Each of us is different, and our experience of different health conditions is also unique to each person. This section describes some common symptoms you may experience and how you can manage them in partnership with your healthcare team.
What symptoms might I get and how can I manage them?
These are some common symptoms, but you will not necessarily experience them.
The linked articles explain in more detail about each symptom and how to manage it
Breathlessness and shortness of breath
Bladder and bowel problems
Losing your appetite and losing weight
Pain and pain control
Tiredness and lack of energy
What should I do if I get a new symptom, or an existing symptom gets worse?
Sometimes people decide not to tell anyone when they get a new symptom or when an existing symptom gets worse. This could be because they think they know what is causing the symptom, or because they don’t want to worry their loved ones. But trying to cope on your own can be both physically and emotionally difficult.
It means you may not be getting the treatment that you need and you may be in unnecessary discomfort. It is always best to talk to the health professional who knows you best as soon as you experience any changes in your condition. It is important to get a proper diagnosis.
If it turns out that the symptom is not related to your illness, often it may be possible to sort it out. But if it turns out that the symptom is related to your illness, it may still be possible to reduce or even relieve it. Sometimes you may need to see another specialist, such as a dietician, who can help with the particular problem you are experiencing. Your health professional will make sure you get the treatment, care and support you need.
Does a new symptom mean my illness is progressing more quickly?
It can be very worrying to get a new symptom, and people often assume that this must mean their illness is spreading or progressing. But that is not always the case – people who have a life-limiting condition can also get other unrelated illnesses. While a new problem could be a symptom of your condition, it could also be something unrelated. Whatever the case, it is important to get your symptom properly diagnosed and get the right treatment.
What if I’m concerned about how much medication I’m taking?
It is quite common to worry about the number of drugs you are taking and even to want to avoid or reduce taking some medications. Your healthcare team will work with you to find different ways of controlling your symptoms - so you can take the minimum amount of drugs that is effective for you. People often want to take as few pain relief drugs (analgesics) as possible because they are worried about having side effects or that they will become addicted.
Because we are all individuals, different pain relief drugs can be more or less effective for different types of pain and for different people. However, when pain relief drugs are prescribed properly most people don’t get a ‘high’ feeling from the drug and so don’t become addicted.
Be honest with your health professional about your concerns and any side effects that you have. This helps them make sure you get the right drugs in the right dose for you and work with you to control any side effects.
Don’t avoid taking medications if you need them to control your symptoms. If you take less, a symptom can become much harder to manage and you may end up needing to take stronger drugs.
There may be some alternatives to medication that can help with your symptoms. For example, some people find that a heat pad or cold pad or changing position can help to reduce their pain. Read more about pain and pain control.
Sometimes breathing exercises can help if you have trouble breathing. Read more about ways to manage breathlessness.