health. Cancer doesn’t have to be the focus of every conversation, and you have the right to determine what you feel comfortable sharing with others. A laugh with friends or dinner at your favorite restaurant can also offer a greater sense of well-being and relieves pent-up stress or pain.

Number 6

Talk to your provider

It’s ok not to be ok. You are not alone. If the challenges around you become overwhelming or you find yourself in a dark place, never be ashamed to seek help. Talk to your provider or find a licensed mental health professional near you. If you have insurance, you can often find a provider in your network by visiting your insurance plan’s website. You can also visit the Bag It Resource Center to find reliable resources.

If you or someone you know is struggling with suicidal thoughts, please contact the National Suicide Prevention Lifeline. They are available 24 hours a day, everyday, Call: 1-800-273-8255 or Text: “HELLO” to 741741

Sources

Lifeskills Behavioral Health. 2022. Social Connection & Healthy Activities | Mental Health Well-Being. [online]  [Accessed 6 May 2022]

Four reasons to take a vacation. [online]  [Accessed 6 May 2022]

Unity Point Health. 2022. 5 Powerful Benefits of Joining a Cancer Support Group (Infographic). [online]  [Accessed 6 May 2022]

Suni, E., 2022. Mental Health and Sleep | Sleep Foundation. [online]  [Accessed 6 May 2022]