Looking ahead

When coping with an uncertain prognosis, some women prefer to live in the moment, to take each day as it comes and to try not to look too far ahead.

For others, it is important and helpful for them to plan and prepare for what might happen further down the line.

There is no right or wrong way of thinking. You may find your feelings change as time goes on. If and when you feel ready, a range of information is available below. This includes information relating to death & dying. It is important that you access this information at a time that is right for you. If you find any of the information you encounter upsetting or worrying, please talk to your doctor or nurse, or access support from the range of support services available to women with secondary breast cancer.

It can be difficult to know where to start when trying to plan ahead or to ‘put your affairs in order’, especially when things feel so uncertain. Breast Cancer Now have written a list of questions which you might find useful to consider  as a starting point for planning ahead.

In this section

Making plans for things you would like to do

Receiving your diagnosis, or perhaps having some bad news relating to your treatment or scan results, may have prompted you to consider some of the things you have always wanted to do or achieve.

Sitting down and making a list of things you would like to do can feel like a positive way of channelling the energy you have and taking control. This doesn’t have to be a ‘bucket list’. Rather, it can be a way of filling your time with as much enjoyment and making as many happy memories as possible. You might want to write down a few things you’d like to do or see this month or next month, looking as far ahead as you feel able to.

Having a diagnosis of secondary breast cancer doesn’t necessarily mean you can’t go on holiday or get away for a little while. Speak to your doctor (or, if you have one, your breast cancer nurse) about the possibility of travelling. They will be able to advise you on whether any aspects of your treatment or condition need considering as well as practicalities such as travel insurance.

Finances: End of life considerations

As well as the more general aspects of finances, there are some other things that may be helpful to consider in relation to the end of life, whenever the time is right for you.

Partners

Bank accounts are frozen at the time of a person’s death so it may be worthwhile considering putting them into joint names, if they are not already.

If you are not married and have a partner, it could be worthwhile checking whether any particular finance schemes you have would still pay out money to your partner. For example, it can be very difficult to discover at the time of a person’s death that their hard earned pension scheme will be lost. It may help to consult a financial advisor to consider your options. There are several points to consider when planning ahead to pass on your pension.

Passing on your pension

Just as with life insurance schemes, it is important to consider and understand the circumstances under which your pension will be passed on to those you would like to receive it (they are known as your ‘beneficiaries’, usually family or loved ones).

If a person dies before they have begun accessing their pension, their beneficiaries may receive one or more lump sums. The amount of money depends on the type of pension scheme. If the person was 75 or over at the time of death, their beneficiaries can access a tax free lump sum from the pension within 2 years. If the person was under 75 at the time of death, their beneficiaries will pay income tax on this lump sum.

If a person dies and has already started receiving their pension, things become a little more complicated. If they have accessed money from their pension but have not spent it, this money becomes part of their ‘estate’ (everything a person owns) and their beneficiaries must pay inheritance tax on this amount.

The money that is left in the pension can be taken as a lump sum or as an additional income by the beneficiaries, though the exact amount received will be determined by the rules of the particular pension scheme.

It may be useful to contact your pension provider for further information on this, to allow you and your loved ones to plan ahead.

Please also see our Employment & finances section for further information.

Fast track rules for benefits payments in terminal illness

‘Terminal’ is usually used to described conditions from which a person is likely to die within six months. However, in secondary breast cancer, just as in other conditions, prognosis is very difficult to predict. Should a person go on to live for longer than originally expected, they can still claim their benefits under special rules which fast track payments to patients with a terminal prognosis. Their situation will usually be reviewed after three years.

These rules can make a significant difference. For example, under these rules you would not need to wait for the usual three month qualifying period when applying for Personal Independence Payment (PIP) or the six month qualifying period when applying for Attendance Allowance. Applications for Employment and Support Allowance (ESA) will also be fast-tracked and you would receive additional support, for example a higher rate of ESA and you would not have to meet the work related responsibilities which are usually specified in order for a person to receive their ESA in full.

In order to qualify for these special rules, your consultant or doctor must complete what is known as a DS1500 report. They will be aware of this and will have copies to complete.

Marie Curie have further information  on their website relating to special benefit rules in terminal illness. Please also visit our section on Employment & finances for further information relating to these benefits.

Life insurance and critical illness cover

Put simply, life insurance is a type of insurance which pays out when the policy holder dies. This can help to pay the mortgage or other debts and to support and provide for your loved ones if you are no longer here. There a lots of different types of life insurance with different rules and policies.

