Dealing with practical aspects of being a supporter
It may not be possible to do everything you want to do. You may need to manage your time.
- Decide which of your weekly tasks and activities you should do first.
- Use a personal planner/diary to keep track of information and appointments.
- Concentrate on one task at a time (for example, making dinner).
- Avoid lots of shopping trips (for example, do one large shop rather than going daily).
- Ask for help from family, friends/whānau or support services. Someone else might be able to make dinner or drive the person with cancer to treatment. Asking for help is not a sign of failure and it may relieve some pressure.
You may want to do all that is possible to help, especially at first. If the condition of the person with cancer changes over time, you may have to take on more tasks. Some partners or supporters say they feel as though they have failed if they can’t manage all the responsibilities of caring by themselves. Others worry that asking for help will be seen as a sign that they are not coping, and their role will be taken away. You may feel that everything should be provided by the family and that outside help is not necessary. But by asking for help you may be surprised by how useful their support is.
Write a list of simple things people can help you with (for example, taking the kids out, shopping or collecting a prescription).
“At first I didn’t ask for help, because I didn’t want to bother anyone. I see caring as my duty; I have to do it. I now realise people genuinely want to help. They need my help to show them how.” - Karen
As a partner or supporter, you’re part of a healthcare team made up of doctors, nurses and other health professionals who specialises in treating cancer. In some treatment centres these health professionals work together closely – this is often referred to as a multidisciplinary team.
The team will talk about the needs of the person with cancer and plan the best treatment for them. They may also refer the person to other health professionals who can also help to support them through their treatment. Your family doctor/GP will also be kept up to date. You may not be used to dealing with health professionals.
You may feel overwhelmed with all the new and detailed information. It can be scary to go to a new clinic or treatment centre. Having one contact person in the multidisciplinary team (such as a nurse) can make it easier to understand what’s happening.
“Sometimes my extended family members would criticise and add further to the load. It was helpful for me to focus on the advice of the healthcare team.” - Sharon
- Find out who you can contact when you have questions and/or concerns about the person with cancer.
- Have a list of important phone numbers in an easy-to-find place.
This list could include:
- your GP
- the community nurse
- the hospital appointment office (the person who arranges your hospital appointment)
- an after-hours emergency phone number
- a social worker
- a nurse specialist
- a cancer treatment centre
- the Cancer Information Helpline 0800 CANCER (226 237).
- Make sure you have the phone numbers for people to contact in an emergency in an easy-to-find place. (You could write your phone numbers into the box on the inside cover of this booklet and keep it near the phone.)
- If you are handing care over to someone else, show them this list of contacts.
Working with health professionals when you are caring for someone with cancer may vary some people have good experiences, while others may feel that their role is not acknowledged. If you feel you aren’t being recognised as a supporter, talk to the healthcare team about your role. For example, some young supporters are not included in important conversations because the health professionals believe that the person is too young to be in the supporting role. It’s important that any conversation about the person with cancer happens with their consent.
At times, you may be worried about the person with cancer and how to look after them. You may feel uncomfortable about asking the health professionals questions or that you are not being kept up to date with what is going on.
Professionals will only share information with relatives or a person chosen by the person with cancer. If the person with cancer would like the health professionals involved in their care to share information with you, they should let them know as early as possible.
Before the visit, together:
- write down any questions you may both have so you can discuss them at the appointment
- list all the drugs being taken, the dose, and any side effects the person with cancer may be having
- write down any change in the person with cancer’s condition.
During the visit it can be helpful to:
- take notes during the discussion with the doctor
- write down any instructions
- check that you’ve understood what the doctor has said
- ask the doctor if they can give you printed information or tell you where to find further information
- refer to your GP if you would like a summary of the patient’s notes. The patient will need to give their consent for this to happen.
After the visit it can be helpful to:
- read your notes
- write down when your next appointment is
- contact the GP or hospital about changes in the person with cancer’s condition with their consent
- have a list of the many different health professionals involved, their roles and their phone numbers.
The person with cancer may be taking prescription medications (from the doctor) and over-the-counter medications from the chemist (for example vitamins or supplements). Keep a list of all of these drugs, their purpose, dose, when to take them and any side effects. This will help the person with cancer take them safely. It can also save time and confusion when seeing health professionals.
Keep the medication in its original packaging so you always know what type of drug it is. It is important to know the following information about the medications:
- How should it be given (with food, without food, by mouth)?
- Is there anything, such as alcohol, that should be avoided while taking the medication?
- Does the medication interact with other drugs or vitamin supplements?
- Are there any possible side effects?
- What should be done if the person experiences side effects?
- How long will the medicine be needed?
- What should the person do if a dose is missed?
- When is the use-by date?
Oral chemotherapy is any drug you take by mouth to treat cancer. This is a treatment that is taken at home. Chemotherapy taken by mouth is as strong as other forms of chemotherapy and works just as well. Oral chemotherapy has the same side effects as chemotherapy given in the hospital. When taking oral chemotherapy at home, the person with cancer will have been given clear instructions from their doctor on when and how to take it. As a supporter of someone with cancer it is important to know how to handle this medication safely.
Instructions are likely to include:
- how much and when to take the oral chemotherapy
- how to store and handle the chemotherapy drugs. Gloves should be used by supporters who handle the drugs
- that oral chemotherapy drugs must be kept in the container or wrapper they come in and must not be put in a pillbox
- unused doses need to be taken back to the hospital pharmacy for safe disposal
- that if the person with cancer cannot keep the drug down (because of vomiting) the hospital needs to be contacted
- that oral chemotherapy drugs should be taken with a large glass of water (not orange juice)
- that chemotherapy drugs should not to be crushed or cut in half
- that if a dose is missed (more than 2 hours later than usually taken) the person with cancer should not take double the dose the next time. Contact your cancer doctor or nurse if you are unsure
- that a missed dose should not be taken at the end of treatment
- keeping tablets away from children; store them out of reach.
