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10/29/2009

Websites, Resources, & Support

We've compiled a great list here that you should scroll through to find a helpful resource:

Nutrition ServicesBlueberries-web
The SCCA Nutrition Program provides services to all pediatric and adult patients. We offer a variety of services, including individual counseling and weekly classes.  Our goal is to provide you with reliable and accurate food and nutrition advice to help optimize your nutritional health during and after your cancer treatment.

The SCCA nutritionists are experienced in a wide variety of food and nutrition topics. The nutritionists work together with your medical team to explain the latest scientific connections between food and health.  Our professional staff will help interpret scientific findings into easy to understand nutrition information.  We will then help you design an effective eating plan to meet your special needs.

The SCCA nutritionists are registered dietitians by the American Dietetic Association and are certified by the State of Washington.

Palliative Care
The goal of palliative care is to prevent and relieve suffering and to support the best possible quality of life for patients and their families, regardless of the stage of their disease. Palliative care can be delivered along with life-prolonging treatment. Its goals include enhancing quality of life for patient and family, helping with decision-making, and providing opportunities for personal growth.

Pastoral Care
As part of the multi-disciplinary teams, chaplains provide respectful spiritual and emotional care to persons of all faiths and spiritualities.  As chaplains, we care for and nurture the spiritual and emotional well-being of patients, families, and staff through relationships, words, rituals, and symbols.  In a highly technical medical process, chaplains help humanize the experience.

How we care for patients and families
Illness can be a painful, frightening, and isolating experience full of uncertainties and losses. Sometimes illness can push one to the point of experiencing spiritual and emotional chaos, pain, and distress. But it can also be an opportunity to celebrate, to change, and to experience expressions of being cared for in new ways. 

We listen attentively to the person and seek to understand and to participate with that person as much as possible within the person’s spiritual/cultural/personal frame of reference.  We converse in a supportive and inquiring manner rather than imposing our perspective upon the other person. With those who have no identifiable spirituality, pastoral care may be supportive companionship. We are always available to be called for an urgent need.

As chaplains, we make ourselves available to walk beside persons on their journey, both in times of struggle and in times of joy. 

How we work
We are committed to collaborative work within the health care team in order to provide high quality holistic care for the patients and families.  We work with patients/families and with diverse team members to assess spiritual and emotional issues of distress and strength and to assess the best response.  We also stay in communication with local spiritual communities and help patients and families connect with a specific community upon request.

IMG_0075-for web Patient and Family Resource Center
While you are at the Clinic, please stop by the Patient and Family Resource Center, which is located on the 3rd floor. The Patient and Family Resource Center offers free brochures and pamphlets on types of cancer, treatments and supportive care.  They provide information on classes, lectures and support groups at the clinic as well as referrals to support groups and classes offered in the community. The Patient and Family Resource Center also has computer workstations with internet access, a printer, fax and copy machine for your use.

American Cancer Society Patient Navigator
The American Cancer Society Patient Navigator is located in the Resource Center. The Navigator is available to patients and caregivers for finding appropriate resources about health education and support. The Patient and Family Resource Center has information available on different types of cancers, treatments, coping with cancer, supportive care, and survivorship issues.

Beauty and Cancer Program, UWMC
The Beauty and Cancer Program offers ideas for personal care during cancer treatment and support from caring volunteers. Volunteers can assist you with hats, turbans, wigs, skin care, make-up, and identifying community resources.  To schedule an appointment with a volunteer on floor 8 SE at the UW Medical Center, please call (206) 598-3604.

Living Well With Cancer Program, UWMC
Living Well With Cancer Program instructors and volunteers provide complementary classes for patients, family members, and caregivers at the UWMC and the Alliance Clinic. To request a class schedule, please call (206) 598-7880 or visit the Patient and Family Resource Center at the Alliance Clinic. Volunteers also assist patients’ family members and friends in the UWMC’s Cancer Library, which is located on floor 8 SE. The library has oncology-related books, videotapes, support resources, and computers to access the Internet.

Healing Music Project
Healing Music Project volunteers perform uplifting, soothing music for patients and their caregivers in the Alliance Clinic’s waiting areas.  You may request a schedule of music performances from Volunteer Services.

Physical Therapy
People of any age who are diagnosed with cancer can maximize strength and function during and after cancer treatment with the help of physical therapy.  We provide individualized physical assessment and treatment plans for the following:

  • Weakness secondary to disease or cancer treatment or muscle atrophy 
  • Fatigue/decreased endurance 
  • Impaired balance 
  • Peripheral neuropathy - numbness/tingling/decreased balance or walking 
  • Osteoporosis/Osteopenia 
  • Scar tissue management after surgery 
  • Lymphedema risk reduction /management 
  • Limited flexibility/range of motion 
  • Pain management 
  • Rehabilitation equipment/assistive device needs (cane, walker, etc.)

