The emotional impact of living with lymphoma

Adjusting to a life with lymphoma can have a significant emotional impact. This page outlines some of the feelings you may experience after a lymphoma diagnosis and during and after treatment. The emotions described here might help you identify what you’re feeling and help you cope with your lymphoma. If someone you know has been diagnosed with lymphoma, this may help you understand what they are feeling.

On this page

Feelings after a lymphoma diagnosis

Coping with waiting

The impact of treatment

Feelings after lymphoma treatment

Depression

Coping with difficult feelings

Professional support

Positive changes

How we can support you

Feelings after a lymphoma diagnosis

People respond differently to a diagnosis of lymphoma. It’s not unusual to feel differently at various times, even within a single day. On the one hand, it might be a relief to know what is wrong after weeks or months of feeling unwell. On the other hand, you may experience challenging feelings when you are told you have lymphoma.

The feelings we cover here capture a wide range of responses people might have soon after a diagnosis of lymphoma. You won’t necessarily feel all of these emotions or experience them in a particular order or at a set time.

Shock and disbelief

Shock is a very common reaction to a diagnosis of lymphoma. Some people say they feel numb or as though it isn’t really happening to them. This is often the case if you are having tests for a different medical condition when the lymphoma is found.

Should this happen to you, it might take weeks before the news of the diagnosis starts to sink in. You might need to hear the same information several times over.

Some people may respond to the news with denial (complete refusal to accept that the diagnosis is true). People in denial may carry on with their daily life as if nothing has changed. Denial isn’t entirely bad – it protects you from the emotional pain that can come when you think about the situation. However, if denial continues, it may stop you from recognising the impact lymphoma is having on your life.

Denial may also prevent you from building healthy coping strategies and from being actively involved in your healthcare decisions. It may also mean you are less likely to take good care of yourself or seek medical advice when you need to.

If you don’t yet feel ready to talk about your lymphoma, explain this to the people around you. Let them know you need some time to process the information you’ve been given.

Fear and anxiety

Anxiety is the feeling caused by facing something threatening or stressful. Being diagnosed with lymphoma is an example of such a situation. Many people feel terrified and struggle to take in anything more the doctor says after hearing the initial diagnosis.

You are likely to have questions about lymphoma and its possible treatments. You might wonder how the illness will impact on your day-to-day life, including your work, finances and relationships. So many uncertainties can lead to feelings of being overwhelmed and anxious.

Anxiety can affect your mind and your body. You may feel tired but unable to sleep. Anxiety can lead to feelings of worry, irritability and difficulty concentrating. It can also cause physical symptoms such as muscle tension, racing heart or palpitations (fluttering or pounding), dizziness and quick breathing. Although anxiety is a natural response, it can feel overwhelming. If it interferes with your day-to-day life, seek help from a member of your medical team.

Anxiety is particularly common if you are on ‘watch and wait’ (time with no immediate treatment, also known as active monitoring). You may be on ‘watch and wait’ for several years, during which you have regular check-ups. Being told you have lymphoma but that you won’t have treatment until the cancer progresses can be very hard to deal with. Ask your medical team to explain their reasons for advising ‘watch and wait’ as the best course of action for you.

Helplessness and loss of control

You might feel that things are happening to you and that they are outside your control, including the illness and the medical interventions you have. Your life may be filled with appointments that tell you when and where you need to be. However, you might not fully understand all the tests and scans or exactly how your treatment works. This can bring a sense of lack of control.

It is common to feel such a loss of control after diagnosis. Over time, it can lead to other feelings such as fear, anger or to a sense of helplessness and low mood. Ask your medical team all the questions you have – there are no silly questions. Don’t be afraid to ask for the same information more than once, or to have something explained in a different way if you don’t understand it. Your medical team are used to answering queries and should welcome any questions you might have. This is your health – you have a right to know what is happening and to take an active part in making decisions about your care and treatment.

Anger

Having lymphoma throws you into an unfamiliar world of medical information, hospital visits and treatments. You might be angry about the disruption to your life and future plans. You may feel angry with the cancer itself or the health professionals looking after you.

People often question why lymphoma has happened to them. They feel it is unfair and that it doesn’t make sense when they have a fit and healthy lifestyle.