Life insurance is often purchased when taking out a mortgage and payments are made as part of monthly mortgage repayments. Check with you mortgage provider if you are unsure whether you purchased this at the time. Some employers also provide life insurance cover for their employees so it is a good idea to speak to your employer or HR team to see if you are able to join or are already enrolled in such a scheme.

Following a diagnosis of secondary breast cancer, you may choose to access your life insurance early. There are a number of options for doing this. Some types of life insurance are what is known as an investment policy and allow you to access the cash value of this investment early. This is not the value of all of the contributions you have made, however, and you may have to pay a charge to release this money.  It is also worth bearing in mind that it may not be a large sum on money, especially if you have not been paying into this scheme for very long.

Some policies include additional benefits known as a terminal illness benefit or critical illness cover. Terminal illness benefit allows the policy holder to receive the full amount of insurance cover if they are expected to live 12 months or less (regardless of whether they live beyond this timeframe).  Critical illness insurance or cover pays out a lump sum if you are diagnosed with a critical illness such as cancer. It is a good idea to check whether any of your insurance policies include these benefits as you may be entitled to a significant sum of money which you were not otherwise aware of. Some people, who have a type of life insurance known as an endowment policy, choose to sell their policy. Specialist companies will buy these policies, continue to pay the premiums and receive the pay out when the policy comes to an end.

When a person dies, there may be an inheritance tax which must be paid on their estate (everything they own at the time of death minus anything they owe, such as their mortgage). The estate includes life insurance pay outs. This means that a person’s beneficiaries may receive less of the money and may have to wait a long time before they can access it. By putting your life insurance policy in a trust, you are able to protect it from being taxed as part of your estate, and ensure that your beneficiaries (such as a partner, children or loved ones) are able to receive the money with less of a delay.

It is a good idea to seek expert advice if you are considering any of these options. Macmillan’s financial guides offer free expert advice via the Macmillan support line on 0808 808 00 00. You can also contact the Citizen’s Advice national phone line on 03444 111 444.

Macmillan provide detailed information on the different sorts of life insurance policies, options for accessing money early and how to make sure money is passed on to those you wish to receive it (the people known as your ‘beneficiaries’) when you die.

Talking about death & dying

Some women understandably find it very difficult to talk about dying. Discussing it out loud can make it seem more real and frightening.

There may be a number of other reasons why you find it difficult to discuss death and dying.

You may be worried that you are being a burden to family and friends by trying to have these conversations. You may struggle to find the right time, the right place or even to know who would be the right person would be, whether a partner, parent, friend, sibling or health professional. There are no right or wrong ways of doing things. It is important that you feel able to discuss death and dying when you feel ready, in a place you feel safe and comfortable and with someone that you trust.

Some women find that they very much want to discuss, process and plan for their death with their loved ones but that others are not open to having these conversations. Family and loved ones may try to avoid the subject, refuse to discuss it or even try to put a ‘positive spin’ on things and not accept what is happening.

Though it may be very difficult to have these conversations, there are lots of positives that can come out of them, for both you and those around you.

  • It can help you all to process and to understand what is happening.
  • It can give you the opportunity to share your wishes with loved ones.
  • It can help you all to deal with and manage practical matters, from finances and wills, to funeral plans.
  • It can help you and your loved ones to prepare emotionally.
  • It may be a rare chance for you to open up completely with loved ones, to share any worries and concerns and to say things you may not have otherwise felt able to.

All in all, talking about death can be a very freeing experience. It can help to lift some of the fear of the unknown or the unspoken and allow you and your loved ones to feel more in control and able to carry on living life as fully as possible.

Tips for starting the conversation

Be open minded about the ‘where and when’. It may be that the right time just comes about unexpectedly, during a quiet moment with a loved one. Don’t feel that you necessarily have to plan where and how the conversation will happen.

Have a conversation opener in mind. You may feel less anxious if you have an opening phrase to hand, such as, ‘I’d really like to talk about the future. Can we have a chat?’

Take your time. It may take a few attempts before you and your loved ones are ready and able to have in-depth conversations. Letting them know that you would like to talk can be a good first step. It may help to start out with more practical matters, such as finances or where you keep important documents, as a way to lead in to sharing the thoughts and emotions you are experiencing.

Be honest about your needs. Whilst you are likely to be very aware of how difficult this conversation is for your loved ones, it may be even more difficult for you to feel as though there is no one to discuss these important things with. Let them know that starting to talk about death and dying is something that you feel ready for and feel that you need to do. This can be a way for them to know how to support you and for you to feel closer to one another.

