Changes in your sight after eye cancer
This page is about coping with changes in your eyesight (vision) due to eye cancer. You can find the following information
Changes in your sight after eye cancer
Eye cancers do not always cause problems with your sight. It will depend on the type of eye cancer you have. The more advanced the cancer, the more likely it is to affect your sight. Problems can range from very minor changes in your vision to complete loss of sight in one eye.
Coping practically with sight changes
Sight changes can affect reading, driving, your work, and how you get around. There is a lot of help available to people with visual problems. You can get speech recorders to record lists or information, talking books, magnifiers, and adaptations for your computer, mobile phone or electronic notepad. You can register as a blind or partially blind person to get help from your local health authority.
If you have had your eyeball removed (enucleation) the main thing you will notice is that it’s a lot harder to judge the distance between objects. But you will get used to this and adjust. You’ll also find that you cannot see so well to one side without turning your head.
Losing some or all of your sight can be very distressing and can have a big effect on your life. It often helps to talk to the people close to you about how you are feeling. Or you may prefer to talk to someone who doesn't know you personally. To find out more about counselling, look in the coping with cancer section
You can view and print the quick guides for all the pages in the living with eye cancer section.
Eye cancers are very rare and do not always cause problems with your sight. It will depend on the exact type of eye cancer you have. The more advanced the cancer, the more likely it is to affect your sight. Problems can range from very minor changes in your vision to complete loss of sight in one eye.
Doctors have developed much better treatments to prevent loss of vision for people with eye cancer. But some eye cancers are very serious and it can be difficult to protect the eye from damage. In extreme cases you may need to have your eyeball removed (enucleation). So you completely lose sight in that eye.
Some people may have a sensation that their eye is still there. They may see things that are not really there. Doctors call these visual hallucinations and it can be very unsettling if this happens. It is only temporary, as though your brain is realising that one of your eyes has gone and is remembering past vision from that eye.
Losing the sight of one eye and the eye itself are big things to adjust to. You can feel a range of emotions such as shock, anger, sadness, frustration, and possibly depression and grief. This is normal but understandably it is very difficult to cope with.
It is important to give yourself time to adjust to the changes. It will get easier to manage, but it takes time and patience. If you can, lean on the people close to you during this time. Letting others know how you feel and having them there to support you can make a big difference.
If you have any changes in your vision, it is important that you have regular check ups with an eye specialist. This may be every 6 months, or less often depending on how much your sight is affected. Your cancer doctor will usually arrange your eye check ups during your regular follow up appointments.
Sight changes can affect reading, driving, your work, and how you get around. There is a lot of help available to people with visual problems, and this can help you adjust. How much help you’ll need depends on how your vision has been affected. But you may find the information below helpful.
If cancer has affected your vision you could find it harder to get around. At first this can be very difficult. You may find that you are bumping into things a lot, and that you cannot find your way as easily as you used to.
If you have had your eyeball removed the main thing you will notice is that it’s a lot harder to judge the distance between objects. For example, if you are pouring water into something it may be harder to do this without spilling it. Be careful when you’re pouring from the kettle. But you will get used to this and adjust. You’ll probably find that you turn your head a lot more to the affected side to make yourself aware of objects around you. You may also find that your sense of balance is affected.
You can get advice from doctors, nurses, and organisations that deal with vision loss. They can help you with coping with everyday things such as reading, writing, making phone calls, shopping and housework. For example, a small tape recorder can be very useful for recording shopping lists, phone numbers and street directions.
It is unlikely that your cancer will cause complete blindness. But if you already had visual loss in your other eye you may need a guide dog. Your specialist eye doctor will help you to make this decision.
If reading is difficult, this may be one of the hardest things you have to come to terms with. If you enjoy reading, you may want to get hold of books with larger print, or listen to books on CD or on your MP3 player. Or a family member might be able to read to you. Calibre Recorded Books is an organisation that aims to make the pleasure of reading available to anyone who cannot read ordinary print books for whatever reason. Their phone number is 01296 432 339. Or you can join the Royal National Institute for the Blind's National Library Service (phone 0303 123 9999).
You may need to wear glasses or contact lenses, but you may also be able to improve how well you see by using low vision aids. These include magnifiers or monoculars (a glass magnifier that fits in the eye socket) that you can carry around in your pocket or bag to use when necessary. For example, they can help with reading very small print or road signs, and seeing far off scenery.
Contact your nearest eye hospital or the Royal National Institute for the Blind (RNIB) to find out where you can get aids for poor vision.
If your eyesight has been affected you may benefit from a computer or electronic notepad in your work and home. Computers are available with Braille keypads and displays. Screen reading software can read out to you whatever is written on your screen.
If you have some vision, you can simply make the text bigger on your browser (the programme you use to go on the web). You can install software on a normal laptop or desktop computer to enlarge the text, or give you the option to speak into your computer instead of writing. There are a range of computer programmes that can help you use the web or your mobile phone, even if you have no sight. They are able to read the words off the screen for you.
It’s possible to fit your computer with a Braille display. You may find it useful to contact AbilityNet UK. They are a charity that helps assess the electronic needs of people with disabilities. The RNIB website has a lot of information about using computers with sight problems.
Some of this equipment is very expensive and it can be difficult to know exactly what would help you the most. You might also want to contact The British Computer Association of the Blind on 0845 643 9811. This is a self help group made up of visually impaired computer professionals and users.
If your eye doctor thinks your sight is very poor and is unlikely to improve, they will suggest you register your sight problems with your local health authority. There is one register for people who are partially sighted and another for people who are blind. Being registered on either of these will allow you to get help with home life, getting around in your community, work, and any further education courses you want to take. The help includes
- Disability living allowance or Personal Independence Payment (PIP)
- Possible funding for education
- Concessions on transport, tax credits and your television licence
- Disabled parking permit
You will also be supported and protected by the Equality Act 2010. It aims to stop discrimination against disabled people. There is more information about other financial support you may be able to get in the coping with cancer section.
Losing some or all of your sight can be very distressing and have a big effect on your life. As well as dealing with the practical problems that come with sight loss, you may also have to cope with feelings of anger, low self esteem and sadness. If you have a false eye (prosthesis) put in, you could also feel very self conscious for some time and worry about how others see you.
Our eyes play a big part in the way we communicate with others. If someone avoids looking you directly in the eye, it can be very off putting and make conversation more difficult. False eyes are so life like these days that people talking to you may not know which is the good eye and so be looking into your false one. To you, it may look as if they are avoiding your gaze. In this situation, it’s helpful to let them know they should be looking into your other eye.
Changes to your eyes and sight may also make you feel less attractive to your partner, and make you worry about your sexual relationship. There is information about changes in your sex life in this section.
It often helps to talk to the people close to you about how you are feeling. Or you may prefer to talk to someone who doesn't know you personally. Counsellors within the NHS are experienced in talking to people who have lost some or all of their sight. If you would like to talk to someone other than your own friends and family, look at the eye cancer organisations page to find people who can help and advise you about sight problems. There are details of counselling organisations or general cancer support organisations in these sections.
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