Myeloma can impact other areas of your life, like finance or ability to work. Continuing to work, if you can, may help you maintain a sense of normalcy
Managing work and myeloma – Practical issues for patients and families
Continuing to work, if you can, may help you maintain a sense of normalcy. When you have been diagnosed with myeloma, you will need to contact your employer and come to an arrangement, as you may well need to take time off for tests and treatments; possibly involving staying in hospital. Your doctor or nurse should be able to provide written confirmation of your diagnosis which will explain how it may affect your ability to work. Many employers are becoming more flexible about hours, especially with people who have health conditions, and it may be possible to investigate reducing your hours as well as your level of responsibility, if that would help.
If you look after someone else who is dependent on you, such as children or elderly parents, it is sensible to make some other arrangements for their care in the case of an emergency, or when you must go to appointments. You may not need to put the emergency plans into action, but it is possible that you may need to go to hospital at short notice for treatment or care, e.g., if you have an infection. If that is ever the case, having an emergency plan means you won’t have to make urgent decisions about caring for others at that time
Insurance, financial and other issues
Insurance is an important issue, if you plan to travel or if you become ill while you are in another country. It is sensible to discuss your plans with your doctor if you are likely to be undergoing treatment at or near the time you plan to travel.
If you are travelling within the European Economic Area or Switzerland from the same health care services as are available to residents of those countries for free, or at a reduced cost, by obtaining a European Health Insurance Card. This is free of charge and can be obtained online. However, while this will cover your medical care costs, it will not cover the cost of returning you to your own country, so individual travel insurance is strongly recommended. Insurance for travel to countries outside Europe, especially in North America, can be very expensive.
Being treated for myeloma may mean that you need to take a significant amount of time off work or even permanent leave, which can give rise to financial worries. You may also need to spend an increasing amount of money on medications and travel to hospital appointments, which can make a difference as well.
In many countries, you may be eligible for several benefits from the government, which will help to alleviate financial pressure. These vary according to the individual country, but in many cases provide for a living or personal independence allowance, support to pay for a carer to look after you, or a tax allowance. If you are working, you may be entitled to a statutory support allowance, if you are not eligible for sick pay from your employer. A relative or friend looking after you may be able to claim a carer’s allowance.
Advice on the various benefits available to you can usually be obtained from nurses and social workers at your hospital, from community/citizens’ advice bureau or online.
Advance decisions: living wills
Many people find it helpful to think in advance and make some plans about whether they would prefer to refuse particular types of treatment at some time in the future. Where this is written down in a document it is known as a living will or advance decision. Its purpose is to make your wishes clear, if you are unable to communicate yourself. Because it is a legal document, there are some differences in the requirements of individual countries. The following paragraphs explain the purpose of the advance decision; but you will need to check exactly what the provisions are in your own country.
The document must explain exactly which interventions or treatments you do or do not want. Some decisions are made when people are nearing the end of their life and they choose to have (or not have) artificial feeding tubes for nutrition, to be put on a ventilator or not, or if they would or would not want cardiopulmonary resuscitation (CPR). It is important, yet understandably difficult, to discuss these situations with your family, loved ones, or anyone who would be responsible for making decisions for you (if/when you are unable). These discussions should focus on your definition of quality of life and under what circumstances you would (or would not) want these measures.
It can also be helpful to discuss with a doctor what interventions or treatments you might need in future, and what would happen if you refuse them. If you might die as a result of refusing such treatment, the document must state clearly that the advance decision is to apply to the specific treatment even if life is at risk or shortened as a result. An advance decision cannot be used to ask for specific treatments, or to ask for help to end your life.
To make your wishes legally valid, they must be written down and signed and dated by yourself and by a witness. To be put into action, your wishes must be applicable to your situation and the treatments available, if you are not able to make your own decisions about your treatment, e.g., if you are unconscious, and if there is no reason to suspect that you might have changed your mind since the document was signed.
Palliative care
The World Health Organisation (WHO) defines palliative care as “an approach [to treatment] that improves the quality of life of patients and their families who are facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and correct assessment and treatment of pain and other problems, whether physical, psychosocial or spiritual.”
Palliative care is not just for the end of life – you may receive palliative care earlier in your illness, while you are still receiving other therapies to treat your condition. Palliative care is offered in various settings (at home or in hospital) and may look different depending on what country you live. If your symptoms are worsening, or you are experiencing other issues or concerns and need more support, speak with your treating doctor about your options for palliative care, or other supportive care options.
End of life care should help you to live as well as possible until you die. The people providing your care should ask you about your needs and preferences, and take these into account as they work with you to plan your care. They should also support your family, carers, or other people who are important to you. While difficult, it is never too early to discuss these matters with your loved ones.
Getting help and looking for resources
You can find help and information from many sources. First and foremost, your own medical team should be your main reference source as only the members of this team have full knowledge of your individual condition and what treatments are working or have been less successful. This team will include your consultant haematologist, specialist nurses and general practitioner. Depending on your exact combination of symptoms, you may also be advised by specialists in particular systems of the body, e.g., a renal specialist, if you have kidney problems, or a neurologist, if you have neuropathy. You should also have access to social workers or a community advice bureau for questions relating to social care or finance.
You may find that information from the internet is variable in its quality and level of detail, and healthcare systems are slightly different in every country. An excellent starting point for information relevant to your own country is the website of your own national myeloma association, or Myeloma Patients Europe. Many of these associations can put you in touch with support groups in which you can talk and exchange experiences and problems with other myeloma patients and professionals. Some have online discussion forums, where you can chat with patients wherever they live. Find out about your local myeloma groups here.
