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Supporting people with non-Hodgkin's lymphoma
Lifestyle changes

Keypoints

  • As the treatment for non-Hodgkin's lymphoma is often different in every case, it affects every patient in different ways
  • Even during the course of treatment, the impact on patients' lives can vary enormously
  • It is important for patients to raise any questions about how the disease or treatment may affect their lives with the doctor and nurse
  • It is also a good idea for patients to discuss their condition with their employer so they can anticipate any potential problems

Introduction

Many patients with non-Hodgkin's lymphoma wonder about what changes may be needed to their lifestyle as a result of their condition or its treatment. Any changes that are needed will vary from person to person, since everyone's experience of non-Hodgkin's lymphoma is different.

While it is impossible to generalise for all patients, those with indolent non-Hodgkin's lymphoma often have relatively minor symptoms over long periods of time, sometimes leading to a 'watch and wait' approach, to be used until treatment becomes necessary. In comparison, patients with aggressive forms of the disease usually need treatment straight away, although the chances of a cure are higher.

Impact on life is also likely to differ at different times - for example, many lifestyle changes might be needed during treatment, whereas after treatment many people with non-Hodgkin's lymphoma are able to lead normal or close to normal lives.

The most important thing for patients, and their family and carers, to remember is to maintain a positive attitude. The doctor and nurse will work with the patient to ensure that they have the most appropriate and best treatment possible, and family, friends and support groups can be a valuable source of information, reassurance and support.

Common questions on aspects of living with non-Hodgkin's lymphoma

The most important thing for patients, and their family and carers, to remember is to maintain a positive attitude
non-Hodgkins lymphoma - positive attitude

It is impossible to give definitive answers to questions that are commonly asked by people with non-Hodgkin's lymphoma about the effects that the condition and its treatment might have on their lifestyle. This is because the experience of patients with the disease is different in every case. Common questions that are asked about living with non Hodgkin's lymphoma include:

  • The effect that the condition or treatment will have on work
  • Whether there are financial benefits available to patients
  • The effect that the condition or treatment will have on driving
  • The effect that the condition or treatment will have on holidays

Patients also often want to know whether the treatment they are having will affect their fertility or sex life. In addition, they want to know whether they will still be able to take out life insurance. In all cases, it is important that patients discuss any questions they may have with the lymphoma team at their hospital, particularly a specialist nurse in the lymphoma team, or their family doctor.

How will non-Hodgkin's lymphoma affect work?

Patients with indolent non-Hodgkin's lymphoma can experience few symptoms for relatively long periods, and so can often carry on working after they are diagnosed with the disease. As aggressive non-Hodgkin's lymphoma usually causes symptoms from the beginning and requires immediate treatment, those with this form of the disease may have to take time off from work.

Nevertheless, many patients find that they are able to keep working normally during treatment, especially younger patients between treatment cycles. Others do need to take time off because of the treatment or its side effects. However, going to work, if it is possible, is often helpful, as it gives a sense of normality to life and encourages people to adopt a positive attitude to their illness.

Going to work, if it is possible, is often helpful as it gives a sense of normality to life
non-Hodgkins lymphoma - work

It is usually a good idea for patients to inform their employer of their situation at an early stage, rather than waiting until a problem arises. Many people are pleasantly surprised at how understanding their employer can be, and work colleagues can also be a good source of support. Depending on the situation, it may be worth exploring shorter working hours or perhaps working from home sometimes.

It is illegal for an employer to treat an employee unfairly or in a discriminatory way because of illness. If this becomes an issue, your lymphoma team or family doctor may be able to offer advice about who might be able to help. Advocacy groups and patient organisations can also be a useful source of information.

 

Are there financial benefits that people with non-Hodgkin's lymphoma might be entitled to?

Many people with non-Hodgkin's lymphoma worry about their financial situation, especially if they find that they are unable to work as normal. Some patients with non-Hodgkin's lymphoma are entitled to various benefits, depending on their circumstances. This is a complicated and ever-changing subject, and good advice is essential. Although the clinical nurse specialist, specialist doctor or family doctor probably will not be able to help directly, they might be able to advise on where to go for information. A local support group may also be able to provide advice.

How will non-Hodgkin's lymphoma affect driving?

While the disease itself should not directly affect a patient's ability to drive, some of the chemotherapy drugs or other medications that are given as part of treatment for non-Hodgkin's lymphoma may make it unsafe or unwise to drive. These effects are not permanent. The doctor is the best person to advise patients about whether they ought to avoid driving and, if so, for how long.

How will non-Hodgkin's lymphoma affect holidays?

Many people with non-Hodgkin's lymphoma find that they are able to take holidays as normal. Others enjoy looking forward to a holiday that has been planned as a treat for when their treatment is finished. There are also likely to be times during treatment when it is better to stay at home. For example, some treatments suppress the immune system for a time and so make infection more likely during this period. It is therefore sensible to discuss any plans for holidays with the doctor.

Patients could benefit from going away to a well-loved destination or on a holiday to somewhere that they have always wanted to go to
non-Hodgkins lymphoma - holidays

Vaccinations are another matter to be considered. Some vaccinations cannot be given to people with non-Hodgkin's lymphoma. This should be discussed with the doctor before travel arrangements are made to a destination for which vaccinations are needed.

While it is advisable that patients do not go on an 'extreme' holiday, they could benefit from going away to a well-loved destination or on a holiday to somewhere that they have always wanted to go to.

 

 

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