Maddy Gold sharing her story at the CancerCare Festival of Hope Gala

After being deeply impacted by cancer at such a young age, 13-year-old Maddy has become a courageous advocate for CancerCare’s free professional services available to anyone affected by cancer.

Maddy began coming to CancerCare for emotional support at the age of six after her mother, Alyssa, was diagnosed with metastatic breast cancer. “It was important for me to be at CancerCare, because if not, I would have let my nerves and feelings get the best of me,” explained Maddy. “My mom started losing her hair and got a wig. At first I didn’t understand why, but CancerCare once again came to the rescue. They explained to me about the medicine in her body and how it made her lose her hair.”

In December 2006, Alyssa passed away. Maddy and her brother continued coming to CancerCare to learn how to cope with their loss and their father joined a weekly bereavement group.

Determined to give back to the organization that helped her family through their most challenging times, Maddy dedicated her Bat Mitzvah project to providing hope to CancerCare clients. “Because of my experience, I know a lot about cancer. I wanted to contribute my time to talking to or working with children,” she said.

She currently volunteers at the CancerCare New Jersey office each week helping to prepare for the annual Healing Hearts Bereavement Camp. One of her passion projects involves creating a memory lane path where the children can add their fondest memories of a lost loved one. She has also raised over $1,500 by selling CancerCare bracelets and collecting donations through her family’s “Hearts of Gold” walking team.

Maddy continues to inspire CancerCare staff and clients each day with her desire to provide others with help and hope in the face of cancer.

Here are some tips for communicating with your health care team:

• Prepare a list of questions. Write down your questions and concerns about your illness and treatment before your next medical appointment. This way, you won’t forget to ask about something that was important to you.
• Write down your doctor’s answers. Taking notes will help you remember your doctor’s responses, advice and instructions. If you have a mobile device, you can also use it to take notes so that you can easily review the information at a later time.
• Bring someone with you to your appointments. The person who accompanies you can serve as a second set of ears. He or she may also be able to think of additional questions to ask your doctor or remember details that you may have forgotten.
• Ask for a contact. Important questions may come up between appointments. Find out whether there is someone you can talk to if you have an important issue or emergency. If your doctor is unavailable, is there someone else such as a nurse or social worker you can call?

The more you feel you can openly discuss any matters of concern to you, the better you are likely to feel about your care over the long term. Don’t be afraid or embarrassed to ask questions—always seek the care you need and deserve.

Learn more about communicating with your health care team.

Today’s guest blog was written by CancerCare CEO Helen H. Miller, LCSW, ACSW.

Define your role as caregiver:

Identify your role and responsibilities. Are you serving as a primary caregiver or a casual friend/acquaintance? These two types of roles are equally important.  Your responsibilities can be flexible, so give yourself permission to modify as circumstances change.

Set guidelines and limits. How much and how often are you willing to give? Create a workable schedule and give yourself a day off or a “vacation” from caregiving. Define your non-negotiables (i.e. not moving in with the patient to provide care, or not taking time off work).

Consider alternate options for caregiving. Who else can provide practical and/or emotional support? What respite care is available (e.g., home health aide, visiting nurse)?

Prioritize responsibilities. What is most important to the patient? To you?

Getting acquainted with your new role:

Read literature. Know what types of literature are best for you. Do you prefer concrete medical information or literature that is more emotionally supportive?

Find your role in the medical context. Consider decisions about becoming a healthcare proxy or a power of attorney. Understand the legal impact of these roles and discuss with the patient early on. Will you attend appointments?

Talk to healthcare professionals. Let doctors and the entire health care team know who you are, what your role is and how they can reach you. Hospital social workers or patient navigators can be helpful advocates for you and the patient.  Ask questions regarding what to expect throughout the process, both physically and emotionally.

Understanding your relationship with the patient:

Acknowledge differences between the caregiver and the person with cancer. These differences are to be expected and it is normal to disagree. Reflect on what your relationship was like before cancer. A diagnosis does not necessarily change someone’s personality or your relationship, so it is important to manage your expectations. Cancer can intensify problems that were there before. Plan to seek support to help sort through what issues are cancer-related and what issues are not. Ask, don’t assume, how you can be there for them–communication is essential.

Helping other people “get it” and managing expectations. Inform others about your role as caregiver and ask for help. Let them know how this change is impacting you and how they can help meet your needs. Re-telling the same story can be exhausting. Simplify by sending a mass e-mail or utilizing resources like www.mycancercircle.org. Some people are good at practical tasks while others can offer emotional support–explore the abilities of others versus your expectations of them.

