These sections provide information about managing your symptoms and understanding your care. This includes understanding what’s being said and who will be looking after you, as well as what to expect from hospice and palliative care. 

On this page

• Controlling your symptoms
• Understanding your care
• Hospice and palliative care
• Complementary therapies
• Your wellbeing

Controlling your symptoms

During this phase of your treatment you may have some uncomfortable symptoms. Your clinical nurse specialist (CNS, or key worker) will help you to manage these symptoms. You may also be supported by a community palliative care nurse or hospice nurse. Their goal is to help you feel as well as you can by improving and maintaining the quality of your life.    

These are some common symptoms that those with incurable ovarian cancer experience.  

Fatigue

Fatigue isn’t just a question of feeling quite tired but actually feeling exhausted most of the time. This may be because of something that can be reversed such as anaemia (low levels of health red blood cells) or low magnesium (a nutrient in the body). It may be due to treatments you’re having such as chemotherapy. It may be because of the illness itself and the emotions you’re feeling.  

Gentle exercise can help with fatigue. Your CNS should be able to direct you to a fatigue programme, such as Macmillan’s RESTORE, that can guide you through the right kind of activity for you. 

You may need to adjust your lifestyle or limit your activities. Be kind to yourself as you find a pace you can cope with. An occupational therapist can give you tips to help as well as aids that will help you save your energy. 

There are some medications that may help you to feel more alert and increase your energy. Speak to your CNS about what might help. 

Watch our recorded managing fatigue event, led by Mara Sheldon, Occupational Therapist:

Ascites

This is when fluid builds up in the abdominal cavity (tummy area) as a result of the cancer. It can cause: 

• Abdominal swelling
• Shortness of breath
• Indigestion
• Feeling or being sick
• Reduced appetite
• Fatigue

You can have an ultrasound scan to confirm that any abdominal swelling is caused by ascites.  

The fluid can usually be easily drained using a procedure called paracentesis. This is when a very thin soft tube is inserted into the tummy. The tube will be connected to a bag and the ascites fluid will slowly drain over a few hours. The tube is then taken out. This can be repeated if the fluid collects again. It’s done using a local anaesthetic (a medicine that numbs part of the body) and can be done in a hospital or hospice without the need to stay over. Your doctor will talk to you about the right time for you to have this procedure. 

If the fluid collects again quickly after this, an indwelling drain may be a suitable option for you. This is called a PleurX or Rocket drain and is a semi-permanent tube that enables you to manage your excess ascites at home.  

Some people have loculated ascites. This is when the fluid is sectioned off into small pockets of fluid and it might be not able to be drained. If this happens you will be given advice by your GP, CNS or palliative care team. If you’re finding this painful they will be able to help with painkillers.  

Sometimes the risks of having ascites drained outweigh the benefits, for example if you have low blood pressure. In this case, it can be managed with medication to help you feel more comfortable.

Loss of appetite

This can lead to weight loss and having less energy. It can help to:

• Eat high-calorie snacks little and often to avoid feeling bloated. Smoothies are ideal for this 
• Try nutritious supplement drinks which your GP or CNS can recommend 
• Ask to see a dietitian who can advise on the best way to keep up your food intake when your appetite is small 
• If your appetite is really poor and you’re very tired, a short course of steroids can be taken to enhance your appetite and energy. Speak to your GP or CNS about this.

It's important to remember that your weight can go up and down throughout your illness if fluid builds up in your tummy (ascites). 

Find out more about managing eating problems when having treatment. 

Watch our recorded diet and nutrition events, led by Janet Chu, Specialist Oncology Dietitian.

Session one:

Session two:

Indigestion

Indigestion happens when stomach acid comes back up the gullet (the tube which food passes from the mouth to the stomach). It's also called heartburn or reflux. It can feel painful or uncomfortable and will often cause a cough. 

Indigestion can be caused by anxiety, steroids or other anti-inflammatory drugs, ascites and oral thrush (a fungal infection in the gullet or mouth). If thrush has been ruled out, you can help by: 

• trying over the counter antacids such as Gaviscon 
• eating little and often 
• ensuring your evening meal is more than two hours before going to bed 
• sitting upright when eating 
• avoiding hot drinks, alcohol and foods that are acidic or spicy.

If these don’t work, your medical team can prescribe medication to reduce stomach acid.  

Nausea (feeling sick) or vomiting (being sick)

This can be caused by ascites, indigestion, constipation and medication (for example strong pain killers, antibiotics, chemotherapy). It can lead to loss of appetite and weakness if not eased quickly. It can help to: 

• eat small, easy-to-digest foods such as soups 
• avoid the smells of food by eating cold foods 
• use sea sickness bands
• crunch ice 
• try acupuncture or aromatherapy 
• medications can also help, so speak to your CNS or GP about this.

If you're vomiting often and you can’t keep food and drink down it's really important to let your CNS or GP know. You can quickly become dehydrated and quite unwell without treatment.  

Shortness of breath

Depending on what’s causing shortness of breath, it can be managed in different ways. It may be due to ascites fluid pushing up the diaphragm (a muscle that separates the chest and tummy). It may be caused by anaemia (low red blood cell count) which can be helped by a transfusion (when blood is given to you from someone else). 

