This was written by my wife, Allyson, to provide an overview of what to expect during the surgery and hospital stay for CRS/HIPEC. Each person’s experience will be different, but having a general idea of the process and timeframes may be helpful.

Shane’s CRS/HIPEC Surgery Experience

When Shane was getting ready for his CRS/HIPEC surgery, I really wished we had something to reference as far as what to expect. I will try to outline some basics for those coming after us on this peritoneal meso journey.

Before Surgery

• Chemotherapy: Shane had 3 rounds of chemo while we battled insurance to go out of network.
• Surgeon Choice: We knew it was critical to have surgery with an experienced meso surgeon. In hindsight, Shane’s surgeon/hospital choice has contributed to him still being alive today.

Day of Surgery

What I Brought for the Waiting Room

• A few healthy snacks/meal items (important to eat healthy as Shane’s caregiver to take good care of myself!)
• Phone charger
• A few games (but we never could concentrate to play anything)
• Pillow/blanket
• Sweatshirt
• Advice: Keep it simple – you don’t need much!

Pre-Op Environment

• What to Expect: A lot of commotion and “bustle” in pre-op. Peritoneal meso is rare, and every researcher wanted a piece of Shane (literally!). We were happy to contribute, but when you’re super nervous, a mob of chattering doctors, nurses, and researchers outside your door signing paperwork can be unnerving.
• Tip: Ask your nurse to keep the area quiet and the door closed as much as possible. I was shaking from nerves until we got it quieted down.

Managing Visitors

• Crowd Control: About 50 people wanted to wait with me and the kids in the waiting room. We decided it would just be our kids, me, and one close family friend to keep everything calm and quiet for our nerves. 100% recommend you do the same.
• Community Support: A friend organized a prayer sign-up that we could point people to since everyone wanted to help out.

Surgery Details

• Duration: Lasted ~12 hours. By ~9 PM, Shane was in ICU recovering.
• Initial Recovery: First hour, he was groggy with only a bit of pain. A few hours later, overwhelming nausea set in, and we spent the night fighting it.
• Equipment: Monitors, IVs, catheter (very bloody – to be expected), NG tube (keeping stomach empty), and oxygen.

What I Brought for Shane’s Room

• Framed family photo: For his bedside – not only for him but for nurses to see what he really looks like and who his family is. As a nurse, I know patients are often just “a sick person in a bed,” and we love seeing the fullness of the special person we’re caring for. It adds a personal touch!
• Diffuser with lavender and peppermint oil: An absolute lifesaver! We kept it aimed at the head of his bed. Peppermint helped a lot with nausea. I also put peppermint behind his ears and on the back of his neck. When nausea was really bad, I waved the peppermint bottle under his nose.
• Heating pad: For me (his room was so cold).
• Phone, computer, and cords
• Pillow, blanket: For me.

For a complete list see here: https://unbreakablejourneys.org/resources/items-for-hipec-surgery/

General Tips for Hospital Stay

• Keep the room clean: Clutter-free, organized, and clean impacts recovery! I cleaned the room at least twice a day – people drop things off, medical staff leave supplies, bed linens get messy. A clean room feels SO MUCH BETTER!
• Daily hygiene: Bathe your loved one head-to-toe with shampoo, soap, and water every day (I started on Day 1), even if it’s difficult! A clean, fresh body feels SO MUCH BETTER and helps prevent infection.
• Movement is critical: It’s miserable, and staying in bed seems easier, but you have to MOVE! Recovery is SO MUCH BETTER this way.
• Work with nurses: Learn their names and offer to help with things like changing the bed or bathing. They’re busy and appreciate a family that’s involved and treats them well.

Post-Op Recovery Timeline

Post-Op Day 1

• Night: So-so. Lots of nausea. Awake on and off with nausea/pain. Woke suddenly at 5 AM in all kinds of pain.
• Physical Therapy (PT): PT moved Shane to a chair. It was an ordeal to move 2 feet. Took 2 people, with me waving peppermint oil to keep him from throwing up (didn’t work). He stood there throwing up and moaning because his abdomen hurt so badly. We felt horrible for him.
• Pain Management: Shane had an epidural placed before surgery, used for post-op pain relief.
• Occupational Therapy (OT): A few hours after PT, OT had Shane stand by the bed.
• Progress: NG tube pulled. Tolerated ~half an ice chip every hour.
• Caregiver Break: I left for an hour (traded with my daughter) to shower.
• Mantra for Shane: “One hour at a time, one foot in front of the other… and we will get to the other side of this.”
• Night Challenges:
  • 8 PM: Rough evening with nausea and pain.
  • 1 AM: Fever and elevated white count (expected after major abdominal surgery, but they drew blood and urine cultures).
  • 5 AM: Nausea worse than ever. More lab draws, no veins, so new IVs placed. Swollen all over, hard to find veins.

Post-Op Day 2

• Night: Lots of nausea and pain. Pain level 9/10, especially in his back.
• Kidney Function: Creatinine (marker of kidney function) worsened overnight. Surgeon said this happens ~20% of the time.
• Respiratory: Still on oxygen. Hard to take deep breaths due to pain. Chest X-ray done to rule out pneumonia.
• Movement: I got him to stand in front of his chair 4 times for ~3 seconds. It took every ounce of energy, and he felt like he’d pass out.
• PT Attempt: PT tried to get Shane to walk. Got everything disconnected, but he couldn’t muster the strength for one step. He was shaking and sweating and had to sit down. Decided to try again tomorrow.
• Nutrition: Sips of water tonight.

Post-Op Day 3

• Overall: Awful day.
• Night: Slept a few hours, then woke at 5 AM in a frenzy with horrible pain and nausea for 2.5 hours. Nothing worked.
• PT Progress: Shane walked 10 steps to the door – a win!
• Challenges: Spent the day battling extreme nausea and pain – Shane was crying out in pain. Confused and foggy from pain meds. Still on oxygen. Epidural didn’t seem effective.
• Note: Discouraging, but not out of the norm for recovery.
• Caregiver Break: A good family friend traded me out to spend the night with Shane so I could go home and sleep. Important to stay healthy for the long marathon ahead! Take breaks to care for yourself so you can better care for your loved one.

Post-Op Day 4

• Night: Shane’s dark night of the soul – definitely the worst part of recovery. Pain was so bad he was begging to die, thinking he was dying. This was unusual – his adrenal glands were bruised during surgery and his pain meds weren’t managed well. Our sweet friend stayed up all night rubbing his feet to distract him from the pain.
• Adjustments: Changed meds in the epidural and added other meds.
• Progress: Still in ICU. By day’s end, labs were turning around, color and energy starting to come back.

Post-Op Day 5

• Good Day:
  • Labs continued to normalize.
  • Catheter out.
  • Pain improving.
  • Still had epidural.
  • Walked a lap (using walker) and did well.
  • Still on oxygen.
  • Moved out of ICU!

Post-Op Days 6, 7, 8

• Milestones:
  • Started eating regular food little by little.
  • Walked without a walker.
  • Oxygen removed.
  • Epidural removed.
  • Took a shower!

Post-Op Day 12

• • Release from hospital

Summary

This CRS/HIPEC journey is tough—there’s no sugarcoating the long days, the nausea, the pain, and those moments that test your heart. But you will make it through. As caregivers, we’ve got to take care of ourselves too—it’s a marathon, not a sprint, and our loved ones need us strong. You don’t have to face this alone.

 

Reach out to us at Unbreakable Journeys for resources, a listening ear, and a community that gets it, ready to lift you up every step of this hard but hopeful road. You can reach us here: https://unbreakablejourneys.org/contact/