Friday, May 18, 2012
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Below is a list of some of the many organizations throughout the country who offer information and help to you. These sources should be used for informational purposes only. Before deciding to use any new ideas you should discuss them with your treatment team. We have made every attempt to include sites that offer quality material or information; however, Cancer Support Community does not endorse nor is responsible for material you find on other sites.

  
Links to Cancer Resources
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CANCER SUPPORT COMMUNITY LAUNCHES NAVIGATING CANCER COST TOOLKIT
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Washington, DC (February 1st, 2012) – In a recent study conducted by the Cancer Support Community (“CSC”), a majority (72.8%) of patients surveyed experienced some degree of emotional distress from managing cancer care costs. Additionally, 64.8% reported that their health care team did not discuss financial aspects of care with them. To help meet the needs of the growing population of people impacted by the financial burden of cancer care, the Cancer Support Community, in partnership with Association of Oncology Social Work, Cancer and Careers, Cancer Legal Resource Center, LIVESTRONG, National Coalition for Cancer Survivorship, Patient Advocate Foundation and Survivorship A – Z, has released the third edition of its highly acclaimed Frankly Speaking About Cancer: Coping with the Cost of Care book today. 

 

“The recent economic downturn has certainly exacerbated financial concerns for cancer patients and their families. Moreover, with ongoing changes to the health care system, cancer patients and their famililies need to know what their options are so that they can ask the right questions and access the tools needed to receive appropriate, effective care. The Cancer Support Community is pleased to continue to address the growing needs of all people affected by cancer,” said Kim Thiboldeaux, President & CEO of the Cancer Support Community.  

 

This dynamic program includes a free patient education booklet, workshops, and online content.  Highlights include:

 

  • The latest information on the Affordable Care Act
  • Updated description of Medicare/Medicare Part D
  • Tips for Effective Communication with Your Employer
  • Overview of patient assistance programs
  • Up-To-Date Listing of Resources
  
Colorectal CareLine Financial Assistance Fund
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The Colorectal CareLine Financial Assistance Fund will provide one-time grants in the amount of $400.00 to individuals who have a diagnosis of colorectal cancer, have transportation expenses associated with their care and earn $75,000.00 or less annually regardless of family size. Small grants will be available for all travel expenses related to the patient's care including:

  • Gas expenses
  • Parking expenses at medical facilities
  • Airfare
  • Taxi and/or bus fare
  • Train expenses
  • Tolls

Patients must provide verification of diagnosis and meet income guidelines. The application process is easy! The application is completed by a Colorectal CareLine Specialist during your initial phone call. Please contact one of our specialists toll free at 1-866-657-8634 to start the process. The Colorectal CareLine Case Management program services are made possible through the generous support of Amgen Oncology, sanofi-aventis and Genentech, A Member of the Roche Group.

  
Medication Tracking Chart
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Click here for a medication/drug/injection tracking sheet.
It is a 3-page document:

  • 1st page has my instructions & a diagram of how to use it.  
  • 2nd page has room for 9 drugs and covers 4 days per sheet.
  • 3rd page has room for 14 drugs covering 3 days per sheet.


Users can print out whichever sheet they need.

  
Healthful Living Links
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FREE medical interpretation for clients who have Limited English Proficiency (LEP).

 Living with Chronic Lymphocytic Leukemia

Living with Chronic Myelogenous Leukemia

Living with Blood and Marrow Transplant 

Living with Multiple Myeloma

Living with non-Hodgkin Lymphoma

 

Cancer, the Flu, and You

What Cancer Patients and Survivors Should Know About the Flu

If you have cancer now or have had cancer in the past, you are at higher risk for complications from both seasonal and H1N1 flu.  To help prepare you for the flu this season, CDC answers some of your most important questions about special considerations for cancer patients and survivors for seasonal flu and H1N1 flu:
http://www.cdc.gov/cancer/flu/

Additional Healthful Living Links and Resources

www.aicr.org

www.beliefnet.org 

www.cancer.gov

www.ncgi.nlm.nih.gov/PubMed

www.nuval.com   is an independent and easy-to-use food scoring system that consumers can use across all products and brands to make informed decisions about food. It costs the grocery stores, but not consumers.  It could push the food industry to start manufacturing a better product. 

www.GoodSearch.com   will make a donation to your favorite charity or school with every search. It doesn’t cost you a thing, the money comes from the advertisers.

SALON IN MOTION, for your cancer related hair transitions.   Convenience for a busy world! 
Gigi Dellevigne will come to your home to assist you during your cancer related hair transitions. 
Phone: 314-440-6341

Underwire Alerts: A Monthly Appointment to Bond with your Breasts (self exam text reminder)- Text PINK to 59227 to subscribe today.  Visit BeBrightPink.org to learn more.

