Caring for Someone with Cancer

Cancer is a diagnosis that no one wants to hear, either for ourselves or for a loved one. Cancer is life changing, not only for the person being diagnosed but for their family, friends and colleagues. Cancer can also turn a loved one into a carer overnight, and this transition can be challenging and emotionally taxing. If someone close to you has recently been diagnosed with cancer, here is some advice for how to care for them whilst still taking care of yourself.

What Is Cancer?

The human body is made up of building blocks called cells, which are constantly regenerated and replaced. New cells are made to help the body grow, regenerate, and heal from illness or injury. Cancer can begin to grow when a cell is divided incorrectly, causing it to become abnormal. This abnormal cell then replicates itself, leading to a cluster of irregular cells bound together in a tumour. Some tumours are benign, meaning they are not cancerous and do not spread to other parts of the body, posing little risk to overall health. Malignant tumours are cancerous, as they can spread to other areas of the body and cause the disease to spread. 

Cancer can affect anyone, and being diagnosed with cancer does not mean that you have done anything wrong. However, certain risk factors can increase the chances of someone receiving a cancer diagnosis. These include smoking tobacco, drinking too much alcohol, excessive or unprotected sun exposure, family history or genetic predisposition, and some lifestyle factors like lack of exercise or exposure to some chemicals or viruses. Age is also associated with an increased risk of cancer, with half of all cancer diagnoses occurring in people over the age of 75.

Cancers’ Impact on the Health of Australians

Cancer is a leading cause of ill health and premature death in Australia. There were approximately 150,000 new cases of cancer causing almost 50,000 deaths across the country in 2020. There are many different types of cancer, and some are more life threatening or severe than others. Thanks to medical advancements, survival rates for all cancers have improved significantly in recent decades. Today, some cancers have a survival rate as high as 90%, compared with 50% in the 1980s. Despite these promising trends, cancer can severely impact a person’s quality of life and their overall sense of wellbeing.

In some cases, a person living with cancer will need to rely on their friends, family, and other support networks to help them get through the challenges of managing their condition. This is where the vitally important role of caregivers comes in.

Your Role as a Carer

If you provide unpaid care or support to a person living with disabilities or an illness, including any type of cancer, you are a carer. The extent to which your loved one’s cancer affects their ability to live their daily life independently will impact what type of care you will provide. Carers often help with providing emotional care and support, medical assistance, communication with medical teams, financial advisors and insurers, and helping out with daily activities like shopping, transport or cleaning. 

Some people become carers for a loved one gradually over a period of time, whilst others might become carers overnight in cases where a diagnosis is sudden or the illness has progressed rapidly. It can be a big adjustment emotionally for both you and the person you care for, as you both navigate the implications of the illness on your lives and your relationship. It is important to be gentle on yourself as you adjust to the news of the diagnosis and your new role as a caregiver, and seek support when and if you need it. Resources like those offered by the Cancer Council can be incredibly helpful to carers, providing information about your loved one’s condition or offering a safe place to connect to other carers. You cannot effectively look after someone else if you are not taking care of yourself. 

What Do Carers of People With Cancer Do?

Learning to become a carer can be challenging, but also very rewarding. It can bring you and your loved one even closer than before, and equip you with a range of new skills. The types of support you provide will depend on the unique circumstances, diagnosis, skills and needs of your loved one. Your support may include:

Medical care

This may mean advocating for your loved one in medical settings, helping to navigate care systems such as Medicare, managing medication, helping with keeping appointments and monitoring and reporting symptoms or treatment side effects.

Practical support

Living with cancer can make everyday activities difficult. You may help your loved one with keeping a clean, safe and comfortable home, help with caring for pets or children, providing transport, helping with meal preparation and supporting personal care like bathing or dressing. 

Financial assistance

Cancer can affect your ability to work, and can also require costly treatments. Helping connect your loved one with professional financial advice and supporting end of life plans such as preparing a will is an important way of making sure these financial matters are taken care of ahead of time. 

Emotional support

Living with a cancer diagnosis can take a huge emotional toll. Providing comfort, reassurance and a non-judgemental companion and listener can be a huge help to someone living with cancer. You can support your loved one by helping communicate with others about their condition, or by taking their mind off it for a while and talking about other things or doing activities that you enjoy together. 

The Emotional Rollercoaster of Caring for Someone With Cancer

Adjusting to the news that someone dear to you has cancer is not easy. The emotions brought on by a cancer diagnosis are significant, both for the person being diagnosed and their family, friends and caregivers. Carers and people diagnosed with cancers feel very similar emotions of fear, frustration and grief, and some research suggests that carers experience even higher levels of distress than the person they care for. Remember that any feelings you have about your caring role and the health of your loved one are normal, and that you need to continue looking after yourself alongside your caring duties. Everyone will react to a cancer diagnosis differently, however common emotions experienced include:

Anxiety and Fear About the Long-Term Health of Your Loved One

You may also worry about the impact of caring on other parts of your life, or feel overwhelmed at the information regarding treatment. Take on as much information as feels right to you, and don’t hesitate to reach out for support if you are struggling.

Stress and Burnout

Caregiving can be demanding, and you may worry about your ability to effectively care for your loved one. Caregiver stress is serious, so it is important to build a support network around you to manage it. 

Frustration About the Situation

This includes the difficulties of managing treatment, the complexity of healthcare systems, and the difficulty of managing your caring role with other demands in your life. 

