Support Sites – a review

Our “Cancer Resources” section features a category called “Support Sites” – those sites dedicated solely to providing support to cancer survivors and caregivers like.  These are not the places to go to find information about specific cancers, their diagnosis and treatment, or clinical trials.

~ National Coalition for Cancer Survivorship represents one of the “big guns” in this category because of their strong advocacy position.  Their credo proclaims that “NCCS believes in evidence-based advocacy for systemic changes at the federal level in how the nation researches, regulates, finances, and delivers quality cancer care.” The home page is uncluttered and easy to navigate. Graphic blocks on the home page herald the major programs of the organization.  The Cancer Survival Toolbox stands out.  This program is offered as an on-line audio version that is also available as a downloaded file.  Both are in English or Spaqnish with a Chinese transcript also available.  Yoiu may also order a free CD copy.  Basic skill modules include: communicating, finding information, making decisions, solving problems, negotiating, and standing up for your rights.  There is clearly an empowerment theme here.  Other NCCS publications focus on insurance and self-advocacy.  A Cancerversary feature can connect survivors and family members.  The header menu lets you select information about NCCS, view their various lobbying efforts, or an interactive community page available for telling your own story.  We bloggers sometimes fall into the habit of operating in isolation or maybe from a smaller blogging community. NCCS can remind us that the issues and solutions are much bigger than ourselves.  NCCS National Coalition for Cancer Survivorship

~ Cancer Care is another long-term organization, this pone established in 1944.  Readers may find their distinctive logo familiar from their publications found in oncology waiting rooms.  But they are much more than their publications.  They offer counseling support in person or via telephone by oncology social workers.  They offer support groups and workshops, as well as limited financial aid.  This is another well-designed, uncluttered site.  Major navigation is accomplished from the header selections depending on whether the reader is a survivor, caregiver, or healthcare professional.  Some of their booklets, including those on glioblastoma and multiple myeloma, are now available on-line without the need to download as PDF documents.  In true 21st century fashion, some of their workshops are offered as podcasts thru iTunes. Readers can also submit questions for a monthly expert forum.  A calendar on the home page lists upcoming workshops.  Cancer Care has staked out a unique collection of services in cancer support.  CancerCare :: Professional Support for People Affected by Cancer

~ Help With Cancer and What Helps, What Hurts, What Heals are blogging format sites maintained by cancer survivors.  Help With Cancer offers daily bits of news and information from major news outlets regarding cancer issues.  Lori Hope’s site, on the other hand, offers down-to-earth advice and daily pearls of wisdom.  HelpWithCancer.Org and   What Helps. What Hurts. What Heals. – CarePages

~ Families Facing Cancer is a UK site dedicated to giving emotional and practical support.  “We believe that cancer does not affect just one person – those who are also touched by a diagnosis can include those caring for cancer patients, family, friends and even employees. This is what we mean by the cancer fallout zone.” The site is almost wholly the effort of Anne Orchard, and experienced “life coach” and her husband.  Together they run Rainbow Heart Publishing.  Anne’s book Their Cancer – Your Journey lies next to my desk, awaiting review.  Here is a site that you can contribute to by merely filling out a 20 question survey.  So stop by when you have the chance.  While there, check out their unique Resources section for some unusual but helpful links.  The design of the site is very clean and easy to manage.  Sign up for the free newsletter. » Families Facing Cancer – Helping carers to cope with cancer

~ Cancer Survivors Network is a program of the American Cancer Society.  You can open your own personal space to share your cancer story, photos, and other news.  You can also use it as an on-going journal or blog.  There are discussion boards and chatrooms to communicate with others with similar diseases or issues.  Boards are divided into 25 different cancers.  Other boards are tailored for groups with specific needs including military cancer survivors, gays, lesbians, senior survivors and young people.  Cancer Survivors Network

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About Dennis Pyritz

Dennis W. Pyritz, RN, BA, BSN, has been a cancer nurse since 1987 and a cancer and bone marrow transplant survivor since 2004. In December 2001 he was diagnosed with t-cell prolymphocytic leukemia (T-PLL), a rare aggressive form of chronic lymphocytic leukemia (CLL). Dennis was treated with the then new monoclonal antibody, alemtuzumab (Campath) as this disease has a median survival of 7.5 months. He achieved a 26 month remission but relapsed in February 2004. He was retreated with Campath and went into a second remission. In August 2004 he underwent an allogeneic peripheral blood stem cell transplant with his brother, Mark, as donor. Dennis has remained in remission since - a near miracle. Throughout his career as cancer nurse and patient, Dennis has had the opportunity to speal to both lay and professional groups. Dennis has spoken on cancer topics and survival issues across the country as well as in the United Kingdom, Norway, Austria, Portugal, Honduras, Panama, Guatemala, Trinidad, United Arab Emirates, Jordan, Cyrpus, Israel, and India.

Comments

Support Sites – a review — 1 Comment

  1. Hi Dennis-
    Thanks for reviewing our site, http://www.HelpWithCancer.Org. I appreciated your comment on our blog letting us know about the review. (By the way, your site is great!) Here is comment I wrote back to you there:
    Ouch! Not that they were unkind–and any mention is good. But you could tell they preferred the other patient blog they reviewed at the same time. They wrote:
    ~ Help With Cancer and What Helps, What Hurts, What Heals are blogging format sites maintained by cancer survivors. Help With Cancer offers daily bits of news and information from major news outlets regarding cancer issues. Lori Hope’s site, on the other hand, offers down-to-earth advice and daily pearls of wisdom. HelpWithCancer.Org and What Helps. What Hurts. What Heals. – CarePages
    I went to Lori Hope’s site. Lots of uplifting thoughts and sayings. Nice! But comparing our two sites is like comparing night to day. Still, I can see how someone who is just flipping by and doesn’t know our history, or read our comments at the end of each post, might think HelpWithCancer.Org is a bit impersonal–even corporate. Actually, I aspire to something right down the middle. My other http://www.multiplemyelomablog.com comes closer. I think I will post about this tomorrow. Thanks for the heads-up! Pat

    Keep up the great work! Oncology nurses rule the world! Seriously, I owe my life to several–as does my wife. Pat

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