Living with advanced prostate cancer

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Living with advanced prostate cancer can be hard to deal with emotionally as well as physically and may affect your life, work and relationships but there are ways to deal with these changes.

Coping emotionally

Living with advanced prostate cancer can be hard to deal with emotionally. Symptoms and treatments can be draining and make you feel unwell. And some treatments, including hormone therapy, can make you feel more emotional and cause low moods.

You may feel a wide range of emotions. Your emotions might change very quickly. All these are very normal ways to feel. But if you are feeling very down or worried, do speak to your GP or nurse, there are things that can help. Or you can call our Specialist Nurses.

There is no 'right way' to deal with your feelings. Give yourself time. Don’t put yourself under pressure to be positive if that’s not how you feel. There will be good days and bad days, make the most of the days you feel well, and find ways to get through the bad days.

Some men want to find their own way to cope and don’t want any outside help. But there is support available if you need it.

Relationships

Having cancer can often bring you closer to your partner, family or friends. Or sometimes it can make relationships feel more difficult and. Some days may feel harder than others.

The cancer and your treatment might mean that your partner or family need to do more for you, such as helping you get up, get dressed, wash and eat. Or they might take on tasks that you can’t do any more, such as managing finances or doing jobs around the house. These changing roles can sometimes be difficult for both you and your family to deal with. You might not feel comfortable becoming more dependent, and they might have problems coping or feel very tired.

Some people may be unsure how to act around you and might find it difficult to talk about your cancer. They could be worried about upsetting you, or about becoming upset themselves. Sometimes it can help if you let them know whether you want to talk about it or not.

What can help?

Talking to those close to you can help everyone deal with tensions. But sometimes talking is not that easy. If you’d like help with relationship problems, your nurse or GP can put you in touch with a counsellor, and your local hospice may have a family support team.

You could also try contacting organisations such as Relate or the College of Sexual and Relationship Therapists.

Supporting someone with advanced prostate cancer

If someone close to you has advanced prostate cancer you might be able to offer him a great deal of support. But looking after someone with advanced prostate cancer can be difficult. It’s important to look after yourself and get support if you need it.

Talk to someone. Sharing your worries and fears can make you feel less alone. You could talk to a family member or a close friend, or someone trained to listen, like your GP or a counsellor.
Connect with other carers. You might find it helpful to talk to other people in similar situations. You can search for local carers groups on the Carers UK website.
Take time for yourself. Take time to relax and rest so that you don’t get too tired and can cope in the long run.
Accept help from friends and family. Don’t feel that you have to cope with everything on your own. Try to accept help from other people.
Look after your health. If you feel unwell, tired or low, talk to your GP.
Ask for help. Practical, financial and emotional support is available from social services and charities. Talk to your GP about what support is available in your area, or speak to our Specialist Nurses.

Macmillan Cancer Support have more information about caring for someone with advanced cancer. You can also read our booklet, When you’re close to someone with prostate cancer: A guide for partners and family.

Talking to children

It can be difficult and upsetting to talk to children or grandchildren about your cancer, whatever their age. Not everyone chooses to talk about their prostate cancer. Everyone is different and it’s okay to keep things private. But if you do decide to tell your family it usually helps to be honest with them. Keeping things from them might only make them worry more.

Children can often sense that something is wrong even if they don’t understand it. They may also notice that things at home have changed, such as their day-to-day routine. This can be confusing, especially for younger children. Charities such as Macmillan Cancer Support and Winston’s Wish have more information about how to talk to children when a parent or grandparent has cancer. Fruit Fly Collective also has information, and activity kits to order for children of all ages. You could also ask your GP or specialist nurse for advice, or call our Specialist Nurses.

If you’re worried about talking to teenagers or adult children about cancer, find a time and place that feels right for everyone to talk. Everyone reacts differently when they’re told that someone they love has cancer, but they may be shocked, upset or even angry. They may also have questions, which you might not always know the answers to. It’s okay to be honest and say if you don’t know something. Some people find it helps talking to a counsellor, either together as a family or individually. Your doctor or nurse can tell you more about counselling services for yourself, and for your family. Your hospital and local hospice will also have support and information for partners and family members.

Daily life with advanced prostate cancer

Advanced prostate cancer can affect whether you’re able to work or carry out everyday tasks. But there is advice and support available.

Work and money

Advanced prostate cancer and the side effects of treatments can make it more difficult for you to work. You might decide to work part-time, or stop working altogether. If your partner is caring for you, they might not be able to work as much.

