When treating us for appendix cancer, most doctors prepare us well for the surgery ahead, explaining copious paperwork, requisite hospital stays, recovery expectations, and HIPEC technicalities. They get us through tests, scans, consults, and discussions that ultimately land us in the operating room (OR) for 5 to 15 hours. It’s a lot to take in.
Many physicians don’t want to scare us away from the lifesaving surgery and standard of care that adds years to our lives. Other professionals refuse to burden our thinking (and create worry) with a littany of side effects that may – or may not – happen. Almost all of them underestimate the amount of time it takes for us to return to Life at our New Normal. Yes, there are those standby considerations: “Every patient is different,” and “Recovery is not linear.” But really? Wouldn’t you like to know?
With all that in mind, we compiled 16 “revelations” Pals experienced after CRS/HIPEC procedures. We are not medical experts, so simply note this list, and discuss these topics with your appendix cancer specialist and medical team. Not all side effects happened to every Pal, or even most of us. But they do occur often enough that we thought you should be aware. Because you can’t help but ask “Is this normal?” Most times, yes it is. This way, you can prepare yourself mentally in case it does happen to you and you can pivot. (We compiled this list from personal experiences shared during twice-weekly, PMP Pals HOPE Zoom meetings.)
Hair loss:
After HIPEC treatment, some Pals experienced hair THINNING in the first three months post-HIPEC. All who lost hair experienced regrowth in Months 5-6-7.
Ileus:
Doctors often refer to the ileus as a “sleepy intestine that needs to wake up.” We call it a recipe for vomiting and should be monitored closely. Farts, while good indicators of an awakening gut system, are not “poops.” Be honest about your progress with your medical team. Returning to the hospital after discharge for a still-to-wake-up colon degrades mental recovery momentum. Walking can help, but sometimes Time just has to do its thing.
Shoulder/arm/hand soreness/numbness:
You were just in the OR for many hours, lying down in the same position. We don’t do this when we sleep in our own beds. Pinched nerves are possible but rarely happen…until they do. Talk to your doctor. Some Pals found relief with a gentle chiropractic adjustment; others needed additional expertise to remedy. Still others found the soreness and numbness dissipated with Time.
Difficulty breathing:
Let’s be honest; someone just had their hands (and tools) in your abdomen. It takes time for things to simmer down and find their right place. This may take days, weeks, months. Many people experience difficulty taking in a full, deep breath. There are several reasons for this. First, your surgeon may have removed portions of a diseased diaphragm. Discomfort may also be residual from the inflated abdominal cavity during HIPEC treatment. Lastly, abdominal clamping used to keep the belly open for surgery can cause internal bruising of your rib cage and oblique muscles that you can’t see. Our experience suggests continuing to use your hospital-issued spirometer at home. Experiment with the 4-count Box Breathing Technique. Talk with your specialist or physician’s assistant if the difficulty persists. If at any time you are experiencing pain or have concerns, advocate for yourself immediately and tell your clinician!
Decreased appetite:
The intestine begins healing within an hour of surgery. And it will continue to heal and adjust to its new length and function over time. When you get home, you may want to eat everything in sight or have no urge to eat at all (usually due to fear or exhaustion). Be gracious with yourself, but make every bite count. Include protein-rich and max-calorie shakes and food combinations post-surgery. Protein provides the building blocks for repairing tissues. If you are having trouble with protein, it’s ok to default to what works for you, even if it’s pound cake…as they say: Life is short, eat dessert first!
Inability to eat certain foods:
As your intestine heals, you may go through periods of digestive change where you tolerate one food well but not another. Then a week later, it reverses. Keep a Food Diary to track your progress. You may discover you have a food allergy that was long masked by other symptoms. Or you may need to switch it up and eat smaller, varied, frequent meals throughout the day. Many foods may move from “Definitely Not Eating That Now” to “Maybe I’ll Try That Again Later” timelines.
Weight loss:
So, you stop eating the day before surgery for bowel prep. Then a week or two passes before you are managing solid foods. Pals have lost anywhere from 15 to 80 pounds while in hospital. Once you return home, monitoring your weight is part of your wellness job. Ask for guidance or a food plan to follow. Creating “mass” is hard to do; don’t wait until you are dangerously low on the scale. Weight loss slows healing, forces your body to improvise, and robs you of needed energy to feel well. TPN (total parenteral nutrition) is a medically prescribed approach to halting declines and is overseen by your medical team. Weight gain needs strategy; check this other blog post about protein and caloric add-ins for smoothies and meals.
