Practical advice for anyone with incurable ovarian cancer

Read our information and advice for making decisions about work, accessing financial support and thinking about the future and advance care planning.

Here we provide information to help you make decisions about work and advice about the types of financial support you may be able to access. We also provide information to help you with future care decisions. This is known as advance care planning.

Work and financial support

If and when you choose to stop working is a very personal decision. Some people wish to continue working for as long as possible. Others may feel like they have to keep working for financial reasons. There may also come a point when you feel too unwell to work. 

It's important that your employer is understanding and flexible in their response to your needs and that you feel respected and supported by them. 

Staying at work

Everyone living with or beyond cancer is protected against unfair treatment in the workplace. In England, Scotland and Wales this is under the Equalities Act 2010. In Northern Ireland it’s under the Disability Discrimination Act 1995. This means your employer can't sack you or find an excuse to make you redundant because of your illness. They must also make reasonable adjustments to accommodate your needs at work. Reasonable adjustments might include changing your working hours, allowing time off for appointments or moving around some of your duties.  

But your employer may be able to end your employment on grounds of capability because of health issues. Citizens Advice can help ensure that you know your rights and the support available to you.

Stopping work

It’s likely there will come a point when you choose to stop working altogether. This may be to spend more time doing things that give you pleasure or it may be because you're too unwell to keep working. 

Stopping work may be particularly difficult to cope with. It can be useful to talk to friends, family, your clinical nurse specialist (CNS) or your GP about how you’re feeling. If you would prefer to speak to someone further removed from your personal situation, you might want to use a professional support service

Read Macmillan’s advice about coping with stopping work.  

Adapting your home

You may consider adapting your home or getting some specialist equipment to make day-to-day life a little easier. This could be getting a hot water bottle or foam cushion to make you more comfortable when sitting down. It could be having parts of your home changed or buying special furniture to make moving around easier. Speak to your CNS about what support is available to you. You might be able to get some free equipment from your local social services department or on a long-term loan from the NHS.  

Benefits and other financial support

There are different types of benefit entitlements that could be available to you. These include benefits that replace your earnings, help with housing costs or extra costs resulting from your illness. It's also worth regularly checking the benefits that you’re entitled to because these may change if your situation changes. 

Many people are unaware of the financial help and support available to them at this time. Macmillan has a benefits helpline staffed by trained advisers that can be reached on 0808 808 0000. 

Read our guide Ovarian cancer and finances [PDF] for information on insurance, benefits and pensions, and advice on where to find support and specialist guidance.  

Advance care planning

Advance care planning is a way to think, discuss, plan, document and share your views, thoughts and decisions about future care. It's helpful for you, your friends, family or the doctors and nurses to know what your future wishes and decisions are about care.  

All of the ways to plan ahead below are only used if you’re unable to make or communicate decisions yourself. It may be that someone has capacity to make some decisions and not others so an assessment should be done for each individual decision. 

Your medical team will always consider your best interest when taking medical or care action on your behalf. If you’re unable to make decisions, your medical team will firstly consider any records of your wishes for treatments and care that you’ve made. If you haven’t left a record of your wishes, they will consider all of the circumstances to help them decide what action to take. 

There are clinical systems in place to ensure the below decisions are communicated to doctors, nurses and paramedics who might be called unexpectedly to see you at the weekend or at night. It’s worth asking your GP or palliative care CNS about this. Sharing your documents yourself with anyone involved in your care can also help to give you peace of mind that they’re aware of your wishes. This includes your treatment team, GP and local ambulance service. 

Advance statement

This is a way for you to write down and tell others your future wishes and decisions. It lets everyone involved in your care know your wishes if you’re unable to tell them. It could include: 

  • Whether you would want to be treated in hospital if you were unwell 
  • Who’s important to you and who you would want to be involved in decision making 
  • Whether you would want hospice care at the end of your life 
  • Simple pleasures such as your favourite fragrances, songs and music, or wanting to have your hair and makeup done every day because it’s important to you 
  • Sometimes people also add in their wishes about their funeral 

An advance statement isn’t legally binding but will be used as a guide when making a decision in your best interests

Advance decision to refuse treatment (ADRT) 

An advance decision to refuse treatment (ADRT) is a legal document in England and Wales. In Scotland it’s called an advance directive (or living will). In Northern Ireland it’s also called an advance decision to refuse treatment (or an advance directive). 

It must be made when someone has the capacity to make decisions. An ADRT can be used to show certain treatments that you wouldn’t wish to receive in particular situations. This can help you to stay in control of future treatment decisions and maintain a quality of life that’s meaningful to you. This is used if, in the future, you can’t say what you want yourself. It must be signed and witnessed, and is there to ensure that your decisions about treatment you don’t want are upheld, if you can’t say so at the time.  

