Fatigue and pancreatic cancer

Transcription

1 1 Fatigue and pancreatic cancer This fact sheet is for people with pancreatic who have fatigue. Their family may also find it helpful. It explains what fatigue is, what causes it, how it can be managed, and the support available. Speak to your doctor or nurse if you have any questions about fatigue or how to manage it. You can also speak to our specialist nurses on our Support Line about any questions you have about radiotherapy. You can call them free on , or Contents What is fatigue? 1 What causes fatigue? 2 What can you do about fatigue?.. 8 Pancreatic Cancer UK services.. 13 What is fatigue? Fatigue is extreme tiredness. It isn t the same as simply feeling tired. It can be a constant feeling of weariness or it can come on suddenly from one minute to the next, for no apparent reason. You may feel weak, unable to concentrate, or have problems sleeping. Resting or sleeping may not help, so fatigue can be physically, mentally and emotionally draining. It can limit your ability to do everyday activities and enjoy life.

2 2 Fatigue can get worse during treatment and go on for several months after treatment finishes, sometimes longer. I don t think people understand the difference between tiredness and fatigue. Tiredness is when you want to sleep but with fatigue you can t do anything. I ve had tiredness before, I ve had sleepless nights with my daughter, but it is a whole different level, a whole different ball game, utterly draining. What causes fatigue? Fatigue may be caused by the pancreatic cancer, be a result of symptoms caused by the cancer, or be a side effect of treatment. It s a very common symptom and is often called cancer-related fatigue. Below are some of the causes of fatigue for people with pancreatic cancer, and how to manage them. Problems with digestion and diet The pancreas produces enzymes that help to break down your food (digestion). Nutrients from your food can then be absorbed into the blood and used by your body. Pancreatic cancer can affect this process, which means that your food isn t properly digested and you don t get the nutrients and energy you need. Symptoms include weight loss, loss of appetite, tummy discomfort, sickness and changes to bowel habits. These can all make fatigue worse. Fatigue can also affect your appetite and desire to eat. There are ways to manage problems with eating and digestion. Pancreatic enzyme supplements replace the enzymes that your pancreas would normally produce, and help to break down food so your body can absorb it. They can help you manage symptoms, and can make a big difference to how you feel. If you are having problems with eating, or haven t been prescribed enzyme supplements, speak to your nurse, doctor or dietitian. If you haven t seen a dietitian, ask to be referred to one. Read more about how pancreatic cancer affects your diet in our booklet, Diet and pancreatic cancer, or on our website at pancreaticcancer.org.uk/diet

3 3 The cancer affects your eating, making you weak. It affects your toilet habits, which makes you feel uncomfortable so you don t want to eat anyway. It all has a knock-on effect all these little things add to fatigue. It s all connected. Problems with blood sugar levels (diabetes) The pancreas produces hormones including insulin and glucagon that control the amount of sugar in your blood. Pancreatic cancer may affect this process, so that your blood sugar level gets too high (hyperglycaemia) or too low (hypoglycaemia). High blood sugar can be a sign of diabetes. If your sugar level is too high you may feel thirsty, pass more urine, get headaches and feel tired. These symptoms can all make fatigue worse. Problems with blood sugar levels can be managed with tablets and injections. If you have any of these symptoms or are struggling to manage your diabetes, speak to your nurse, doctor or dietitian. If you can t get hold of any of these professionals, speak to your GP. If you haven t seen a dietitian, ask to be referred to one. Read more about diabetes and pancreatic cancer on our website at pancreaticcancer.org.uk/diabetes or in our booklet, Diet and pancreatic cancer. Being sick Pancreatic cancer can make you feel and be sick (nausea and vomiting). Some treatments, such as chemotherapy, can also make you sick. Being sick can be physically tiring. It can make you dehydrated, which happens when the body loses more water than it takes in. Being sick also means you won t absorb all the nutrients you need from your food. These things can all cause fatigue. Depending on what s causing your sickness, various things may help, such as anti-sickness drugs. If you are being sick a lot (for half a day or more or every few days) and it doesn t improve, contact your GP or medical team for advice. If you are on chemotherapy, being sick a lot can be a sign of an infection. Call the number you should have been given for urgent advice, especially if your temperature is above 37.5 o C or 38 o C (depending on the advice from your chemotherapy team).