“What’s up with that?” episodes:
Many Pals experience diarrhea, constipation, and unpredictable elimination. Some are advised to use diarrhea medications (Lomotil, Imodium) to gain control over unexpected bowel movements. Others need medications to address bile imbalances created by gall bladder removal. Still others simply adjust their diets and decrease water consumption when eating to “prolong transit” (the rate of food moving through the intestinal tract between entry and exit). Other Pals have the opposite problem. As we experiment with food, we will eventually find the sweet spot of fiber, yogurt, or a toasted slice of refined wheat bread to stabilize a reactive gut. Keep a “Poop Diary,” noting the foods you eat and what happens, and in what timeframe. Then work with your nurse practitioner, nutritionist, or dietician to uncover an approach that works for you. Remember too, that as your gut heals and improves, so may your tolerance to certain foods and their elimination.
Abdominus Recti (aka hernia):
Don’t worry, your guts won’t spill out on the floor like a B-movie horror flick. Abdominus recti – the separation of your interior suture line generally between the abdominus rectus muscles at your belly’s midline – is common. Hernias can pose issues for bowel obstruction as the intestine loops out of the abdominal cavity to a space just under the skin and then loops back in. Monitor this closely with your physician. Be smart. To avoid hernia in the first place, heed post-op instructions to minimize lifting of anything over 5 pounds for Weeks 1-8. Gradually increase core activity and impact over time. Wear the abdominal binder. And seriously, no lifting grandchildren, grocery bags, laundry baskets, or ladders in the early months of recovery.
Bumpy suture line:
Some patients note an uneveness between the two sides of their belly, left and right of the suture line. Upon closure in the OR, your surgeon cannot match your ab muscles up like they were before. But they will do their best. In many cases, the peritoneal lining has been removed on one side and not the other. And in the absence of removed organs, what’s left will settle into their new spaces within your roomier interior. When advised by your physician, try easy elongating massage with a scar cream to smoothing out a bumpy suture line.
Belly buttons:
Moved, missing, or relocated – have this belly button conversation BEFORE surgery! Living without a navel removes mindless gazing, but you certainly want to be prepared for that visual when the dressing comes off. Sometimes, your surgeon can fix a wonky belly button and you come out ahead after surgery. Lint catchers – you have been forewarned.
Tubes – everywhere:
Tubes can be a good thing, even in places where you don’t think they should be. Tubes help you heal quicker. They also give you progress milestones. Tube removal – catheter, epidural, NG (nasogastric tube), drainage, IVs, etc. – are signs of healing and getting a step closer to the hospital exit door.
Weepy suture sites:
Serous, or serousal, fluid is a natural by-product of inflammation and a healing gut. Generally, this fluid is absorbed internally by your body. Sometimes, this fluid seeks the easiest way out, usually an incision site. Keep your dressings clean and monitor for redness, warmth, or hardness which are early indicators of possible issues like cellulitis or infection. Eventually, swelling and weepiness subside. Unsure how to change your dressing at home? Ask your nurse or wound-care specialist to show you how, while you are still at the hospital.
Lack of energy:
Your body is healing inside AND out. So while your abdominal scar staples are removed in two weeks, and that midline scar is healing nicely during weeks 3-4, the inside of you still has a long way to go. This healing requires ENERGY. Give your body what it needs. Eat small frequent meals, chew your food, and focus on easily digestible, high-protein food selections when possible. Nap frequently. Minimize long visits from old friends. If you think a task will take you 10 minutes to do, double it. And be gracious with yourself. Many Pals saw their energy level return in Months 4-8.
Longer recovery time:
We see progress at different rates because we had different procedures done. And we’re different people, at different physical ages and fitness. Pals undergoing longer surgeries involving extensive organ involvement tend to take longer to heal. Most Pals see energy return around Month 4 and “normalness” around Month 8. The Pals majority began feeling like themselves a year post-op. Be patient. Set small milestones for yourself like sitting up in bed without groaning, walking upright (no shuffling) to the bathroom on your own, or heading down stairs unassisted. Push yourself gently but don’t badger yourself. Work within your limitations and take baby steps forward to a long, slow, and consistent recovery.
