Many NET patients undergo surgery as part of their treatment course. While their medical team might have specific preparation instructions, patients often wonder about practical concerns like how to plan, what to pack, and how to prepare the home. Recently, this topic has come up in our weekly virtual support group and we have had some lively discussions based on first-hand patient and caregiver experiences. (Note: These suggestions do not replace instructions given to you by your medical team.)
PREPARE PHYSICALLY
Prepare for Surgery:
Eat a balanced diet of nutritious foods. This is not the time to start dieting!
Hydrate. Make sure you’re drinking plenty of water.
Movement matters. Being physically active prior to your surgery can help your recovery
Tell your doctor all the medications, vitamins, and supplements you take, as some might increase the risk of heart problems or bleeding issues, or they might affect your anesthesia. You may need to stop taking them 1-2 weeks before the operation.
Be honest with your doctor. You might not think your supplements and complementary treatments don’t matter to your surgeon, but they do!
Prepare for the Hospital Stay:
Prior to surgery, find out the visiting hours and rules. How many visitors do they allow at a time? Is there an age restriction? Can someone stay overnight? Find out when shift changes occur so that you can ask for pain medications before shift changes and warn family members not to call during that time.
Have a consultation prior to surgery with your anesthesiologist to discuss your anesthesia and pain management following surgery. Find out who will be managing your pain after surgery and talk with them. You may need to ask for a referral to the pain management team.
Manage expectations with work and friends so you are not inundated with emails and text messages. Set up an “out of office” or “away from my desk” notification on email, phone, and social media. It’s helpful to have a way to tell people nicely not to contact you and to not expect a response immediately after your surgery. If you have a friend or family member coordinating communication, let your support team know how to expect updates.
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Write down your medical team (name, specialty/position/role). The names of your physician, nurse, and aide should be written somewhere visible in your room. Consider filling out employee recognition cards for staff who give exemplary care. This is one of the best ways you can show gratitude for a job well done.
Note: If you have a family member or friend at your bedside, this is a task you may delegate.
Write things down on paper or on your phone. Sleep deprivation, pain, and excess stimuli may make it hard to remember names and details clearly.
Note: If you have a family member or friend at your bedside, this is a task you may delegate.
Have family or friends purchase food (e.g. bagels, cookies, donuts) for nurses and bring the items when they visit for the nursing staff. An alternative is pre-purchasing shelf-stable snacks in advance of your surgery for your visitors to bring with them.
Thank people often.
If you receive flowers, send them home with family members when they visit or consider leaving them for the hospital staff.
Packing for Surgery:
Pack a small bag for the hospital and have your family bring these items the day after your surgery or keep them in the car. It is best to minimize the items your family has with them in the waiting room with them during your surgery because it may be difficult for them to go to the cafeteria or take a walk outside if they will need to bring your belongings with them wherever they go. Because you usually are not assigned a room until after surgery, you may be in the recovery room or in the intensive care unit where you may not be able to have a lot of belongings with you. Limit the items you have with you at the hospital and send items home with your family if you don’t need them.
Suggested packing list:
Earbuds (noise cancelling, if preferred)
Long charger for phone/electronics
Eye mask
Earplugs
Loose fitting shorts, cozy robe/elastic pants
Soft front closing bras
Flexible straws, so you don’t need to sit up to take pain pills
Items that will bring comfort, e.g a pillow (make sure to have a very distinct pillowcase so it is not mistaken for a hospital pillow) and scents like lavender sachets
Nonslip slippers with good grip
A notebook to write things down
Prepare for Your Return Home:
Consider your mobility, pain, and symptoms you might be experiencing after surgery and prepare your home to have items you need on hand, conserve your energy, and prioritize your recovery.
Prepare your caregiver list and schedule for after you return home. Consider setting up a meal service or meal delivery from friends and family. Invite a friend, neighbor, or family member to coordinate deliveries to a cooler on your front porch so that you don’t feel obligated to visit with each person.
Find out what diet you will be on after surgery so you can purchase appropriate foods or prep meals prior to surgery.
Stock your fridge, freezer, pantry with food. Stock up on nutritious foods. Plan for small, frequent meals and lots of fluids.
Stock your house with household supplies.
Stock your medicine cabinet with over the counter pain medications such as acetaminophen and over the counter stool softeners and laxatives.
Plan a system to call for help such as flic buttons or using a hand bell.
Consider assistive devices such as a reacher-grabber.
Count how many steps you have to enter your home and inside your home. You can ask to see a physical therapist and practice walking up and down stairs before you are released home from the hospital.
Movement, hydration, nutrition, and pain control are important to recovery. Narcotics cause constipation so it is important to hydrate and move. You may also need to take stool softeners or mild laxatives.
NET patient Julie’s “show and tell” of tips, tricks, and specific items she found useful during her hospital stay and recovery at home
Click here for a list of the items Julie mentioned in this video.
PREPARE EMOTIONALLY
Be prepared to speak up or have someone present who can advocate on your behalf if you have concerns, issues with managing your pain, or difficulty communicating with your medical team.
Prepare a music playlist with healing music. Here are a couple albums of instrumental music written by NET patients while they were recovering from surgery:
Short Stories - piano music for healing, meditation & relaxation by LACNETS Founder and Executive Director Emeritus Giovanna Joyce Imbesi
Surprised By Beauty by NET patient Tom Bajoras
Practice mind-body techniques such as mindfulness, breathing, or visualization exercises
Belleruth Naparstek has guided meditations to promote successful surgery
Peggy Huddleston has a mind-body workshop called “Prepare for Surgery, Heal Faster”
LACNETS offers guided meditation and gentle yoga videos
UCLA Mindfulness Awareness Research Center offers free programming and resources including the UCLA Mindful App.
Insight Timer is a free app with a large library of free guided meditations.
Have an honest discussion with your loved ones about your expectations and their expectations. Make sure your caregiver(s) know ahead of time what their roles are. If you are married, it is important not to assume that your spouse will be filling all those roles.
Learn to ask for and accept help. Watch this video, “How to Ask For, Accept, and Get the Help you Need” with Kim Hamer.
Set realistic expectations. After your surgery, take it SLOW. Listen to your body. There is no need to rush. Know that there will be good days and bad days. The road to recovery isn’t always a straight path.
Patients often report that the road to recovery takes longer than they expected. The surgeon might say recovery will take 6-8 weeks; however, this is often the time it takes for the tissues and skin to heal. It may take more time to feel like you are back to what feels normal for you. Take the time the surgeon gives you as an optimistic goal, but don’t be disappointed (especially in yourself) if it ends up taking longer than you expected. Take small steps. Give yourself grace.
Special thanks to the LACNETS weekly support group for their contribution to this blogpost
WATCH: “NET Surgery: Making Decisions & Preparing for Surgery” featuring Dr. Callisia Clarke
WATCH: "Surgery for NETs" featuring NET surgeon Dr. Alexandra Gangi
This blog is for educational purposes only. Please consult your medical team about your individual care and treatment plan.
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Written by Lisa Yen, NP, NBC-HWC
Director of Programs & Outreach, LACNETS
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