To schedule physical therapy, SCCA patients must be referred by a physician, physician assistant, or nurse practitioner.

Social Work
Social Work services are available to SCCA patients and their families. You may request social work assistance by calling the clinic social worker and leaving your name and phone number. The social worker can also be paged by clinic staff and may be able to see you in the clinic that day or will arrange another time to talk with you.

Some of the services the clinic social worker can offer are:

  • Information and referral to community resources, especially resources for cancer patients and their families
  • Help with insurance questions and public assistance programs
  • Counseling for coping with illness and life changes
  • Patient and family meetings for short and long-term care planning
  • Information on housing and transportation resources for patients and families during treatment
  • Advocacy and help with problem solving at any time during a patient’s treatment

Psychiatry and Psychology Services
Psychiatry and Psychology Services are available for you if you are experiencing difficulties coping. Specialized medication, coping skills, imagery, and behavioral techniques are some of the many options available for managing stress, depression, anxiety, pain, nausea, eating or sleeping difficulty, or other issues that are common during illness and treatment.

Volunteer Services
Compassionate volunteers provide practical and social support for patients and their families (or caregivers) in a variety of ways. For more information on the SCCA Volunteer Program, please call the appropriate contact numbers listed in the important phone numbers section of this binder.

Guest Services
To learn about Seattle and services for patients and families, please speak with our friendly Guest Services Volunteers in the Alliance Clinic’s main lobby. Volunteers can suggest recreational activities and acquaint you with the clinic and surrounding areas. Volunteers also distribute donated tickets for Seattle attractions and special events. Guest Services Volunteers are also available to provide wheelchair escorts, give directions and provide assistance in calling taxis and shuttles. They are available to assist you from 8:00 a.m. until 4:00 p.m., Monday through Friday.

Family and Caregiver Support
Patient/Family Volunteers offer companionship and practical assistance for families and caregivers of patients who are from outside of western Washington with no local support.  When possible, we match a volunteer with a family based on similar interests, professions, spirituality, and cultural background.  Bilingual volunteers can assist families who do not speak English.  Following are examples of ways that a Patient/Family Volunteer can be supportive:

  • Meet you at the airport when you arrive in Seattle.  Provide rides to and from the airport for family members and friends who are your primary caregivers.
  • Help you get to know the city and provide transportation for grocery shopping and errands once or twice a week.
  • Offer social activities and opportunities to take relaxing breaks (e.g. go out to lunch, visit parks, enjoy movies and sightseeing).
  • Offer weekly recreational outings for children and teens.

Volunteers would like to help make your stay in Seattle as comfortable as possible. However, most volunteers work full-time and are unable to provide daily support. Typically, a volunteer spends four to five hours per week with a family.

Please call the Manager of Volunteer Services to learn more about this unique volunteer service and to request a volunteer for your family or friends who are your caregivers.

Airport Transportation Service
Volunteer Drivers provide transportation to and from Seattle-Tacoma Airport and Boeing Field for patients who come from outside of western Washington and their primary caregivers. To request transportation, please contact Volunteer Services at least three business days in advance of your arrival or departure.  Please leave a message with the following information:

  • Names of the patient and family members or caregivers, and the amount of luggage that you will bring with you.
  • Your arrival date, time, airline, flight number and city of the flight's origin.
  • For departures from Seattle, please state the airline and flight departure time. You are advised to arrive at the airport at least one hour before the departure time.
  • The name and address of your hotel or residence in Seattle.
  • Your hometown and daytime telephone number, and the best time to reach you.

Volunteer Services will contact you to confirm transportation arrangements.  Please keep in mind that it may not be possible to arrange for volunteer transportation between 10:00 p.m. and 6:00 a.m. and on major holidays.

Cancer Information and Support
Seattle Cancer Care Alliance  206-288-1000
www.seattlecca.org

Fred Hutchinson Cancer Research Center   206-667-5000
www.fhcrc.org

Organizations that offer Information and Services to People with Cancer and their Families
These resources are provided as a service to our patients.  Inclusion on this list does not imply endorsement by the Seattle Cancer Care Alliance.

