Frankly Speaking About Cancer: Empowering listeners to live well with cancer

From the Affordable Care Act, to finding the silver linings in cancer, to playing video games, it has been an exciting time to tune in Frankly Speaking About Cancer. Hosted by Kim Thiboldeaux, CSC’s President and CEO, and airing every Tuesday at 4 p.m. ET, Frankly Speaking About Cancer empowers listeners to live well with cancer. The internet radio show covers a wide variety of topics, and this past month has been no exception.  Take a look below at our most recent topics and guests. To listen to each show, please click the links.

The Affordable Care Act
With the opening of the health insurance marketplaces in October, the implementation of the Affordable Care Act is well underway. If you are living with cancer, what do these new insurance options mean for you? Michelle Johnston-Fleece, Director of State Initiatives at the Cancer Support Community, and Matt Farber, Director, Provider Economics and Public Policy at the Association of Community Cancer Centers, explain everything you need to know about navigating the ACA. Click here to listen.

Giving Comfort
Cancer is tough. Basic comforts make a world of difference. The McKesson Foundation’s Carrie Varoquiers explains McKesson’s Giving Comfort program, a unique initiative that provides care packages to low-income cancer patients. These packages include high-quality comfort items that are most needed and requested by patients undergoing treatment: a soft blanket, warm socks, soothing tea, moisturizer, lip balm, a sleeping cap and much more. Click here to listen.

Re-Mission 2: Can a Video Game Make a Difference?
What do video games have to do with helping children with cancer? HopeLab and Cigna Total Health are hoping that their video game, “Re-Mission 2,” will give kids with cancer a positive attitude about their treatment. Telling us more about this unique project are guests Dr. Scott Joesphs of Cigna Total Health and Network, and Richard Tate of HopeLab.  They tell us where “Re-Mission 2” accomplished its own mission, and what they have learned on their journey. Click here to listen.

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Giving Tuesday: A day to help those affected by cancer

This year as we pour endless energy and effort into planning Black Fridayshopping strategies and hunting for the best online deals on Cyber Monday, we should also remember another day—a day focused on giving rather than receiving. Giving Tuesday is a campaign to create a national day of giving to kick off the holiday season.

The Cancer Support Community is proud to participate as a partner in this year’s Giving Tuesday movement tomorrow, December 3. We invite you to celebrate Giving Tuesday with us as we strive to ensure that no one faces cancer alone. Because the holiday season can be especially overwhelming to people who are impacted by cancer, CSC’s mission is to offer supportive services to anyone who needs it this holiday season—and throughout the whole year—to help all who are affected by cancer.

Your donation to CSC will help us offer more educational and supportive programs and services, such as the toll-free Cancer Support Helpline; our Frankly Speaking About Cancer educational workshops, books and online resources; the Cancer Experience Registry, a community for survivors; and The Living Room, our online cancer support programs.

So instead of spending endless time and money into doorbusters, crazy online sales and lots of long lines consider giving a gift that lasts and will make a positive difference in the life of someone facing cancer. Donations made on Giving Tuesday and throughout the rest of 2013 will be matched dollar-for-dollar. Click  to learn more about how you can join us for Giving Tuesday.

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Tips for a healthy & stress-free holiday

The holiday season is a time of joy as many reunite with family members and experience the comfort of old traditions. However, it can also be stressful! From hosting events to shopping for presents, this season can be overwhelming. For those dealing with a cancer diagnosis or with post-treatment recovery, the stress may be even greater. Here are some tips on how to enjoy the holiday season while taking care of yourself:

  1. Make time for yourself. Yes, the holidays are about spending time with family and friends, but make sure to allot some time for you as well. Don’t hesitate to take an extra nap during the day, go to bed early or make time for exercise. By respecting your needs, you will have more energy for activities with friends and family, and it may help alleviate some stress.
  2. Watch what you eat. If you need to maintain a certain diet, try to keep “cheating” to a minimum. Include healthy recipes on your holiday menu, and bring along a dish or two to parties. By ensuring that healthy options are available at the table, you will be less tempted to stray.
  3. Be honest with your loved ones. Your friends and family are there to support you. Don’t be afraid to let them know what you need. The more open you are about how you feel, the less uncomfortable interactions will be.
  4. Use your resources. For more information on healthy living, visit our Living Healthy with Cancer page.

If you are a family member or a friend, there are things you can do to help:

  1. Change traditions. Make changes to your holiday traditions so that your loved one can be included. For example, make plans that require less travel, or offer to help host the traditional holiday party.
  2. Help inform other family members and friends. If you are planning to attend a family gathering during the holiday season, it can be helpful to inform your family and friends of any changes in appearance of your loved one, any special accomodations they might need, or of any new developments in their situation.
  3. Be kind to yourself. Supporting someone with cancer can be overwhelming. Don’t forget to recognize that you are doing your best. Remember to take care of yourself and let others help you too.
  4. Use your resources. You are not alone in this process. If you would like more information on caregiving, don’t hesitate to visit our Caregiving page.