It is common to feel irritable with the people around you. You may resent that they are able to carry on with their lives as normal. Perhaps people urge you to ‘be positive’ and to ‘fight’ your illness – but there will be times when you don’t feel positive or eager to fight. 

It is important to allow yourself to feel whatever you feel; pushing down difficult feelings can make them harder to cope with in the long run. Tell someone you trust how you feel. If it is easier to speak to someone who is not close to you, you may prefer to speak to a member of our Information and Support team online or on the phone.

Sadness and loss

Some people feel grief for the loss of their good health. You may feel great sorrow that you cannot continue living your life in the way you have done before your diagnosis. You might also feel sad for the people around you, such as family and friends, because they, too, are coping with challenging feelings. This grief may trigger memories and feelings about other losses you have experienced in your life.

Guilt

Some people feel guilty when they are diagnosed. They wonder if they have done something to cause the lymphoma or not taken sufficient precautions to prevent it. You might think you should have noticed the symptoms sooner, or wonder whether you have put yourself in a situation that has somehow caused your illness.

It is human nature to look for someone or something to blame, or at least to help explain things. In most cases, however, the cause of lymphoma is not known. There is little or no evidence to suggest that anything you have – or have not – done has caused you to develop lymphoma.

Withdrawal or isolation

There may be times when you feel unable to be in the company of others. You might feel that no one really understands what you are going through. You might pretend you are all right even when you don’t really feel all right. You may worry how people will respond if you tell them what is really on your mind, which can make you withdraw.

Keeping in contact with family and friends is important. The support these relationships offer can improve your mental wellbeing and encourage you to take good care of your general health. It is understandable that you would want to be alone with your thoughts from time to time. Let the people close to you know if this is the case. Wanting to be alone all or most of the time could be a sign of depression. If this is the case, contact your medical team for support.

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Coping with waiting

Waiting for appointments and consultations is a big part of living with lymphoma before, during and after treatment. Whatever the stage of your illness, waiting can be challenging and may bring difficult feelings. Let your medical team know how you feel. Ask all the questions you have – although definitive answers may not always be possible, your medical team are best-placed to give you information based on your individual circumstances. Talking through your concerns may also help you to process your thoughts and to lower your anxiety levels.

Waiting for more information about your lymphoma

After your diagnosis, you might have tests to gather more information (eg about the type of lymphoma you have). Your doctor also needs to find out the stage of your lymphoma before planning your treatment.

Waiting for tests can be unsettling. You might feel unsure what to expect and anxious about what the results will show. You should be offered any hospital appointments you need as soon as possible, but you may need to wait a couple of weeks to have some specialist scans, such as MRI scans and CT scans.

It can then take a couple of weeks for your test results to come back. This might feel like a long wait and it is natural to feel anxious during this time. Remember that the tests allow your doctor to collect very important information about your lymphoma that will help them choose the best treatment for you. If you are worried while you are waiting for treatment, or if you think that your symptoms are changing, speak to your specialist or GP.

Waiting for treatment to begin

The length of time from your diagnosis to starting treatment depends on various factors, such as the type of lymphoma you have and your general health. Some people appreciate the wait as it allows them time to mentally prepare themselves for treatment. Other people feel frustrated and eager to begin treatment immediately.

You might worry that your lymphoma will grow while you wait for treatment. Rest assured that the wait is very unlikely to affect the success of your treatment. Your medical team will know if you need to start treatment sooner. 

Active monitoring (‘watch and wait’)

‘Watch and wait’ (active monitoring of the lymphoma) can be a difficult idea to understand. It might seem strange that you have a diagnosis of lymphoma but are not having treatment straightaway. If your medical team advise ‘watch and wait’, it means it is best to keep monitoring your lymphoma and to delay treatment until it is needed.

Many people stay on ‘watch and wait’ for a number of years. Evidence suggests that people on ‘watch and wait’ do just as well in the long-term as people who are treated right away, if not better. Most people enjoy a good quality of life and respond well to treatment when it is really needed. The benefits of not beginning treatment immediately are:

  • you do not have to tolerate the side effects of treatment
  • there is no risk of the lymphoma cells becoming resistant to treatment
  • the only hospital visits you need are to the outpatient clinic for check-ups.