If an ADRT is in place for the particular decision that needs to be made then a best interests decision wouldn’t be needed. This is because an ADRT is legally binding and, if it’s in place for the particular situation, it takes priority over decisions made in your best interest by other people. If you have an ADRT but it doesn’t apply to the situation in which a best interests decision needs to be made, then it can be used as a guide when making the best interests decision. 

Do not attempt cardio pulmonary resuscitation (DNACPR) 

This is a decision not to attempt to restart the heart (cardio pulmonary resuscitation) if a person suffers cardiac arrest in future. A cardiac arrest is when the heart stops pumping blood around the body.  

A DNACPR is made and recorded in advance to guide those present whether to attempt to restart the heart. Your medical team are likely to advise you that resuscitation would be unsuccessful in advanced disease and often people feel as they near the end of their life that they don’t want this medical treatment. You may wish to start this discussion, or sometimes a doctor or nurse may discuss it with you if they feel it’s unlikely that your heart could be restarted due to your condition. 

The Resuscitation Council (UK) has excellent FAQs where you can find out more.

The ReSPECT process 

This is a very specific type of advance care planning available in some areas across the UK. It summarises the emergency care part of a wider advance planning process. The process covers more decisions about treatment and care beyond DNACPRs. ReSPECT records your emergency care information so that professionals in different care settings who need to make decisions about care and treatment in a crisis, can access it quickly.  

Lasting power of attorney(LPA) 

This is a legal document in England and Wales that lets you appoint one or more people to make decisions on your behalf. In Scotland this is called a power of attorney. In Northern Ireland this is an enduring power of attorney. There are two types of LPA and you can choose to make one type or both:  

  • Property and financial affairs – you can give this person the power to make decisions about money and property, for example managing a bank account or paying bills. This person can speak on your behalf from any time that you authorise them to do so. 
  • Health and welfare (in England, Wales and Scotland only) – you can give this person the power to make decisions about things like your daily routine and medical care. It can only be used if you’re unable to make your own decisions or express your wishes at the time 

In Northern Ireland you can currently only appoint an enduring power of attorney for property and financial affairs. It doesn’t yet cover health decisions. 

Making or updating a will

By making a will, you can make sure that in the event of your death, your assets and belongings go to those who you feel should or would benefit most. Your will should set out: 

  • who you want to benefit 
  • who should look after any children under 18 
  • who is going to sort out your estate and carry out your wishes after your death (your executor)

You can write your will yourself, but you should get advice if your situation isn't straightforward. You also need to get your will formally witnessed and signed to make it legally valid. Find out more about making a will

You may wish to use a solicitor, or use an online service to write your will. Target Ovarian Cancer offers a free will service, supporting you to make a will for free. There’s no requirement that you make a donation to charity in order to get your will for free, although some people wish to do so.  

Digital legacy

For some people it's important to think about what happens to their social media and online accounts/presence after they have died. Others like to create online goodbye messages. Websites like the Digital Legacy Association give you ways to think ahead for your digital legacy. 

Thinking about a funeral

You may have been to funerals that you thought had aspects that you would want to include in a celebration of your life. You may know what you definitely don't want. Talking about these thoughts might help those close to you feel confident that they can help you carry out your wishes. Some families might find this difficult and avoid it. If this is the case you may need to write things down.  

How much you plan is up to you. It might be anything from the type of funeral to every last detail – music, flowers, or even a message for those who attend. 

You can also do a letter of wishes, which is addressed to your executors (the people you’ve chosen to carry out instructions in your will). This can give guidance, lists your assets, detail funeral arrangements and maybe explain your will.  

Marie Curie has more information and advice about planning a funeral 

Finding additional support

These resources may be helpful to look at now, or to keep for when you feel ready: 

  • Hospice UK’s Dying Matters campaign aims to help people talk more openly about dying, death and bereavement, and to make plans for the end of life. 
  • Macmillan has more information about planning for the future with advanced cancer. 
  • Compassion in Dying provides useful information about planning for the future. They also have a Peer Navigator Service to help people live well with an incurable illness, make decisions about treatment and plan for the future. 
  • My Decisions is a free and simple tool run by Compassion in Dying to help you plan your future. They also offer a support line to help you with completing the forms. Call 0800 999 2434 or email [email protected] 
  • My Wishes is a free online tool to easily record your hopes, choices and wishes for the future

It might also help to:

Last reviewed: May 2022

To learn more about our review process, take a look at our information standards.