Coping with eye cancer
Many people find coping with a diagnosis of cancer difficult. Eye cancer and its treatment may affect your eyesight and how you feel about yourself.
It can help you to cope if you understand more about it. This includes how it might affect how you feel. Getting the help and support you need can also help you cope.
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.
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.
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.
Cancer Chat
You can chat with other people affected by cancer in our online forum
Support groups
NHS website has a service that tells you about local information and support.
Physical changes
Eye cancer and its treatment may cause physical changes in your body. You might have changes in your eyesight and your appearance. These changes can be very difficult and may affect the way you feel about yourself. Such changes can affect your self esteem and the way you relate to other people, especially close family and friends.
You might also have to cope with feeling tired and lethargic due to your cancer or its treatment.
If you have advanced cancer
Talking about advanced cancer
Your friends and relatives might be able to support you and talk to you about your cancer. Sharing can help to increase trust and support between you and make it easier to plan ahead. But some families are scared of the emotions this could bring up. So they may not want to discuss it. They might worry that you won't be able to cope with your situation.
It can strain relationships if your family or friends don't want to talk. You can help your family and friends by letting them know you would like to discuss what’s happening and how you feel.
Planning
Thinking about your priorities and planning what you want to do can help you to feel more in control. You might want to talk about how you want to spend your time and what is and isn’t important to you.
Some of your future plans might no longer be realistic. But you might get round to doing something you always wanted to do but weren’t able to make time for.
You can talk to your doctor about managing your treatment around your plans. Or if you can have your treatment at the same time. Your specialist nurse will be able to support you and help you arrange this.
Feeling as well as you can
It is important that you feel as well as you possibly can. Tell your doctor or nurse about any symptoms you have so they can help to control them.
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.
Coping practically
You and your family might need to cope with practical things including:
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money matters
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financial support, such as benefits, sick pay and grants
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work issues
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childcare
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Blue Badge applications
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help with travel costs
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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.
Relationships and sex
The physical changes you have might affect your relationships and sex life. There are things that you can do to manage this.
Support at home for you and your family
You might need some care and support at home due to eye cancer, its treatment or when you have advanced eye cancer. A lot of practical and emotional support is available to you.
GP and community services
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.
Community and district nurse
These nurses work in different places in your local area and may visit you in your home. They can:
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give medicines or injections
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check temperature, blood pressure and breathing
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clean and dress wounds
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monitor or set up drips
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give emotional support
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teach basic caring skills to family members where needed
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get special equipment such as hospital beds, special mattresses, commodes or bed pans
Community services vary from area to area. Your hospital specialist nurse can tell you what is locally available to you.
Community 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.
Marie Curie nurses
Marie Curie nurses give nursing care to people with advanced cancer in their own homes. They can visit during the day or spend the night in your home to give your carers a break.
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 is usually other help available but services can 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.
