Help us to stop bowel cancer

Coping with diagnosis

This page describes how a bowel cancer diagnosis can affect you and the people around you.

You can find information on:

  • Your feelings
  • Waiting for appointments
  • You and your partner
  • Coping on your own
  • Telling people
  • Talking to children
  • Telling a parent
  • Getting support and information

Your feelings

In the early days following diagnosis, you may feel all sorts of emotions. People have described feeling shocked, numb, sad, scared or angry among other things. For some, there is a sense of disbelief that this is really happening. Sometimes people lose interest in the things they enjoy or have trouble sleeping or eating. Most of these feelings will ease off in time. Talking to family and friends can help.

For some people there can be a sense of relief that they finally know what is wrong with them. Some people deal with their diagnosis in a practical way and focus all their energy on getting better.

Some people feel a lot of pressure to ‘stay positive’ and to ‘fight’ cancer. This can help some people cope for some of the time, but everyone copes in their own way and you don’t always have to be positive. It is okay and normal to feel down or worried at times.

If you have any difficult feelings that don’t go away or are hard to cope with, speak to your healthcare team or your GP. They can refer you to a counsellor or psychologist or they can offer you medicines that can help.

Macmillan Cancer Support also has information on coping with emotions.

Waiting for appointments

Waiting for treatment and test results can be stressful and worrying. Finding something to keep you busy can help. This does not need to be anything too tiring but could be something like visiting family or friends if you feel up to it, or a hobby that you can do for short periods of time. Finding out what to expect from the treatment can help you to feel more in control.

You can also speak to your specialist nurse or call the Macmillan Cancer Support or Beating Bowel Cancer helplines.

You and your partner

Your relationship with your partner may change when you are diagnosed with bowel cancer. One or both of you may be finding it difficult to cope. Your usual roles at home may have changed, for example if you stop working or if you’re not able to do the things around the house that you used to. You may find it difficult to get used to these changes and this can put a strain on your relationship. In time, you may feel a closer bond between you as you deal with your diagnosis together.

Try to keep talking and listening to each other. Tell your partner what they can do to help you, for example, answering phone calls from friends and family. Your partner might also need support themselves. They can ask your healthcare team if there is any local support for partners or they may find the online forums on the Macmillan Cancer Support and Beating Bowel Cancer websites helpful.

Coping on your own

If you live alone, there may be times when you feel you don’t have the support you need. Joining a support group can help you to meet others who are going through similar experiences to you. Ask your healthcare team if there are any local groups. Online forums are a good way of chatting to others during the night or at weekends.

The Macmillan Cancer Support website has a list of support groups and an online forum. Beating Bowel Cancer also has an online forum.

Telling people

Talking about cancer can sometimes help you to feel closer to the people who are important to you and can help you cope with your diagnosis. But people are not always used to talking about cancer and there can be many strong emotions or difficult situations that make it harder.

Choose who you want or need to tell. If possible, start by telling those who are likely to react in a way you think you can cope with. Sometimes people are upset and shocked and may struggle to think of what to say. If you are feeling uncomfortable with any silence you could ask what they are thinking or let them know what your treatment plan is if you want to.

Sometimes when people are shocked they blurt out thoughtless comments. Usually, people don’t mean to upset you and you might want to deal with these comments by thinking of them as a reaction to shock rather than anything personal. 

Telling people about your cancer gives them a chance to offer you practical and emotional help. Don’t be afraid to take up their offers or to ask for help. If you are someone who has always managed by yourself, this can take a bit of getting used to. But by accepting help, you can save your energy for the things that are most important to you.

If you have a lot of people to tell, friends or family may help you. Or you might want to send a group email or text. If you are doing this, telling people what they can do to support you can help them know how to reply. For example, you could suggest that you would accept any offers of transport to appointments or help with childcare. You might want to let people know if you are finding it tiring to talk about your diagnosis. You could warn them that you might not want to talk about it or you might limit visitors to start with.

There may be some people you don’t want to talk to about your cancer. You might want to practice a few things to say, so you can use them if you need to. One example might be, “I’m not bad thanks, how are you getting on?” to turn the attention away from you and on to the other person.