Finding “me” time. Maintain commitments and activities that pre-dated your caregiving responsibilities. Create and maximize alone time (e.g., take walks, practice breathing exercises) and take care of yourself (get recommended sleep, spend time with loved ones, seek counseling).

Finding what works for you. Remember that there is no right way to be a caregiver. Allow for a trial and error period and make sure to give yourself a break as soon as you need it.

Author: Carly Mesavitz, LMSW, Oncology Social Worker, CancerCare

Oral and head and neck cancers account for about 3% to 5% of all cancers in the United States. Thanks to recent treatment advances, many cancers of the head and neck can be cured, especially if they are found early. For this reason, prevention and early detection are especially important to treating oral and head and neck cancer.

The Head and Neck Cancer Alliance maintains a comprehensive listing of cancer screening sites. Visit a screening site this Friday, April 19 for a free head and neck cancer screening. 

CancerCare’s professional oncology social workers understand the challenges people coping with oral and head and neck cancer face. We provide free counseling, support groups, education, financial help and referrals to other resources.

Register for CancerCare’s May 15 Connect Education Workshop, “Progress in the Treatment of Oral and Head and Neck Cancer.” Leading experts will provide an overview of oral and head and neck cancer, discussing topics such as:

• new surgical and chemotherapy options

• clinical trials

• the importance of communicating with your health care team

• speech and swallowing challenges and recommendations

• and nutritional concerns and tips.

Participation is free, though registration is required.  

Learn more about CancerCare’s free services for people coping with oral and head and neck cancer.

A lung cancer diagnosis may lead some to ask, “Did you smoke?” It is natural to find such personal questions offensive and react in anger. Consider responding by talking about how lung cancer has many causes besides smoking, including environmental factors. Many people with lung cancer have never smoked, and can be unexpectedly diagnosed. Turning an inconsiderate question into a teachable moment can be a very powerful means of confronting lung cancer stigma. 

CancerCare’s professional oncology social workers can help you find ways to talk about lung cancer through individual counseling, and can put you in touch with others in a similar situation through a free support group.

Leading lung cancer experts will answer questions during CancerCare’s May 17 Connect Education Workshop, “Advances in the Treatment of Lung Cancer.” Participation is free, but registration is required.

Learn more and register.

View all of CancerCare’s lung cancer resources.

Many times, friends and community members want to help, but are unsure of where to begin.

MyCancerCircle.net is an online tool created by Boehringer Ingelheim Pharmaceuticals in collaboration with CancerCare to help caregivers create their own community of support. The tool allows caregivers to coordinate volunteer activities such as cooking meals or transporting a loved one to appointments. My Cancer Circle also provides a private space where members can offer words of support and encouragement.

To learn more about My Cancer Circle™ or to create a community to support a loved one facing cancer, visit www.MyCancerCircle.net.

Leading experts on caring for a loved one with cancer will discuss the role of the caregiver and review key features of this online tool during CancerCare’s Connect Education Workshop entitled: “My Cancer Circle – A Support Network for Caregivers.” The date of the webinar is May 7, from 1:30-2:30 p.m. Participation in the workshop is free, although registration is required.

Register for the Connect Education Workshop.

CancerCare provides free services specifically for caregivers, including support groups (available face to face, over the phone, and online), publications and Connect Education Workshops.

View all of CancerCare’s free services for caregivers. My Cancer Circle is a trademark of Boehringer Ingelheim Pharmaceuticals, Inc. 

CancerCare client Fannie can attest to this all too well. After calling CancerCare to get help and speaking with a professional oncology social worker, she admitted that she was distressed by her hair falling out due to treatments for breast cancer. “It was very scary,” Fannie says. “I felt like I was losing part of myself.”

Thanks to the free wig she received, Fannie feels more comfortable with the changes brought on by her treatments for breast cancer.

Fannie’s social worker informed her about CancerCare’s free wig clinics, where experts help people coping with hair loss get fitted for wigs and offer tips to help better manage physical changes due to treatment. Fannie attended a workshop shortly after, and was fitted for a free wig. “It was like Christmas,” Fannie recalls. “I was almost speechless.” Thanks to the wig she received, Fannie feels more comfortable with the changes brought on by her treatment.

Read CancerCare’s free fact sheet, “Tips for Managing Hair Loss,” to learn about coping with hair loss due to cancer and its treatments.

