Posts tagged ‘caregivers’

Dream and Wish Fulfillment Resources for Cancer Patients

The following resources fulfill “dreams’ or wishes” of adult cancer patients:

  1. Adult Wish Foundation
  2. The Dream Foundation
  3. First Descents is an adventure/river rafter program in Colorado for people with cancer
  4. The Jack & Jill Late Stage Cancer Foundation is a national resource providing WOW! experiences for children and families who have a Mom or Dad with late stage, limited life expectancy cancer.”

Jack & Jill Foundation eligibility requirements for all referral candidates:

  1. Late stage limited life expectancy cancer
  2. At least one child age between the ages of three and eighteen. Only one child must meet the age requirement
  3. A life expectancy over two months
  4. Referred by an approved referral agency or treating oncologist.
  5. Referrals must NOT have previously participated in an adult dream, wish or any other similar program.

April 19, 2011 at 6:08 pm 1 comment

Decision Making Resources for Transition from Treatment to Hospice

For cancer patients looking for a resource to help with the decision making process to either continue treatment or go on hospice, please see the following list of resource recommendations.

  1. Prepare a list of questions and meet with your physician. If your physician agrees that it is appropriate to consider hospice, make an appointment to meet with a hospice agency. If possible have family present at both meetings. For a list of referrals to hospice agencies contact the social worker at Ronnie Lippin Cancer Information and Resource Line.
  2. Use the booklet, Hard Choices for Loving People by Hank Dunn which helps with discussing this type of decision. This is a decision making tool that is not cancer specific and has been helpful for many patients.
  3. Read the article called, Do It Your Way by Kathy Gurland in “A Women’s Health” magazine. It focuses on the decision making process and breaks it down from a self empowering standpoint. Although it is not specific to the decisions for stopping cancer treatment or starting hospice care, it could be helpful as a general framework for cancer patients because it includes the comprehensive steps to be considered when making any serious decision.

March 7, 2011 at 11:42 pm Leave a comment

Caregiver Support Program

A Caregiver Support Program is going to become available through a special program funded by a private foundation called The Underserved Outreach Project.

For low-income and minority families, supportive and palliative care is an area of great disparity in cancer care. The Lloyd Symington Foundation has partnered with Collinge and Associates to make available 300 copies of the family caregiver multimedia education program “Touch, Caring and Cancer: Simple Instruction for Family and Friends” to address this need. The materials will be given to cancer centers and organizations that serve low-income, minority and underserved populations, to help develop the untapped potential of family members to improve quality of life of their loved ones with cancer.

The target period for distribution of these programs is March 1-June 1, and early applications will receive priority consideration. Click Here for a program description and the application materials. If you are part of an organization that serves these groups, please check out the program announcement. And feel free to forward this information to anyone you think might appreciate the opportunity.

For ideas on how to use the program in caregiver support programs and workshops with your organization, download the Guide for Professionals here.

February 10, 2011 at 10:42 pm Leave a comment

Breast Reconstruction

Under certain circumstances, the treatment of breast cancer may require complete removal of the affected breast (a mastectomy), or rarely, both breasts (bilateral mastectomy). If a patient agrees to a mastectomy, she may choose to have breast reconstruction afterwards. This usually is performed by a specialist, a certified plastic surgeon, and sometimes involves more than one operation.

There are various options for breast reconstruction. One option is the placement of an implant. Implants are not permanent and sometimes only last about 10 years and then need to be replaced. If the decision is to have an implant, it is important to discuss with the plastic surgeon the type of implant most suitable for a patient’s particular anatomy, as well as the potential complications and duration of placement. Besides an implant, other options are available involving more complex types of breast reconstruction designed to produce a more “natural” look for certain patients. Abdominal flaps and similar techniques are usually offered to younger individuals who can handle the much more extensive surgery, and for the most part results in more natural-looking breasts. However, not all types of reconstruction are appropriate for everyone, and certain medical factors need to be taken into consideration with regard to recommending the specific type of procedure. Also, it may be advisable to obtain consultations with more than one plastic surgeon.

One of the most complete photo books showing reconstruction is “Reconstructing Aphrodite”.

Another great resource for helping cancer patients learn about their choices for breast reconstructive surgery is Living Beyond Breast Cancer http://www.lbbc.org, which has offered free scheduled educational teleconferences on the topic Breast Reconstruction: Understanding Your Options.

Additional websites for information on reconstruction are:

http://www.breastreconstruction.org

http://www.youngsurvival.org , for young breast cancer patients wanting reconstruction.

http://bidmc.org/YourHealth/BIDMCInteractive/Blogs/LivingwithBreastCancer.aspx? A daily blog about breast cancer research, resources, psychosocial issues, etc.

http://www.breastcancer.org/pictures/reconstruction/

http://www.stopbreastcancer.org , the National Breast Cancer Coalition website. Look at Position Papers to find information about reconstruction.

http://www.dslrf.org/searchresults.asp ,Dr. Susan Love’s website showing some of the photos and stories from the book “Show Me”. Some of the techniques in that book are outdated but considered to be quite informative.

http://www.networkofstrength.org/information/treatment/reconstruction.php

http://www.diepflap.com/?gclid=CPa53NS5-KICFRAN2godBWK5hg ,a link with newer reconstruction techniques although not available everywhere and not everyone is a candidate.

And http://www.breastfree.org offering the “no reconstruction option”; checking out other options is always a good idea.

For additional referrals to information and resources regarding breast reconstruction please contact the social worker, at 877-RLC-2120, http://www.lacancerinfo.org to get the help you need.

