“I had a struggle to find out if the recommended medication was available in the country”
When supporting your loved one during diagnosis and treatment, you may find it difficult to navigate the complexity of the health care system. You may have to become the advocate of the person with cancer so that he/she can access the right information and treatment. Do not hesitate to contact patients’ organisations in your country. They are a great source of information and may help you or guide you to relevant knowledge.
“I had a struggle to find out if the recommended medication was available in the country”
An increasing number of patients receive their treatment at home rather than staying in the hospital. In many cases, at-home treatment relies on the availability and capacity of the relatives to play an active role. A range of concrete tasks may be involved: including personal care tasks, insuring adherence to treatment (make sure the person takes their medicine, goes to medical appointments…), coordinating health interventions (making appointments, communicating
with health professionals…), completing medical tasks as part of the curative or palliative treatment, helping to manage the side-effects of certain aggressive treatments, contributing to the well-being of the person,… These tasks may be quite technical and may be tiring over the long term. Besides, for some the treatment can be very complex, especially when cancer is associated with other diseases.
Taking an active role in at-home treatment therefore is an important decision. Make sure you have a clear understanding of the tasks it will involve, and that you have the capacity to handle these. Ask for detailed information and training from health professionals on how to manage these tasks safely and effectively. Useful training videos and booklets may be available. Don’t take on too much yourself. Find out what help is available from health and care services, to ensure you and your loved one are getting any statutory support you are entitled to.
The person you are taking care of might experience a range of side effects during cancer treatment, notably extreme tiredness, hair loss, mouth problems, eating problems, pain. Some people with cancer may not want to speak about their pain as they think it won’t help. But there are usually ways of managing it, and the earlier the pain is treated, the more effective treatment usually is. You may help the person you care for by monitoring the side effects and pain, and then asking health professionals how to cope with them.
During cancer treatment, many people may experience eating problems (mouth and throat problems, too tired to cook or eat, bowel changes that affect one’s diet, feeling sick, heartburn and indigestion, changes to one’s appetite, taste or smell…). Besides negatively affecting a cancer patient’s quality of life both during and after treatment, these problems may cause weight loss, which may negatively impact the efficiency of the treatment.
Ask for advice from health professionals, including specialised nutritionists if necessary, on how to ensure balanced nutrition for the person you care for.
Nutritionist
A journey through cancer entails making a series of difficult choices, notably regarding treatment options and arrangements. While the persons with cancer and their relatives can often feel they have no control over the situation, the possibility to make informed choices can help regain a bit of control. You may help the person you care for make informed choices by discussing with him/her, finding information and advice, seeking a second medical opinion… Importantly, you may help him/her assess and describe what is important for maintaining his/her quality of life. Cancer and other health problems may affect one’s capacity to express himself and make choices, in which case you may need to seek guidance or legal advice.
Some decisions may be overly difficult. Make sure you do not impose your views on the person you are taking care of. If ever tensions arise in the family about decisions regarding treatment, do not hesitate to seek external support and counselling. Cancer charities and support organisations often have advice on Advance Care Planning and other tools to help carers make decisions and plan ahead.
Advance Care Planning
Some people are offered the chance to be part of a clinical trial, as part of their treatment. Doctors use trials to improve cancer treatment and care.
There are benefits and risks to taking part in a clinical trial. During and after the trial the person treated with cancer will be followed up carefully. This means he/she may need to have regular tests. For some people this is reassuring. Others would prefer not to have more hospital visits and not take part in the trial.
There is no right or wrong decision about taking part in a trial. You may help the person you care for to make this decision by discussing with him/her or writing down a list of the pros and cons.
Clinical trials
As the informal carer of a person with cancer, you are part of the health and care team. It is important you establish good communication with health and care professionals so that you can get the information, you and the person you care for need. Asking questions can make it easier to cope during diagnosis and treatment. Knowing what is happening can make you feel more in control of your caring role.
You probably have lots of questions. It can help to be prepared by writing down a list of questions to ask. Don’t worry about having to ask all your questions at once. You will have other chances to ask them. It’s also okay to ask the same question again. The most important thing is that you understand what the doctor is telling you. It may be helpful to be with the person with cancer when she/he talks to healthcare professionals and take notes or record the conversation while the healthcare professional talks.
“Cancer is over medicalised. Sometimes we forget about humanity and our relationship with the person with cancer, independent from the disease.”
Care for people with cancer is often provided by close relatives (spouses or children). The treatment may potentially impact the personality of the person with cancer and strain both relationships and the family dynamic. Even if it seems difficult, safeguarding quality time with your relative living with cancer, and sharing positive moments can help maintain a good relationship. If you think that your relationship is being impacted overly negatively, do not hesitate to seek counselling and support.
“Humour is a strong medicine and despite having a seriously ill person in front of you, still let her keep smiling with you.”
Cancer might challenge intimacy with your partner. Do not feel embarrassed or be afraid to ask questions to healthcare professionals about how to cope with these difficulties. Any healthcare professionals you speak to will have already spoken to lots of other people experiencing these issues. They are there to help, and it’s very likely they’ve helped other people in similar situations.
