Getting ready to go home

When you are ill, the hospital can feel like a very safe place. You may look forward to going home, but the thought of being away from the hospital and your healthcare team can also be quite scary.

Outside of a house

If everyone plans ahead and talks about any possible problems beforehand, going home should be a positive step.

Talking to people about any worries you have about going home can really help. You can often have this kind of discussion with a nurse or social worker while you are still in hospital. Start by discussing the medical things, and then go on to talk about your emotions, which are just as important. This is the time to talk about any concerns you have. For example, if you are worried the people close to you will fuss too much, or aren’t sure how going home will affect your relationships with them.

If you are going home to your family, there may be things you could agree on before you go home. For example, having a space in the house where you can have some time to yourself.

It is also important to understand that sometimes going home can be an anti-climax. You may have been looking forward to it so much that you expected everything to be fantastic. But when you get there, you may realise that everyone has continued with their lives and you feel a bit left out. It may also be very quiet at home compared to being in hospital, and this can take a while to get used to.

Remember that you haven’t fully recovered yet and you need to rest. It is also normal to feel down sometimes. Getting in touch with some close friends, including friends you made in hospital, may help. Spending time with your family, for example watching a film or playing a game, can also help you settle back into life at home.

If you live alone

It can be tough moving out of an environment where a team is there to care for you 24 hours a day. Even though you may value your independence, being ill can make you feel lonely and frightened.

Make sure the people close to you know you have returned home, so they can support you. You can also contact organisations who will understand what you are going through and offer support and guidance.It’s okay to ask for help. People who care about you will want to help in any way they can. Some people may find it difficult to talk, but may be happy to help in practical ways, like helping with your shopping or cooking you meals. Others may be able to talk and listen to you. This can help you to share any worries and fears.

Speak to your social worker about getting a home helper if you need one. Your GP, social worker, or community nurse will also be able to tell you what help and support is available from local health, social care and voluntary organisations.

If you are going home to your family

When you lived at home before, it might have seemed as though nothing ever happened. You would have been used to the good moods, bad moods, friendships and rows in your family. If you have been in hospital for a while, it might be hard being in the middle of it all again.

You might also find it difficult to get any privacy. In hospital, you could close your curtains or go back to your room when you were tired, and people would know not to disturb you. That is not always as easy at home.

If you have a small family, or there aren’t many people living at home, things might seem very quiet compared to being in hospital.It can take time to get used to being at home again. And having cancer might have affected your relationships with your parents or carers, brothers and sisters or other family members. Your healthcare team will have helped lots of people in a similar situation, so ask them for help if you need it.

Managing at home

Leaving the security of the hospital can sometimes feel scary. In hospital, there is always somebody around if you feel ill or worried. When you get home, suddenly you can feel like you are on your own. You may worry that something could go wrong and no one will be there to help.

For example, you may go home with a central line, portacath or PICC line still in place. Your nurse will show you how to look after this, and you can always phone and check with hospital staff about any worries, day or night.People with cancer can be particularly at risk from infection. The coughs, colds and bugs that other people recover from quite easily can sometimes be very serious for you.

Your healthcare team will tell you when and how you need to take particular care of yourself. They will also tell you who to contact if you are worried.

Getting help when you are at home

  • It is important that you know who to contact with any questions or concerns when you are at home. Your healthcare team should discuss this with you before you leave hospital. But it is also a good idea to go through it with the people close to you so they know what to do if there is a problem or emergency. Who you should contact in an emergency will vary depending on where you live and your situation. You will be told who to contact before you leave hospital.
  • Write down any important phone numbers and contacts. Make sure everyone knows where to find them. Save important numbers in your mobile.
  • You, or someone close to you, can ring the hospital ward for advice at any time, day or night. Some hospitals have patient helplines you can ring. Never be scared of worrying them unnecessarily as they are there to help you.
  • Your GP and community team (if there is a local team available for your age group) should have been told that you are going home. They will be jointly responsible for your care when you are out of hospital.
  • If problems happen and you were treated a long way from home, you may be able to see a consultant at a local hospital. If necessary, they can arrange an emergency admission or get you back to the hospital where you were treated.
  • It is useful to have information about other support groups and advisers, such as local Macmillan nurses, specialist social workers or helplines. Your specialist nurse, key worker or community nurse will have details of local groups. Many areas now have acute oncology services, which can help people with cancer in an emergency. You will be given their contact details.