@&$% happens.
Surgery is a body trauma. Some Pals experience delayed recovery due to complications, predictable or not. Recovery is also a mental marathon. You don’t need to anticipate a setback but understand it’s possible, and that’s ok. On the other hand, seamless recoveries are possible! Be optimistic about your recovery timeline and set realistic expectations.
Mind you, NONE of this may happen to you. We put these items in the “I Wish I Had Known Beforehand” category. The mental game is a huge part of positive recovery scenarios. If we wrap our heads around the surgery and what to expect physically ahead of time, we can divert more mental energy to driving through the long game to LIVING Life Well.
Good luck with your procedure. Know that you are not alone and we have HOPE for you! Let us know how you are doing on Facebook or at a HOPE Zoom meeting.
Have something to add? Send us an email and we’ll start a companion list to the one above for future sharing.
PMP Pals does not provide medical opinions or advice. Please consult your appendix cancer specialist for guidance on these issues and others you may be experiencing. Advocate for yourself by asking questions and getting to know your medical team.
Twice a week, we gather online to talk about appendix cancer. Open to patients, care partners, and support people, HOPE Zoom allows us to ask questions, share our vulnerabilities, and draw on the strength of others to get us through difficult times. We share joys, successes, and NEDs, too! You are welcome to join us according to your schedule. Meetings usually last 1.5-2 hours, but you can leave at any time. Register here for the link valid for Saturdays at 11aET/8aPT and Wednesdays 6pET/3pPT.
This week on HOPE Zoom, we touched on these topics:
- Going on disability and the nuances of SSI and SSDI
- Stage IV Appendix Cancer is not like other Stage IV cancers
- The Shock of Diagnosis and how we cope by consulting Dr. Google or sticking our heads in the sand
- Grasping at whatever we can control or influence
- Remembering we can only control our attitudes and actions
- Accepting feelings of helplessness and hopelessness, allowing the emotional process to unravel
- Having NO need to be Polly Positivity, allowing “Feel the FEELS,”
- Setting aside a time and day without cancer talk
- Acknowledging our internal dialogue “I feel fine. Do I really need to get this surgery?”
- Asking that question and discovering the reasons why you do need to get this surgery: cancer grows, it doesn’t belong there, it crowds out other organs and inhibits normal digestive function, mucin hardens which creates a host of other problems, your health only gets worse-do Inot better, seize the opportunity to get surgery now while you are healthy vs waiting until crisis and frailty
- It’s ok not to be hungry and what might be causing it: stress, body diverting energy to fight off cancer, musin’s internal pressure, So much is being learned about The Brain-Gut Connection
- Remembering to eat your protein!
- The importance of prehabbing and rehabbing, and when to pass the baton to your surgical team
- Yes, you can request to talk to your surgeon before entering the operating room (especially if you haven’t met him in person before)
- Trusting your medical team is there for you after the surgery, too!
- The shortcomings of our respective health systems and feeling left behind
- NEDs and advancing illness
- Anticipation of CRS/HIPEC surgeries
- And a whole lot more!
If you’ve got a question about appendix cancer, PMP, pathology, surgery, and living beyond a rare cancer diagnosis, join us.
Anti-Nausea Suggestions from Your Pals
The Technicolor Yawn, Praying to the Porcelain Goddess, Yodeling Groceries – call it what you want – Nausea and its close cousin, Vomit, are relentless foes when given space to flourish. Sometimes, we experience nausea during post-surgery recovery; it’s a natural by-product of a healing digestive system. Other times, anxiety provoked by upcoming scans or monitoring appointments gets us queasy. And then there are the side effects of chemotherapy or immunotherapy that leave us sick to our stomachs because, well, that’s what those treatments do.
Keeping the Waves at Bay
On a recent thread in the PMP Pals Facebook Group, Pals worldwide shared their personal non-medication favorites for keeping that “Call to Ralph” on hold. Our overall consensus? Get ahead of it. It’s much easier to quell a puking urge than a Tummy Riot. These suggestions below are just that – suggestions. If you need medication like Zofran (Ondansetron), Reglan (Metoclopramide), or Phenergan (Promethazine), work with your medical team to get those meds in your nausea toolbox now. Bottom line: don’t suffer and don’t wait. Nausea and vomiting can quickly turn into a medical emergency. Have what you need on hand.