Speak to your doctor or specialist nurse and ask how they can help you while you’re on ‘watch and wait’. They may be able to refer you to a psychologist or counsellor if your anxiety levels are high. You may also find it helpful to speak to a member of our Information and Support team, who can offer information and support. We also offer a range of other support services.

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The impact of having treatment

Treatment for lymphoma can have a significant impact on your mental wellbeing. Even if you feel relieved to start treatment, it can be difficult to cope emotionally with your new reality. Treatment can have an effect on other areas of your life; it can cause side effects that can be challenging to deal with, as well as cause changes to your lifestyle and relationships.

Side effects

The aim of treatment for lymphoma is to destroy lymphoma cells. However, all treatments have other, unwanted effects on the body, called ‘side effects’.

Treatments for lymphoma have different effects on different people. The effects depend on several factors including the type and dose of drug you are given. Your medical team will prepare you as far as possible for any side effects you are likely to have; however, no one can predict exactly how you will respond.

You might experience temporary problems such as hair loss, changes to your weight, and difficulties with your concentration or memory. Such side effects can have a significant impact on your self-confidence. It is possible that you will have longer-term changes to cope with, too, such as reduced physical strength, fatigue and fertility difficulties.

Most side effects are short-term, although they can last for a few weeks or months after treatment has finished (long-term side effects). Occasionally, some side effects may be permanent and others occur later in life (late effects). Whether they are short- or longer-term, side effects can be hard to cope with, both physically and emotionally. Speak to a member of your medical team for information about any side effects you are likely to experience with your treatment. Ask for advice on coping with them.

Changes to your lifestyle

Having treatment means hospital visits and periods of recovery at home, which are likely to affect your normal routine. You may also experience changes in some of your close relationships.

Some treatments are likely to affect what you are able to do. For example, you might have treatment-related fatigue while you are having chemotherapy or radiotherapy, which means you have less energy than usual to do all of the things you normally would.

Such effects can be challenging. For example, you may be temporarily unable to continue working in the role or for the hours you used to. Reducing or stopping your work can bring financial concerns. If you have a job, speak to your employer about the support available to you. Your employer must, by law, make any ‘reasonable adjustments’ that allow you to continue working while you are having treatment and afterwards. If you are self-employed and unable to work, consider how you can manage your work and finances.

Macmillan Cancer support has information about financial support if you are living with or caring for someone with lymphoma. They also run a benefits advice service. You can speak to a Macmillan advisor for free by calling on 0808 808 00 00. Visit our page on day-to-day practicalities which signposts to other organisations that offer specialist support and advice about financial support.

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Your feelings after lymphoma treatment

It can be difficult to adjust to having finished treatment. During treatment, your focus might have been on your tests and treatments. Perhaps you were looking forward to the end of treatment. You might have felt reassured to have regular contact with the members of your medical team.

Many people go through a wide range of emotions after treatment – whether this is straightaway, weeks, months or even years later. There isn’t a ‘normal’ way to feel, but some of the emotions you might experience are described below.

Different people find different ways of coping and it is important to remember that there is support available.

Isolation 

You will probably have become used to seeing hospital staff regularly during your treatment. You might feel abandoned and alone as you no longer see them so often. Perhaps you are spending more time on your own now or with people you feel don’t really understand what you’ve been through.

People might expect you to feel relieved or happy that your treatment is over – they may not realise that this can still be a very challenging time. This can intensify feelings of isolation. Give yourself time to process what you have been through and to adjust to your life as it is now. Let the people close to you know that this is still a difficult time for you.

Shock and anger

When your treatment finishes, the reality of what has happened might hit you – either afresh or for the first time. Some people experience shock at this stage.

You might feel angry about what you and your loved ones have been through or about the disruption lymphoma has caused in your life.

Irritability and blame

Some people say they find it hard to relate to others who have not had lymphoma or another cancer after what they have been through.

It is not unusual to look for someone to blame – either yourself or others. You might also feel irritable and get upset about things that wouldn’t normally bother you.

Loss of confidence

You might not feel confident about getting ‘back to normal’ and taking on everything that you used to. Physical changes such as hair loss or a change in your weight can also make you feel self-conscious.

Anxiety and uncertainty

Most people feel anxious from time to time. Feeling uncertain and not fully in control can be very hard to live with and planning ahead may seem impossible.

For some people, it is difficult to pinpoint exactly where their feelings of being unsettled are coming from and you may have more of a general sense of anxiety.