Reach out for support. Macmillan have a range of leaflets with further advice on how to start the conversation and things that might be helpful to discuss, as well as lots of information and guidance around talking about death on their website.

If you are finding it hard to discuss your feelings about death and dying with family and loved ones, or feel that you want to talk to people outside of your close circle, you may find an online support group is a helpful and safe space for you to voice your feelings. Macmillan have an online support group specifically for people living with incurable cancer.

You may feel more comfortable discussing some of these matters with your doctor (or, if you have one, your breast cancer nurse), or another professional who may be providing psychological support such as a psychologist or counsellor. Don’t be afraid to ask to talk about death and dying. Health professionals will be very encouraging and will know how to support you in these conversations.

Useful resources

The web resource ‘When you die’ has a wide range of stories, videos, podcasts and much more, all with the aim of supporting conversations and considerations of death and dying.

‘Dying matters’ is group of organisations and individuals who have come together with the aim of helping people to talk more openly about death and dying. They have a wide range of information and resources, including a podcast, which you might find helpful, both for you and for family and loved ones who may be struggling to have these conversations. 

Healthtalk.org is a website with a vast range of videos and resources, allowing you to explore the experiences of patients living with lots of different health conditions. Their section on ‘living with dying’ includes videos and information relating to a range of issues around death and bereavement.

Care & treatment: Planning ahead

The Compassion in Dying website has a wide range of resources providing lots of further information on the various aspects of care and treatment planning we describe below. Macmillan also have a range of booklets called, ‘Your life and your choices: Plan ahead’, specific to patients living in England & Wales, Northern Ireland or Scotland.

Advanced Decisions & Advanced Directives

An Advanced Directive is a written statement detailing any treatments which you do not wish to have, in case there comes a time when you are unable to make the decision yourself. It has several different names depending on where you are in the UK.

In England, Wales and Northern Ireland, this is known as an Advanced Decision to Refuse Treatment (ADRT). In Scotland, it is referred to as an Advanced Directive or Living Will.

Macmillan have a wide range of information and guidance on what to consider and include when writing an ADRT, including a template document which you might find useful to complete rather than trying to start from scratch.

Remember, you are able to change your mind about any decisions you make.

Within an Advanced Directive or Advanced Decision, you are also able to state where you would like to be cared for at the end of your life.

An important consideration which is raised when putting together an Advanced Directive or ADRT is what you would like to happen if your heart were to stop beating (a cardiac arrest) and/or your breathing were to stop (pulmonary arrest). In this situation, cardiopulmonary resuscitation, or ‘CPR’, is a way of trying to get the heart and breathing to start again. This involves someone pressing down on your chest and breathing into your mouth.

It is important for you to have a conversation with your healthcare team about what is likely to happen if you had CPR, how long it might extend your life for and what quality of life you would be likely to have.   

You may have heard your healthcare team discuss the term ‘DNACPR’. This stands for ‘Do Not Attempt Cardiopulmonary Resuscitation’. It may also be referred to as a DNAR form (‘Do Not Attempt Resuscitation’). This is a written document, signed by a doctor following discussion with the patient and their family, which states that CPR should not be given if their heart or breathing stops. It is not a legal document but it is kept visibly in your notes and allows the healthcare team to immediately know your wishes in an emergency situation.

Discussing DNACPR with your family and health professionals allows you to make a decision as to whether there is a point at which you would not like to go through CPR.

Without a DNACPR form, healthcare professionals will always attempt CPR.

Macmillan have a wide range of further information on these advanced care planning decisions, specific to people living in England & Wales, Northern Ireland or Scotland.

The Compassion in Dying website have a range of further information on Advance Decisions and decisions relating to CPR, including some common questions relating to CPR and DNAR. If you are living in Scotland, please refer to their section on making treatment decisions and planning ahead in Scotland.

Lasting Power of Attorney (LPA)

Organising a Lasting Power of Attorney (LPA) involves nominating or choosing a person to be in charge of sorting out your affairs if there comes a point when you are no longer able to make these sorts of decisions and arrangements for yourself. This is also sometimes called an advanced decision. It is a legal document. The person you choose is known as your attorney.

In Northern Ireland, this is known as an Enduring Power of Attorney (EPA) and in Scotland, a Power of Attorney. Macmillan have a wide range of information specific to how these legal aspects work whether you live in England & Wales, Northern Ireland or Scotland.

The Compassion in Dying website also have a section relating to Lasting Power of Attorneys.

Making a will

A will is a legal document which puts into writing who you would like to leave things to when you die. It also details who you would like to sort out your personal things, your home or property and your money (this is referred to as your estate). If you have a young family, you will also give the names of who you would like to be guardians for your children in your will.