A lot of men and their partners worry about how they will cope financially. It’s a good idea to get advice about your own situation. You may be entitled to sick pay if you are employed, or to retire early and start receiving your pension. You may also be entitled to claim certain benefits. In the UK, there’s a law to say that cancer is a disability. So, even if you feel well or don’t have symptoms that are bothering you, remember that the law protects your rights, including at work.

You can find out more about benefits and other types of financial help from other organisations, including:

gov.uk
Macmillan Cancer Support, Carers UK and Carers Trust
Citizens Advice
a benefits adviser at your local council or hospital
an independent financial adviser.

At home

You might find everyday tasks more difficult. If you need help, speak to your GP or your local council. The council’s social services department may provide a range of support services, such as practical and financial advice and access to emotional support. Social services can assess your needs and those of your carer, if you have one. They can work out what services can help, and provide information about support available in your area. Some services may be free. Or you may need to pay towards them.

Equipment and changes to your home

An occupational therapist may be able to advise you about practical things to make it easier to live at home. For example, they may suggest making some changes to your home, or special equipment to help with everyday tasks. Your social services department or your GP can refer you to an occupational therapist.

Help at home

You may be able to get help from a home care worker. Home care workers include care assistants, for help with housework and shopping, and personal care assistants, for help with tasks like getting washed and dressed.

Respite care

If you need ongoing care from your partner, family member or a friend, respite care allows them to have a break. A professional will take over your care for a short time. Examples of respite care include:

a sitting service, where someone stays with you in your home for a few hours
a short stay in a residential home or hospice
a carer who comes into your home for a few days.

If you live alone

Dealing with advanced prostate cancer can be hard at times, particularly if you live on your own. Don’t be afraid to ask for help if you need it. You could speak to your GP or nurse. If you have friends or neighbours nearby, they may be able to help, both practically and emotionally.

Joining a local support group can also be a good way of meeting people with similar experiences. For details of your nearest support group, ask your doctor or nurse or visit our page about support groups.

Driving and public transport

There are various schemes available to help with transport. These include the Blue Badge scheme for parking, the Motability Scheme for help with leasing a car, and cheap or free travel on public transport. Contact your local council for details.

If you’re having trouble getting around, ask your nurse or GP about local transport services. For example, the British Red Cross offer a door-to-door transport service.

If you drive, you don’t need to tell the Driver and Vehicle Licensing Agency (DVLA) – or the Driver and Vehicle Agency (DVA) in Northern Ireland – that you have prostate cancer. But you should tell them if:

your medication causes side effects likely to affect safe driving
your doctor is concerned about your fitness to drive
you develop any problems with the brain or nervous system
you can only drive vehicles with special adaptations or certain types of vehicle.

If you’re unsure, speak to your doctor. You can find out more from the official government website, www.gov.uk. You should also tell your insurance company about your prostate cancer to make sure you’re properly covered.

Travel

Holidays can be a great way to relax. Having advanced prostate cancer shouldn’t stop you going away, but there are things you might want to consider. For example, it can be more difficult to get travel insurance. Read more in our fact sheet, Travel and prostate cancer.

Planning for the future

You might find that making plans helps you feel more prepared for what the future may hold. It can also reassure you about the future for your family.

Some men find it difficult or upsetting to think about what will happen if their cancer progresses and they come to the end of their life. Although it might be very hard, it’s a good idea to talk about your wishes with those close to you so that they understand what is important to you. It can be helpful to have these conversations and start making plans well ahead of time. It’s important to write your wishes down so that if you become too unwell to make decisions, your healthcare team and family should know what you want.

Find out more about planning for the future from Dying Matters and Compassion in Dying. Macmillan Cancer Support and Marie Curie also provide information about what will happen in the last few weeks and days of life.

Planning your future care

It can help to think about what care you would like to receive in the future. For example, you may need to decide how and where you’d prefer to be cared for and whether there are any treatments you don’t want to have. This is called advance care planning. Planning your care can help to make sure you get the care you want. But not everyone wants to think about what care they want in the future, and it’s not something you have to do.

People often find the thought of planning for their future treatment and care overwhelming. But the options may be more straightforward than you think, and there’s lots of support available. We’ve listed some of the options below.

Writing down your wishes

An advance statement (or anticipatory care plan in Scotland) is a general statement about anything that is important to you in relation to your future health and wellbeing. It can include:

things that are important to you or that you’d like other people to know about your life, including information about your identity and religious or cultural beliefs
your wishes about the type of care you want, for example if you have a daily routine you’d like to stick to
who you would like to be involved in making decisions about your care, if you’re unable to make them yourself
where you would prefer to be cared for – for example, at home, in a hospice or at hospital
where you would prefer to die.