Even though many people with lymphoma are cured by their first course of treatment, it is only natural to worry about the lymphoma coming back (relapsing) and you might find that you are more watchful of aches, pains and other bodily sensations than you used to be. Waiting for follow-up appointments can be especially difficult. Prepare yourself mentally by finding out what the appointments involve and what their purpose is.

Remember that if you have no new symptoms, it is unlikely that your lymphoma has returned. Your medical team will tell you what to look out for and how to contact them if you are concerned.

Anxiety can make it hard both to relax and to concentrate. If you have problems sleeping, you may find the advice on the NHS Choices website helpful. Speak to your GP if the quality of your sleep is affecting your daily life.

Anxiety can lead to feelings of worry, irritability and difficulty concentrating. It can also cause physical symptoms such as muscle tension, racing heart or palpitations (fluttering or pounding), dizziness, feeling sick and quick breathing. Although anxiety is a natural response, it can feel overwhelming. If it interferes with your day-to-day life or you feel panic, seek help from a member of your medical team.

Some people choose to learn more about their lymphoma; they find that understanding what has happened to their body lowers their feelings of uncertainty and anxiety. For others, this causes more anxiety, so it is important to do whatever feels right for you.

Seek advice from your GP if you are feeling anxious. There are a number of things that could help including medication, talking treatments (eg counselling), and self-help strategies such as mindfulness.

Sadness and depression

It is natural to feel low from time to time and to feel upset about what has happened to you and those close to you. If these feelings do not lift and continue over time, you could be depressed.

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Coping with difficult feelings

It is natural to worry about the future after a diagnosis of lymphoma. Throughout your treatment, you may be apprehensive about tests and scans and you will almost certainly be anxious to know whether the treatment has worked.

Even after your lymphoma has been successfully treated, you may worry about it relapsing (coming back). Relapse can be very distressing, but many people are successfully treated again. If your lymphoma does return, it can bring back some or all of the emotions you felt when you were first diagnosed. You might even find it more difficult this time around. There is support available to you.

Having lymphoma is challenging. There is no simple way of preparing for the range of emotions you might experience. You can, however, find ways to live well with lymphoma. Acknowledge how you feel and ask for the help you need. Your medical team, family and friends, and our helpline team can each be a source of support to you. 

Consider what you are able to control

A lymphoma diagnosis and all the changes it brings can lead you to feel as though you are not in control of your life. Look for what you do have influence over to help you regain your independence and sense of control. Learning about lymphoma is one way of doing this. Making healthy lifestyle choices, such as following a healthy diet and taking regular exercise, is another. Setting daily and weekly routines can also help to give you a sense of normality and control.

You also have freedom to choose what information you share and who to share it with. People around you might ask lots of questions and offer advice you don’t need. It can be challenging to cope with their responses when you are also dealing with your own feelings. Try to be honest about what you want and need from the people around you.

We have separate information about relationships, including tips for effective communication, which you may find useful if you’re having difficulties talking about lymphoma to the people around you.

Find out about lymphoma and its treatments

Knowledge often helps people to gain a sense of control. Understanding a bit about lymphoma and its treatments can help you to be involved in making decisions about your care. Your medical team are best placed to give you information about your specific diagnosis. Ask questions and ask for information to be repeated if you need it – there is a lot to take in and your medical team should be used to going over details.

We have information about lymphoma, including information about types, treatments, and living with lymphoma. You can also watch videos on our YouTube channel, which include talks from health professionals and people with personal experience of lymphoma. Our helpline team are also available if you would like to talk about any aspect of lymphoma.

It may feel daunting to find out about lymphoma. If so, you might prefer to ask a friend or family member to help. You could ask them to do some research for you and then summarise what they’ve learnt. Perhaps they could outline only what you really want or need to know to prevent you from feeling overwhelmed by a large amount of information.

Helen describes how she took this approach  when her daughter, Carol, was diagnosed with lymphoma. Read Helen’s personal experience.

Express your feelings

Having a conversation with someone about how you feel can greatly benefit your mental wellbeing. Many people find it difficult to talk about emotions, particularly when they relate to cancer. Macmillan Cancer Support publish a booklet called Talking about your cancer, which you may find helpful.