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I’m not SHOUTING – I just want my voice to be heard

Guest blogger, Kay Johnson, CML survivor

You’re used to making decisions. You multi-task while leading others in your job. Suddenly, you’re being told the decisions; you’re excruciatingly tired and weak; you can barely decide what to have for dinner. That was how I felt after my Chronic Myeloid Leukemia (CML) diagnosis in May 2009. And through countless rounds of blood work, doctors’ office waits, cardiograms, scans and the dreaded bone marrow biopsy, the system-focused health care system soon taught me that sometimes, in order for MY voice to be heard, it had to sound loud and confident.

The first year, I was sick with the side effects of my first cancer treatment and from the leukemia itself because the medication didn’t work for me. That year, I didn’t have the energy to make myself heard so just blindly did what I was told. Take this every day, do that, be here at 2 pm, don’t eat grapefruit, wait here, turn on your side, come back in three months. This series of short commands ruled my life. Then somehow, in that fog, I started questioning the commands. That was the first inkling of my voice coming back. Soon after that, we switched to another medicine for my CML treatment.

As my hemoglobin level rose, I was physically and emotionally stronger and I felt my voice coming back. For example, to avoid frustration of a second specialist not having current test results, I made sure they were sent to him. That was also when I knew that my being a nurse was a godsend. Even though the emergency room (ER) docs weren’t convinced at first, this nursing experience helped me recognize the symptoms of pancreatitis very early. But even knowing that my instincts were right on, why did I feel nervous about speaking up? Was it so ingrained in me that only my doctors could or should make treatment decisions?

Switching to a third CML medicine was even harder to do emotionally because the second one had taken me to major molecular remission. But pancreatitis was too serious to risk again so, after a month’s chemo vacation and a leap of faith, I switched again. In the first 2 1/2 years, I almost reached complete molecular remission. Even so, I still needed to be aware of physical changes and be prepared to use my voice again.

I’m not a doctor but I do have reasonable intelligence and can make decisions if I know the facts. So, if I know there are warnings of pleural effusion (fluid around the lungs) with the third CML medication and I’m short of breath, I should go to the ER right away instead of waiting for my oncologist’s appointment in three months. This is common sense, right? Although the ER docs still hesitated to hear me on this side effect, it was easier for me to do this a second time. My voice was a little more confident and a lot stronger this time.

Do we feel so intimidated by the medical profession that we think if we speak up we will embarrass ourselves or annoy a busy health professional? Do we believe we will be seen as a difficult patient? Is it that we feel lesser than our care team members? And, if we don’t see ourselves as valuable members of our care team, worthy of having our voices heard, how can we expect anyone else to value us?

Since my diagnosis, I’ve learned that I am the one that cares most about me. Others care but I care most. So I will be as responsible as every other team member to ensure that my treatment is successful. I will monitor. I will adhere to treatment. I will ask questions and not just follow orders blindly. If I am not completely confident with my treatment, I will speak up. I will find a way to be heard so that I can survive and thrive.

One way that I am fulfilling my pledge is to get involved. Recently, I was given the honor
of being part of a national advisory council to assist the Cancer Support Community and The Leukemia & Lymphoma Society to help us have our voices heard. Together we have created the Cancer Experience Registry: Chronic Myeloid Leukemia. The Cancer Experience Registry seeks information from us about many aspects of living with CML. The registry also provides us with access to the resources we need and helps shape next steps in programs, research and public policy. We really need everyone’s help and want to hear everyone’s voice. You can make a difference in your own life by going to cancerexperienceregistry.org, registering and responding to the questions in the survey. Thank you in advance for making YOUR voice heard.

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Nuturing our network, increasing our impact

The Cancer Support Community has locations all over the world where people can find support during their cancer journey. Each year, leaders from each of these brick-and-mortar centers come together at our Affiliate Leadership Conference to discuss ways to increase the delivery of our mission—to ensure that all people impacted by cancer are empowered by knowledge, strengthened by action and sustained by community.

Fittingly, the theme of this year’s conference is “Nuturing our Network, Increasing our Impact.” As the number of people touched by cancer is increasing, we’re working together to make sure our vital services and programs have the greatest impact possible.

The conference is an opportunity for staff from our affiliates—who are leaders in each of their communities—to learn from each other and from outside experts so that we can have the strongest network possible.

Be sure to follow the Affiliate Leadership Conference with #ALC2013 on Twitter to learn more about what we’re doing this week!

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