One of the most difficult things about getting a lymphoma diagnosis is having to tell people that you have cancer. Cancer can affect the human spirit as much as it affects the body. It can challenge your values, beliefs and goals. Remember that you are not alone. Your healthcare team will help you with your feelings and emotions. This type of support is an important part of treating your lymphoma.
Telling people that you have lymphoma (and explaining your treatment to them) can be very difficult. You need to decide who you want to tell and what you want to tell them.
Telling Family Members and Friends
Here are some suggestions to help you talk about your cancer with your family and friends:
- Make the first move by telling people about your lymphoma. People may be unsure of what to say, or afraid to ask you questions for fear of upsetting you.
- Make it easy to have a private, quiet conversation by closing the door, turning off the TV, making sure you won’t be interrupted. It may be helpful to have someone with you who already knows about the diagnosis.
- Speak at a level they can understand, especially when speaking with children.
- Give information in small chunks and check to make sure the person understands.
- Don’t worry about moments of silence. You may find that holding hands or sitting together quietly says more than words.
- Be as honest as possible about your feelings. Others may feel many of the same emotions that you have had.
- Let them know what to expect during your treatment and what you expect from them.
- If others want to help you, tell them how they can help.
- Be prepared for difficult questions.
- Encourage your family members to speak to your healthcare team about their questions or concerns.
Talking to children about your cancer can be a very difficult thing to do, and may be upsetting for both you and the child. However, involving children in the situation and letting them know what is happening in the early stages can be very supportive to them and can help them (and you) to cope better with the illness. Your healthcare team can put you in touch with specialists who can help you explain your lymphoma and treatments to your children.
Lymphoma and cancer affects the feelings and emotions of the whole family and a child has a right to know about anything that affects the family. Children can sense when something is wrong, because they are very sensitive to tension and stress. If you try to protect them by saying nothing, they may fear that something even worse is happening or they may feel betrayed if they hear the news from someone else. Furthermore, not talking about lymphoma may suggest it is a subject too terrible to be discussed, and can make children have an exaggerated fear of cancer or illness later on.
Children who know the situation can be a comfort to you. You won't need to watch what you say all the time or feel secretive and isolated in your own family. Openness can help all of you to feel closer. Also, children have an ability to deal with the truth that adults often underestimate. Not knowing things can make them feel anxious. Even very sad truths will be better than the uncertainty of not knowing what is happening. We cannot stop them feeling sad, but if we share our feelings and give them information about what is happening we can support them in their sadness.
Dealing with cancer in the family can be an opportunity for children to learn about the body, cancer, treatment and healing. They can learn about how strong people can be during hard times and how to deal with difficult feelings.
Who should tell my children?
As a parent, if you feel able to tell the children, it is usually best for you to do it. This is a very difficult thing to do and there is no easy way of saying it. It is all right to get upset or cry. Seeing you cry gives your children permission to cry too, and crying together can feel very supportive as you are sharing your feelings. You will know if you can be the one to tell them. If you do not feel able to tell the children, your partner or a close relative such as a grandparent could do it. A nurse or your doctor or a member of the professional staff looking after you can also be involved. It is important that you know what has been said to your children, and it may be helpful for you to be present when they are told.
When should I tell my children?
After being diagnosed, it is helpful to explain what is wrong. You don't have to tell everything at the same time. You can give a bit of information at a time. Before treatment begins and when you are being treated, you can explain the treatment and how it is given. You can also talk about the side effects and about any changes in treatment, whether things will be different at home or how you feel. Some treatments can make you feel very tired and possibly irritable. It is helpful to explain this to your children so that they know that the treatment may affect how you behave and relate to them. Try to keep information relevant to the current situation. It can be best to give children warning that something is about to happen, such as a scan or treatment, shortly beforehand, but not too far in advance. After you finish treatment, explain to your children that you will tell them about your health and about any changes. Be willing to talk whenever your child asks questions or seems concerned about your condition.
How much should I tell my children?
Children need to be told information in a way that they can understand. Tell them what has happened, such as some basic details about the cancer. Be honest and let them know how the situation affects your feelings and emotions, as well as giving factual information about the cancer and treatments. Do not be afraid to use the word cancer. Be clear and direct and do not create a feeling that cancer should be a secret by using terms like “the big C”. Reassure children that they cannot catch cancer from you. Explain what will happen next, such as how it will be treated. Leave them with feelings of hope that even though you are upset now, there will be better times. Assure them they will still be loved and cared for but explain how their lives might change since treatment can disrupt routines. Tell them who will look after them, if necessary.
Let them ask questions and listen to them – it lets you know what they can cope with and answer their questions simply. Ask them if they are worried about anything in particular and correct any misunderstandings they may have.
Most importantly, tell them how much you love them and that nothing they did caused the cancer since children may worry that the cancer is their fault and they must have done something wrong for this to happen.
Telling Co-workers and Employers
Whether you are the person with lymphoma or the caregiver, telling people at work is a very personal decision. It might become difficult to keep the cancer a secret at work especially if you are gone for long periods of time or your appearance changes. Your decision to tell co-workers will depend on several things such as:
- Your relationship with them and the importance of your privacy. Do you trust them and consider them friends?
- Your company’s corporate culture. Are you more like family or is it strictly a business work environment?
- Previous experience with illness in the office. How did people react when someone else in the office was sick?
If lymphoma and treatment will interfere with your ability to do your job, you will probably have to tell your boss and those you work closely with. They will need to know if you need to take time off, if your productivity will be affected or if you will need to change how you do your work. If you are the boss, you may need to explain the situation to some, if not all, employees particularly if the day-to-day operations of the company will be affected.
If you don’t know where to begin or are concerned about how your employer will react, try starting with your human resources department of personnel manager. Their experience may support and guide you through the disclosure process.
It may be a good idea to wait until you know the details of your treatment schedule before telling those at work. You will then be able to tell them when you will be away and for how long. Do keep in mind that the more advance notice you can give people, the more you can plan to cover your absence and making plans for your absences shows your boss and co-workers that you are committed to your job.
Do not be afraid to ask for the kind of support that you need. For example, you may not want to talk about having cancer while at work. You can always ask a trusted colleague to let others know that you would prefer to focus on your job rather than on the cancer.
Responding to Reactions
People react to difficult news many different ways. Some will know exactly what to say and do and will be easy to talk to. They will know how to support you over the course of your illness and treatment.
Others may not react in a way you understand. Some may think of cancer as an automatic death sentence. Learning about the current treatments and approaches may lessen their fears and give them hope.
Those close to you may think they are protecting you by not talking openly and honestly about lymphoma even when you want to talk about it. Sometimes people can take a long time to come to terms with cancer or they may want to rush through the process of understanding and dealing with it. You might find it helpful to speak directly and honestly to them about what you are feeling and what you need.
Some people may withdraw from you and this may hurt you. This does not mean that they do not care but they may not feel able to deal with the situation. They may be afraid to see you looking sick or in pain. They may feel threatened by the illness or worry that they will say the wrong thing or not be able to help. If you feel up to it, you can try to phone or e-mail an absent friend or relative. You can let them know what is happening and that you would like to see them. Consider asking them to do practical favours for you – this makes them feel useful and next time they may feel able to call or just drop in. Sometimes people just need to be told how they can help. In some situations, you may have to accept that some people may not be able to deal with cancer and while this can be upsetting, remember that you have not done anything wrong. They are just staying away because they are not able to accept or deal with your difficult situation.