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.
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 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:
This is when fluid builds up in the abdominal cavity (tummy area) as a result of the cancer. It can cause:
Shortness of breath
Feeling or being sick
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).
Watch our recorded diet and nutrition event, led by Janet Chu, Specialist Oncology Dietitian:
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
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.
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.
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.
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
Draining the ascites
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.
Hospice and palliative care
A lot of people are worried about the idea of a hospice and think they’re only for people at the very end of life. But they offer a range of support services for all stages of cancer both within and beyond the hospice building. Many people are admitted to hospices for one to two weeks to get more intensive symptom control before returning home again.
What is hospice care?
Hospice care values the whole person, and their family and friends – mind, body and spirit. There are many hospices around the UK. They’re mainly independent charitable organisations working closely with your local health services. Most offer clinics with various professionals and day services where you can visit weekly for a few hours. They also offer inpatient care where you can stay for a short period of time if you need to. It can be helpful to find out what your local hospice offers even if you don't feel ready, or wish to use the services yet.
Where can I get this care?
Every area will have a local hospice or specialist palliative care service that works in the community in hospitals and care homes. You may already have met a Macmillan, hospice or palliative care nurse during your treatment. If you haven't, you can ask to be referred to your local team by your medical team. In many areas you can now also refer yourself whenever you feel you might need some extra support.
complementary therapies (such as massage, acupuncture or reflexology), spiritual care
practical and financial advice
The services are usually provided by a range of staff from highly trained professionals to experienced volunteers. All their care is provided free of charge and they may also be able to arrange transport for you to attend.
What is a hospice admission?
A hospice admission is when you may stay in the hospice for a few days for a number of reasons. People often associate hospice admissions with dying. Of course some people choose to go to a hospice when they're near death. But many come in and out of the hospice to receive treatments to help manage their symptoms or to give those caring for them a short break. Hospices are often beautiful buildings, with light airy rooms and lovely gardens. Many people are frightened of the idea of hospice care, but once they have experienced it they regret not meeting the team earlier.
Can I have palliative or hospice care at home?
Most areas have palliative care and hospice teams who work in the community. Your GP or CNS can refer you to them. These teams often have a palliative care medical consultant, a palliative CNS and other professionals to support you. The palliative CNS will come and visit you at home to support you and help you manage the cancer as well as provide support to your loved ones. They may see you in an outpatient clinic if you’re well enough to attend (you don’t need to stay in overnight).
There are also schemes like Hospice at Home. This is where nurses from the hospice, community team or Marie Curie offer care at home. This is particularly in the last weeks of life.
If I get involved with the palliative care team or the hospice, will my consultant and GP be informed?
Yes, all the teams keep in close contact with each other. Your GP and hospital consultant's team remain your key contacts with the hospice and palliative care teams working in partnership with them. Your GP will also be able to talk to you about any extra practical support that may be available locally.
You might want to use complementary therapies alongside your hospital treatments to help you relax or to ease symptoms and side effects. Some complementary therapies are common, like massage and acupuncture, and some you may not have heard of before. All of these therapies can help improve your mood and deal with problems like sickness or pain.
None of these therapies should replace your medical treatment, but they may give you an extra boost. As cancer is a complex condition, it's important to use a registered therapist and always let your treatment team know.
Our expert mini guide can answer your questions about the use of complementary therapies after an ovarian cancer diagnosis, including what complementary therapies are, the difference between complementary and alternative therapies, and how and where you can find out more. Read Ovarian cancer and complementary therapies [PDF] or order a copy for free.
Find information and support to help improve your wellbeing when living with ovarian cancer. Learn more about diet and nutrition, managing your finances, work and education, complementary therapies and sex and intimacy.
Therapy Directory connects you with a qualified therapist most suited to your needs. All the therapists on the website have shown proof of qualifications and/or membership with a professional body. They list many therapies from aromatherapy to reflexology.