You can read more about talking to friends and family on the Macmillan Cancer Support website. They also have information for friends and family on how to support someone with cancer.

In the following video we speak to four people about the impact their diagnosis had on their friends and family.

Talking to children

Whether you have children,grandchildren or other young children in your family, talking to them about cancer can be difficult and upsetting for you both. Some people are unsure what the ‘right’ things to say or do are and may try to protect the child from being upset by not telling them what is happening. But even very young children may sense when something is wrong in the family and they can get more worried when they are not told what is going on. They may even fear that something worse is happening. Talking to children also helps them understand so they don’t rely on wrong information from other places like the television or internet.

You don’t need to tell the child everything at once. Tell them in a language that they will understand and then be prepared to answer their questions. You can check that they have understood by asking them to tell you what is happening in their own words. If you don’t have an answer, it is okay to say that you don’t know. It is also okay to cry or become upset in front of the child because it gives them permission to express their emotions as well. Ask how they are feeling and try to find out what they are worried about. Generally children need to be reassured that they will still be loved and cared for. Young children may want to know who will make dinner or take them to school if the person who normally does this is unwell.

You may want to tell your child’s school or any clubs they go to. This will help the staff to support your child and understand any changes in their mood or behaviour.

If you feel you need some support with telling children about your cancer, speak to your specialist nurse. If you have a Maggie’s centre in your area, they can also offer you support.

Macmillan Cancer Support and Cancer Research UK have information on talking to children about cancer.

Telling an older relative

Your relative may already know that you have been having tests for a medical problem. They may have no idea that you have been worried about your health or they may have noticed that something was wrong. Whatever the situation, telling an older relative that you have cancer can be difficult. You may worry about upsetting them or you may need to think about their health. For example, if they have dementia, they may find it difficult to understand your cancer.

You may decide that you don’t want to tell your relative. Be aware that someone else may tell them or your relative may notice that something is different. You know your own family best. You may want to talk to another member of the family or friend about what to do.

You can’t make difficult or bad news good, but these things may make it a bit easier for you and your relative.

  • Think about whether you want to tell your relative straight away or wait until there is a treatment plan to talk about. This can give you something positive to focus on.
  • Is there a good time of day to tell your relative? If you tell them earlier in the day they may have more time to take the news on board or contact someone else for support. If you tell them nearer the end of the day, both of you may find it difficult to sleep. 
  • Think about taking a booklet that explains your cancer.
  • If your relative is your parent, they may feel helpless because they haven’t been able to protect their child from cancer. You can let them know how they can help. For example, by asking them to look after grandchildren, help with housework or just be there for a cup of tea and a chat.
  • If your relative is in a care home or hospital, you may want to tell the staff so that they can support your parent.
  • If your relative has personality or behavioural changes caused by an illness, such as dementia, they may react by saying something that seems thoughtless. Or they may seem to ignore you. These reactions can be difficult but they can be easier to deal with if you prepare yourself for them. You might want to ask someone else to repeat the information to your relative later on.
  • Think about what may help you after you have told your relative. Perhaps having quiet time on your own or having someone supportive to turn to.

Getting support and information

Your specialist nurse will be your main point of contact with your healthcare team. They will tell you how you can get in touch with them if you have any questions or worries.  

Your GP or practice nurse can also give you support and information. They may offer you a ‘cancer care review’, which looks at what support you need and gives you the chance to ask any questions about your diagnosis and treatment. You should be offered this review within six months of your diagnosis. Ask your GP surgery if they offer this.

You can get in touch with other people with bowel cancer, to share experiences and support. Your specialist nurse can tell you if there are support groups in your area or you can find a list on the Macmillan Cancer Support website.

There is a lot of information available on the internet, and not all of it is good quality. Cancer Research UK gives tips on how to check whether cancer information on the internet is reliable. Have a look at our list of useful websites for information you can trust. 

If you read something on a website that worries you, ask your medical team about it. Otherwise you may end up worrying about things that do not actually apply to you.

 

Updated March 2016. Due for review March 2018