NET Support Groups

Patient support groups, in person or online, are an excellent resource, especially for those newly diagnosed. It can be very powerful meeting others with your disease and learning about their experiences and where they seek their care. However, newly diagnosed people must be cautious because what works for one patient may not work for another. This is a complicated disease and some information will not relate to your situation. Sometimes information shared by another patient is just medically incorrect, especially online, where in most cases, there is no one to monitor or correct what is said. Additionally, while there may be commonalities of experiences or disease sites, one patient’s cancer can behave or respond very differently from another’s. The same goes for tolerating treatments and medications. Anything you consider for your medical care should be thoroughly discussed with your trusted medical team.

Resources to help you find a support group.

What Is a Caregiver?

In the cancer world, caregivers are thought of as anyone helping a family member or friend living with cancer. They are usually unpaid loved ones who take up any number and types of tasks, such as:

• Assisting with activities of daily living, e.g., cooking, cleaning and medication management
• Providing emotional support and companionship
• Researching NET care and treatments
• Advocating on behalf of the patient, taking notes and asking questions at medical appointments
• Navigating the healthcare system – scheduling appointments, collecting and reviewing labs and reports, filling prescriptions
• Managing insurance claims and household finances
• Connecting with the NET community for education and support
• Coordinating meals, travel, driving to appointments
• Communicating with the support team (other family and friends) and with the medical team

Relationship Challenges and Open Communication

The diagnosis of cancer can affect familiar, traditional and expected relationships. Assumptions on the part of medical providers or the patient’s community about the roles and responsibilities of loved ones, such as spouse, parent, child, or sibling, can complicate things even further. While a cancer diagnosis may work to bring people closer together, it is also true that it may be the first time spouses have ever been in such a challenging situation together. Expectations may differ. Sometimes the spouse wants to be the caregiver while the patient does not want their spouse to be the caregiver—or vice versa. When caregiving places an undue pressure on a relationship, it may make sense to turn outward for caregiving help, such as to home health care or other professional services.

It would be ideal to sit down and have an open dialogue with loved ones to establish roles, expectations, and values soon after your diagnosis. Newly diagnosed NET patients need to be given a safe space to express what matters most to them, who they want on their care team, and how they would like to be supported. Caregivers may find it challenging to know how to switch among various roles and responsibilities. Open and honest dialogue about preferences and expectations can help establish care roles in a way that is sustainable and that preserves or even deepens relationships.

Circles of Care: Creating Rings of Support

Newly diagnosed patients can be buoyed by offers of help from their community, friends and family, but sometimes it is hard to establish responsibilities and boundaries. One way to think about this is the “Ring Theory,” described in the LA Times op-ed article, “How not to say the wrong thing,” by Susan Silk and Barry Goldman, where the patient is at the center of an expanding series of support rings. The inner ring of support includes the person or people closest to the patient, such as the person’s significant other, parent, sibling, child, or best friend. In the next ring are family members and true friends who can be relied on for emotional support, and so on. The core concept is that a person can say anything to those in rings farther out from them but are to provide only support and comfort to those at the same distance from or closer to the center.

One challenge is to let people know what kind of support you want from them. This concept of rings can help you organize assistance. Those in the inner rings of your care circle provide physical help, daily care, and emotional support. They can help coordinate other supportive care duties with those in the outer rings, for example, delivering meals and groceries or driving the patient to appointments.

For Those Living Alone: A Community of Support

You may live alone, but you are not alone! While you may be hesitant to ask, know that it makes others feel good to be able to help someone in need. Patients are often surprised at the kindness and support that they encounter from friends. family and community.

Consider these ways to organize and connect with those who wish to support you:

• Managing communication using a website or other system that lets you share mass updates.
• Creating a support circle or holding a “share the care” meeting
• Attending a NET support group that can provide information, education and networking with other NET patients and providers
• Engaging community and social service agencies that provide supportive programs and care for those affected by cancer
• Seeing a social worker at your medical center for additional resources

Be a Better Caregiver

As a caregiver, you may feel overwhelmed and unsure of how best to support your loved one on this NET journey. While we recognize that each caregiver is as unique as each patient, here are some valuable ways you can support your loved one on both a practical and emotional level:

Learn to “speak NET”
Learning to speak the unique language of NET empowers you to be part of the conversations with medical providers. You will be a stronger companion and champion for the patient if you understand the terms used when symptoms, treatments and scans are discussed. At medical appointments, you can ask more educated questions and better understand what the doctor is telling you.

You are not alone--engage your network
Utilize communication and organization tools to involve others in circles of care.

Find a balance between doing and being
Instead of asking “How do you feel today?” you might consider asking your loved one “How can I help you today?” in order to proactively and collaboratively engage in care. Though you naturally want to ease the patient’s pain and suffering, sometimes the only—and best—gift you can give him or her is to be a comforting presence and simply be still and listen.

