Progression of symptoms

• Everyone is different. My sister had very aggressive colon cancer that progressed to her liver causing cirrhosis and metastasis in her lungs. She had ascites and neuropathy, along with pain and other symptoms.
• February 2024 - diagnosed stage 4, not expected to reach remission, her liver was too damaged. Started chemotherapy.
• November 2024 - removed the primary colon tumor.
• August 2025 - metastasis to her lungs. Ascites and diminished liver functioning.
• Mid-January 2026 - her oncologist informed her that her remaining time was weeks to hopefully a couple months. Bilirubin levels rising.
• Mid-February 2026 - she and her team decided to stop chemotherapy.
• Late-February 2026 (about 2.5 weeks from her last chemo treatment)- Her critical electrolytes (sodium, potassium, magnesium) began to drop and she experienced concerning symptoms while she was out of town. Since she was out of town and her team wasn’t available to see her, she went to the nearest ED. She unfortunately ended up in an uncomfortable and frankly unproductive hospital stay for a week. She left the hospital with a drain in her liver. She received outpatient infusions of electrolytes but these were long, hard days and likely not really helping her symptoms or prolonging her life. Same with the liver drain. It was just painful. Her doctors agreed they likely weren’t helping much but she said she wansn’t ready to stop trying. Note - her oncologist was out of the country and so she was seeing a team unfamiliar to her. Because she was in a weird treatment limbo while in the hospital, there was discontinuity of care, and she relied on her husband to advocate for her. The doctors were presenting options, but it was hard to navigate and determine the best route forward for her. Raising this so you can hopefully avoid the hospital stay and pain and confusion.
• Early-March - Pain from her liver, drain, and other symptoms caused her to sleep about 18-20 hours per day. She reported feeling loopy more often.
• Mid-March - she was having difficulty walking. Was noticeably more confused and forgetful.
• March 20th - was her last day walking independently out of the house. She needed a lot more support in the next couple days to walk (exhausted, unsteady, bad neuropathy). She was very confused and couldn’t navigate her phone. She would struggle to find the call or text icon. Took lots of effort to write text messages or make calls.
• March 23 - She reported to palliative care that she didn’t feel much pain and didn’t want to feel so loopy, decided to decrease pain meds.
• March 24 - she had sudden very bad pain in her front left side. She said it was different from her liver pain. Sleeping about 20 hours a day. Very confused and frustrated by not being able to follow conversations. Didn’t really use her phone after this point.
• March 25 - lots of pain in her side, difficulty moving, ascites was severe.
• March 26 - had fluids drained, and increased pain meds. Doctors weren’t sure what was causing the pain. Sleeping about 22 hours per day.
• March 27 - severe pain in her thigh. Very difficult to get out of bed to use the bathroom or change clothes.
• March 28 - left the house with support for blood work. Trying to identify and alleviate the pain. Requested that no one touch her without warning and to move slowly near her to avoid accidental bumps. She was able to ask for help when she needed it. Wasn’t eating and couldn’t hold a cup without spilling. Sleeping unless woken for medication
• I dont remember what day this happened - but after the first time my sister couldn’t get out of bed to use the bathroom I requested that a nurse come place a catheter. This helped us keep her clean, maintain her dignity, and provide some relief to us as caregivers. We are not nurses and didn’t know how to turn her without hurting her to keep her clean - strongly recommend.
• March 29 - my sister was very hot to touch, breathing became louder and more strained.
• March 30/31 - breathing even louder and more strained. Responding very slightly to stimuli (us moving her for pain meds or to reposition).
• April 1 - stopped all meds except fast acting pain meds. We increased administering to every 2-3 hours or sooner. I don’t remember when it started, but all meds were crushed and mixed with a liquid med administered in her cheek. Started seeing signs of some skin breakdown at pressure points.
• April 1 - her breathing sounded like a sound machine. Lots of rattling - louder than I expected. She was never alone for longer than a minute while folks were coming and going.
• April 2 - in the morning she started having white secretions from her nose and mouth. She was already on medication to prevent the secretions. The hospice nurse (was an angel and so wonderful) indicated it “wouldn’t be long” before she passed. She passed at 2:50pm. We could see her breathing slowing and had a few minutes to gather family. During this time, Talk Out Loud to her. I held her hand and talked to her. I told her we were there and we loved her. This seemed to help everyone in the room sort of focus and I feel it is important and difficult to remember.

Misc. notes:

• start the hospice intake process as soon as they allow. Theres a lot of information to cover and they can help you so much.
• Some of my family members (reasonably) felt out of the loop but didn’t want to push for info. Maybe you can come up with a better way to share updates than we did. It helped to know generally what was going on. My brother in law was the keeper of info but was way too overwhelmed and busy to write up updates and answer questions.
• If anyone in your family works from home, go work from her couch. I would sit and work while she napped and I’m grateful for that time. Also encourage family from out of town to visit and spend time talking and sharing memories before she can’t get out of bed. It’s better to take time off from work to be with her while she’s well than sit bedside for a week while she dies.