Mouth cancer - Living with mouth cancer

Having mouth cancer doesn't necessarily mean you'll have to give up work, but you may need quite a lot of time off, and you may not be able to carry on like you did before treatment.

If you have cancer you're covered by the Disability Discrimination Act. This means that your employer is not allowed to discriminate against you because of your illness. They have a duty to make "reasonable adjustments" to help you cope. Examples of these include:

allowing you time off for treatment and medical appointments
allowing flexibility with working hours, the tasks you have to perform or your working environment

The definition of what is "reasonable" depends on the situation. For example, how much it would affect your employer’s business.

It will help if you give your employer as much information as possible about how much time you will need off and when. Talk to your human resources department if you have one. Your union or staff association representative should also be able to give you advice.

If you're having difficulties with your employer, you may be able to receive help from your union or your local Citizens Advice Bureau.

Relationships with others

It is not always easy to talk about cancer, either for you or your family and friends. You may sense that some people feel awkward around you or avoid you. Being open about how you feel and what your family and friends can do to help may put them at ease. Do not feel shy about telling them that you need some time to yourself, if that is what you need.

Money and financial support

If you have to stop work or go part-time because of your cancer, you may find it hard to cope financially. If you have cancer or you are caring for someone with cancer, you may be entitled to one of the following areas of financial support:

If you have a job, but cannot work because of your illness, you are entitled to Statutory Sick Pay from your employer.
If you don't have a job and cannot work because of your illness, you may be entitled to Employment and Support Allowance.
If you are caring for someone with cancer, you may be entitled to Carer’s Allowance.
You may be eligible for other benefits if you have children living at home or if you have a low household income.

Find out as early as possible what help is available to you. Speak to the social worker at your hospital who can give you the information you need.

Free prescriptions

People being treated for cancer are entitled to apply for an exemption certificate, giving them free prescriptions for all medication, including medicine for unrelated conditions.

The certificate is valid for five years and you can apply for it through your GP or cancer specialist.

Want to know more?

Carers Direct: benefits for carers and benefits for the person you care for
GOV.UK: benefits and financial support
Citizens Advice Bureau
Money Advice Service

Talk to others

If you have questions, your GP or nurse may be able to reassure you. You may find it helpful to talk to a trained counsellor or psychologist, or to someone at a specialist helpline. Your GP surgery will have information on these.

Some people find it helpful to talk to other people who have mouth cancer, either at a local support group or in an internet chatroom, such as:

Cancer Chat – Cancer Research UK
Head and neck cancer forum – Macmillan Cancer Support

Caring for others with mouth cancer

Being a carer is not an easy role. When you are busy responding to the needs of others it can deplete your reserves of emotional and physical energy and make it easy for you to neglect your own health and mental wellbeing. Research on carers’ health shows that high numbers of carers suffer health effects through caring. If you are trying to combine caring with a paid job or looking after a family, this can cause even more stress.

If you are caring for someone else, it is important to look after yourself and get as much help as possible. It is in your best interests and those of the person you are caring for.

Look after your health

Eat regularly and healthily. If you do not have time to sit down for every meal, try to make time to sit down for at least one of your day's meals. Instead of relying on fast food snacks, go for healthier options, such as fruit.

Look after your emotional health

As well as exhaustion, isolation and worries about the person you are caring for, it is understandable if there are times when you feel resentful and then guilty for feeling like this. These feelings are natural.

Look for support

Friends and family may not always understand what you are going through and it can be helpful to talk to people in the same situation. Carers Direct has a lot of useful information on its website and runs a helpline on 0300 123 1053.