Preserve your own identity and boundaries
It hurts to see your loved one in pain, but the patient’s suffering is distinct and different from yours. It’s OK to empathize, but immersing yourself in pain will not ease the patient’s suffering. It will only make you a less effective caregiver.

Self Care for the Caregiver

Caregivers can struggle with feelings of isolation or depression and experience physical and emotional fatigue. Part of your journey as a caregiver is learning to give yourself a break.

Release any shame or blame you may feel or others may imply.

• Your loved one’s cancer is not anyone’s fault. Delays or mistakes by healthcare providers are not your or your loved one’s fault.
• Other people don’t have a right to question medical choices made and treatment paths followed.
• Focus on what you can do and not on what you can’t change.

Make space for self-care. Taking care of yourself will allow you to better care for your NET patient.

• Take care of your own basic needs including nutrition, physical activity, sleep and stress management.
• Address your own health issues. Keep up with your own preventative health maintenance including annual physicals, recommended screening tests, and vaccinations.
• Acknowledge your own suffering and experiences. While you are not the one living with cancer, you are affected by it. It may help to talk to a therapist or social worker.
• Remember what matters to you and carve out space for yourself. Find some time for things that spark joy, release stress and bring energy.

Build your own support system.

• Create your own circle of care. Make an effort to establish and maintain relationships that will provide you with necessary emotional support, assistance, and enjoyment as you care for your loved one.
• Seek and accept help from friends, family or professional caregivers.

Lisa Yen, NP, NBC-HWC NET Spouse / Caregiver

Advice from a Caregiver on Giving Yourself Grace

As a caregiver, you remember all too well that day the diagnosis came. You remember being with your loved one as they spoke about what the doctor said. You were there the day of surgery and throughout recovery. You remember the ride home from the hospital and the moment you helped them in the house. You remember that moment you learned what a caregiver even was. Even if you were one of the blessed ones to be educated in the art of caregiving and felt completely prepared for the upcoming task, most likely no one ever gave you insight into the art of giving yourself grace.

Maybe you are the type of caregiver who ffinds great joy in caring for your loved one, a person who has discovered your purpose and finds a great sense of accomplishment in the work, perhaps a sense of confidence. Maybe being a caregiver has opened new doors for you and helped you meet new people. Or maybe you are like me, the type of caregiver that is sad for your loved one, but feels completely overwhelmed and inadequate, often frustrated and feeling alone. Maybe you live somewhere where you have access to a lot of resources and help, or maybe (like me) you were sent home from the hospital without even so much as a hotline phone number. No matter what your mindset as a caregiver or what resources (or lack thereof) you have access to, the art of giving yourself grace is for everyone!

grace noun \ ˈgrās \
a : approval, favor stayed in his good graces
b archaic : mercy, pardon
c : a special favor : privilege
d : disposition to or an act or instance of kindness, courtesy, or clemency
e : a temporary exemption : reprieve

I love this definition of grace. As a caregiver who feels overwhelmed, it’s easy (and normal) to feel depressed and alone. This is where grace comes in. I would encourage you to print this definition and tape it somewhere you can see it regularly. Grace is giving yourself the stamp of approval, showing yourself kindness, granting yourself clemency, finding reprieve. Whether you feel comfortable with caregiving and find it rewarding, or if you find it more challenging like me, I hope you know that it’s ok to give yourself grace!

How do you put this into action? Everyone’s situation is different and everyone enjoys different things, so the key is to discover what grace looks like to you. Here are a few ideas:

• Spend time with friends – meet for coffee, go to a movie, get a pedicure, take a walk.
• Discover a new hobby – check out what your community recreational center has to offer. Take a cooking or painting class, tennis or swimming lessons, use the gym or the rock wall.
• Find a good book and carve out time to curl up with it.
• Keep your own health in mind – taking steps to improve your diet and move your body will help you feel your best, and when you feel your best, you can be a better friend, wife, husband, caregiver.
• Attend a support group in your area – being able to hug others who can relate to you is a great source of support.
• Ask for help!!! I can’t stress this point enough. Those closest to you want to help, you just have to ask. Ask your closest friend or family member if they would be your “go-to” – the person you can call any time day or night and just talk when you need to. I guarantee you, they would LOVE to have the opportunity to do that for you!
• Seek professional help. Maybe it’s time to talk to a trained professional – you’ve tried getting through this on your own, but you are depressed, think about hurting yourself or others, cope with drugs and alcohol, fight with those around you and no longer take care of yourself at all, it’s time. You are not alone! The American Cancer Society has some great resources: 1-800-227-2345, or contact your personal healthcare provider.

I hope in some way that I have been able to give you hope and that you can give yourself grace through this process. You’ll find you’ll make a better caregiver!

Tiffany Castignino, Jon's wife