On a recent HOPE Zoom call, Pals around the world shared how they wrapped their heads around heading into CRS & HIPEC. This starter list is part of a Pals Tips Series: what to do before surgery, surgery prep, in hospital, going home, and long-term recovery. We broke it down to smaller, more manageable phases of transitioning through this Gold Standard of Treatment – cytoreductive surgery and hyperthermic intraperitoneal chemotherapy – for appendix cancer. We will revisit this series from time to time as Pals experience lends more insight on this life-saving procedure.

WHAT TO DO IN THE HOSPITAL

Set Milestones

• Set daily goals like sitting up in bed, moving to the chair, dangling your feet off the bed, walking to the door, completing 5 laps past the nursing station.
• Set goals for the week: moving into clear liquids then soft food, moving from epidural to oral pain medications (or none at all),
• Set goals for leaving the hospital: your first farts & bowel movement, removal of most/all tubes, solid bloodwork
• Use your white board to keep track of what you are working towards – the hospital exit!

Stay Ahead of Pain Management

• Pain is real and you do not have to suffer. That said, there is no way around the post-surgery discomfort.
• Pain medication helps with the pain but it also slows your gut motility which in the long run can delay your recover and leaving the hospital.
• Be aware that pain meds slow everything down, even your gut function, so migrating off when you can will help your digestive system resume normal function sooner. Constipation is common; your physician will most likely prescribe a stool softener.
• You will most likely transition from an epidural to oral pain meds to Extra Strength Tylenol.
• Ask for a standing order for two pain meds upon epidural transition. In the event you have a reaction to one pain medication, your nurse can quickly adapt to the other.

Get Moving

• Movement helps prevent blood clots and stimulates the gut to start moving.
• Don’t sit too long. If you can’t get out of bed, wiggle your toes, rotate your ankles, bend your legs.
• Walk when you are able. Start small (your bed to the room lightswitch), progressing to laps to and beyond the nursing station. In most hospitals, you will not be allowed to leave the floor.
• Move slowly and deliberately. Most likely you will be attached to tubes and IV bags in addition to the walker and hospital gown.

Hospital Dietician

• Speak directly with the hospital dietician.
• Request high-protein foods like jello (Gelatein 20 grams), Ensure (30 grams protein), The Magic Cup ice cream (290 calories, 20 grams protein).
• Stick with a low fiber/low residue diet to avoid obstructions in the beginning.
• Introduce new foods and harder-to-digest foods towards the end of your stay. Go easy.

Floor Staff

• Write down the names of your nurses, CNAs, housekeeping team members.
• Remember you are not the only patient they are taking are of…have patience but advocate for yourself.
• These people are your support team who helped you while in hospital; leave positive reviews when you get home. Some hospitals reward staff for positive reviews!

Physical Therapy (PT)

• Depending on your surgeon and the extent of your surgery, you may begin physical therapy at the hospital Or it may be delayed 6-8 weeks.
• While at the hospital, ask your PT if you can receive extra 1-on-1 sessions when another patient on the floor declines their time.
• Inquire specifically about pelvic floor physical therapy )for men and women)

Occupational Therapy (OT)

• Know that OT is different from PT.
• If you have an ostomy, ask OT to walk you through how to change the bag, noting how to care for yourself and possible issues to look for once you get home.
• If you are going home with a drain, know how to take care of that. Ask for supplies to take home. Order these prior to discharge so you have them on hand at home.
• Be clear on how to change wound dressings and the signs of trouble vs. good healing.

Social Worker/Discharge

• Accept at-home assistance offered with a visiting nurse, PT, OT, home aides, etc.
• Get your social worker’s direct number so you don’t have to navigate the hospital switchboard later.
• Ask the social worker how at-home services are covered by your insurance, for how long, how the re-evaluation process works, and how to get an extension, if needed.

Say Thank You

• Leave reviews of hospital staff who you believe deserve recognition. Complete hospital surveys.
• If you go for follow-ups, hand-deliver a basket of healthy snacks to your nurses station or ICU unit.
• If you are out of state, consider sending a heartfelt thank you card to your nurse; if sending email, “CC” the Human Resources Department and Head of Nursing so your nurse can be recognized appropriately.

Do you have something to add to this list? Email info@pmppals.net and we will add it for future Pals’ benefit.