Coping and support when you have pancreatic cancer
You may find it difficult coping with a diagnosis of cancer both practically and emotionally. The following information might help.
Pancreatic cancer is most commonly diagnosed when it is too advanced for surgery to be an option. The cancer is either locally advanced (stage 3) or has spread to other parts of the body (metastatic or stage 4). This means your cancer can't usually be cured. But your doctor may suggest treatment to try to slow its growth and help you feel as well as possible.
You are likely to feel very uncertain and anxious about the future knowing you have cancer. You may find it impossible to think about anything other than having cancer.
Some people say a diagnosis of cancer helps them appreciate ordinary everyday things much more than they did.
If you have advanced cancer you will need to work out your priorities. Think about how you want to spend your time - what is important to you and what is not.
Some of your future plans may no longer be realistic but you do not have to abandon them all. You may be able to adapt some. And you may get round to doing something you have always wanted to do, but were not able to make time for.
Your feelings
You might have a number of different feelings when you're told you have cancer.
You may feel a range of powerful emotions at first such as feeling shocked, upset and find it difficult to take in anything else that is being said to you. Other emotions include feeling:
- numb
- frightened and uncertain
- confused
- angry and resentful
- guilty
- sad
You may have some or all of these feelings. Or you might feel totally different. You may feel them a few at a time or altogether, leaving you feeling exhausted.
Everyone reacts in their own way. Sometimes it's hard to take in the fact that you have cancer at all. You need to do what’s right for you to help you cope.
You may think you should be talking all this through with your partner, other family members or close friends. But you may find this really hard to do.
Or you may want to talk to someone straight away to help you work out how you are feeling.
There is no set way of handling your news, but experiencing different feelings is a natural part of coming to terms with having cancer. All these sorts of feelings are likely to come and go, some may even come up when you are not expecting it.
Helping yourself
You may be more able to cope and make decisions if you have information about your type of cancer and its treatment. Information helps you to know what to expect.
Taking in information can be difficult, especially when you have just been diagnosed or given news about your outlook. Make a list of questions before you see your doctor. Take someone with you to remind you what you want to ask. They can also help you to remember the information that was given. Getting a lot of new information can feel overwhelming.
Ask your doctors and nurse specialists to explain things again if you need them to.
You might feel that you don’t want to know much information straight away. Tell your doctor or nurse. You will always be able to ask for more information when you feel ready.
Remember that you don’t have to sort everything out at once. It might take some time to deal with each issue. Ask for help if you need it.
You can also do practical things such as:
- making lists to help you
- having a calendar with all appointments
- having goals
- planning enjoyable things around weeks that might be emotionally difficult for you
Talking to other people
Talking to your friends and relatives about your cancer can help and support you. But some people are scared of the emotions this could bring up and won’t want to talk. They might worry that you won't be able to cope with your situation or be afraid they will say the wrong thing.
It can strain relationships if your family or friends don't want to talk. But talking can help increase trust and support between you and them.
Help your family and friends by letting them know if you would like to talk about what’s happening and how you feel.
You might find it easier to talk to someone other than your own friends and family. We have cancer information nurses you can call on freephone 0808 800 4040, from 9am to 5pm, Monday to Friday.
Or you may prefer to see a counsellor.
Cancer chat
You can chat with other people affected by cancer in our online forum.
Specialist nurses
Specialist nurses can help if you’re finding it difficult to cope or if you have any problems. They can get you the help you need. They can also give you information.
Specialist nurses are usually your first point of call if you have any questions or concerns. Make sure you know who your specialist nurse is and have their telephone number.
Support groups
You may find it helpful to go to a support group to talk to other people affected by cancer.
Physical problems
Pancreatic cancer and its treatment may cause physical changes to your body. Your doctor and specialist nurse can help you manage these changes. They can refer you to see other health professionals such as:
- dieticians
- symptom control team
- physiotherapists
and weight loss is common with pancreatic cancer. It can cause itching and very dry skin. You may have to make changes to your diet, or if you've had surgery to remove part or all of your pancreas, you might be .
You may also have to cope with feeling very tired and lacking in energy a lot of the time. Tiredness may be worse during and after treatment, or if your cancer is advanced.
These changes can be very difficult to cope with and may affect the way you feel about yourself. Such changes can affect your self esteem and the way you relate to close family and friends.
It is important that you feel as well as you possibly can. If you have symptoms let your doctor or nurse know. They can work with you to help control your cancer symptoms and improve your physical well being.
Relationships and sex
The physical and emotional changes you have might affect your relationships and sex life. There are things that you can do to manage this.
Coping practically
Practical things you and your family might need to cope with include:
- money matters
- financial support, such as benefits, sick pay and grants
- work issues
- childcare
- Blue Badge applications
- help with travel costs
- changes to your house
Talk to your doctor or specialist nurse to find out who can help. You might be able to get some benefits for yourself and the person caring for you. You might also be able to get grants for heating costs, holidays and other household expenses related to your illness.
Getting help early with these things can mean that they don’t become a big issue later. It may be helpful to see a social worker. Many hospital cancer departments have a social worker available for patients.
Towards the end of life
It’s natural to want to find out what is likely to happen in the last few weeks or days of life.
You might need to choose where you want to be looked after and who you want to care for you.
Support at home for you and your family
You might need care and support at home due to cancer or its treatment. There is practical and emotional support available to you.
GP and nursing support
Your GP manages your healthcare when you are at home. They can help with any medical problems that come up. They can also make referrals to a community service for you. The availability of the different community services may vary, depending on where you live.
District nurses
These nurses work in different places in your local area and may visit you in your home. They can:
- give medicines or injections
- check temperature, blood pressure and breathing
- clean and dress wounds
- monitor or set up drips
- give emotional support
- teach basic caring skills to family members where needed
- get special equipment, such as commodes or bed pans
Community specialist palliative care nurses
Community specialist palliative care nurses include Macmillan nurses and hospice nurses. They specialise in symptom management such as pain control, sickness, and other cancer symptoms. They also give emotional support to you and your carers.
Social workers
Social workers can help to support you with your situation at home. They can arrange:
- home helps to help with shopping or housework
- home care assistants for washing and dressing
- meals on wheels
- respite care
Your social worker can also help with money matters by checking you get all the benefits you are entitled to. Or they can advise you about charity grants for things like extra heating costs or special diets.
Contact a social worker yourself by getting in touch with your local social services office. Or ask your hospital nurse or your GP to refer you.
Local support services
There are many other sorts of help you can get. Services vary from place to place.
Sometimes local voluntary groups offer sitting services. Someone comes to stay with you while your relative goes out.
Good neighbour schemes offer befriending or practical help with shopping or transport.
Local cancer support groups often offer practical help. And they are a good source of information about services in your area. Ask your doctor or nurse about local groups.
