- What can I do to support my caregiver? Caregivers
Encourage your caregiver to schedule rest and relaxation, have other friends or family members take "shifts" being the caregiver, allow friends or loved ones to cook meals, or find local or online support groups when time permits. It is important your caregiver continue to engage in activities that bring them joy, even though they may feel guilty stepping away from their role. Remind them they can't take care of you unless they take care of themselves first! Your nurse may have more specific ideas for you as well.
- What should I look for to know if my caregiver is experiencing caregiver fatigue? Caregivers
If your caregiver begins appearing irritable, withdrawn, depressed, stressed, etc. they may be experiencing burnout. Changes in their sleep pattern and/or eating habits may also be a sign. Your nurse may know of other signs to look out for as well.
- What if my caregiver is not available? Caregivers
It is important to have a designated back-up during the times your primary caregiver is unavailable or to have a plan in place for the times that they are not around. If you know you will have difficulty making it to certain appointments, ask your nurse if they might be able to reschedule for a time or day that works for you. If you need transportation to a health-related appointment, your social worker may be able to assist, but will need plenty of time to make arrangements for you. In the case of an emergency, never hesitate to call 911.
- What can I eat when I have mouth sores or mucositis? Healthy Diet
If appropriate, your nurse may be able to provide a recipe for a salt and soda mouth rinse that can help with the healing process when you have mouth sores or mucositis. Focus on eating bland, soft foods that do not take a lot of effort to chew. Consider avoid acidic substances such as citrus or tomatoes until the mouth sores have gone away. If you are losing weight and pain is preventing you from eating, you may want to ask your nurse about possibly medicating with pain pills before meals.
- What should I eat if I am experiencing diarrhea during cancer treatment? Healthy Diet
In some cases, diarrhea can be caused by an infection. Be sure to speak to your nurse and care team before attempting to manage diarrhea at home. You should then consider trying the B.R.A.T. diet (banana, rice, applesauce, toast, oatmeal, or crackers) or bland foods. If you like dairy products, know that they may cause cramping in some people during treatment. If your stomach is bothering you, and you are having diarrhea, eat dairy in small amounts until you know you can tolerate a full serving.
- How can I ensure I am getting adequate nutrition when I have no appetite during cancer treatment? Healthy Diet
When food becomes unappealing, focus on protein shakes, smoothies, electrolyte replenishing drinks, and broth. Ask your nurse to connect you with a dietician to help you with making food choices that agree with you. When all else fails, eat what you can! Most experts agree that a small snack that sounds delicious and stays down is better than nothing at all.
- What do I do if I want to take natural or dietary supplements with anti-cancer treatment? Home Medications
- Natural or dietary supplements are often unregulated and unproven. They may reduce the effectiveness of certain types of anticancer therapies or chemotherapy, or add additional side effects that you may not be aware of. Because of these things, herbal and dietary supplements are often not advised to be taken during treatment. That said, some supplements may be beneficial and even recommended. Importantly, your medical team can give you specific instructions on what to do if you are interested in these types of therapies. Do not start these therapies without speaking to your medical team first. If you would like to learn more about certain dietary and herbal supplements so you can ask more detailed questions of your doctor, visit this website sponsored by Memorial Sloan Kettering Cancer Center and scroll to the bottom to type in the supplement you are interested in knowing more about.
- If I am admitted to the hospital, do I need to bring my home medications with me? Home Medications
It is always helpful to bring your medications so that your healthcare team can see exactly what you are taking and determine if you need any refills before you go home. Importantly, most if not all, medications will be supplied by the hospital. However, some medications such as oral anti-cancer medication or chemotherapy pills may not be routinely stocked and may not be readily available to the hospital's pharmacy. If this is the case, and your doctor wants you to continue to take your oral anti-cancer medication, you may ask the hospital if their policy permits you to use your own medication so that you do not miss doses. If you do bring your medications, and they allow you to use your own supply, it is important to know that hospital staff often require that they oversee the administration of these medicines so that they know exactly what you are taking in order to keep you safe. If they do hold onto your medications, make sure you ask for your them back before you leave since it is common for people to forget. Your nurse may be able to help answer more specific questions about medications brought into the hospital.