Your doctor will take your advance statement into account when making any decisions about your care. But they don’t legally have to follow what your advance statement says, and your doctor might not always be able to follow your wishes. Download an advance statement form for free.

Deciding not to have certain treatments

An advance decision to refuse treatment (ADRT), known in Scotland as an advance directive to refuse treatment, allows you to record any treatments you don’t want to have in certain situations. You might hear it called a living will.

An advance decision or advance directive is used if there’s ever a time when you are unable to make a decision for yourself, or if you can’t communicate what you want. For example, if you are unconscious or very sleepy in your final days.

You can’t use an advance decision or advance directive to ask for a specific treatment or to ask for your life to be ended.

If you wish to make an advance decision or advance directive, you must do this in writing. Make sure your doctor, nurse and family know about it. This means they can follow your wishes.

Download a free advance decision pack, and find lots of free support to help you complete it on the Compassion in Dying website. It’s a good idea to speak to your partner or family about what to include in your advance decision. And ask your doctor or nurse if you’re not sure about something.

You can change your advance decision or advance directive at any time. It’s a good idea to read it regularly to make sure it is still what you want.

Whatever you decide, your doctor or nurse will still try to make sure you are comfortable and not in pain.

Support in making decisions

Thinking about your wishes and making decisions can be difficult. Here are some things that may help, but you don’t have to make any decisions if you don’t want to.

Talk to your doctor or nurse so they know your wishes when planning your care. They’ll keep a record of your decisions.
Talk to your family about what you want, and help them understand your wishes. Let them know if you change your mind.

Age UK and Compassion in Dying have more information about making decisions about your future care.

Appointing someone to make decisions for you

You, your loved ones, and your doctor or nurse will usually make decisions about your care together. But you can choose one or more people to make decisions for you if you’re unable to – for example, if you are unconscious. The people you chose won’t be able to make any final decisions about your care, but they should be involved in conversations with health professionals about you care. They should be someone you trust, like a family member or friend. This person is known as an attorney, and the legal document is known as a lasting power of attorney.

There are two types of lasting power of attorney, and you might choose someone different as each one.

A property and financial affairs lasting power of attorney can make decisions about money and property.
A health and welfare lasting power of attorney can make decisions about your health, personal care and welfare.

Age UK and Compassion in Dying provide information about making a lasting power of attorney. You can find more information and the forms you need to fill in on the official government website, www.gov.uk.

Practical things

Making a Will

By making a Will you can decide who will get your money, property and possessions after you die. If you die without making a Will, the government can decide who gets these things. You don’t need a solicitor to make a Will, but using one makes sure your Will is made properly and is valid.

Age UK and Macmillan Cancer Support have more information about making a Will. The Law Society can help you find a solicitor.

Making a funeral plan

Some people want to be involved in decisions about their own funeral, such as whether they will be buried or cremated, or what music and readings to have. Some people take comfort in making these plans. But others prefer not to think about this.

If you do want to think about your funeral, you could discuss your wishes with your family, or write them down for them. Some people include instructions for their funeral in their Will. You can get more information about planning a funeral from Age UK and GOV.UK.

Worries about dying from advanced prostate cancer

Not all men with advanced prostate cancer will die from prostate cancer and men often live with advanced prostate cancer for several years. But you might have questions about what will happen if your cancer progresses and you’re approaching the end of your life. It can help to know what to expect and how you can get the support you need. This can also make things easier for your family and friends.

Coming to terms with things

If you’re approaching the end of your life, this might be hard for you and your family to accept. Even if you’ve been living with prostate cancer for years, it can still be a shock. Some men feel upset, alone, or angry. Some men worry about their family and friends. It can be difficult to talk to your family about what’s happening.

Give yourself time – it can take a while to process what’s happening. Some men want time by themselves or with a family member or close friend. There are things you can do to help yourself and people who can support you.

What to expect

Some men find that they get more symptoms in their last months and weeks. Others find that existing problems get worse. Read more information about what to expect.

Getting access to care

Towards the end of your life, your doctor or nurse will try to manage any pain and other symptoms. They will try to give you emotional, physical, practical and spiritual support. And provide support for your family and for people looking after you. This is sometimes called palliative or supportive care.

You might be looked after in a hospice, hospital, care home, or your own home. Where you’re looked after will depend on what you need, what you prefer, and the services in your local area.

Your GP can refer you for palliative care and end of life care. Even if your doctor or nurse doesn’t bring this up, you can still ask them about it. They can explain the services in your area and what support might be suitable.

Read more about dying from prostate cancer, or speak to our Specialist Nurses. They are here to support you and your family.

References

Updated: February 2015 | Due for Review: February 2017

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