Living with cancer: emotional support, palliative care, survivorship

A cancer diagnosis changes daily life for the person who has it and for their family. Alongside medical treatment, people often need emotional, practical and social support. This article explains common feelings, ways to find support, what palliative care is and what life after treatment can look like. It uses information from the US National Cancer Institute and the World Health Organization (WHO).

1. Introduction

Cancer care is more than tests and treatment. The National Cancer Institute's guidance on coping covers feelings, support groups, caregivers, talking with family, practical matters in daily life, and what to do after treatment ^[1]. The page says there are resources available to help you learn about your disease and the people who can help you.

2. Common feelings

The National Cancer Institute describes several feelings that many people have ^[2]:

• Fear and worry. Some fears are based on stories, rumours or wrong information. Most people feel better when they learn the facts, because they feel less afraid and know what to expect.
• Anger. It is common to feel angry at the cancer, at the care team or at healthy friends. Anger often comes from feelings that are hard to show, such as fear, frustration or helplessness. It is not healthy to keep it inside, so talk with family and friends, or ask your doctor to refer you to a counsellor.
• Sadness and depression. Sadness is a common response to any serious illness. Sometimes the feelings get stronger and get in the way of daily life, which may mean depression. Depression is a medical condition that can be treated. If you have signs such as lasting sadness, feeling hopeless, or changes in sleep or appetite for more than two weeks, talk with your doctor about treatment.
• Stress and anxiety. Stress during and after treatment is normal, and it can slow healing. Raise concerns about money, travel and work early with your care team. Signs of anxiety such as a racing heart or trouble sleeping should be checked by your doctor, in case a medicine or treatment is the cause. Meditation, relaxation exercises and stress-management classes can help.

You decide when and whether to talk about your cancer. Some people prefer to think or write about their feelings first, and others share with friends, family, other survivors, a counsellor or a faith community ^[2].

3. Finding support

Support groups. The National Cancer Institute describes support groups as meetings for people with cancer and anyone touched by the disease. Benefits include less isolation, a more hopeful outlook, a place to talk through feelings, help with practical issues such as work or school, and support in coping with treatment side effects ^[3]. Groups can be for all cancers or one type, or for particular ages or backgrounds, and some are for family members and caregivers ^[3].

Groups meet in person, online or by telephone. Online groups are available at any hour and suit people who cannot travel, but you should check privacy settings and confirm any medical information with your doctor, because some online groups are not monitored ^[3]. To find one, ask your care team or cancer centre, ask a hospital social worker, or talk to other patients ^[3].

Caregivers. Being a caregiver can be stressful, so carers also need to look after themselves while caring for others ^[1].

Practical help. Your hospital social worker or nurse can point you to resources, and the billing office can help with money questions ^[2]. Take a list of questions to each appointment ^[1].

4. Living with side effects and symptoms

Treatment can cause many side effects, including tiredness, pain, sleep problems, changes in appetite and weight, hair loss and effects on fertility and sexual health. They vary from person to person, even among people receiving the same treatment ^[6]. The National Cancer Institute advises telling your doctor about any side effect you have, because your health care team can treat them or talk with you about ways to reduce them ^[6].

5. Palliative care

Palliative care is care that relieves symptoms and suffering, and it supports patients and families. The WHO adds that palliative care can help people live more comfortably, and that it is particularly needed in places where many patients are at an advanced stage with little chance that treatment will get rid of the cancer ^[5]. The WHO says relief from physical, psychosocial and spiritual problems is possible for more than 90% of people with advanced cancer, and it strongly recommends better access to oral morphine, a strong pain medicine, for people with moderate to severe cancer pain ^[5]. Ask your care team whether a palliative or supportive care team can help you.

6. Life after treatment: survivorship

The National Cancer Institute explains that a person is a cancer survivor from the time of diagnosis for the rest of their life, whether they are living with cancer or free of it. The word can mean different things to different people, and some prefer other terms ^[4].

After treatment, the National Cancer Institute offers guidance on adjusting to physical and emotional changes, coping with the fear of the cancer coming back, and dealing with family problems that often follow treatment ^[4]. Treatment can also cause late effects, which are problems that may not appear for months or years after it ends ^[4]. Helpful steps include:

• asking your doctor for a follow-up care plan and a wellness plan ^{[1, 4]}
• keeping regular check-ups ^[1]
• eating well and exercising, which can help manage late effects ^[1]
• asking your team what questions to raise as treatment finishes ^[4]

People with advanced cancer are also living longer because of newer treatments, so guidance exists for coping with advanced cancer over the long term ^[4].

7. When to see a doctor

Talk to your doctor if low mood, hopelessness or changes in sleep or appetite last more than two weeks, or if anxiety symptoms such as a racing heart or trouble sleeping are troubling you ^[2]. Tell your team about any physical side effect ^[6]. Contact your cancer team if you are not sure who to ask, since social workers and nurses can guide you to help ^[2].

If you ever have thoughts of harming yourself or of suicide, seek help at once from a doctor or a trusted person near you. In the United States, call, text or chat 988 to reach the 988 Suicide and Crisis Lifeline, which the National Cancer Institute says has counsellors available 24 hours a day, 7 days a week ^[2]. In India, call Tele-MANAS, the free national mental health helpline, on the toll-free number 14416.

In an emergency, call your local emergency number (112 in India, 911 in the United States).

8. Conclusion

Living with cancer involves the whole person. Fear, anger and sadness are common, and support from family, other survivors, support groups, counsellors and palliative care teams can help. After treatment, follow-up care and attention to late effects and emotions remain important. Speak up early about what you need, and keep your doctors informed about every treatment you use.