Your cancer might affect your eyesight. Read about how you might feel, and organisations that can help you.
Effects on your eyesight
Eye cancers are very rare and do not always cause problems with your sight. The effect on your sight depends on:
- the exact type of eye cancer you have
- how advanced the cancer is - more advanced cancers are more likely to affect your sight
Eyesight 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.
Loss of sight
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.
After surgery to remove the 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.
Regular eye check ups
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.
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, and this can help you adjust. How much help you’ll need depends on how your vision has been affected.
Changes to your vision can make it harder to get around. At first this can be very difficult.
Following surgery to remove your eyeball, 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. You might also find that your sense of balance is affected.
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.
Help and support
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 you enjoy reading, you might want to get books with larger print, or listen to audiobooks. Or a family member might be able to read to you.
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). You can carry these around in your pocket or bag to use when necessary. They can help with reading very small print or road signs, and seeing far off scenery.
The Royal National Institute for the Blind (RNIB) can tell you where you can get aids for poor vision.
If the cancer or treatment affects your eyesight 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 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 can read the words on the screen for you. It’s possible to fit your computer with a Braille display. AbilityNet UK are a charity that helps assess the electronic needs of people with disabilities.
The Royal National Institute of Blind People (RNIB) website has a lot of information about using computers when you have 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 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. They can give advice from their own experience.
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.
Coping emotionally with sight loss
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.
You may have to deal with the practical problems that come with sight loss. And 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.
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.
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.
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. There are details of counselling organisations or general cancer support organisations in these sections.