If the person with cancer is in pain, they may become irritable, have trouble sleeping and find it hard to move around. In most cases, pain can be controlled throughout treatment with medications or other techniques. Talk to your cancer doctor or nurse if the person with cancer is experiencing pain.
- Use a pain scale, such as 1 to 10 where 1 = no pain and 10 = severe pain. This will help you understand the intensity of the person with cancer’s pain (how painful it is) and the need for extra doses of pain medication.
- Keep a diary of the person with cancer’s pain levels, symptoms and extra doses of pain medication.
- Let the healthcare team know how the medication has been working and notify them of any changes.
- You may be concerned that the person with cancer is becoming addicted to their pain medication. However, the medication works on the pain, not the brain. Addiction is not an issue for people with cancer. Pain medication helps them stay as comfortable as possible.
- Talk to their cancer nurse about other ways of managing pain (for example, hot water bottles, ice packs or gentle massage).
When the person with cancer is having treatment you may notice their appetite changes. Steroids can make you very hungry whereas chemotherapy can often change the way food tastes or can make you feel sick, so food is not enjoyed as it was before treatment.
Treatments such as chemotherapy and radiation treatment damage and kill cancer cells but also affect healthy cells.
This may cause side effects such as:
- loss of appetite
- nausea (feeling sick)
- fatigue and tiredness
- mouth or throat sores
- taste changes
- constipation or diarrhoea.
If the person with cancer refuses food you have prepared, try not to take it personally; they are unwell and the treatment has changed their taste and appetite. Feeling sick and not enjoying food can last for months after treatment has finished. You may worry because you want the person with cancer to eat well so they can cope with the side effects from the treatment and recover quickly. However, it’s not necessary to follow a strict eating plan.
A dietitian, doctor or nurse can provide advice on good food and drink to have during treatment. The Cancer Society has a booklet titled Eating Well During Cancer Treatment. You can get a copy at your local Cancer Society, by phoning the Cancer Information Helpline 0800 CANCER (226 237) or you can read it online on our website.
- Cook extra food and freeze it for another day.
- If the person with cancer was the main cook, ask them for recipes.
- Have meals when you can sit together and talk.
- If the person with cancer is losing weight, talk to your doctor, dietitian or pharmacist.
- Take extra care when preparing food because cancer and its treatment weaken the body’s immune system.
- Always wash your hands before preparing food and take special care when handling raw meat, fish, chicken and salads.
- Store ready-made supermarket meals in the freezer.
- If the person with cancer is feeling sick due to radiation treatment or chemotherapy, ask the healthcare team if they can prescribe medication to help stop this.
- Offer the person with cancer their favourite foods often.
- The person with cancer may find regular small meals easier to manage than three large meals.
Supporting someone with cancer can be a difficult time financially. There may be a drop in your household income if you or your partner have reduced work hours or stopped working. There may also be new expenses, such as childcare, transport, medication and equipment.
You may be able to get help with financial issues, such as budgeting advice, managing your mortgage and other expenses. You can talk to the hospital social worker about financial or practical assistance available. You may be eligible for financial assistance from Work and Income, volunteer organisations or church groups. It can help to talk to your bank early if you need to rearrange any finances.
You may be eligible for travel and accommodation expenses if you live a long way from the treatment centre. See the social worker about this.
Paperwork can pile up. You may have to keep track of bills, receipts and letters from health professionals. It’s easier if you have them all in one place such as a folder, expanding file, a shoe box or a folder on your computer.
It’s up to you whether you say anything about your situation to people at work. However, they are unlikely to give you the support and understanding you need if they don’t know what’s happening.
It may be a good idea to find out about your employer’s policy around supporting someone with an illness. You can do this by checking your contract, talking with Human Resources at your workplace or your manager.
Check with your employer whether they have an Employee Assistance Programme (EAP). EAP is confidential counselling and support service provided by your workplace.
For more information you may like to read the Cancer Society’s Information Sheet Managing Cancer in the Workplace. You can get a copy of this at your local Cancer Society or by phoning the Cancer Information Helpline 0800 CANCER (226 237). You can also read it on the Society’s website (www.cancernz.org.nz).
Living away from the person with cancer can be difficult. You may feel guilty for not being closer, and you may feel you are the last one to know about treatment and care. This can be frustrating when you want to stay involved. However, there are many things you can offer to do for the person with cancer.
- Use email, blogging, text messaging and video conferencing (for example, with Skype) to stay in touch.
- If cost is a concern, look at other telephone plans (using a landline and/or cellphone).
The person with cancer may appoint you as their Enduring Power of Attorney while they are undergoing treatment. This gives you power to act on their behalf on all financial matters, and it will also enable you to do things such as pay bills and manage bank accounts.
An Enduring Power of Attorney differs from a Power of Attorney because it means you can act on behalf of the person you care for even if they cannot make their own decisions.
Consult a lawyer or the Public Trust for more details about this and advice about how to make legal arrangements.
Advance care planning or (ACP) is a process of thinking about, talking about and planning your future care. ACP gives everyone a chance to say what’s important to them. It helps people understand what the future might hold and to say what treatment they would and would not want.
It helps people, their families and their healthcare teams plan for future and end of life care. For more information about advance care planning, visit this New Zealand site: http://www.advancecareplanning.org.nz/