4 4 Read more about sickness on our website at pancreaticcancer.org.uk/nausea Pain Pancreatic cancer can cause pain for some people. Pain can be caused by the cancer itself, by treatment or by problems with digestion such as bloating and constipation. Your fatigue may be worse when you have more pain and you may feel less exhausted when you have less pain. Pain can be relieved with a range of treatments, so ask your GP or medical team for help to manage it as early as you can. They can also refer you to a palliative care team or a pain clinic for more specialist advice. Some opioid painkillers like morphine and oxycodone can also make you feel sleepy, especially when you first start taking them or when you change the dose. Drinking alcohol can make this worse. Read more about pain and how to manage it in our booklet, Pain and pancreatic cancer, on our website at pancreaticcancer.org.uk/pain Chemotherapy Chemotherapy is one of the main treatments for pancreatic cancer. Everyone reacts differently to chemotherapy, but fatigue is a common side effect. It s important to see how the chemotherapy affects you, and decide how much activity you can manage. It can take several months after treatment for your energy levels to get back to normal. Speak to your doctor or nurse if you are having chemotherapy and have fatigue. They may be able to change the dose of your chemotherapy to help with the fatigue. Read more about chemotherapy in our fact sheet, Chemotherapy and pancreatic cancer, or on our website at pancreaticcancer.org.uk/chemotherapy I was sleeping 17 hours a day. When I mentioned it to the oncology team, my chemotherapy dose was adjusted, resulting in improved wakefulness.

5 5 Radiotherapy Some people with pancreatic cancer may have radiotherapy, which is sometimes combined with chemotherapy (chemoradiotherapy). Radiotherapy for pancreatic cancer can cause side effects including fatigue. You may need to travel to hospital every day for treatment which can make fatigue worse. Fatigue can last for several weeks or months after treatment finishes. See how you feel, and decide how much activity you can manage. Try to take care of yourself by eating well, taking gentle exercise (see page 9) and making time to rest if you can. If you have fatigue during radiotherapy, talk to your nurse or treatment team about how to manage it. Read more about radiotherapy and chemoradiotherapy on our website at pancreaticcancer.org.uk/radiotherapy Surgery Sometimes it is possible to have surgery to remove pancreatic cancer, such as a Whipple s operation. This is a major operation and it can take several months, or sometimes longer, to fully recover. It is normal to feel tired and weak at first. Try to balance being active with resting. Aim to gradually get back to daily activities such as walking and household tasks, but don t overdo it. Read more about surgery in our fact sheet, Surgery for operable pancreatic cancer, or on our website at pancreaticcancer.org.uk/operable They said I would be tired afterwards because the Whipple s is a major operation. My surgeon and cancer nurse said it can be a good six months before you feel anything like normal. I thought I d be all right in a couple of months but no, it was six months. After surgery, the energy needed to eat was a major challenge. I have recovered, but it did take months. Stents and bypass surgery Pancreatic cancer can block the bile duct (a tube that carries bile from the liver to the duodenum). It can also block the duodenum (first part of the small intestines). You may have a stent put in or bypass surgery to relieve the

6 6 blockage. Recovering from bypass surgery may take some time. You may feel tired and weak at first. It may take several weeks to be as active as you were before the operation. Read more about having a stent or bypass surgery in our fact sheet, Stents and bypass surgery for pancreatic cancer, or on our website at pancreaticcancer.org.uk/inoperable Medications Some medications can add to feelings of fatigue. For example, opioid painkillers can make you feel sleepy (see page 4). Some anti-sickness drugs such as metoclopramide and lorazepam can also cause drowsiness. See page 3 for more about sickness. If you think your medication may be making you tired or sleepy, speak to your medical team. They may be able to change it to a different drug, or suggest you take it at a different time. You don t realise how much the medication can make somebody really tired. Once he started taking the tablets he became very lethargic and sleepy, couldn t do as much. It took several weeks to realise that it was the metoclopramide that made me so fatigued after chemotherapy, not the chemotherapy itself. Anaemia If your red blood cell level is low (low red blood cell count or low haemoglobin level) you may get anaemia. Anaemia can be a side effect of chemotherapy and can cause fatigue. Your medical team can do a blood test to check your red blood cell count. If the level is very low you may need a blood transfusion. Read more about anaemia and chemotherapy in our fact sheet, Chemotherapy and pancreatic cancer, or on our website at pancreaticcancer.org.uk/blood

