SUPPORT CANADIANS LIVING WITH CANCER
Getting help from others
Throughout your cancer journey, you may need different types of help. You may need help with practical things such as getting to treatment, doing housework or yard work, cooking meals, taking care of children, walking the dog and so on. You may need someone to listen or offer support.
Many people find it hard to ask for and accept help of any kind. Although it may be hard, having help often makes it easier to cope with cancer. Remember that many people really want to help – people often don’t know what to do and helping out is one way to make them feel useful. Allowing others to help you is often a gift to both yourself and them.
You may find it useful to ask someone to be your “point person” who asks for and organizes help on your behalf. This person can create charts or lists and give people specific tasks on specific dates. They can update people on your condition and let them know good times to call or visit.
There may be times when you don’t have the support you need. If that’s the case, talk to someone on your healthcare team or at local volunteer agencies to learn more about support services. This may include talking to people with similar experiences or getting help from staff at the treatment centre.
Family, friends and sometimes co-workers can be very supportive and helpful. Some will know exactly what to do and say without being asked. Others might not be sure how to help. When someone says, “Let me know if there is anything I can do,” tell them exactly what you need help with.
Many people want to help but they don’t know what you need or how to help. Take the first step by starting the conversation with family, friends and co-workers. Be clear about what you need. Don’t assume people will help without knowing what they can do. Make a list of things that need to be done and ask people to help.
Listening is sometimes the most important thing that others can do. You can take the lead in talking if possible. Some people may not know what to say or avoid talking about cancer because they’re worried that it may upset you. If you feel like talking about your cancer, bring it up and let them know it’s okay to talk. It’s also okay to let people know when you don’t want to talk about cancer.
Some examples of things you may ask people to help with include:
- Provide childcare.
- Help with household chores like cooking, cleaning, shopping and yard work.
- Water your plants, take in your mail or take care of your pets.
- Talk to and share feelings.
- Drive you to medical appointments or treatments.
- Drive a child to or from school or other activities.
- Pick up a prescription.
- Look up information you may need.
- Be the contact person and help keep others updated on your condition.
When you’re not getting the help you need
Some friends and family members may not offer you the support you expect as it may be too difficult for them for one reason or another. Some common reasons are:
- They may not know how to act around you or worry that they will say or do the wrong thing.
- They may avoid mentioning your cancer if they’re afraid of upsetting you.
- They may think you don’t feel like talking or visiting.
- They may be coping with their own problems or may not have enough time.
- They may be afraid of cancer or have had a bad experience with cancer.
- They may not realize how hard things are for you or don’t think you need help if you don’t ask.
- They may feel awkward and not know how to show you they care.
- They may believe that it is better to keep a distance.
If people aren’t giving you the help you need, you may want to talk to them, tell the person how you feel and explain what you need. Or you can just let it go.
It may be necessary to put your friends and family at ease and talk openly about your cancer. It may help to:
- Let people know they can speak openly and directly with you about your cancer.
- Tell them to keep calling you, even if you don’t always feel like talking. They may keep in touch through texting, instant messaging, email, letters or phone calls.
- Tell them that sometimes all you need is for them to listen.
- Remind people that although you look different on the outside, you are the same person.
Your friendships will likely change with your cancer diagnosis but most changes will be positive. It’s important to focus on friends, family and co-workers who are able to support and listen to you.
It can be comforting to spend time with others who are going through or who have gone through some of the same things you are. You can often talk to these people about things you can’t discuss with anyone else. Someone who has had cancer can:
- understand how you feel
- talk about what to expect
- tell you how they coped
- help you learn ways to enjoy each day
- give hope for the future
Organized support programs
Organized support groups or programs that allow you to meet and talk to others with similar experiences may be offered through the hospital or treatment centre, your doctor’s office or other organizations. You can find out more about support programs by asking your healthcare team.
Support programs come in different formats to suit a person’s needs:
- one-to-one support by phone or in person
- If you don’t find it easy to talk in a group setting, one-to-one support may be the best option for you.
- group-based support
- Some groups are open to everyone. Others are for certain people, like women with breast cancer, men with prostate cancer, teenagers or caregivers.
- Some groups talk about all aspects of cancer. Others focus on specific topics, such as self-esteem or grieving.
- Therapy groups (often led by mental health professionals) can help with learning certain coping skills, such as managing fears or dealing with communication problems.
- Sometimes people with cancer meet in one support group and their loved ones meet in another. This way, people can talk freely without worrying about hurting someone’s feelings. In other groups, patients and families meet together. These groups can be a good way to learn what everyone is going through.
- online support
- Support can take place through chat rooms or moderated discussion groups. People in these groups can message each other online or talk by email. You may like online support groups because you can take part in them any time of the day or night. They are also good if you can’t travel to meetings.
Don’t forget that everyone’s medical situation is different. Talk to your healthcare team about information that is shared in a support program and whether it applies to you.
You may find it helpful to talk to staff at the treatment centre. There are many different healthcare professionals that can provide counselling including psychologists, psychiatrists and social workers. Chaplains or spiritual care providers at treatment centres can also provide counselling.
Mental health or psychosocial oncology professionals
Psychosocial oncology professionals are trained to listen and to help people deal with their cancer situation. In most cases, these professionals will see you or your family members at any time during your cancer experience, including after treatment. Don’t worry if you aren’t sure about how counselling might help or even exactly what it is you want help with. They are used to this and can help you:
- learn ways to cope with your cancer diagnosis and feel less overwhelmed and more in control
- explore the meaning of your cancer experience
- find and understand information about your cancer
- talk through important decisions
- manage difficult emotions such as fear, anger, guilt, anxiety and depression
- manage symptoms and side effects such as pain and fatigue
- communicate effectively with the healthcare team
- take care of any relationship issues or family problems that are causing stress
- explore and resolve any issues with self-esteem, body image or sexuality
- talk about concerns you may have after finishing treatment
Counselling usually involves:
- talking about where you are in the cancer experience
- telling how it is affecting you and your loved ones
- sharing the issues or concerns you want help with
- coming up with a plan of action to deal with concerns
In addition to providing support through counselling, social workers can help you with practical needs. A social worker can refer you to support groups, financial assistance and other resources. Ask to speak with the social worker at the hospital or treatment centre if you:
- need help at home, such as homecare or special equipment
- need advice on how to talk about cancer with an employer
- need help filling out forms or applications
- need help with money problems because of cancer
- need information about health insurance
- need help getting rides to the doctor’s office, hospital or treatment centre
Patient or client advocates can help you if you have a problem or concern about your care that you don’t want to discuss with your doctor, nurse or social worker. They can act as a go-between with the healthcare team.
Discharge planners work with you and your family as you get ready to leave the hospital. They can help with tasks like making follow-up appointments and making sure you have the equipment or care you will need at home.
Patient or nurse navigators can help you find your way through the healthcare system. They can speak on your behalf, make sure your questions are answered and help you find the resources you need.
Volunteers often visit patients in the hospital and offer comfort and support. They may bring books, puzzles or other things to do. Some volunteers have also had cancer and may be willing to share their experiences with you.
Spiritual care workers, clergy members or chaplains
Spiritual care workers, clergy members or chaplains can be very helpful for discussing spiritual issues or concerns. They can help you with any doubts and beliefs and help you find peace of mind. Don’t worry if you haven’t been going to religious services regularly or aren’t sure what you believe. Although they come from specific faiths, they are trained to provide support to people with traditions different from their own.
Together we can reduce the burden of cancer
Last year, we only had the resources available to fund 40% of high-priority research projects. Imagine the impact we could have if we were able to fund 100%.