WIG DESIGN:  Devorah Soroka Phone: 314-872-0242 or 314-922-5452

The Scientific Arts Foundation has posted a new video of their research team presenting pilot study information that led to the development of a medically approved holistic clinical trial exploring the impact of specific music on stress factors in adults receiving chemotherapy treatment for cancer. 
http://www.scientificartsfoundation.org/videosciencecafe.html

  
Cancer Support Community of Greater St. Louis Partners with CaringBridge®
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Cancer Support Community of Greater St. Louis
Partners with CaringBridge®

 

 

Free, Personalized Websites Connecting Loved Ones

Cancer Support Community of Greater St. Louis is a proud partner of CaringBridge, a charitable nonprofit organization providing free, private websites that connect families and friends during a serious health event, care and recovery. A CaringBridge website gives people facing a health journey a place to provide updates, post photos, and receive messages of hope and encouragement in a guestbook.

For more information or to create your own site that gives recognition to

Cancer Support Community of Greater St. Louis, visit: http://www.caringbridge.org/cancersupportstl.

  
Cancer Resource Library at TWC
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We offer many cancer resource books for your use in our Cancer Resources Library in Cancer Support Community's Living Room at 1058 Old Des Peres Road, Saint Louis, MO 63131.

Please be sure to check your book collection at home to be sure you don't have any books that need to be returned to CSC as we have quite a few out right now.  Books from our library will have a Wellness Community sticker in them and a place for the check out card.  Please return them to the basket in our Living Room or the Front Desk at Cancer Support Community.

Thank you, we really appreciate it and returning books allows us to offer them to others who may need them.

  
Cancer Support Community: Caregiver Notes
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CAREGIVER NOTES from Cancer Support Community
 

REMEMBER THERE IS NO RIGHT OR WRONG WAY TO CARE FOR SOMEONE. IF IT WORKS FOR BOTH OF YOU, IT’S RIGHT.

EAT PROPERLY. THIS MEANS NOT LEANING OVER THE SINK FOR 4 MINUTES WHEN YOU’VE ALREADY REACHED THE “I’M STARVING” POINT.

GET PLENTY OF REST.
 
EXERCISE.

PRAY OR MEDITATE OR JUST “SIT” FOR A LITTLE WHILE EACH AND EVERY DAY.     RENEWAL IS YOUR EXTRA “BATTERY PACK”. 

FLIGHT ATTENDANT WISDOM: “BE SURE TO PUT THE OXYGEN MASK OVER YOUR OWN FACE BEFORE TRYING TO HELP THE PERSON NEXT TO YOU”.

AVOID POWER STRUGGLES; CANCER WARRIORS NEED TO FEEL SOME SENSE OF CONTROL.   DON’T HOVER. 

ASK FOR HELP, BUT DON’T BE AFRAID TO SAY “NO THANKS” TO WELL MEANING HELPERS.

JOURNAL YOUR ABUNDANCE.  

BE GRATEFUL FOR EACH AND EVERY DAY.
 
READ SOMETHING THAT’S NOT ABOUT CANCER, OR CAREGIVING.
 
CALL Cancer Support Community at 314-238-2000.

STAY CONNECTED WITH YOUR LOVED ONE. CAREGIVING CAN BE THE GREATEST CHALLENGE YOU WILL EVER FACE, AND IT CAN BE AN OPPORTUNITY TO FIND A CONNECTION AT A LEVEL YOU NEVER KNEW YOU COULD HAVE.

REALIZE THAT WE’RE ALL GOING TO BE OVERWHELMED AT MOMENTS IN OUR LIVES. 

BE FEARLESS!

DON’T BE AFRAID TO HIRE HELP IF THINGS DECLINE. CAREGIVERS WILL AT TIMES BREAK DOWN FASTER THAN CANCER PATIENTS BECAUSE THEY HAVE REFUSED TO TAKE NEEDED “DOWN TIME”. 

HAVE CONVERSATIONS BEFORE A CRISIS OCCURS.

UTILIZE THE SOCIAL WORKERS AT THE CANCER CENTERS. THEY LOVE TO LISTEN, IF YOU DON’T KNOW WHO YOUR SOCIAL WORKER IS, JUST ASK.

LISTEN TO MUSIC.

IF YOUR LOVED ONE WANTS TO EXPLORE THIS POSSIBILITY OF NOT GETTING BETTER, BE OPEN TO THE DISCUSSION, DON’T IGNORE IT OR BRUSH IT OFF. TALKING ABOUT DEATH WON’T KILL YOU.

HAVE AN EMERGENCY PLAN JUST IN CASE UTILITIES ARE CUT IN INCLEMENT WEATHER. 

FIGURE OUT WHAT REALLY MATTERS TO YOU AS A FAMILY. 

PRIORITIZE AND STICK TO YOUR LIST. 

EXPLORE GUIDED IMAGERY AND DEEP BREATHING.

PLAY THE MATCHING GAME. 

WATCH FOR EMOTIONAL WARNING SIGNS:

Anger, Inability to concentrate, Unproductive worry, Profound Sadness, Frequent mood swings.

PHYSICAL WARNING SIGNS: Stooped posture, sweaty palms, tension headaches, neck pain, chronic back pain, chronic fatigue, weight gain or loss, problems with sleep.

BEHAVIORAL WARNING SIGNS: Over-reacting, acting on impulse, using drugs, alcohol, gambling or shopping as an escape, withdrawing from relationships, changing jobs often (Felder). 

 

Helpful Websites for Caregivers:
 
Charli Prather, MSW, LCSW, Clinical Program Director
Cancer Support Community of Greater  St. Louis
  
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