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 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, social workers and occupational therapists. A social worker could 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 Recorded Books is an organisation that aims to make the pleasure of reading available to anyone who can't 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).
A small tape recorder can be very useful for recording shopping lists, phone numbers and street directions.
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 you can have 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 help 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.
Your eye doctor may recommend 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 blind
- severely sight impaired or blind
Being registered on either of these will allow you to get help with the following:
- 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, 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.