When you are told that someone close to you has myeloma you may feel shocked, upset and worried because the future is now uncertain. You may feel that you need to put on a brave face and disguise your feelings, but there is no doubt that being honest about how you feel will help future communication between you and your loved one.
You will probably have a lot of questions - ask the healthcare team if you can talk to them about what to expect, call Myeloma Canada at 1-514-570-9769 or call the International Myeloma Foundation (IMF) Patient Hotline at 1-800-452-2873.
During treatment and recovery, patients will not be able to do as much as before. You may find you have to take on responsibilities or do things you rarely did before, as well as care for the patient. Don't let yourself be overwhelmed by all this - healthcare professionals, relatives and friends and many voluntary organizations are there to help you. Try to take people up on their offers of help: it will make them feel good because they are able to do something for you. The Finding Support section of this website contains the contact details of helpful organizations across Canada.
Your family doctor can be a useful source of information and support and there may be services, such as social workers, dietitians, psychologists and specialized nurses available in your cancer centre or health region. Ask about the availability of these supportive care services.
It can be very frustrating watching someone not eating properly, especially if you have spent a lot of time and effort carefully preparing a suitable meal. If a patient is experiencing severe side-effects they may not be able to eat some days but they will start to eat when they are ready. Try to gently encourage them to eat but don't push them. Have pre-prepared snacks to hand for times when the patient feels like eating. Fresh and dried fruit and nuts (unless the patient has diarrhea, when they should be avoided), soups, breakfast cereals, yoghurt, dips, sandwiches and raw vegetables are easy to store and prepare. Try not to take it personally if the patient doesn't eat the food you cook. It is unlikely to be a reflection on the quality of your cooking.
Although most of the attention from medical staff is focused on the patient, remember that you are an important part of the care team. You can ask questions about the things you want to know. Sometimes these are questions the patient might not want to ask (or know the answer to).
It may be difficult to ask some questions in front of the patient. These may be questions about what is likely to happen, or what plans to make. If the patient has given their permission, ask the doctor or nurse if it would be possible to speak to them without the patient present.
Sometimes the patient may want to ask the question but is reluctant to do so in case the answer worries you, the caregiver. Try to discuss things together before seeing the doctor or nurse so you know what you are going to ask. The patient may not always be happy for you to know things that they do not, but this is something you can discuss together. In some circumstances the patient can write a letter to their doctor stating that they give their permission for information to be passed to you, as their caregiver.
As a caregiver you will want to know how you can support the patient as they go through treatment.
• Will the patient require a stay in hospital and for how long?
• Will the patient need a lot of looking after?
• Will I need to take time off work?
• Is other help or support available?
• Who can I call if I am worried or in an emergency?
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Don't feel that you have to talk about everything immediately and remember that listening is as important as talking. Taking time to really listen to someone, without feeling you have to find solutions to any problems or worries can be very valuable.
The following are some examples of common thoughts which may stop you from having important conversations. Below each thought are some ways of dealing with them.
"I don't know what to say" Often there is no right or wrong thing to say. You don't need to have all the answers, simply listening to someone talk about their fears or worries can help ease them. Just letting the person know you care enough to listen is important.
"I don't want to open the floodgates" Often we feel a need to stay in control by avoiding upsetting or difficult subjects. But strong feelings are there anyway, and it may be that the patient needs an opportunity now and then to let go. Being there with a caring approach will help.
"I hate it when he/she goes all quiet" Don't be tempted to fill silences with needless chatter - the other person may want time to think. Remember, not all communication is verbal: holding hands or placing your hand on someone can say as much as you need to. If you feel someone is silent because they are upset you can gently ask them questions. For example "What are you thinking about?" may help to get them talking again. If you feel they would like to be alone ask "Would you like some time on your own now?".
Taking a break from caring can help you think things through, relieve stress and tiredness. Even taking a few hours off during the day and getting out of the house can make a huge difference to the way you feel and the amount of energy you have. Take advantage of times when the patient is away from home. It may help to invite friends over to keep the patient busy, if they are up to it.
It is easy to feel that you have to be positive all the time and hide negative feelings and anger from the patient and other family members. Thinking positively can help you face the challenges of myeloma but don't feel that you have to be upbeat all the time. Giving yourself a day off to feel sad does not mean that you have lost control or that you will not feel positive again.
If you feel things are getting on top of you, find a time to talk about these feelings, perhaps with your family doctor or the myeloma nurse specialist. Bottling them up can mean that you end up feeling guilty about your anger. Your feelings are not selfish or insignificant they are just as important as the patient's.
Remember you can not look after anyone else if you do not also look after yourself.
• Let other people help
• Learn about myeloma and its treatment
• Look after yourself - eat well, get enough sleep and visit your GP if you need to
• Take a day or a few hours off when you need to
• Ask your doctor about nurse visits at home
• Keeping a journal or diary can help you explore how you feel
Myeloma Canada is affiliated with the International Myeloma Foundation, the world's oldest and largest myeloma organization
Myeloma Canada gratefully acknowledges the generous unrestricted educational grants from our website sponsors: