Your cancer and its treatment 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
- the location of the eye cancer
- 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.
Some side effects of radiotherapy can happen within a few months or may take up to a few years. Your follow up eye checks are very important as they can pick possible side effects early.
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 need depends on how much your vision has changed.
Changes to your vision can make it harder to get around. At first, this won't be easy.
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.
But you will get used to this and adjust. You might also 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, social workers and occupational therapists. A social worker can advise you about possible benefits. An occupational therapist can assess your home to see how adjustments can be made to make everyday life easier. There are also organisations that deal with vision loss.
It is unlikely that your cancer will cause complete blindness. But if you already had visual loss in your other eye, you may need support to learn new skills to help you adapt. For example, your specialist eye doctor might suggest you consider having a guide dog.
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.
Calibre Audio Library is an organisation that aims to make the pleasure of reading available to anyone who can't read ordinary print books.
A small voice recorder can be very useful for recording shopping lists, phone numbers and street directions. Many mobile phones now have a voice recorder function too.
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.
Wearable technology in the form of smart glasses and head mounted cameras are also available. Some devices are built into a visor, or into electronic spectacles. Others have a clip on camera that attaches to spectacles or a head strap. These devices are not to be worn when you’re moving around, but it can help to give you information about your environment.
The Royal National Institute for the Blind (RNIB) can tell you where you can get aids for poor vision.
Phones and tablets
Android and Apple mobile phones and tablets have touch screens, and you use your fingers to choose the functions on the screen. Both types of phones and tablets have built in functions that allow you to speak into it to get information back. You can also enlarge (magnify) what is on the screen.
Other features include inverted colours (black background instead of white), bold text and a built in video magnifier for reading printed materials.
You can download many applications (apps) on mobile phones and tablets to give it more functions.
Desktops and Laptops
Microsoft Windows and Apple computers and laptops have built in functions that allow you to access information from the computer via a screen reader. The screen reader reads it out loud. Other functions include a magnifier or the ability to change the colour of how things appear on the screen (high contrast and inverted colours). There are also many other adjustments you can make should you prefer to do so.
Virtual assistants on your desktop allow you to use your voice to do tasks like:
- sending an email
- doing a web search
- opening applications and files
You can use voice recognition or dictation to write emails and documents.
Specialist software is also available to give you more functions.
Braille displays work by pins that move up and down in each of the braille cells. By doing so, the pins show the information of a line of text on a screen.
You usually need a screen reader to send and control the information from the screen to the Braille display. Some displays allow you to type characters into the computer or phone or tablet.
You can buy screen reading software, but you can get some versions free of charge. You can download it from specific websites.
If you have little or no useful vision, a screen reader for computer, laptop, smartphone, or tablet can help you to read the information on the screen.
Screen reading software mixes basic sounds through a synthesiser to imitate the speech of a person. This process allows the screen reader to read out loud words on the screen. In this way, you can have access to items like:
- dialogue boxes
- file lists
The information on a screen can also be transferred to a refreshable Braille display. This means that you can get speech and Braille at the same time from the equipment you’re using.
Windows and Apple computers have screen magnifiers that come preinstalled and which you can set up and use immediately. But many of these might have limited functions and not fulfil your needs.
You can buy extra screen magnification software for Windows and Apple devices.
AbilityNet UK is a charity that helps to 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 the equipment is very expensive, and it can be difficult to know what would help you the most. You can contact TAVIP (Technology Association of Visually Impaired people) for advice. They are a self help group made up of visually impaired computer professionals and users.
Your eye doctor may recommend that you register your sight problems with your local health authority. They usually suggest this if you have poor eyesight that is unlikely to improve. There are 2 registers:
- sight impaired or partially sighted
- severely sight impaired or blind
Being registered on either of these will allow you to get help with the following:
- benefits such as Personal Independence Payment (PIP), Employment and Support Allowance (ESA), Universal Credit, Attendance Allowance, Pension Credit, or specific benefits for carers
- grants to pay for things you need to help you in your daily life, lessons, studies or activities
- concessions on leisure and travel, NHS costs, and directory services
If you’re registered as blind or severely sight impaired, you can also qualify for the following concessions:
- the Blue Badge scheme
- a reduction on your TV licence fee
- tax allowances
- free postal service
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, talk to 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 relationships.
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 counselling and general cancer support organisations that can help.