CancerCare will offer its next free wig clinic at its national headquarters in New York City on Friday, March 22 at 2:00 p.m. We also provide free wigs by appointment in our Norwalk, CT, Ridgewood, NJ and Long Island, NY offices.

Registration is required for all programs; call 800-813-HOPE (4673) or visit www.cancercare.org/community_programs for more information.

View a full calendar of our upcoming community programs and clinics.

Don’t live in the tri-state area of New York? We can help you locate resources in your community. Contact us at info@cancercare.org; or call 800‑813‑HOPE (4673) and a CancerCare oncology social worker can refer you to local resources.

Many are patients or caregivers of a loved one with cancer. Others are friends, loved ones, or the bereaved. Everyone facing the challenges of cancer has a unique, deeply personal story to tell about their journey.

Ekata, a 37-year-old New Yorker, came to CancerCare for help after being diagnosed with chronic lymphocytic leukemia (CLL) in 2011. Her diagnosis completely interrupted her life, forcing her to leave her job at a top organization due to long hours that took a toll on her body. Ekata also faced the uncertainty of cancer’s impact on previously held goals, such as starting a family and developing her career.

At the urging of her brother, Ekata contacted CancerCare. Though she was initially skeptical, Ekata found speaking with her social worker, Caroline, helped her better manage the feelings she found difficult to express. “She has been amazing,” Ekata says. “She made me feel comfortable right away.”

Ekata came to CancerCare for counseling after being diagnosed with chronic lymphocytic leukemia (CLL).

Ekata found working with her social worker so helpful she convinced friends and family to go to CancerCare as well. “I tell people that [CancerCare’s services] are flexible and top quality.” Above all else, Ekata is grateful that CancerCare has helped her maintain her sense of normalcy. She says, “CancerCare gives me the support I need to go out and be the person I want to be. I’m able to be the person I always was.”

Read more about Ekata in CancerCare’s Stories of Help and Hope.

Do you have a Story of Help and Hope? Share it with us.

For example, if caregivers respond that they feel overloaded, Help for Cancer Caregivers provides information describing the symptoms and causes of overload, as well as information on how to cope and share their feelings with others.

The information on Help for Cancer Caregivers was constructed through a collaboration between experts at the Caregiver Action Network, Michigan State University, Indiana University and WellPoint Inc.

Help for Cancer Caregivers can be accessed free of charge at http://helpforcancercaregivers.org.

The stress of caregiving can take a serious toll on the emotional and physical health of caregivers. Research shows that finding ways to manage stress can help caregivers feel better and provide better care for their loved one.

For nearly 70 years, CancerCare has helped patients and caregivers better manage the emotional and practical challenges of cancer. CancerCare’s free services for caregivers include counseling, support groups, Connect Education Workshops, and publications.

Learn more about our free support services for caregivers.

CancerCare CEO Helen H. Miller with actress and cancer advocate S. Epatha Merkerson

Eisai, a leader in providing treatments for breast cancer and treatment side effects, is a longtime supporter of CancerCare’s free Connect Education Workshops and educational publications. Eisai is also the sponsor of CancerCare’s Healing Hearts Bereavement Camp, a weekend retreat for families who have lost a loved one to cancer. And, Eisai’s Magnolia Meals at Home program has to date delivered free meals to more than 285 people receiving treatment for breast cancer. Accepting the award on Eisai’s behalf was Dr. Takashi Owa, chief innovation officer of Eisai Product Creation Systems.  

Dr. Takashi Owa accepts the “Partnership Award” on behalf of Eisai

Also honored at the awards dinner was CancerCare client Pamela O., who told her courageous story of coping with triple-negative breast cancer. Pamela shared:

To survive something, one merely has to live through it. I wanted more than just to survive cancer, I wanted to live, thrive and prosper in spite it. Kristy [my social worker] was there for me…I could really tell she was listening, that she actually heard my pain, my frustration, my fear.  She believed in me! And she worked with me until I could believe in me again.

CancerCare client Pamela O. shares her story

CancerCare helped Pamela and more than 100,000 other people coping with cancer in 2012 thanks to our generous supporters. Consider making a donation to CancerCare to help us continue providing free, support services to anyone affected by cancer.

To speak with a CancerCare professional oncology social worker, call 800-813-HOPE (4673).

L to R: CancerCare oncology social worker Kristy Case; CancerCare client Pamela O.; CancerCare CEO Helen H. Miller