7 7 Anxiety and depression When you have cancer it s natural to feel worried, anxious or stressed. But these feelings can become overwhelming. Anxiety and depression can be common in people with pancreatic cancer. Depression can be linked to fatigue in people with cancer. Symptoms of depression include appetite and weight loss, negative thoughts, feeling hopeless, loss of interest in things that used to give you pleasure and problems sleeping. Getting depression diagnosed and treated may help to reduce your fatigue and help you feel more in control. Read more about how depression and anxiety can be managed on our website at pancreaticcancer.org.uk/coping Disturbed sleep Your sleep may be disturbed by symptoms caused by the cancer or your treatment. These may include itching, sweating, pain, discomfort, sickness or needing the toilet. Feeling anxious or worried can cause problems sleeping too. You may also sleep badly if your bedroom is too light, too noisy, too hot or too cold. Not sleeping well can make fatigue worse. Talk to your medical team if you aren t sleeping well. They can look at what is causing the particular problem and how to manage it. You may also find that going to bed at a regular time each evening and following a routine can improve your sleep. Relaxing activities like meditation or yoga can also reduce anxiety and stress so that you sleep better. Mindfulness is a technique that can help you change how you think about your experiences, and may help you deal with difficult or stressful situations. The Mental Health Foundation s website, BeMindful.co.uk has more information about mindfulness. Read more about complementary therapies on page 9. No amount of sleep makes you actually feel like you ve had sleep. You still wake up feeling like you haven t fully got any rest. He was very uncomfortable because he was drenched with sweat every morning when he woke up. You know when you re all hot and bothered, you re more tired I think. You ve not had a really good sleep.

8 8 What can you do about fatigue? There are ways to manage fatigue if you have pancreatic cancer, so don t assume it s something you have to put up with. It s important to talk to your medical team about how you feel. They may do some simple tests to try to find out what is causing your fatigue. For example, a blood test can check for anaemia (see page 6), and how well the liver and kidneys are working. If your doctors can find the cause they may be able to treat it and help with the symptoms. As well as your usual medical team, there are other health professionals who can help you manage fatigue. Dietitians advise on diet and nutrition. They can help you to manage diet symptoms caused by pancreatic cancer (see page 2) and eat as well as possible to get the nutrition you need. If you haven t seen a dietitian, asked to be referred to one. Occupational therapists provide practical support to help you find ways to do everyday tasks that might be difficult. This can range from recommending equipment or adaptations at home, to advising on exercises to help you relax. Physiotherapists can give you exercises and advice to help you keep active, and to help with some symptoms such as pain. Psychologists can help with the emotional effects of pancreatic cancer and fatigue, such as anxiety, stress and depression. Ask your medical team what support is available you don t have to cope alone. You may find some of the suggestions here helpful, including tips from people with pancreatic cancer and health professionals. Keeping a fatigue diary You could try keeping a fatigue diary. Use it to note down when you have fatigue, how bad it is, and anything that makes it better or worse. A diary can help you describe your fatigue to your medical team and show how any treatment you re having affects it. It can also help you see when you have more energy to do things. You can then plan activities for when you have more energy, and rest when you re more tired. You can download a fatigue diary from our website at pancreaticcancer.org.uk/managing-fatigue

