There’s no set or typical way to feel after being told you have lymphoma – we all respond differently to challenging news. Part of you might feel relieved to have an explanation for your symptoms. You are likely to experience a mix of feelings and emotions, some of which can be difficult to cope with.
Adjusting to life with lymphoma can be considered an ongoing process. It’s not unusual for your feelings to change, even at different times within a single day.
The feelings outlined below cover a range of responses that people often have soon after a diagnosis of lymphoma. You won’t necessarily feel all of these, nor in a particular order or at set times.
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 in people whose lymphoma is found when they are having tests for a different medical condition.
It might take weeks before the news of the diagnosis sinks in. You might need to go over the same information several times before it does. This is a natural reaction to such a significant life change and it can take time to adjust.
Some people go into denial and are unable to accept that the diagnosis is true. People in denial might try to 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 it continues, denial can stop you from recognising the impact of lymphoma on your life, which can, in turn, affect your emotional wellbeing. It can prevent you from developing healthy coping strategies and from being actively involved in making important decisions about your health care. Staying in denial might also lower your likelihood of taking good care of your general wellbeing, including seeking medical advice when you need to.
If you are in a state of shock or disbelief, you might not want to talk about your lymphoma. Explain to your family and friends that you need some time to process the information your doctors have given you.
It’s natural to be fearful of the unknown; lymphoma is unfamiliar and a threat to your physical and emotional wellbeing. Many people feel scared and struggle to take in anything more the doctor says after hearing ‘lymphoma’ or ‘cancer’. It can be helpful to take someone into your consultations with you, to help note down and remember the key points, as well as to offer emotional support.
Your fears might feel overwhelming. You might, for example, have fears of being in pain, of your treatment and of the outcome of lymphoma. You might struggle to be alone. Media coverage of cancer and use of language such as ‘battling’, ‘fighting’ and ‘victims’ can be unhelpful and add to a sense of fear.
We experience anxiety in response to facing something threatening or stressful.
You are likely to have questions about lymphoma and what treatment you might have. You might wonder how the illness will impact your day-to-day life, including your work, finances and relationships. Facing so many uncertainties can heighten anxiety and lead to a sense of being overwhelmed.
Anxiety can affect your mind and your body. You might experience:
- tiredness but feel unable to sleep
- increased irritability
- difficulty concentrating
- muscle tightness (tension)
- racing heart or palpitations (fluttering or pounding)
- quick breathing.
Although anxiety is a natural response to a challenging situation, it can feel very uncomfortable and overwhelming. If anxiety interferes with your day-to-day life, speak to a member of your medical team for support – a clinical nurse specialist is often a good person to approach.
Anxiety is particularly common if you are on active monitoring (also known as ‘watch and wait’ or ‘active surveillance’, where you do not receive treatment straightaway but have regular check-ups). Being told you have lymphoma but that you won’t have treatment until the lymphoma changes can be very hard to deal with. Ask your medical team to explain their reasons for advising active monitoring as the best course of action for you, and consider ways of managing your anxiety.
Helplessness and loss of control
It’s common to feel a loss of control after a lymphoma diagnosis. Some people describe a sense of things ‘happening to them’ and feeling passive in their lives. Your diary might seem to suddenly fill with appointments that tell you where you need to be and when. Perhaps you don’t fully understand what’s going on, for example the reasons for all the tests and scans you’re having or how your treatment works.
Getting the information and support you’d like can help you to regain a sense of control. Don’t be afraid to ask your doctors any questions you have. You can also ask for the same information again if you can’t remember it all or didn’t understand the first explanation. Your medical team are used to giving information and shouldn’t mind answering your questions. You have a right to understand your situation and to take an active part in making decisions about your care and treatment.
Lymphoma can throw 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 might direct your anger at the cancer itself or at the health professionals looking after you.
People often question why lymphoma has happened to them. They feel it is unfair and doesn’t make sense, particularly if they have been in good health up until this point.
It is common to feel irritable with the people around you. You may resent that they can carry on with their lives as normal. People might urge you to ‘be positive’ and to ‘fight’ your illness. There’ll be times when you don’t feel positive or eager to fight, though, and these comments can leave you feeling hurt and distant from others.
It’s important to allow yourself to feel your emotions; pushing them down can make them harder to cope with in the long run. Tell someone you trust how you feel. If it feels easier to speak to someone who is not close to you, you may prefer to get in touch with a member of our Information and Support Team.
Sadness and loss
Some people feel grief and loss for their good health. You might feel sorrow in being unable to continue to live your life in the same way that you have until now. You might also feel sad for your family and friends, knowing that they, too, are coping with challenging feelings. Memories and feelings about other losses you have had in your life could also be triggered.
Some people feel guilty when they are diagnosed with lymphoma. They wonder if they’ve done something to cause it or if there’s anything they could have done to prevent it. Some people look back and think they should have noticed the symptoms sooner. It’s not uncommon to feel guilty for the impact lymphoma has on your friends and family too.