Breast Cancer Units
It is recommended at EU level that hospitals develop specialised Breast Cancer Units, equipped with multidisciplinary teams. These units should be considered first when choosing where to get cancer care.
Professional support
The physical implications of the treatment, which entails the loss of feminine attributes (hair, breast in some cases…), mood swings due to some oncological medicine, might also represent a challenge to the relationship. Professional support may be required.
Personalised support
For men with breast cancer, the information and generally available help may seem less appropriate. Don’t hesitate to seek personalised support.
Depending on the stage of the disease and the health insurance of the person you care for, cancer can be costly, especially at an advanced stage and when associated with other diseases. Besides, the person you care for or yourself may have to reduce their working time, hence the income from work may decrease at well. In addition, health care expenses may only be partially covered, and the cost for medicine or therapies that are meant to improve the comfort of the patient may not be reimbursed. Additional costs such as child or elderly care or home care may also be required, in the case when the person with cancer is not in a position to manage family responsibilities as they used to do. Money worries can put a strain on the person with cancer and the carer, negatively impacting the quality of life for both.
In these circumstances it is important to plan ahead, and seek information about possible financial support or advice on budget management from public authorities, welfare agencies, insurances, employers and cancer organisations. Make sure you have considered all other options before borrowing money.
More and more people with cancer recover from it after a period of treatment, which is a relief. However, they may still require support within the post-treatment period. The treatment may have a long-lasting impact on the body and mind of the person treated, and it is important that the general practitioner is aware of the treatment received and is able to help with these potential side effects. Also, the fear of recurrence may strongly impact the daily life of the person who was treated for cancer, as well as yours. The patient may also feel abandoned by the health service as often the care and support stop when the person with cancer is declared cancer free. Carers can experience this too.
Reintegrating normal activities (work, study, leisure…) may be challenging for the person, who may be fatigued, and find it difficult to adapt. Time as well as continuous medical and psychological support may be needed before returning back to normal life again.
Care and support
“Quite a few breast cancer survivors have difficulty in coming to terms with losing their breasts.”
For women, the case of breast loss during the treatment can cause a psychological burden, and difficulties in their emotional and sexual life.
After breast cancer, some women lack the self-confidence to be their ‘old-self’ again, back at work. This requires understanding employers and colleagues. In many cases, professional support can prove helpful.
“I had to start from scratch, step by step. I decided to focus on the things I can do and wanted to do that give me energy. It started with doing things with friends.”
Whether your loved one has overcome cancer or not, a caring spell is generally a difficult and life changing experience. It is normal to feel extremely tired, or even a bit unwell when you stop caring. Often people keep going while they are needed as a carer and the full impact only hits them when they stop. Some carers express the need to reorganise their life and their priorities. You may also have difficulties coping with bereavement, if the person you cared for passes away.
If you’ve left work to take care of your loved one, it may be difficult to get back into employment. It is important to realise that, even if your caring experience is not officially recognised, you have been developing skills which are generally valued by employers (para-medical skills, ability to coordinate and communicate with health professionals, time and budget management….). An employment counsellor might help you valorise your experience on the labour market – (see also section on Work and Care).
It might be that the cancer of the person your care for is not or no longer responsive to treatments that aim to cure and control cancer, and that palliative care is proposed. Though it is recommended that there is continuity of care, this situation may imply a change of health care team you are in contact with.
In case the person is approaching the end of their life, don’t hesitate to ask for more precise information from health professionals, in particular oncology nurses and your general practitioner about what is going to happen. If the person you care for is treated at home, make sure you have all the information and help you need to help with the treatment and pain management.
“The hardest part was losing him twice: first emotionally as his personality changed due to the side effects of his treatment and later on physically, when he died.”
“We don’t know death any more, and we don’t accept it anymore either.”
Though it can be very satisfactory to accompany a loved one until the end of life, looking after someone who is dying can be an emotionally and physically demanding role to take on. Especially since carers are already dealing with multiple losses along the different phases of the disease. In order to prevent over exhaustion and loneliness, you might need acute support during this period. In some countries, carers have the right to apply for specific leave or benefits allowing them to care for a relative who is receiving end of life care.
Different relatives may have a different perception of the health situation of your loved one. It may be useful to have an open conversation with health professionals explaining prognosis and likely trajectory, involving the large family.
Many bereaved people will manage this life challenge with their inner resources and the support of their friends and family. But grief is often misunderstood, it can prove extremely difficult, and many people in such circumstances may feel very lonely. It is important to be aware that support around bereavement can be accessed after the death of a loved one, and can be helpful during this ordeal. In some countries, some bereaved people have the right to apply for specific benefits.
Once the immediate grieving has passed, some experienced carers find it meaningful to engage in voluntary work, and take part in peer support or advocacy activities. By doing so, they share their knowledge and commit to greater recognition of the invaluable contribution of informal carers to supporting people with cancer.