- Who do I contact if I need a refill on my medications? Home Medications
To make sure that you don't experience any delays in treatment, make sure you ask your nurse who you should contact and how you should contact them when you need medication refills. Also be sure that they have your preferred pharmacy on file so they can send your prescription to the correct pharmacy.
- If I am having mental health issues during treatment, what resources are available? Mindset
There are many resources that can help people deal with their diagnosis and treatment. Know that you don't have to face mental health issues alone. Talk to your nurse about what services are available at your treatment center to help with anxiety or depression, and ask what other mental health services are available in your area.
- Who can help me stay active when I am feeling weak? Physical Activity
In order to maintain activity in a safe manner, ask your nurse to put you in contact with a physical therapist. They can assess your strength level and give you individualized exercises to maintain and build muscle safely. An example is to get up every hour during the day for a short walk in the house to maintain endurance. It might not be easy, but try to stick with it because it may greatly benefit you in the long run.
- How can I prevent nausea or make it go away if I get it? Side Effects
There are many anti-nausea medications
available. Of the ones you have been given, ask your nurse or pharmacist for guidance which to take and when. If you are having difficulty eating, anti-nausea medications taken 30 to 60 minutes before a meal can sometimes help. Eating soda crackers every couple of hours may help to absorb some of the acid in your stomach. Your nurse may recommend ginger ale, ginger chews, peppermints, or bland foods when you are feeling nauseated. Ensure you are maintaining proper hydration since being dehydrated can make nausea worse. Lastly, remember anti-nausea medications may have side effects too! Ondansetron (Zofran), the most commonly taken anti-nausea medication causes constipation in many people and may require the addition of a stool softener or laxative.
- Where can I buy a wig if I need one? Side Effects
Ask your nurse to recommend that best place to obtain a wig. Then ask if they can give you a prescription for a "cranial prosthesis" so that the wig may be billed under your medical insurance to reduce the amount that you need to pay out of pocket.
- What side effects should I contact the clinic about if they happen? Side Effects
Ask your nurse which side effects should prompt a phone call and which side effects can be managed on your own. While certain side effects can wait until normal clinic hours to be reported to the clinic staff, some should not wait and need to be reported right away as they may be very serious or life threatening. Ask your nurse what side effects should be reported right away and should not wait.
- When will I be able to go home from the hospital after receiving a stem cell transplant? Stem Cell Transplant
Your nurse and doctor will want to ensure your blood cell counts are within a safe range, or trending in the right direction. Additionally, they will want to know that you are able to drink an adequate amount of fluid, eat enough calories to meet your daily needs, take all your medications by mouth, and safely move about to be able to go home. They will also want to be sure you have adequate caregiver resources available to you to assume care and help you with tasks such as eating, bathing, and taking medications.
- What can I do to avoid getting infections during and after a stem cell transplant? Stem Cell Transplant
Regular hand washing, frequent ambulation/exercise, good oral care, daily showers, sufficient oral fluid intake, adequate nutrition, and taking antimicrobial medications (when indicated) can all help to prevent infection after stem cell transplant. During transplant, infections may arise from within your own body, such as a bacterial infection from within your stomach or intestine, or a viral infection that has remained dormant (suppressed and inactive) until now. Expanding your lungs well every day with activity can prevent pneumonia. Keeping your mouth clean can help with avoiding dental issues and blood stream infections. Showering daily will protect your skin from breakdown and infection. Ask your nurse about other ways to prevent infections during the transplant process.
- What is a "type and screen" or a "type and cross"? Supportive Care
These are tests that are performed prior to getting blood transfusions. Your nurse can provide information on how they are performed and typically how long it takes to get results.
- Will I need pre-medications before blood or platelet transfusions? Supportive Care
Not all patients need to receive medications prior to receiving blood products, but in some cases they may be needed. Ask your nurse if you will need any pre-medications prior to getting blood products.
- How should I take care of my central I.V. line while I am at home in-between treatments? Treatment
Each different type of intravenous (I.V.) access requires a different level of care. For example, a PICC line (Pronounced "pick") will need to be flushed more often than a port. Your nurse can give you instruction on how and how often to care for your line. Proper line care will hopefully prevent infections and keep the line working for the duration it is needed. If lines are not cared for properly, they may need to be removed and/or replaced.