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The Reality of Grief

Friday, January 3, 2020

When at last Brett died, I expected peace, not chaos all over again. I’d buried him prematurely in my dreams throughout his illness, bracing myself, I suppose, for the inevitable. Now that he was truly gone though, I was unprepared for the tidal wave of grief within me. The first few months after Brett died were a blur.

New Court Ruling Voids the Affordable Care Act Individual Mandate and Leaves Rest of Law in Limbo

Friday, December 20, 2019

On December 18, 2019, the 5th Circuit Court of Appeals struck down the Patient Protection and Affordable Care Act (ACA) individual mandate that all Americans have health insurance. The rest of the law will stay in place for now as it is sent back to the lower court that must now determine whether the other parts of the ACA can stand without the individual mandate.

While the ACA will remain the law of the land for now, it’s important for all people, including cancer patients, survivors, and their loved ones, to understand what this ruling means for them.

The Research and Training Institute’s 2019 Year in Review

Friday, December 20, 2019

To cap off a productive 2019, the RTI looks back at highlights from the past year. Many exciting things happened for the RTI in 2019 including the addition of new staff members to our wonderful team and settling into our new permanent home in Old City, Philadelphia. The team also remains committed to conducting psychosocial and behavioral research through survey development, scale validation, and patient-centered market research projects so that we can continue to inform the services and support that the Cancer Support Community provides to cancer patients, caregivers, and their families. Read on to see some of the milestones and highlights from the past year!

Predictors of Social Function and Feelings of Isolation Among Metastatic Breast Cancer Survivors

Wednesday, December 18, 2019

The Research & Training Institute recently presented findings from the Cancer Experience Registry at the San Antonio Breast Cancer Symposium based on data from 273 Metastatic Breast Cancer patients and survivors.

CSC’s Patient Resources Earn Record Number of Awards

Tuesday, December 17, 2019

In a remarkable week of award announcements, the Cancer Support Community received multiple accolades. MyLifeLine, its digital platform, and our publications, social media, and radio show were recognized for their outstanding quality.

Cancer-Related Distress and Unmet Needs Among Acute Myeloid Leukemia (AML) Survivors

Monday, December 16, 2019

The Cancer Support Community shares important information about the relationship between psychosocial distress and unmet needs, as well as some suggestions about how best to provide AML patients and survivors with supportive care.

A Beautiful Death

Friday, December 13, 2019

The toll of Brett's cancer on his body made home hospice no longer a viable option. After his most recent seizure, he was admitted into hospice. Going into hospice was almost a relief. I lived with premature anticipatory grief for years knowing Brett's cancer was incurable.

Caregiver's Perspective: Shifting Moments

Friday, December 6, 2019

Being Brett’s wife and caregiver was a complicated role, and it strained my nerves. It was hard to simply rest my head on his shoulder the way I used to, or to express my own need for emotional intimacy and comfort when the gravity of his illness loomed large. I bounced back quickly from hurt feelings because there was no choice but to be present when we our time together as a family was diminishing. Every moment mattered.

3 Essential CSC Resources for Caregivers

Tuesday, December 3, 2019

The Cancer Support Community (CSC) strives to transform the lives of individuals whose lives have been impacted by cancer. This includes caregivers who support patients at each stage of the cancer experience from diagnosis to post-treatment. One way for CSC to understand more about the needs of caregivers is to ask caregivers to share their unique stories through the Cancer Experience Registry® (CER), an online research initiative that seeks to further understand the wide-reaching impact of cancer.

Utilization Management: What Patients Need to Know

Tuesday, December 3, 2019

One of the major themes dominating health care discussions today is the fact that healthcare costs in the United States are proving unsustainable. Practices known as utilization management (UM) are one of the major ways the high cost of health care has been addressed. The Cancer Policy Institute at the CSC will be releasing a series of blogs aimed at educating patients about different UM practices and techniques. The upcoming blogs will contain information that patients need to know, including how that particular technique impacts access to care, as well as advocacy opportunities to address those barriers to care.

Read this first blog in the series to learn more about UM, the different practices and techniques, and how CSC is fostering conversations about UM.

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