American Cancer Society  1-800-ACS-2345
http://www.cancer.org

Cancer Information Service  1-800-4CANCER
http://www.cancer.gov

Cancer Lifeline   206-297-2500  
http://www.cancerlifeline.org/

National Family Caregivers Association   1-800-896-3650
http://www.nfcacares.org

Fertile Hope
http://www.fertilehope.org

Gilda’s Club Seattle   206-709-1400
http://www.gildasclubseattle.org
  
Get Palliative Care
http://www.getpalliativecare.org/

MyOncofertility.org
http://www.myoncofertility.org

Young Cancer Spouses
http://www.youngcancerspouses.org/index.html


Treatment/Diagnostic Information

Appearance

  • Beauty and Cancer Program    206-598-3604 
  • Look Good…Feel Better  1-800-227-2345  

Fitness/Exercise
Team Survivor Northwest    206-732-8350
www.teamsurvivornw.org

Insurance  
America’s Health Insurance Plans 202-778-3200 
http://www.ahip.org

Prescription Drug Assistance and Issues
Needy Meds  
http://www.needymeds.com

Transportation Security Administration

Travelers with Disabilities and Medical Conditions
http://www.tsa.gov/travelers/airtravel/specialneeds/editorial_1059.shtm


CANCER SITES

BLADDER
American Foundation for Urologic Disease  1-800-242-2383
http://www.afud.org 

Bone Marrow Transplantation
Blood and Marrow Transplant Information Network 1-888-597-7674 
http://www.bmtnews.org/

National Bone Marrow Transplant Link   1-800-546-5268
http://www.nbmtlink.org
  
BREAST CANCER

CERVICAL
National Cervical Cancer Coalition 1-800-685-5531
http://www.nccc-online.org

COLON
Colon Cancer Alliance  1-877-422-2030
http://www.ccalliance.org

KIDNEY
Kidney Cancer Association  1-800-850-9132
http://www.kidneycancerassociation.org

LEUKEMIA and LYMPHOMA
Leukemia/Lymphoma Society 1-800-955-4572
http://www.leukemia-lymphoma.org

LUNG

MELANOMA
The Skin Cancer Foundation 1-800-754-6490
http://www.skincancer.org   

MYELOMA

ORAL, HEAD, and NECK
SPOHNC    1-800-377-0928
(Support for People with Oral and Head and Neck Cancer) 
http://www.spohnc.org

OVARIAN

PANCREATIC
Pancreatic Cancer Action Network (PANCAN)   1-877-272-6226  
http://www.pancan.org

PROSTATE

Sarcoma  

Other Diseases

Complementary Treatments

Quackwatch.com
http://www.quackwatch.com/index.html

Food and Drug Administration (FDA) Center for Food Safety and Applied Nutrition
http://www.cfsan.fda.gov/~dms/supplmnt.html

NIH Office of Dietary Supplements 
 http://dietary-supplements.info.nih.gov

National Center of Complementary and Alternative Medicine 1-888-644-6226
 http://nccam.nih.gov

Oncolink at the Abramson Cancer Center at the University of Pennsylvania
http://www.oncolink.com

Supplement Watch Newsletter (must join)   
http://www.supplementwatch.com

U.C. Berkeley Wellness Letter  1-800-829-9170 
 http://www.berkeleywellness.com

American Cancer Society Complementary and Alternative Therapies
http://www.cancer.org/docroot/eto/eto_5.asp   1-800-227-2345

Sites for Support and Networking for Youths
Outlook-Life Beyond Childhood Cancer
http://www.outlook-life.org
Outlook provides information on problems, solutions and resources for coping with the side effects of cancer.

Captain Chemo
http://www.royalmarsden.org/captchemo/
A comic strip created by a teenage cancer patient has been turned into an interactive computer game to explain cancer and its treatment

Let’s Connect  
http://www.letsconnect.org
A website created and maintained by a group of people who have had or have a chronic or lifethreatening illness (like diabetes, cancer, lupus, cerebral palsy, etc) and realize the importance of talking to someone who’s been there.

On the Tip of the Toes   
http://tip-of-toes.com 
Provides information about outdoor wildlife expeditions and other nature-oriented experiences for adolescents with cancer

Kids Konnected
http://www.kidskonnected.org/kids/default.html  800-899-2866
This site provide education and support for parents, kids and teens.

Planet Cancer
www.planetcancer.org

Survivorship

Knowledge is Power!
SCCA Patient and Family Education Team

~Sara and Ann

Posted at 09:00 AM in General Resources |

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Ann Breen MN APRN, OCN
Ann Breen has a masters degree from the University of Washington and is certified in Oncology and Psychosocial nursing with years of experience in Oncology and Rehabilitation Education.

Sara Olsen, MS, CHES
Sara Olsen is a Certified Health Education Specialist, with a graduate degree from the University of Wyoming. She is experienced in college health and oncology.

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