Tips From Your Pals
Here are just a few of our over-the-counter solutions that you can find in the grocery store, pharmacy, or online:
- Liquids: maraschino cherry syrup, pickle juice, decaf tea, Pepto-Bismol
- Candies: GinGins ginger candy, lemon drops, mints, Werther’s, any hard candy that makes you feel good
- Tablets & tinctures: apple cider vinegar tablets, smelling scents like lavender oil, peppermint oil, or isopropyl alcohol, Bonine or Dramamine tablets
- Edibles: saltines & crackers, medical marijuana (smoked, vaped, eaten) like Wyld gummies with Indica, ginger ale, bitters & soda, anti-nausea lollipops
- Physical: roller ball on solar plexus and neck muscles, counting breaths, Seabands acupressure wrist bands, walk outside in fresh air, cold compress on your forehead
Here’s what your Pals had to say about nausea:
“Not sure this will help at all as it is a very different approach. I get nauseous when my body gets tight, especially my neck which then travels to my solar plexus. I have a small ball that I roll on my tight neck muscles and do some gentle neck stretches. I then attempt to lightly roll the ball into my solar plexus to try and relax it. This all has to be gentle or it gets tighter. The other thing I do is counting my breath. I find focusing on my breath also helps relax me and therefore helps with my tightness. I hope you feel better.” ~ Lindsey W.
“I wore Seabands that go on your wrists so long I had indents. I took a multi-approach with using all these plus meds.” ~Nicole J.
“When I got hungry, I got nauseous. I ended up getting some gummies, Wyld brand with Indica. I took a 1/4 of the piece at bedtime and it helped. If I quit after about two days, I’d start feeling nauseous again. It took probably six months for that to go away. I didn’t feel woozy or anything. My doctor asked if I wanted more Zofran and I said no thanks and explained about the Indica gummies and she said good, better for your organs. 

They made all the difference to me. The biggest part was that the dose was small enough to relax me and kept the nausea away, but I didn’t feel any other side effects.” Molly C-P.
No Urge vs. Fighting Purge
Take measures to keep nausea at bay by
- Eating smaller, more frequent meals
- Avoiding spicy, greasy, or strong smelly foods
- Opting for the blander menu (bananas, rice, applesauce, toast)
- Waiting a few hours after eating before brushing your teeth
Do you have an anti-nausea suggestion? Email us and we’ll add it to this list. NOTE: This post is not intended as medical advice. Please consult your physician or medical team for more information and guidance.
Photo by Jon Tyson on Unsplash
In March 2022, when Lindsay Barad packed for her CRS/HIPEC hospital stay, she thought she over-packed.
The one item that she didn’t bring along was a blanket and her first night in the hospital was freezing! The next morning, her father, Jim, stopped at a local department store and purchased two blankets for his daughter. He found this highly ironic as his business, Barad & Co, is a textile manufacturing company that produces plush blankets.
For the next week, Lindsay recovered in the hospital, wrapped up in those cozy blankets. They boosted her spirits, kept her warm, and helped make the sterile hospital room feel more like home. She found similar comfort with PMP Pals. Both have proven invaluable in establishing emotional resilience for living beyond a rare disease diagnosis like appendix cancer.
PMP Pals is partnering with Barad & Co to send Pals worldwide a gesture of comfort. Jim’s gift is his way of giving back to the community which has helped his daughter, Lindsay, as a patient, and him as a caregiver. Similar to our Bare Bottom Bears Program, Pals will send you a complimentary, cozy, plush blanket by mail, as you head into (or home from) surgery or other challenging treatment. This blanket symbolizes what we want every Pal to know: no matter what you are going through, you are not alone.
To request a blanket, email Lindsay at lindsay@pmppals.net. Include the name of the patient or caregiver recipient, mailing address with zip code, and phone number (if available). Out-of-country requests are accepted, however take a longer time to arrive. Limit one blanket per household..
After you receive your Barad’s Blanket in the mail, send us a photo and tell us how this Message of Hope lifted your spirits.