You might prefer to talk to someone outside of your family about how your lymphoma affects you. Our Information and Support team are here for you if you would like to talk. We also offer a range of support services that you may find beneficial.

For some people, speaking to a counsellor, who is trained to help people explore their thoughts and feelings, is valuable.

Some people find that writing (for example in a journal or on a blog) provides additional support in coping with difficult feelings. It can be useful to set aside some time in a private space, free from interruptions. Express yourself freely knowing that your writing is only for you and that you have a choice in whether you share it with others. Writing down your thoughts and emotions can help you to make sense of them and to feel calmer and more in control.

It is important to recognise, however, that self-expression can bring intense emotions to the forefront of your mind. Set aside a limited amount of time in any one session. Consider how you take care of yourself afterwards; for example, arrange to call or spend time with a close family member of friend.

Make relaxation and enjoyment a priority

Relaxation can help to manage stress and anxiety. You may find the following suggestions helpful in encouraging relaxation:

  • Complementary therapies: these are used as well as, not instead of your hospital treatment. Examples include massage, acupuncture and aromatherapy.
  • Meditation: there are many types of meditation, all of which encourage relaxation. Some involve movement and breathing techniques. You might have heard of ‘mindfulness’, which involves slowing down and taking note of your body and thoughts, as well as the world around you. Focusing on the present moment can lower the stress you feel in worrying about the future or going over the past.
  • Do enjoyable things: be around the people whose company you enjoy and spend time doing leisure activities.

Do what feels right for you

We hope you find the tips above helpful, but remember to trust your instincts and do what feels right for you. Some people prefer to continue with life without thinking about their lymphoma very often. If this is the case, you might find work or other activities a good distraction. Other people want to know as much as they can about their lymphoma. There is no right or wrong way to cope. Give yourself time to adjust to your diagnosis and to find an approach that works for you.

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Depression

It is natural to experience feelings of sadness and anxiety from time to time. However, some people feel very low a lot of the time.

Depression is a very common experience for people with lymphoma and other types of cancer. Depression does not mean that you are weak. You cannot just ‘shake it off’ or ‘pull yourself together’; depression is an illness and there is support available.

Depression can affect people in different ways. You may feel:

  • anxious, sad or ‘empty’
  • hopeless, helpless and pessimistic
  • guilty or worthless
  • a loss of interest or pleasure in activities that you once enjoyed
  • that you want to harm yourself, which might include thoughts of suicide
  • that you are unable to concentrate, remember things or make decisions.

You might also have physical symptoms of depression, which can include:

  • unexplained aches or pains
  • loss of, or increased, appetite
  • sleeping more than, or less than usual
  • slow movement or speech
  • loss of libido (sex drive).

If you have had depression in the past, you may be more likely to experience it after a diagnosis of lymphoma.

There are various treatments and sources of support for people with depression. Speak to a member of your medical team or your GP if you think you may be affected by depression. Treatment depends on the severity of your depression and on your personal preferences. If your depression is mild, you might find self-help strategies helpful, for example, exercise and connecting with others through support groups. NHS Choices provides a resource called Moodzone, which you may find helpful.

Depending on your symptoms, your doctor might suggest talking therapies such as counselling or cognitive behavioural therapy. You can read more about talking therapies on NHS Choices.

Your doctor might talk to you about antidepressant tablets. There are many different types of antidepressant medication; they are often used in combination with other treatments such as talking therapies.

You can complete a short self-test questionnaire online, which is designed to provide an easy way to assess whether you might be experiencing depression. It should not, however, be used in place of a diagnosis or advice from a medical professional.

Mental health charities provide more information about depression, including available treatments and sources of support. Some of these are listed below:

Depression Alliance offer information and advice about depression. They have a range of resources, including videos and support groups for people affected by depression.

Mental Health Foundation have a set of podcasts that are designed to introduce skills and techniques that can help you live a mentally healthier life. 

MIND offer support and advice to anyone experiencing a mental health problem. They have information about depression on their website. They also operate a helpline that you can text or call.

SANE aims to improve the quality of life of anyone affected by a mental health problem. They have a helpline, text service and online support forums.  

YoungMinds is committed to improving the mental health and emotional wellbeing of children and young people. They have information about depression on their website.

Moodjuice is an online self-help resource to help you cope with emotional problems in a solution-focussed way.