For some people, making their will allows them to feel more in control and able to look after the ones they love, preventing them from needing to make difficult decisions themselves further down the line.

It is a good idea to consult with a solicitor for expert advice on how to write or update a will. They will be able to make sure your wishes are clear and that they will be carried out as requested.

Macmillan have a range of further information on making a will and other ways you might choose to plan ahead.

The government also provide expert advice on their website relating to the legal aspects of making and updating a will. You can also search for a solicitor in your local area using The Law Society website.  

Planning where you will be cared for at the end of life

Thinking about where you would like to receive care at the end of your life, and where you would like to be when you die, can be extremely difficult and raise lots of different feelings and emotions.

You should not feel rushed into making this decision and you can always change your mind.

Though it can be frightening, some people take comfort in knowing where they will be and who they will be surrounded by when they die. There are a wide range of health and other professionals who are able to support you now and towards the end of life, in a range of different environments depending on your needs and wishes.

Hospices

Hospices and palliative care health professionals are experts in controlling symptoms and side effects related to cancer and other life-limiting illnesses, not just towards the end of life but throughout a patient’s journey, right from diagnosis.

Many people choose to be in a hospice towards the end of their life. Here, patients’ physical, emotional and spiritual needs, as well as those of their family, are expertly cared for.

If you decide you would like to be in a hospice when you die, speak to your GP or, if you have already attended or received support from a hospice, ask to have a discussion with their team.

It is also worth noting that some hospices are able to offer a ‘Hospice at home’ service where their professionals come to your home to care for and support you and your family.

See our section on Palliative care for symptom management for further information on the support these services are able to offer.

Home

Many people choose to be cared for at home at the end of their life and would like to be in their own familiar environment when they die.

If you do choose to be at home, your GP will have overall responsibility for providing your care, supported by other health professionals.

A community or district nurse will visit you regularly. They provide nursing care such as giving medications and changing dressings and practical support such as arranging for equipment that will support your care e.g. certain mattresses, chairs etc.

Palliative care nurses are also sometimes known as Macmillan nurses. They are real experts in helping patients to manage difficult and challenging symptoms such as pain and nausea throughout their illness, not just at the end of life. Though they don’t usually provide daily nursing care to patients, they are able to visit you regularly to help you to manage your symptoms at home, as well as offering emotional support and other practical advice for you and your family.

Your family and loved ones may also play a key role in caring for you at home and towards the end of your life, especially if you decide you would like to stay at home. They may also benefit from receiving support themselves. There is lots of help available. Please see our section on Support for carers. Macmillan also offer a wide range of information and support for people caring for someone with advanced cancer.

Marie Curie nurses are also available to patients in some parts of the UK. Some are able to offer overnight nursing care for you in your home, or one to one care during the day time. This can be for a full 8 or 9 hour shift and can be a real support for you and for family and loved ones who may also be caring for you. Their services are free and are usually arranged by your GP or district nurse.

Social services

You may be able to receive further support at home, such as help with cleaning, cooking and personal care.

If you feel this is something you would like to be considered for, either now or further down the line, speak to your GP or hospital doctor. They are able to refer you to social services, who will assess your needs and determine what sort of support would be helpful for you.

Normally, you pay towards the cost of this support though this will depend on your own financial circumstances.

The website Social Care Info provides information on social care that is available to you in your local area.

Speak to your GP about arranging to be cared for at home or for help with planning to be at home at the end of life.

Hospital

Though it might not necessarily be a person’s first choice of where they would like to be, sometimes a hospital can be the most appropriate place to be if specialist nursing care is required towards the end of life and to make sure that they are as comfortable as possible. Palliative doctors and nurses are still able to have a key role in your care whilst in hospital.

It can be difficult to know whether or not you will need to be in hospital at the end of your life. This can be hard to come to terms with, especially if you would really like to be at home when you die.

Care homes

You may also wish to explore the option of residential or nursing care homes. Residential care homes offer accommodation and support with personal care, whilst nursing care homes are able to provide support with healthcare needs. Whilst you may not require nursing care now, this may be something you will need as you approach the end of life and it is important to plan ahead.

The availability of this sort of care may vary depending on where you are in the UK. Your GP will be able to talk through this option with you and explain the processes for arranging this sort of care.

Don’t be afraid to talk through all of these options with your family, GP, doctor or nurse. They will be able to support you in coming to a decision and putting plans in place. Your wishes can be expressed within an Advanced Decision or Advanced Directive.