Anxiety and breathlessness are also closely linked so deep breathing, relaxation and pacing yourself can also help. Sitting near a fan or an open window will also reduce the sensation of feeling breathless. Your local hospice may have clinics to help with breathlessness. Low dose oral morphine syrup or medicine for anxiety will help with your breathing and make you feel calmer. 

Tell your GP or CNS if your breathing is getting worse. It's also important to contact your medical team if you have shortness of breath and a new cough or chest pain. This may be due to a chest infection, fluid around the lung or a blood clot. All these complications can be treated. 

Lymphoedema

This is an excess of fluid in body tissues caused by a blockage of the lymph system (which clears extra body fluid). Find out more about lymphoedema. 

Pain

This can happen in any area affected by the cancer. Paracetamol, a warm bath, a heat pack or relaxation techniques including specific movements or stretches can help with mild pain. If the pain gets worse you should monitor where it is in your body, when it happens and whether anything makes it worse or better. This will help your medical team to give you the best pain relief. 

For more severe pain, a stronger pain killer, such as morphine, will be given. Make sure you have medication to avoid constipation and sickness with this type of medication. Strong painkillers come in a variety of ways and you can discuss the best one for you with your CNS or GP.

Constipation

This is when you pass a stool (go for a poo) less regularly, or there's a change in the consistency of your stool. The stool is often hard, painful to pass or you’re straining when you go to the toilet.  

Constipation can be caused by the cancer narrowing the bowel, ascites or some medications. Drinking enough water, eating enough fruit and vegetables and gentle exercise such as a short walk can help. If they don't then you must seek advice from your medical team. Laxatives, which encourage movement in the bowels to help you go to the toilet, can be very effective in the right dose and shouldn’t cause loss of control. If this isn’t helping then other medication may help: 

• suppositories, which is medicine that’s pushed into the bottom  
• an enema where fluid is put into the lower bowel through the bottom.

The may be administered by yourself or a nurse may be needed.  

Bowel obstruction

If you have constipation and symptoms of nausea, being sick, tummy pain or a swollen tummy it may be that the bowel is blocked. You should speak to your medical team as soon as possible. Bowel obstruction can be caused by: 

• something on the inside of the bowel blocking it (e.g. cancer or poo) 
• something pressing on it from the outside (e.g. cancer or ascites fluid) 
• irritation to the nerves of the bowels causing them to stop working.

This can often be helped by: 

• Stopping eating or drinking until the bowel is working normally again. You’ll most likely need fluids through a drip to stop you getting dehydrated. 
• Taking steroids. 
• Draining the ascites. 
• Taking laxatives.

Your medical team can give medication to help with any tummy pain or nausea from this. This may need to be given by injection or a pump rather than by mouth so that they’re absorbed properly. A nasogastric tube may also be used. This is inserted from the nose into the stomach and allows fluid to drain away. It's easily removed once the bowel starts working again. But you can say no to this if you don’t want one. 

Sometimes the bowel can move in and out of obstruction. If this happens, it's important to keep managing your bowels and reduce the chance of constipation and obstruction. Drinking lots of water, eating a soft, low fibre (low residue) diet and taking laxatives can help. But your medical team will be able to advise on the best ways to manage this based on your personal situation. 

Surgery may be an option to treat bowel obstruction. But sometimes there’s no easy way to treat the obstruction with surgery or medicine. In this case, there may be specialist options to help with nutrition. Your team may refer you to a specialist bowel centre to explore these.  

Understanding your care

Understanding what is being said

You might hear lots of terms and words being used. These might mean different things to different people. Many of the words used aren't ones that we hear in everyday conversation and it may feel uncomfortable to read them. Understanding these can make it easier to manage the more difficult conversations. It's also important to understand the words the team looking after you use. If you aren't sure, or don't understand, ask. 

Incurable means that the cancer isn’t at a stage where a cure is now possible. There may still be treatments to help control the disease, slow it down or reduce the impact it has on you physically. You may experience some uncomfortable symptoms and side effects, which you should discuss with your medical team.  

Palliative care and hospice care can be worrying to hear but they simply mean the total care of someone living with an incurable illness. They aim to maintain and improve your quality of life and offer support to you physically, emotionally, spiritually and socially. 

You may hear the term end of life. This is often used to describe when it’s believed someone may have a year or less left to live. Although it can sound frightening the main reason for using this term is to ensure people with incurable cancer can be helped to live well. It also means that the support you need can be discussed, planned and prioritised.  

Terminal care may be used to describe the last weeks or days. But it’s important to remember that people may live with incurable cancer for weeks, months or even years. 

Give yourself time to ask questions about these terms, now or in the future. Remember that while the cancer may not be curable, there are still many things that can help you live well for as long as possible. 

Who will be looking after you?

As well as your current medical team, you may be referred to a symptom control or specialist palliative care team. These teams provide extra support to enable you to live as well as possible with the cancer, for as long as possible. You can request a referral to these teams at any stage of your illness through your GP or hospital team. Your palliative care or hospice nurse will usually work in partnership with your existing gynae-oncology CNS.