February 4, 2011 at 12:16 am 1 comment

Hospital Discharge Planning Options, Skilled Nursing Facility, A Resource

I received a call from a patient, we’ll call her Lisa, about planning for discharge from the hospital after an upcoming cancer related surgery. Lisa is 83, lives alone, finished chemotherapy, and was now dealing with the additional treatment of her cancer. She requested referrals for personal caregivers because she thought she would choose to discharge to home from the hospital. After speaking with her about her present living situation it appeared that discharging to a skilled nursing facility was a much better choice. There she would receive nursing care and physical therapy rehabilitation. Her goal was to return to a state of independent living and the physical therapy available at a skilled nursing facility would help her regain the strength to do so. Lisa liked the fact that a skilled nursing facility is covered by Medicare, 100% for the first 21 days. I emailed her the list of skilled nursing facilities close to the hospital from where she was being discharged, and recommended, if possible, she visit them before making her decision. I let her know which facilities seemed to be the most popular, but encouraged her to choose the location at which she felt most comfortable.  Lisa was very appreciative for the guidance which seemed to help alleviate some anxiety about her plans after surgery. Lisa’s situation is an example of how an open discussion with a professional medical social worker can make a seemingly difficult situation easier and less stressful. Her choice to make these decisions in advance turned out to be more efficient than planning after hospital discharge.

 For free information about skilled nursing facilities and questions to ask when seeking their services, click here.

 For a list of Los Angeles based skilled nursing facilities, click here.

Phyllis Ruja Tell, MSW
Manager, Ronnie Lippin Cancer Information & Resource Line
www.lacancerinfo.org | Toll Free: 877-752-2120

December 30, 2010 at 11:26 pm Leave a comment

Leaving a Legacy, A Resource for End of Life

Leaving a legacy for family and friends is one way for a cancer patient with terminal cancer to leave their memory. Creating a legacy about one’s life that reflects accomplishments, cherished memories, and dreams is a valuable gift to family and friends. It can also help ease personal sorrow associated with leaving them behind.

The American Society of Clinical Oncology (ASCO) has a great resource with information for creating a legacy including video diaries, scrapbooks, writing letters to loved ones and many more ideas. It also includes suggestions on leaving a legacy for a child. For more information on leaving a legacy click here.

Animoto.com allows you to create beautiful videos from still camera photos. A step above the generic PowerPoint slideshow, leaving a photo video is another idea for leaving a legacy for your loved ones.

Imemories allows you to convert all types of media (old home movies, camcorder videos, photos, etc) onto a DVD. You simply mail the media to them, they upload it and you edit online and create your own dvd with all your favorite home videos and pictures.

Here are some more ideas on creating and leaving a legacy:
Collect and organize photos, letters, papers, etc.
Write down or record family stories
Collect and write down your favorite recipes
Record special family celebrations and traditions
Keep a journal
Hold a family reunion or gathering to capture recent photos
If you are a musician make a recording
If you are an artist, create a project that your loved ones can work on with you for you to leave behind
Making a recording so people can listen to your voice
Make a family tree and create a photo pedigree showing your ancestors

For more information about creating a legacy contact the social worker at Ronnie Lippin Cancer Information and Resource Line at 877-752-2120 or online at www.lacancerinfo.org

Phyllis Ruja Tell, MSW
Social Work Manager,
Ronnie Lippin Cancer Information and Resource Line
A telephone/internet outreach patient support program
at Tower Cancer Research Foundation

July 21, 2010 at 11:57 pm Leave a comment

Adolescents and Young Adults with Cancer

According to the National Cancer Institute, cancer occurring between the ages of 15 and 30 years is almost three times more common than cancer occurring during the first 15 years of life. Cancer survival rates for this age group used to be better than for older individuals, but during recent years the survival rates have leveled off and are not as good as they previously were. The majority of cases diagnosed in adolescents and young adults appear to be spontaneous and unrelated to either environmental carcinogens or hereditary cancer. Life as an adolescent or young adult is challenging enough; adding a cancer diagnosis only makes it more difficult to successfully conquer those challenges.

Young adults tend to spend a vast amount of time using the internet, social media and other electronic outlets. Cancer resources specific to young adults have not always been readily available but are being utilized with greater ease thanks to technology and the internet. This mode of communication is becoming a very useful mechanism to the 15-30 year old age group for finding the resources to help overcome the difficulties of a cancer diagnosis. A few resources listed below have harnessed the power of the internet, social media, and electronic outlets to speak to a younger generation of people about cancer and the effect it has on them.

Planet Cancer was founded by individuals in their twenties with cancer who wanted to fill the void in social services specifically required by this age group. Plant Cancer offers young adults affected by cancer a place to explore, discuss and cope with their cancer diagnosis, offering blogs, forums, community events like camping retreats and more. To learn more visit www.planetcancer.org

I’m too Young for This Cancer Foundation was developed to ensure that every young adult affected by cancer is given access to the best age-appropriate support they are entitled to.. For more information about their programming services, including “The Stupid Cancer Show” broadcast online by young adults with cancer for young adults with cancer, visit www.i2y.com

For information about local resources available in Los Angeles County for adolescents and young adults with cancer contact me at Ronnie Lippin Cancer Information and Resource Line at 877.752.2120 or at www.lacancerinfo.org

Phyllis Ruja Tell, MSW
Social Work Manager
Ronnie Lippin Cancer Information and Resource Line
At Tower Cancer Research Foundation

July 9, 2010 at 12:50 am 1 comment

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