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Professional support

The National Institute for Health and Care Excellence (NICE) recommends that your medical team checks your needs and offers help to address these. They should do this regularly, including when you are first diagnosed, at the beginning of your treatment, and when your treatment ends. You may hear this called a Holistic Needs Assessment (HNA). Your medical team should offer you support with the emotional impact of lymphoma. If this is not forthcoming, feel free to ask for it.

A diagnosis of lymphoma is likely to have an emotional impact. However, if your level of distress continues for a significant period of time and affects your everyday life, you may find it beneficial to seek additional support. This may include a talking therapy, such as counselling.

For some people, counselling provides an opportunity to talk about the things they feel unable to talk about to others. There are many different types of counselling. What they all have in common is the counsellor’s aim to provide a safe and non-judgemental space for you to feel heard and to explore your feelings.

Counselling can help you to consider:

  • your thoughts and feelings
  • the impact of lymphoma on your life (eg work, studies or caring for others)
  • what’s important in your life
  • how you tend to respond to people and things, relating this to your current situation
  • what the people and things in your life mean to you
  • your resilience and inner coping resources
  • resolutions and strategies to address problems.

If you are interested in counselling, speak to your doctor or nurse, who may be able to refer you to a counsellor on the NHS, through your hospital or a local cancer support centre. You can also search for a private therapist in your area using the British Association of Counsellors and Psychotherapists online tool.

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Positive changes

The physical and emotional stress and challenges of having lymphoma are not to be under-estimated. However, many people go on to experience positive life changes after all they have been through. Some of the aspects of life in which people report such changes after cancer include:

  • stronger relationships with family and friends
  • greater appreciation for life, being able to live in the present, re-evaluating priorities
  • adopting a healthier lifestyle than previously led
  • a changed view of self, for example, feeling greater resilience, gratitude, and acceptance
  • feeling more connected to their spirituality (which might include a religious faith).

Research continues into such positive personal and psychological changes. Factors that may help to promote them include: being able to express your emotions, having effective coping and stress management strategies, and having a strong social support network.

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How we can support you

We know that people need support in different ways. Our range of information and support services are available to everyone affected by lymphoma whether you have a diagnosis, or are a partner, family member, friend or carer of someone with lymphoma.

Our Information and Support team are specially trained to offer information on any aspect of lymphoma and to listen to your concerns. You can get in touch by phone, email, text or Live Chat. The helpline team also run a buddy scheme; they may be able to put you in touch with someone who has had a similar experience to you.

If you would like to meet with others who are affected by lymphoma face-to-face, you may like to attend one of our support groups. You can use our online search tool or call our helpline to find out what support is available near to you.

We run a programme of events designed to help inform and support people living with lymphoma. Check our online calendar of patient and carer events or call our helpline to find out more.

If you prefer to get in touch with others online, you may be interested in our forums, which offer a space for people affected by lymphoma where they can support each other.

Useful organisations and resources

Anxiety UK support those living with anxiety and anxiety-based depression by providing information, support and understanding via an extensive range of services, including one to one therapy.

Headspace is an online resource that teaches you meditation techniques and how to incorporate them into your day.

Macmillan Cancer Support produce a booklet called How are you feeling? The emotional effects of living with cancer, which covers feelings after diagnosis and talking about how you feel.

Maggie’s Centres provide practical, emotional and social support for those living with any type of cancer, their family and friends. Programmes vary from centre to centre; examples of sessions include talks (such as on nutrition or welfare benefits) and group sessions to practice relaxation techniques.

Moodjuice is an online self-help resource to help you cope with emotional problems in a solution-focussed way.

Mindfulness: A practical guide to finding peace in a frantic world, Penman D and Williams J. 2011. Piatkus, London. This book offers simple rituals that can be incorporated into daily life to help break the cycle of unhappiness, stress, anxiety and mental exhaustion and promote mental wellbeing.

The cancer survivor’s companion: practical ways to cope with your feelings after cancer, Goodhart F and Atkins L. 2011. Piatkus, London. This book offers practical help with the emotional impact of cancer.

The National Cancer Institute produce a booklet called Taking time: support for people with cancer for people who are newly diagnosed with cancer, their family and friends.

 

Further reading

Related content

Moodzone

This NHS Choices resource is helpful for anyone struggling with mental health.