9 9 When you have a good day don t go mad; pace yourself so that you re not wiped out the next two days. Physical activity Gentle physical activity can help you deal with fatigue and increase your energy levels. It can also increase your appetite, improve your strength and fitness, help you cope better with treatment, and help you feel better generally. Speak to your medical team before starting any kind of exercise plan. They can advise you on how to get started and what type of activities are best for you. They can also refer you to a physiotherapist or occupational therapist for specialist help (see page 8). Read more about physical activity, including the type of exercise that might help, in our booklet, Diet and pancreatic cancer, and on our website at pancreaticcancer.org.uk/exercise The best advice she was given was to always listen to her body. And if she was overdoing it she should stop. After chemotherapy ended, I was referred for physiotherapy. The sessions introduced gentle exercise to improve my core strength and stamina and were very helpful. Complementary therapies Some people find that complementary therapies help them cope with fatigue and other symptoms, although they don t work for everyone. Therapies that may help include acupuncture, massage and relaxation therapies like meditation and hypnotherapy. Hospitals, hospices and local cancer charities may offer some of these therapies. Complementary therapies work alongside your medical treatments. It s important to speak to your medical team before you start a complementary therapy, as some may affect your cancer treatment. And tell your complementary therapist about your cancer treatment. Read more about complementary therapies on our website at pancreaticcancer.org.uk/complementary therapies

10 10 Driving Your ability to drive may be affected by fatigue or by some medications. For example, if you are taking opioid painkillers you shouldn t drive if they make you feel sleepy, or if you ve just started them or changed the dose. Ask your doctor whether your cancer or treatment will affect your driving. You may need to tell the Driver and Vehicle Licensing Agency (DVLA), or the Driver and Vehicle Agency (DVA) if you live in Northern Ireland. Tips to help manage fatigue You may find some of these tips helpful in dealing with fatigue. If you have any questions about them, speak to your medical team. Remember to speak to your medical team about any side effects or symptoms you have, as getting these under control can also help you manage fatigue. You can also call our specialist nurses on our Support Line with any questions about fatigue. Set yourself goals for each day such as something you enjoy doing and that s easy to achieve. Try to challenge negative thoughts like I should be able to do more or they think I m lazy. Focus on what you can do rather than on what you can t. Save your energy don t do so much on one day that you re exhausted for the next two. Limit phone calls and visitors if you find them tiring it s okay to say no. Plan ahead so that you have time in your day to do the things you want to be realistic about how much you can do. Prioritise what s most important to you and decide what you can let go, even temporarily for example, spending time with friends or family rather than doing the washing up. Pace yourself plan to do more at times when you feel less tired, and plan a rest period after a period of activity. A fatigue diary can help with this. Accept offers of help with everyday tasks like cooking, shopping or household tasks. If you re having problems eating, our diet tips in our booklet, Diet and pancreatic cancer, or on our website at pancreaticcancer.org.uk/diettips may help you get the nutrients you need. Eating well can help reduce fatigue.

11 11 Use chilled or frozen ready meals if you don t feel up to cooking. Save energy by sitting on a stool or chair in the shower and sitting to dry yourself afterwards. Drying yourself can use a lot of energy wrap up in a towelling dressing gown instead. Try not to get anxious or frustrated if you forget things or find it hard to concentrate. Try using your diary, post-it notes or smart phone to remind you of important things such as appointments or when to take medicines. If you are in hospital, you should be given advice about any care you might be offered at home. This may be called a care package. What you are offered will depend on things like your age, how frail you are and what family support you have. Ask the nurse in charge of the ward about arranging an assessment before you go home. I m fortunate that my colleagues understand and support me throughout the day, as I still have to have a rest in the work s first aid room every morning without that I couldn t manage. Emotional support There is support available to help you cope with fatigue, so remember that you don t have to manage alone. Your medical team can offer emotional as well as medical support. And our specialist nurses on our free Support Line have time to listen to your concerns and answer your questions about pancreatic cancer, including fatigue. You may find it helps to talk to others affected by pancreatic cancer who can understand what you are going through. We have an online discussion forum for anyone affected by pancreatic cancer. And there are support groups around the country where you can meet others. Our Living with Pancreatic Cancer Support Days provide support in an informal setting for people with pancreatic cancer and their families, including information on coping with symptoms like fatigue. Read more about the support we can provide at pancreaticcancer.org.uk/get support

