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cancercushion.bsky.social
Cancer Cushion
@cancercushion.bsky.social
25 followers 59 following 13 posts
www.cancercushion.com

Evidence-based 🎗️ mental health resource library made available online, on demand. Childhood, adolescent, and young adult cancer advocate.
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Reposted by Cancer Cushion
tomkindlon.bsky.social
"Never-Words for Patients With Invisible Illnesses – Liza Di Leo Thomas, MD"

From:
When We Don’t Have All the Answers: #LongCOVID and the Need for Humility in Medicine

www.ochsnerjournal.org/content/25/3...

#invisibleillness #LongCovid #chronicillness
#hiddenillness #ChronicIllnesses
Table 2. Never-WordsforPatientsWithInvisibleIllnesses– Liza Di LeoThomas,MD Di Leo Thomas, L Never-WordPhrase Alternative Explanation “But you look fine.” “At least you don’t look sick.” “Great news! All your tests are negative!” “You can’t believe everything you see online. Let’s not diagnose you based on a TikTok influencer.” “At least you’re not bedbound, wheelchair bound, don’t have cancer, et cetera, et cetera, et cetera….” “Wedon’t knowmuchaboutthisillness. There’s nothing I can do for you.” “It must be frustrating to feel so awful.” “The goodnewsiswehaveruledout (A, B, C) by doing these tests. But I believe there is something wrong, and I will work with you to figure it out.” “Thank you for taking such an interest in your illness and advocating for yourself. Let’s talk about what you saw online.” “It sounds like you are suffering with this quite a bit. Can you explain how it has affected your quality of life?” “I realize the research on Long COVID is slow to come, andIcan’t imagine how frustrating that is for you. Let’s see whatwecandorightnowtotreat someofyoursymptomsandimprove your quality of life.” Telling patients they look fine may make themfeel like you are doubting their illness, even if you are not. Somepatients maynotfeel like it is great newsthat test after test is negative whentheyknowsomethingis absolutely wrong with them. Online communities have become ahuge source of support for patients with LongCOVIDandotherinvisible illnesses. Hearing someone else describe the same symptomscanbe incredibly validating. Avoid dismissing these sources outright. Avoid starting with “at least,”which can sound dismissive or invalidating. Instead, explore how the illness impacts the patient’s life. Even without definitive treatments, providers can offer symptom managementandhope. Acknowledging the patient’s frustration while focusing on what can bedoneisempowering.
September 27, 2025 at 12:52 AM
cancercushion.bsky.social
Grateful to have been featured on one of my favorite podcasts this week!

#ChildhoodCancer #HelpAndHopeHappenHere

open.spotify.com/episode/3Fbo...
Dr.Allie Neenan is the Founder and Director of the very comprehensive Resource Library called CANCER CUSHION and will talk about the many specific facets of the Pediatric Cancer Experience
Help and Hope Happen Here · Episode
open.spotify.com
May 17, 2025 at 3:13 AM
cancercushion.bsky.social
A reminder for #AYA cancer awareness week that young cancer patients are disproportionately affected by cuts to Medicaid and clinical trial funding.

www.nbcwashington.com/news/local/m...
Mom with stage 4 cancer approved for clinical trial after NIH funding cuts left her in limbo
Brooke Kajdy, who lives in Canada, was pregnant with her son when she was diagnosed with stage 4 B-cell lymphoma.
www.nbcwashington.com
April 1, 2025 at 2:05 AM
cancercushion.bsky.social
I wholeheartedly reject the capitulation from APA on DEI. Anti-racism is not "illegal discrimination" and every day that we let that lie grow is putting people's lives at risk.

#APA #AmericanPsychologicalAssociation
March 28, 2025 at 1:39 PM
Reposted by Cancer Cushion
calvinklai.bsky.social
Extremely disappointing & cowardly. The American Psychological Association is rescinding diversity requirements. Not due to any actual mandate from the federal government, but only because it may *someday* face pressure from the government www.nytimes.com/2025/03/27/h...
Under Pressure, Psychology Accreditation Board Suspends Diversity Standards
As the Trump administration threatens to strip accrediting bodies of their power, many are scrambling to purge diversity requirements.
www.nytimes.com
March 28, 2025 at 1:16 AM
Reposted by Cancer Cushion
madhupai.bsky.social
The speed at which American universities & companies are giving up on DEI is a dead giveaway that they were never serious to begin with
March 28, 2025 at 2:07 AM
cancercushion.bsky.social
I stand with my colleagues who have dedicated their careers to research and are now questioning their futures due to #NIH funding cuts.

