Cancer Caregivers Support Groups

Caregivers Need Sustaining

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Help the Helpmate

We certainly know that the caregivers for someone with a major, chronic illness can be burdened with many responsibilities. Whereas the patient can direct most energies into getting better, there is more on the plate for the surrogate nurse. The usual stress-reduction methods will help. However, there is an additional resource: the cancer support group.

There are several ways to find a group. My partner’s oncologist has support group names, addresses, and contact information on a bulletin board in the office waiting room. Furthermore, local hospitals can direct you to the right place. In addition, there are virtual social networks whose purpose is caregiver support.

Things to Consider

I suggest any of these questions to ask, the desired answer being dependent on your preferences and needs.

Is the group moderated or conducted by a medical or social services professional?

Is this group specific enough to my situation (some items may be the kinds of cancer discussed, the age of the caregivers, the age of the patients)?

Are they imparting useful information or is it neutral (or even harmful) to my mental well-being?

Is the meeting time convenient? Is the location convenient?

Is there a way to develop connections so that I could phone someone in between meetings?

For live and virtual groups – is the format one that works for me?

Not All Support Groups are the Same

Not all groups are the same. I found one at a hospital that was very depressing and “misadvertised” as one for caregivers. It was, in fact, a group of cancer survivors with multiple recurrences of cancer throughout their bodies. Rather than encouraging me and lifting me up, it pushed me down. This was NOT what I was seeking! In addition, I checked an online community wich operated by sets of strands that I did not find to be user-friendly. So, check out groups if you feel you need people who are in the same trench as you and persevere until you get your needs met.

A. C. O. R.

ACOR is the acronym for the Association of Cancer Online Resources. THIS is an excellent help for the caregiver and patient, although, being an online community, it does not provide real hugs. As it states on its home page: "ACOR offers access to 159 mailing lists that provide support, information, and community to everyone affected by cancer and related disorders." What I like about it is the disease specific content in a group, and the real word from people, patients, family, friends, in the trenches.

ACOR links

I am posting these links from ACOR in August 2011. They were focused on lymphoma in particular, but many are useful for other cancers.

National Cancer Institute statements on treatment of various cancers:
http://www.cancer.gov/cancertopics/pdq/adulttreatment Choose the L's -
scroll down to 'lymphoma'. Choose the health professional's version.

National Library of Medicine MEDLINE for research papers published on
various treatments:
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed

Lymphoma Research Foundation of America http://www.lymphoma.org

Steve Dunn's CancerGuide site re how clinical trials are run:
http://www.cancerguide.org

NCI clinical trials search engine:
http://www.cancer.gov/search/clinical_trials/search_clinicaltrialsadvanced.aspx

Drug assistance programs from pharma companies
http://www.cancersupportivecare.com/drug_assistance.html

FDA information on gaining early access to unapproved new drugs:

http://www.fda.gov/ForConsumers/ByAudience/ForPatientAdvocates/AccesstoInvestigationalDrugs/ucm176098.htm



Marrow donation: NMDP medical professional's newsletter
http://www.marrow.org/PHYSICIAN/Medical_Education/index.html

Document providers for obtaining full text of research papers:
http://www.infotrieve.com http://www.paperchase.com (Some journals
provide free access to full text -- try first via MEDLINE above before
ordering from a document provider.)

CancerEducation www.cancereducation.com

Lymphoma and leukemia acronyms - Burkitt’s
http://www.burkitts.org/acronyms.shtml

PatientCenters (chemo)
http://www.patientcenters.com/lymphoma/news/nhl6.html

LymphomaInfonet
http://www.lymphomainfo.net/lymphoma/glossary.html#W

General Medical dictionaries MedicineNet http://www.medterms.com/


Drug information such as route of administration and adverse effects
http://www.rxlist.com
http://www.nlm.nih.gov/medlineplus/druginformation.html

Health and medical calculators:
http://www.calculateforfree.com/online16.html

Alternative meds: http://www.quackwatch.com
http://www.cancer.gov/cancer_information/list.aspx?viewid=14821490-ee6c-4e7c-80b5-c4fb3cbbb07e
http://health-track.org/

All ACOR cancer lists and their archives (including ours):
http://listserv.acor.org/archives/

Interaction of citrus fruits and some drugs (liver enzyme Cytochrome
P450) http://www.consumer-health.com/services/cons_take14.htm

"Pocket reference" of meds that affect or are affected by Cytochrome
P450: http://medicine.iupui.edu/flockhart/

Caring for a port (venous access device)
http://www.cdc.gov/hicpac/pdf/BSI_guideline_IssuesMay17final.pdf

DoseCalc –various tools http://www.meds.com/DChome.html

ASCO (American Society of Clinical Oncologists) abstracts
http://www.asco.org/

NCI Office of Cancer Survivorship http://dccps.nci.nih.gov/ocs/

Castle-Connolly Guide to Best Doctors
http://www.castleconnolly.com/index.cfm?dws=ey

BEST HOPES for you all

Hang in there. 

hug, hug, hug

Photos and text copyright 2008 Maren E. Morgan

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