It’s 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 might be times when you feel unable to be around others. You might feel that no one really understands what you’re going through. Some people pretend to feel OK even when they don’t really feel this way. You might worry about how people will respond if you tell them what’s really on your mind.
It’s understandable that you would want to be alone from time to time. However, keeping in contact with family and friends is important, too. The support these relationships offer can improve your mental wellbeing and encourage you to take good care of your general health.
During times when you’d rather be on your own, you could politely let the people close to you know that this is the case. Wanting to withdraw from others and be alone all or most of the time could be a sign of depression. If you think you might be experiencing depression, speak to your GP or your clinical nurse specialist for support.
Carol talks about how her experience of lymphoma affected her emotionally.
This video was created when Lymphoma Action was called the Lymphoma Association.
It can be difficult to cope with your emotions after a diagnosis of lymphoma. If you are struggling, there are things you can do to help and there is support available. Our section on coping with difficult feelings gives some suggested starting points. You can also contact our Information and Support Team on 0808 808 5555 or firstname.lastname@example.org.
Waiting is a big part of living with lymphoma; there’ll be appointments, results and consultations before, during and after treatment to wait for.
Whatever point you are at, waiting can be emotionally challenging. Let your medical team know how you feel and ask them any questions you have. Although they might not always be able to give definite answers, they are best-placed to give you information based on your individual circumstances. Talking through your concerns might also help you to process your thoughts and to lower your anxiety.
Waiting for information about your lymphoma
Once you have a diagnosis, you might have further tests to gather more information. For example, your doctor might ask you to have tests to find out which type of lymphoma you have and to determine its stage. This helps your medical team tailor treatment to your individual situation.
Waiting for tests can be an unsettling time. You might feel unsure what to expect and anxious about what the results will show. You should be offered any hospital appointments as soon as possible, but you may need to wait a couple of weeks for some specialist scans, such as an MRI scan or a CT scan.
It can then take a couple of weeks for your test results to come back. Waiting for your test results can be difficult and might feel like a long time. It’s natural to feel anxious during this time. Remember that your doctors are gathering important information about your lymphoma that will help them choose the most effective treatment for you. If you are worried while you are waiting for treatment, or your symptoms are changing, speak to your nurse specialist, consultant 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 on your general health. For some people, the wait is welcome as it allows them time to mentally prepare themselves. Other people feel frustrated with the wait and eager to begin treatment.
You might worry that your lymphoma will grow before you have treatment. Rest assured that your medical team will tailor what treatment you have and when you have it specifically to your individual situation. If anything changes and you need to start treatment sooner, they will take action to bring it forward.
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 cancer diagnosis but are not having treatment straightaway.
If your medical team advise active monitoring, it means it’s best to keep monitoring your lymphoma and not start treatment until it’s needed. Many people stay on active monitoring for a number of years.
Ask your doctor or clinical nurse specialist how they can help you to cope emotionally while you’re on active monitoring. If your anxiety levels are high, they might be able to refer you to a professional who can offer support, such as a counsellor or another form of talking therapy. You might also find it helps to speak to a member of our Information and Support Team. We offer a range of support services that you might find helpful.
Starting treatment for lymphoma can be an emotional experience. It can bring mixed feelings, such as relief, sadness, being overwhelmed or a sense of the surreal.
It can be hard to cope with the anticipation and reality of your treatment plan. Some side effects can be challenging to deal with and affect other areas of your life, such as your work and personal relationships.
The aim of treatment for lymphoma is to destroy lymphoma cells. However, treatments can have other, unwanted effects on the body known as side effects.
Your medical team will prepare you as far as possible for any side effects you might have; however, no one can predict exactly how you will respond.
Whether your side effects are short or long-term, they can have a significant impact on your self-confidence and emotional wellbeing. Talk to your medical team about how they affect you so that they can offer you help to manage them.
Changes to your lifestyle
Having treatment means hospital visits and recovery periods at home, both of which are likely to affect your usual routine. You might also experience changes in some of your close relationships, for example, relying on a family member for transport to and from appointments.
Some treatments are likely to affect what you are able to do. For example, you might experience treatment-related fatigue after chemotherapy or radiotherapy; you might therefore not have the energy to do all the things you would usually do. This can have a knock-on impact on other areas of your life. For example, you might temporarily be unable to work in your job role or for the hours you did before you had lymphoma. Reducing or stopping work can bring financial concerns.
Many people find it difficult to adjust to life after treatment. It can feel like a strange time and bring a wide range of emotions, whether this is straightaway, weeks, months or even years later.
A sense of anti-climax
Although you might have been looking forward to completing your treatment, it can feel like an anti-climax when you do. Many people find it reassuring to have frequent contact with the members of their medical team and feel unsettled to no longer have this.
Remember that your medical team will plan an individually-tailored schedule of follow-up appointments for you. Ask them for information about this and ask all the questions you have.