Though it may be difficult to have a discussion with family and loved ones about where you would like to be when you die, it can be much more upsetting for them to try and make the decision on your behalf if there comes a time when you are no longer able express your wishes.

Funeral planning

Thinking about your own funeral can seem like a very surreal or unnatural experience. It can be very upsetting to think about your loved ones coming together. It can also feel very frightening to think about your own death.

However, some people take comfort in making plans for their own funeral. They may have particular wishes which they are able to plan for and to share with their loved ones. This can help them to feel more at peace and in control of what is happening.

Planning a funeral can also break down barriers in terms of discussing death and dying with family and loved ones.

It can also be a comfort to know that things are paid for and that family will not have to cover the costs. As funerals can be expensive, some people choose to take out a funeral pre-payment plan. It is a good idea to look into prices first and to make sure any plan you take out covers everything you need it to.  

The National Association of Funeral Directors provide further information on funeral pre-payment plans, as well as information and advice on planning a funeral. They also provide details of how to find a funeral director and advise what you should expect from them to support you with. Their email contact and telephone number are located in the Macmillan organisation database.

You might wish to consider some of the following aspects:

  • Whether you would like any specific songs or music,
  • Whether you would like particular readings or poems, read by particular people,
  • If you have a favourite flower you would like,
  • Whether you would prefer people to donate to a chosen charity rather than bringing flowers.

The decision as to whether to have a religious or non-religious ceremony is also an important one. You and your loved ones may feel differently about this so it can be helpful to talk about your wishes with them. If you do not have religious beliefs, you may wish to consider an alternative such as having a humanist ceremony.

Dying Matters has a wide range of information relating to planning a funeral and sharing you funeral wishes.

The Natural Death Centre also provide a range of independent funeral advice for people considering organising a funeral without a funeral director and other alternative options.

The Good Funeral Guide also provide a range of practical information and advice.

Faith & spiritual needs

Many people live without faith, religion or spiritual beliefs and it is important that those coming to the end of their life don’t feel pressure to suddenly change their beliefs or consider spiritual needs which may not be relevant or comforting to them.

However, it is not uncommon for people nearing the end of life to begin to consider religion and spiritual beliefs which they had not before. This is very natural and can be a real comfort.

Faith or religion may have always been an important part of your life and may be a natural and familiar source of comfort and support for you.

Either way, you may find that you wish to explore or to seek support and comfort from a religious or faith group when thinking about death and dying. Lots of hospitals have a chaplain or other faith leader who patients are able to speak with. A local church or other place of worship may also hold support groups or allow members of the community to drop in for worship, support or socialising.

The When You Die project also has lots of resources exploring thoughts on life after death which you may find useful to read.

Dying Matters also explores some of the more spiritual aspects of death on their website.

Passing on memories: Making a memory box

The thought of no longer being here for your family and loved ones can be very difficult to come to terms with. This can be particularly difficult if you are a parent and you may worry that your children will forget things about you, happy times you shared or how much you love them.

Making a memory box can be a helpful way to channel your energy and emotions in a practical way, keeping memories alive for the people you love. Though you are likely to experience sadness and a whole range of emotions when making a memory box, you may find that it is therapeutic to reflect on happy memories and bring together special items to create a very personal gift which will be treasured by loved ones.

Memory boxes can be especially helpful for younger children. They provide them with physical memories and items they associate with you which they can hold on to as they grow older. For young children, it can help them to keep hold of things they may have otherwise been too young to remember. The joy of a memory box is that a person can continue to come back to it, whatever their age. If your child is very young, you may choose to leave the box with another family member to pass on to them when they are a little older and to support them in managing the feelings they will experience when looking through it.

Looking through a memory box can bring about a range of emotions in loved ones, both sadness and happiness, but this is all part of the process of remembering and coming to terms with their loss.

What to include

There is no right or wrong way of making a memory box. It can be as simple or as elaborate as you like, whether a shoe box, a gift box or even digital files on a memory stick.

You may choose to include photos of you and your child or loved ones, notes, cherished items such as toys, pieces of jewellery or an item of clothing, items which trigger memories such as concert or travel tickets or favourite things you shared such as a particular book, film, recipe or picture.

You might like to write a letter to your loved one as part of the memory box. If this feels too difficult to write, or you are struggling to know what to say, little notes or cards with smaller messages on can be an alternative.  These might include little memories you shared, things you will miss about your loved one and things you love about them.

Macmillan and Cancer Research UK have lots of suggestions online on how on leave behind memories for loved ones.

Page last updated: April 2020