Categories
Academic Care and Recovery Patient Experiences

Emotion Work During Colorectal Cancer Treatments

  • Silence -> seen as ‘not getting upset in front of each other’ -> preserves relationships in CRC oncology clinic
    • Silence as relational form of moral work that preserves others’ well-being
  • Studies show a lot of emotional distress among patients with and beyond CRC
    • 1/5 people affected by CRC has a post-cancer diagnosis of depression
  • Emotion work in surface acting vs. deep acting
    • Embodied emotional experiences and the performative role of emotions
  • The study follows participants through treatment pathway until there was no evidence of disease in their bodies or referred to hospices
    • Some focus on pragmatism/practicality rather than emotions
    • Many manage expressions of emotions continuously in front of others
  • Nurses are cognizant of emotional texture of cancer treatments

“We just try to open it up and give them an opportunity to talk about [what they are feeling]. It is often letting them be cross, or to be angry, or to be frustrated, because all are logical and normal emotions to have during cancer treatments”

A Filipina senior chemotherapy nurse.
  • Staff and health professionals also have to do some emotional labor -> keeping boundaries and maintaining balance between distance and closeness to patients while keeping their emotional peace
    • Nurses are expected to connect with patients to do emotional labor in contrast to physicians, many of whom decided to pursue a ‘happier’ field
  • Many patients in the CRC support group disclosed the need to do emotion work as to not ‘burden others’ in fear of damaging relationships with others
    • The relatives also experience this fear of being a burden
  • Existing norms surrounding emotional management of relatives -> to not be upset because expressing it would impact their loved ones

Silence: reconsidered as relational practice of moral work, not maladaptive coping behavior

  • Reflections/questions:
    • Silence as moral relational work connects to
Categories
Chemo Patient Experiences Side effects Treatment and Side Effects

Folfox and Oxaliplatin Induced Neuropathy

Seven months since ending Folfox and my oxaliplatin induced neuropathy isn’t getting better.

  • Neuropathy could be permanent
  • Others had it dissipate at 18 months or so
  • Vitamin B, lyrica, Gabapentin, and supplements as helpful, and other coping mechanisms such as hand warmers, socks and specific types of shoes
  • Reflections/questions:
    • How can alternative medicine and other types of alternative healing help cancer survivors?
    • There should be more structured post-chemo care for survivors and more long-term follow up, as many people have permanent body disfigurements, disabilities, and other changes
Categories
Chemo Patient Experiences Side effects Social Media Treatment and Side Effects

N.E.D Today!

N.E.D = No Evidence of Disease (Cancer free)

  • A Reddit thread composed of a survivor’s POV discussing that he’s cancer free
    • r/coloncancer also composes of other posts and comments regarding colon cancer experiences
    • Community building and helpful for sharing advice, experiences and to ask for help/support
  • CarcinoEmbryonic Antigen (CEA) is a tumor marker and its levels are very low + clear scans -> N.E.D status
  • Side effects of XELOX chemo: hair thinning, intolerance to cold, nail shedding, neuropathy in hands/feet, short term memory retention issues
    • Neuropathy can last 18-24 months
  • Reflections/questions:
    • It seems that many cancer patients are very familiar with scientific and complex biomedical terminology (overall in the r/coloncancer thread) -> is this common for many patients of other cancer types?
      • Importance of agency and communications/understanding as a cancer patient
    • Neuropathy as common side effect -> Should be studied more in research
      • Other side effects of chemo and radiation should also be given more attention to
    • Community and support groups as very helpful and therapeutic to many colon cancer patients
Categories
Patient Experiences Young People, Screening, Prevention, and Diagnosis

This Is What It’s Like to Be Young and Living with Colon Cancer

“The first words that came out of my mouth were, ‘But I ‘m only 27.’ I couldn’t say much because I was in shock.”

Betancourt, upon hearing her diagnosis. https://www.self.com/story/young-women-living-with-colon-cancer
  • Rates of colorectal cancers are increasing among millennials
  • Both Rosen and Betancourt needed to have treatment right away and have surgery to remove the tumor (or in Rosen’s case, her entire colon had to be removed as she has Crohn’s disease which means her colon is at risk of developing cancer again)

  • Side effects and changes from treatments and cancer:
    • Betancourt: Ileostomy and losing hair as side effects made her feel like she was losing her identity and worth
    • Betancourt also needed a hip replacement after a chemo drug damaged her hip
    • Rosen: treatments impacted her fertility and a routine colonoscopy caused her to have to remove her rectum and anus
    • Challenges with body image, confidence and dating
Allison Rosen in the hospital

This is not just an old person’s disease.

Betancourt, https://www.self.com/story/young-women-living-with-colon-cancer
  • Reflections/thoughts:
    • Important to have young patient voices and advocacy to dispel the myth that cancer is an ‘old people disease’
      • Jain also discussed this in Malignant: Lack of patient education is a big problem that affects young adult survival
    • Illuminating side effects and changes due to cancer that is not often spoken about, especially for a cancer like colon cancer where people don’t want to speak about (or hear about) bowel movements or organs related to them
    • Permanently disfiguring for both Rosen and Betancourt
Categories
Patient Experiences

Beating Stage 4 Colon Cancer with Trust, Treatment and Community

A Stage 4 colon cancer survivor shares his story

  • Phil Scamihorn’s story, also recounted in his blog
    • Decision to get a blog -> To keep others informed of progress and gain a community supporting him
  • Community as crucial
    • He offers support to newly diagnosed patients
    • Online support community Cancer Survivors Network
  • Scamihorn did his own research and got second opinion from other oncologists
    • The oncologist team that he went with won his confidence/trust
    • Hope, trust and common goal-setting as an important factor in patient-doctor relationships (“Most important, the doctor told him that stage 4 colon cancer can be cured”)
  • Scamihorn was diagnosed at 47 so his children would be screened 10 years earlier

“There are many patients in the online support community who have had five years without cancer,” says Scamihorn, now 53. “I also encourage people to find a doctor they trust, someone they’re comfortable with, and let them do their job.”

https://healthblog.uofmhealth.org/cancer-care/beating-colon-cancer-trust-treatment-and-community
Scamihorn, pictured on the right.
  • Reflections/thoughts:
    • His decision to get a blog -> connects to this resource discussing importance of cancer patients writing/creating media as outlet and to shape identity through experience -> authentic patient voices help dispel illness myths and deepen understanding
    • Trust and communication as crucial -> Scamihorn felt more trust and confident working with his second opinion
      • How can doctors better use this understanding to inform their practices?
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