This booklet covers the different procedures used to control pancreatic cancer symptoms with practical information about your hospital visit and returning home. Includes a section about second opinions, clinical trials and questions to ask your doctor and a glossary to explain some of the terms used.
You may have experienced a number of different symptoms over the course of your disease. Everyone is unique and their experience of pancreatic cancer is different. It is natural to worry about what will happen towards the end of life. The symptoms listed below do not happen to everyone. Some people have very few symptoms and some have a mixture at different times.
You may have experienced pain throughout your disease. This does not necessarily get worse at the end of life, but you may not be able to take medication orally if you are too sleepy for example. Medication can be given via a number of routes and if you require regular pain relief, you may be given a constant dose of medication using a syringe
driver (a small needle under the skin, giving a constant level of one or more medications through a pump for 24-hours). If you are too sleepy to explain whether or not you are in pain, medical professionals can use a pain score to assess if you need medication and your pain will be regularly assessed.
Some people can feel or be sick during the last days of their lives. There are a number of reasons for this, including medication side effects, constipation and the tumour itself. This can be treated using medications and relieving any medical cause for the problem such as the use of laxatives.
Pressure ulcers, also known as pressure sores or bedsores are an injury to the skin and or the tissue underneath. They normally occur at a bony prominence such as your heels, ankle or sacrum. If you become unwell and have lost weight in combination with moving around less, you can become at risk of pressure ulcers. Anyone can get a pressure ulcer, but the chances increase if you are unwell with pancreatic cancer.
Pressure ulcers are caused by pressure (and sometimes friction) on the skin. Pressure ulcers can develop slowly over time or quite quickly. If possible, check your skin for areas that appear discoloured and report any areas of pain to your medical or nursing team.
Equipment can be put into place to lower your chances of a pressure ulcer; occupational therapists can help to arrange this. They may offer you a pressure-relieving mattress if you are in bed for much of the time or a chair cushion. You can help to manage your own risk by using pillows to remove the pressure under areas such as your heels and changing your position (with help if you need it) as much as possible.
Pressure ulcers are not always preventable, and it may not be the fault of you or anyone else if you do get one. Nurses can help to manage wounds and keep them clean with dressings. If you have a pressure ulcer, the most important thing is that it does not cause you any pain or distress.
As people near the end of life, their muscles relax. Some medications also have the effect of relaxing your muscles and this can cause incontinence of both urine and faeces. It is natural to feel embarrassed about the idea of this happening to you and lots of people don’t want to think too hard about this. However, continence aids can be used to make the situation easier. If you have nurses or carers around you, they will be understanding and can reassure you that it is natural. If you are being looked after by family and friends, it may be important to consider if they are able to manage this and if you would want them to.
Some people also have issues passing urine and holding their urine (retention). Then it may be appropriate to fit a catheter to make sure that you are passing urine and to prevent any pain or discomfort.
As the body struggles to regulate its own temperature you may feel very warm or cold. This can be relieved through interventions the family can do such as opening windows or closing them, taking blankets on and off or using a fan in the room. Some medications such as paracetamol can also help to lower your temperature.
Towards the end of life, people often feel unable to eat and drink. You may lose your appetite entirely, this is normal. If you do not feel hungry and thirsty, or uncomfortable, you do not need any artificial food and fluids. If you don’t fancy eating and drinking anything but are getting a dry mouth, then you may be able to use mouthwash, take sips of fluids or use a sponge to freshen your mouth. Sucking on boiled sweets may also help. Lip balm can help prevent your lips from drying out, especially if you are breathing through your mouth. Family and friends can also help with this if you feel as though you are finding it difficult.
This is common in many people who approach the end of their life regardless of the reason why. Being breathless can be frightening but there are a number of ways of helping you to breathe easier and feel better. Sitting as upright as possible in bed or chair (with assistance if you need it), using a fan on your face, keeping rooms well ventilated (windows open) and using communication aids such as pen and paper or whiteboard so that you don’t have to talk too much in one go can be helpful. Sometimes you can be prescribed medication to help your breathing depending on the cause and a physiotherapist may be able to give you some exercises.
Some people’s breathing may become laboured and make a rattling sound in the last few days of their lives. This is because you are not able to clear secretions in the lungs as well as before. The sound is not the cause of anything dangerous and does not cause pain or discomfort. However, patients and families can find the noise upsetting, in which
case, medication can be given to help clear up the secretions.
Some people may appear very calm and serene towards the end of their life. Some people, however, can become quite agitated and restless. People may have hallucinations which may or may not be pleasant for them. Medical professionals need to identify the cause of any agitation and treat it. It may be the side effect of a medication or other problems such as constipation or being unable to pass urine. Medication can be given to resolve the problem and relieve any hallucinations. If the anxiety is caused by a spiritual concern, religious or spiritual figures may visit. Any anxiety may also be relieved by having any questions about the end of life answered or spending more time with friends and family.
Many of the symptoms above occur throughout the illness and towards the end of life. This does not mean that you will experience all of these symptoms and that when you do, the end of life is approaching. For most people, the end of their life is a very peaceful time. They become increasingly sleepy, have their symptoms under control and are very comfortable.