Use #ThanksToNIH to show your support for research that matters to you.
March 28, 2025 at 2:40 AM
Reposted by Cancer Cushion
truthistheword.bsky.social
We need to acknowledge that her community (2000+) did stand up in less than 24 hours. We need to support her and the others and stand up too! Please celebrate and praise the shit out of these communities that stand together.
www.tuftsdaily.com/article/2025...
Over 2000 protest in wake of student detainment - The Tufts Daily
Students and local activists gathered on Wednesday evening at Powder House Park to protest the detainment of Tufts graduate student, Rumeysa Ozturk, by federal authorities on Tuesday. The protest...
www.tuftsdaily.com
March 27, 2025 at 10:45 PM
Reposted by Cancer Cushion
jeremymberg.bsky.social
Ruining studies and potentially harming research subjects...

Abruptly terminating clinical trials...

Ignorant and evil

www.theatlantic.com/health/archi...
The NIH’s Most Reckless Cuts Yet
Ending clinical trials with no warning can put patients at risk.
www.theatlantic.com
March 27, 2025 at 11:41 PM
Reposted by Cancer Cushion
docsirianni.bsky.social
Thanks @lynnjolicoeur.bsky.social for the in depth discussion + raising attention to these issues! Attacks on NIH are attacks on the future of medicine and technology in our country. Spending freezes, hiring freezes, delayed funding, lost funding opps, fewer trainees— the damage is real + growing
March 28, 2025 at 1:36 AM
cancercushion.bsky.social
Health disparities in #cancer care are well documented. Terminating grants to address them is reprehensible. I stand with all who are affected by recent #NIH cuts.
March 25, 2025 at 4:46 AM
cancercushion.bsky.social
#AYACancer has profound and unique impacts on the mental health of teens and young adults. Learn more about how to support them at CancerCushion.com/TeenAYA
March 22, 2025 at 3:27 AM
cancercushion.bsky.social
Parents are profoundly impacted by a child's cancer diagnosis. Learn more about how to manage your own mental health after a #childhoodcancer diagnosis at CancerCushion.com/Parents 🎗️
March 18, 2025 at 3:08 AM
cancercushion.bsky.social
Siblings of children with cancer have their own unique and difficult experiences. Learn more about ways to help #childhoodcancer #supersibs at CancerCushion.com/Siblings 🎗️
A graphic featuring blue text on a white background that reads "bad news: siblings of children with cancer often feel overlooked" and "good news: there are lots of ways to give support and make things easier". A yellow and green hexagonal logo for the brand Cancer Cushion is located in the bottom right corner.
March 11, 2025 at 3:48 AM
cancercushion.bsky.social
Grief is a lifelong journey, with many emotions that come and go across time. You can learn more about how to support loved ones through grief at CancerCushion.com/Grief 🎗️
March 10, 2025 at 3:17 AM
cancercushion.bsky.social
Some burdens are just too heavy to carry alone. Know that there is always power in community, especially the childhood cancer community. What we carry together gets lighter 🎗️
March 8, 2025 at 4:26 AM
cancercushion.bsky.social
In over 10 years of being involved with the childhood cancer community, never have I seen it come under attack like this. To all the families out there fighting the good fight, know that you're not alone. #fightlikeakid
March 6, 2025 at 3:27 PM
cancercushion.bsky.social
1 in 260 children is diagnosed with cancer. That leaves 259 of us to help. Learn more at cancercushion.com/familysupportguide
An image with a white background and black text that reads "Childhood Cancer Family Support Guide." The words are surrounded by hexagons in yellow, blue, and green. In the bottom left corner is the yellow logo for the brand Cancer Cushion.
March 5, 2025 at 4:13 AM