Your palliative care team will help to provide relief from any pain or symptoms that you may be experiencing, to help you live as comfortably as possible.
Some of the common symptoms you may experience as a result of your sarcoma may include:
- Difficulty with eating or swallowing
It’s worth noting that some of the symptoms you may experience will be from the treatment you are receiving, and not always the sarcoma itself. For example, if you choose to have chemotherapy during your palliative care, you may experience side effects from that.
Some people choose not to have certain treatments for this reason. Please speak to your palliative care team if you have any questions about your treatment during palliative care so you can explore all options available to you.
Everyone experiences pain differently, and people with sarcoma may experience pain in different ways.
However, pain can be managed in several ways, through medication, physical therapy and relaxation exercises.
Many effective pain medications can be used to manage any pain you may be experiencing.
Depending on the level of pain you are experiencing, you may be given:
- Mild pain medication or nonsteroidal anti-inflammatory drugs (NSAIDs), such as ibuprofen or paracetamol
- Opioids such as codeine for moderate pain, or morphine for severe pain
- Antidepressants for treating nerve pain
- Muscle relaxants
Some of the stronger pain medications can cause side effects, including:
- Constipation, which can be eased by laxatives
- Nausea, which usually wears off after the first few days of taking your pain medication. You can take anti-sickness tablets for the first few days to ease your nausea.
- Drowsiness, which also usually wears off after the first few days.
Unexpected feelings can be overwhelming for the individual and their loved ones. People may exhibit emotions that seem out of character, which in some cases can be a side effect of medications – and can also be reduced with medications. You can discuss any distressing changes to a loved one’s emotional state with the palliative team, who will be able to help.
Complementary therapies such as acupuncture, massage or physiotherapy may help to ease some of your pain.
Feelings of anxiety and stress can make your pain worse. Learning ways to try and control your anxiety and stress levels can be useful in reducing your pain.
Taking part in meditation, mindfulness, aromatherapy or reiki may help you. Your palliative care team can help you to find services in your area.
Coping with fatigue
Fatigue can be described as a feeling of extreme or constant tiredness that isn’t relieved by sleep.
It can be caused by several things, including:
- any treatment you may be having
- stress or anxiety
- not being as active as you may have been previously
- eating problems
- the sarcoma itself
There are things you can do to try and help your fatigue.
Planning and pacing
It’s important to try and plan your days so you factor in some time to rest. If you have a busy day ahead, you should try to aim for a quieter day the next day.
Some people recommend using a fatigue diary to keep track of your energy levels and what impacts them. Macmillan Cancer Support has a fatigue diary template that you can use, which we’ve linked here for you.
While it may seem counterintuitive, keeping active may help you to manage your fatigue.
Research has shown that regular physical activity can help reduce fatigue, improve sleep, and increase energy levels in people with cancer. This is because physical activity helps to increase circulation, release endorphins, and improve overall physical function.
Some possible types of exercise you may feel benefit from include:
- Walking or light jogging
- Swimming or water aerobics
- Yoga or gentle stretching
Remember, even small amounts of exercise can be beneficial. You could try starting with a few minutes of exercise each day as a starting point.
It’s important to talk to your palliative care team before starting any new physical activities. Your team can help you determine what type of exercise is safe and appropriate for you, and offer guidance on how to gradually increase your activity level.
Difficulty with eating or swallowing
You may have difficulty eating or swallowing at points as a result of your sarcoma. This can be a distressing symptom, but some strategies can help.
If you’re experiencing difficulty eating or swallowing, it’s important to talk to your palliative care team. They can assess your symptoms and help you depending on your specific needs.
You may also experience changes to your appetite and finding yourself wanting to eat less often. A dietician can work with you to help you find ways to manage your appetite.
Some ways of managing difficulty eating or swallowing include:
- Adjusting the texture and consistency of food: Depending on the severity of your symptoms, your palliative care team may recommend pureed or mashed foods, thickened liquids, or other modifications to make eating and swallowing easier.
- Using a feeding tube: In some cases, a feeding tube may be necessary to make sure you’re hydrated and getting the right amount of nutrients. Your palliative care team can discuss the benefits and risks of this option with you and help you make an informed decision.
- Using medications to manage symptoms: Depending on the underlying cause of your difficulty eating or swallowing, medications such as painkillers or anti-sickness pills may be helpful.
You may experience breathlessness or shortness of breath. It can be a distressing symptom that may affect your daily activities and quality of life. However, there are strategies that can help you to manage your breathlessness and improve your overall wellbeing.
Some possible methods for managing breathlessness include:
- Relaxation techniques: Deep breathing, visualisation, and other relaxation techniques may help to reduce anxiety and improve your breathing patterns.
- Positioning: Sitting in an upright position with good posture can help improve breathing and reduce breathlessness.
- Conserving your energy: Pacing yourself and avoiding overexertion may help to conserve some of your energy and reduce any breathlessness you may be experiencing.
- A handheld fan: A cool draft of air from a handheld fan has been found to be very helpful in reducing the feeling of breathlessness.
Some medication may aid breathlessness. Your palliative team can help to advise you with what medication would be helpful.
A physiotherapist can also assist you with techniques to manage your breathlessness.
Macmillan Cancer Support has some useful information on how to manage breathlessness.
Published: May 2023 Next review due: May 2026