Guilt

Some carers feel guilty about experiencing frustration, needing a break from caring, or for being well when their loved one is not. Carers may also experience guilt if they feel they are not able to provide a high enough level of care, or because they cannot make the person they care for better.

Loss, Grief and Loneliness

Caring for a person with cancer can be isolating, as it can take up a lot of time that you used to have to do other things. It can also impact on your social life and make you feel a sense of loss for your life before you became a carer. You may also be grieving the health of the person you love, and feel a sense of loss on their behalf. 

Fulfilment and Satisfaction

Caring is not easy, but it does have the potential to help you grow as a person, become closer to your loved one, and discover strengths you didn’t know you had. Even if the day-to-day reality of caring is difficult, many carers experience a sense of gratitude that they are able to improve quality of life for their loved one.

Caring for Yourself

The emotions and challenges you face in your caring role are natural and expected, however that doesn’t mean you need to handle it all alone. If your role as a carer is impacting your physical, emotional or mental health, or interfering with other areas of your life, reach out for help. Speaking to a counsellor may be a useful way to develop some coping strategies, or you may like to contact the free Carer Gateway Counselling service for support. Support groups for yourself or the person with cancer can also help build a stronger support network, so that the emotional support is not all up to you. The Cancer Council can also help by connecting you with a professional cancer nurse for advice and guidance, or you may simply need a break in the form of some respite care so you can rest and recharge. 

Homage can also help by offering expert, high quality and compassionate cancer care in the home. Taking a break, assured by the knowledge that your loved one is in great hands, can be a huge relief, and allow you to come back to your caring role with more energy and compassion. Avoiding carer burnout is important for your own wellbeing, and that of the person you care for. 

Becoming a carer for a person with cancer can also change your relationships. For some, it will bring them closer than ever and build a greater sense of mutual support, trust and love. However, it can also add tension or highlight existing issues in the relationship that existed before the cancer diagnosis. Carers may struggle with the additional responsibilities they now face, or feel like they can no longer have their own needs or struggles in light of the health issues of their loved one. People living with cancer may also struggle with feeling like they have lost their independence, which can affect their mood, self-esteem and enjoyment of their usual activities. Talking about how your loved one’s health and your caring role is impacting your relationship is important, but be sure to do so openly, respectfully and with kindness for your loved one and yourself. Seeing a counsellor with the person you care for may be helpful in facilitating constructive discussion and coming to an agreement for how to manage changes to your relationship as a result of your caring role. 

Caring for Someone With Advanced Cancer

Advanced cancer usually means that the cancer has progressed to a stage where it is unlikely to be cured, however it can still be managed. Realising that the person may not fully recover can renew your feelings of stress, fear and grief, and bring about a suite of new things you need to consider as a caregiver. Receiving the news that your loved one’s cancer has advanced can be overwhelming, and it is important to seek support for yourself so that you are able to continue caring to the best of your ability. Additional things to consider when caring for someone with advanced cancer can include:

Discussing Prognosis

Realising that the cancer can’t be cured brings up the difficult topic of life expectancy or prognosis. Some people with advanced cancer will want to know how long they may have to live, whilst others will not. It is important to respect this very personal decision. However, if you want to have some idea to help you plan for the future, ask the person you care for if you have their permission to speak to their care team yourself. There is no right or wrong way to handle this very difficult discussion, so be kind to yourself and reach out for help if you need it.

Palliative Care

Palliative care aims to ensure your loved one is as comfortable and fulfilled as possible. Palliative care doesn’t only happen towards the end of life, however it may become a more important part of your caring role in later stages of your loved one’s cancer. Homage’s team of expert nurses and carers are ready to support you with this stage of care if you need it, by providing expert palliative care from the comfort of your home.

Advanced Care Planning

Discussing your loved one’s preferences and values regarding treatment in the late stages of their cancer should happen as early as possible. However, sometimes a person may change their mind once they learn that their cancer is advanced. They may also make decisions about legal and financial arrangements for the future. If you feel overwhelmed or unsure of how to support these decisions, you can reach out to the Cancer Council’s Legal Referral Service to access legal advice and support.

Life After Caring

Once the person you were caring for no longer requires your assistance, you will go through another transitional period with its own emotional challenges. If your loved one recovers or enters remission, you will likely feel overwhelmed with relief and joy, or you may feel exhausted, burnt out, or numb. These are all normal, and you will need to continue taking care of yourself gently during this time.

Unfortunately, some carers will also need to navigate the terrible loss of the person they care for passing away as a result of their cancer. Losing your loved one will likely bring a wide range of emotions, or you may initially feel numb or in shock. It is common to experience emotions such as relief that your loved one is no longer suffering, or guilt for your sense of relief of no longer being a carer. Loss and sadness are also very normal emotions during this time, as are anxiety about the future or frustration that your loved one could not recover. Connecting with other carers who have had similar experiences can be a great way to support yourself through this difficult time, and build a supportive network of people who understand your feelings. 

Caring for a loved one with cancer is a life changing experience, and you may never feel the same as you did before the diagnosis. However, keep in mind that your love, support and care is invaluable for the person living with cancer, and that you are doing an incredible thing for your loved one. No matter what happens along the way, know that you have made a huge positive impact on the person you care for. 

Do You Need Help?

If your loved one’s cancer diagnosis, or the idea of becoming a carer is becoming too overwhelming, do not wait to reach out for help. Reach out to a counsellor, or call Lifeline on 13 11 14 as soon as you think you are in need of support. It is never too early or too late to ask for help.