Crying is a healthy way to release your feelings of stress but it can be difficult to do in front of other people.
Recognising and expressing your emotions can help you to manage your psychological and physical health. At first, you may find it easier to talk to someone besides your doctor, who can really understand your emotions. Find out what works for you:
“After diagnosis you have to tell people, you cannot bottle something like that up… I found this one of the most difficult things I’ve ever had to do.”
It’s up to you to decide when to talk to your friends and family about your diagnosis. Sharing your hopes, fears and medical updates with people can bring you closer and ease your burden.
First, think about how much you want to share. You may want to briefly explain what type of NETs you have, which treatments you might need, and what your long-term outlook or your prognosis is.
People usually tell their spouse or partner first, then a few other family and close friends. It’s also important to tell your children so they can understand.
As you talk with others, you may want to write down the questions that come up so that you can discuss them with your doctor or your multidisciplinary team.
You may feel comfortable to explain all this to one or two close friends, either face-to-face, or over the telephone, but it may get tiring to tell a lot of people. So ask your friends to help explain your condition if you don’t want to talk about it to your close family.
As we live in a modern age, and if you want to share your thoughts with a group of close family or friends who may not live near to you, you could try keeping in touch with them through social media by creating a private Facebook group or by using a chat app on your smart phone such as WhatsApp, or even a monthly email, letter or phone call to let them know how you are doing.
“It is difficult to give advice, but be open, talk about everything. For me it is important not to hide information.”
“After diagnosis, you have to tell people – you cannot bottle something like that up.”
“My first reaction when I read the word ‘carcinoid’ was to hide it from everybody, not to tell anybody, like it would go away.”
Your friends may also be looking for a comfortable way of talking to you about your diagnosis and living long term with your cancer. They may want direction on how to behave with you. Let them know how they can help you. This gives them a chance to understand your feelings, and find out more about your needs.
Tell them about this website if they would like to learn more about NETs, for example, or direct them to other information they can read if they are interested.
Some people may not be able to cope or relate to what you’re saying about your NETs diagnosis. They may be uncomfortable about discussing your condition, and they may choose to avoid you so they don’t have to do this.
Don’t allow yourself to be discouraged by such reactions – not everyone is comfortable talking openly about cancer. Some are unable to listen because of their own experiences or their own emotions, not yours.
Don’t let this become your problem. In some cases, they may not the best ones to talk to at that point. So look for other friends and family who can handle your news better.
Sometimes, those people who did not want to hear about your diagnosis at first might feel ready to discuss this at a later date. So try to be open about talking about your NETs when they’re ready.
Talking in an open, sensitive manner about your condition to your children or grandchildren can be beneficial. Many young children can sense when there is a problem in the family. If they sense that something is not right but can not grasp why, they may start imagining the worst.
So have an honest conversation with children and teenagers using language they can understand. With very young children, you may want to use dolls or pictures to do this. Let them know about any changes in your health could mean for them in their everyday life. Their reactions and needs will vary depending on their age.
“It was very hard for me to speak to my children, to say, ‘I have cancer’, because I didn’t know a lot about this type of cancer.”
Read practical tips from others to help make your life with NETs easier
Patient support groups for NETs can often provide social and emotional support
Learn about carcinoid tumours, GI-NETs, pancreatic NETs and lung NETs, and the symptoms of NETs