12 12 Read about coping with pancreatic cancer at pancreaticcancer.org.uk/coping Information for family and friends Family and friends can provide vital emotional and practical help. You may have taken on some caring responsibilities or be helping with household chores, shopping or preparing meals. Or you may be talking to your loved one s medical team and helping them go to appointments. It can be difficult when someone you love has fatigue, with no energy for themselves or anyone else. But supporting or caring for them can be physically and emotionally exhausting for you too, so you may also need support to help you both cope. Read more about the different kinds of support available for you, from carers centres to counselling in our booklet, Caring for someone with pancreatic cancer: Information for families and carers, and on our website at pancreaticcancer.org.uk/families You want to be there for your loved one and tend to their every need and it s hard work. You don t realise how hard it is because you just get on with it. Finding out more Finding out more about your cancer and treatment can help you feel more in control. We have up-to-date information on everything you need to know about pancreatic cancer. Find our information at pancreaticcancer.org.uk/informationandsupport You can also talk to our specialist nurses on our free Support Line. Macmillan Cancer Support produce a booklet called Coping with fatigue. It has more tips for coping with fatigue, which you or your family may find helpful.

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14 14 Pancreatic Cancer UK services c cancer. Our Support Line Our Support Line is a lifeline for thousands of patients, families and friends. Our specialist nurses understand the issues you might be facing. They are there for you, giving you personalised information and support that you need, when you need it. Call us free on (Monday to Friday from 10am-4pm), or us at support@pancreaticcancer.org.uk Our information We have the most up-to-date information on everything you need to know about pancreatic cancer on our website. We can help you every step of the way, from explaining your diagnosis and treatment options, to managing symptoms, and questions to ask at your appointments. Go to pancreaticcancer.org.uk/informationandsupport Download or order our publications, for free, at pancreaticcancer.org.uk/publications Find an A-Z of medical words at pancreaticcancer.org.uk/medicalwords Our online community Our online community is a supportive place where everyone affected by pancreatic cancer can be there for each other. Find us now at forum.pancreaticcancer.org.uk Support groups We help set up local support groups in communities all across the UK. These groups provide the opportunity for sharing personal experiences, understanding and support. The local support groups mean you can meet other people to share your experiences: pancreaticcancer.org.uk/supportgroups And our Living with Pancreatic Cancer Support Days provide local face to face support in an informal setting for people diagnosed with pancreatic cancer: pancreaticcancer.org.uk/supportdays

15 15 Useful organisations Be Mindful A website from the Mental Health Foundation, offering an online mindfulness course and details of teachers. Cancer Research UK Helpline: (Mon-Fri 9am-5pm) Information for anyone affected by cancer. GOV.UK Provides information about government services, including information about the Driver and Vehicle Licensing Agency (DVLA) Macmillan Cancer Support Support Line: (Mon-Fri 9am-8pm) Provides practical, medical and financial support for anyone affected by cancer. Maggie s Centres Tel: Centres around the UK and online offer free practical, emotional and social support for anyone affected by cancer. NHS Choices Provides information about different health conditions, living well, care and local services in your area. NHS Direct Wales Tel: Health information in Wales, including local services. nidirect Information about local services in Northern Ireland, including health services and information and support for carers.

16 16 NHS inform Provides information about different health conditions and living well, and local services in Scotland.

17 17 This fact sheet has been produced by the Support and Information Team at Pancreatic Cancer UK. It has been reviewed by health professionals and people affected by pancreatic cancer. References to the sources of information used to write this fact sheet and a list of health professionals who reviewed it are available on our website pancreaticcancer.org.uk Pancreatic Cancer UK makes every effort to make sure that our services provide up-to-date, unbiased and accurate information about pancreatic cancer. We hope that this information will add to the medical advice you have received and help you to take part in decisions related to your treatment and care. This information should not replace information and advice from your medical team please speak to your doctor, nurse or other members of your medical team about any questions or concerns. Give us your feedback We hope you have found this information helpful. We are always keen to improve our information, so let us know if you have any comments or suggestions. us at publications@pancreaticcancer.org.uk or write to the Information Manager at the address below. Pancreatic Cancer UK 6 th Floor Westminster Tower 3 Albert Embankment London SE1 7SP enquiries@pancreaticcancer.org.uk pancreaticcancer.org.uk Pancreatic Cancer UK October 2017 Review date October 2019 Pancreatic Cancer UK is registered as a charity in England & Wales ( ) and Scotland (SC046392)