After having lymphoma, some people say that they find it hard to relate to those who haven’t had lymphoma or another cancer. This can lead to feeling distant from others.
You might also have got used to seeing, and grown fond of, the medical professionals you met during your treatment. Some people feel abandoned and alone now that they no longer see these people so often.
Family and friends might expect you to feel a certain way – for example, relieved or happy that treatment is over. They might not appreciate that this is still a challenging time, leaving you feeling distant from them and alone.
Give yourself time to process what you’ve been through. Recognise that it takes time to adjust to life after lymphoma and let the people around you know that this is a difficult time.
Shock and anger
When your treatment finishes, the reality of what has happened might hit you, either afresh or for the first time. You may find that you are struggling with the shock of what has just happened to you.
You might feel angry about what you and your loved ones have been through or about the disruption lymphoma has caused to your life.
Irritability and blame
It’s 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.
Some people feel nervous about trying to ‘get back to normal’, for example, about returning to their job. Effects of treatment, such as fatigue and cancer-related cognitive impairment (sometimes known as ‘chemo brain’), can lower your self-belief. You might feel less confident in carrying out the tasks that you did before you were diagnosed. Physical changes such as hair loss or a change in your weight can also make you feel self-conscious. All of these changes can impact on your sense of resilience and emotional wellbeing.
It often helps to allow yourself time for your recovery. Be patient with yourself and recognise that you’ve been through a lot. Most people find that taking a gradual approach to returning to their day-to-day activities is more helpful than trying to rush things.
Anxiety and uncertainty
We all feel anxious from time to time. Uncertainty and feeling that your sense of control is lessened can be very hard to live with.
Even though many people with lymphoma go into remission (no evidence of lymphoma), it is natural to worry about the lymphoma coming back (relapsing). You might become more watchful of aches, pains and other bodily sensations.
For some people, waiting for follow-up appointments heightens anxiety and brings fresh worry about the possibility of relapse. You might find it helps to prepare yourself mentally by finding out what the appointments involve and the purpose of them. 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. If they haven’t given you this information, ask for it.
Although it is unrealistic to try to get rid of anxiety completely, you can find ways of managing it.
Sadness and depression
It’s natural to feel low from time to time and to feel sad and upset about what has happened to you and the people close to you. If these feelings do not lift and continue over time, you might be experiencing depression.
If you find it difficult to cope with your emotions after finishing treatment for lymphoma, there are things you can do to help. Our section on coping with difficult feelings outlines some starting points. You can also contact our Information and Support Team on 0808 808 5555 or email@example.com.
Everyone feels low from time to time, and having lymphoma is bound to bring sadness and anxiety. However, if you feel very low a lot of the time, you might be experiencing depression. Depression affects a lot of people who have lymphoma and other types of cancer. If you have been affected by depression in the past, you may be more likely to experience it after a diagnosis of lymphoma.
Signs of depression
Depression can affect people in different ways. You might 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 are unable to concentrate, remember things or make decisions
- that you want to harm yourself, which might include thoughts of ending your life.
You might also have physical symptoms of depression, which can include:
- unexplained aches or pains
- loss of, or increased, appetite
- sleeping more or less than usual
- slow movement or speech
- loss of libido (sex drive).
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. If you think you might be experiencing depression, get support.
Speak to a member of your medical team or your GP if you think you could be affected by depression.
There are various treatments and sources of support for people with depression, including:
- self-help strategies, for example exercising, connecting with others through support groups, and using online self-help resources such as the NHS Moodzone
- talking therapies such as counselling or cognitive behavioural therapy
- medication, often used in combination with other approaches, such as talking therapies.
Mental health charities and organisations have more information about depression, including available treatments and sources of support. You can find a list of these on our useful organisations page.
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 practical and emotional help from friends and family. Practical and emotional support can also come from different places, for example, a support group, an online forum or a counsellor.
Maggie Rayfield, a clinical psychologist, talks through some different ways to help you cope with difficult feelings. This video was created when Lymphoma Action was called the Lymphoma Association. The content is still up to date.
Anxiety can affect your day-to-day life in various ways, including affecting your concentration, ability to relax and to get a restful night’s sleep. If anxiety interferes with your day-to-day life and stops you doing things or you feel panic, speak to your GP for advice. There are a number of things that could help including medication, talking therapies, such as counselling, and self-help strategies, for example mindfulness.
Anxiety UK is a charity that supports people affected by anxiety. They offer a range of support services, including information and one-to-one therapy.
Consider what you can control
A lymphoma diagnosis and all the ways it changes your life can bring a sense of lack of control. It can help to look for what you do have influence over. You might find some of the following suggestions helpful.
Share only the information you're comfortable with sharing
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.
Remember that you have the freedom to choose which information you share and who you share it with. Try to be honest about what you would like and need from the people around you, including letting them know if you need some space.
Find out about lymphoma
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. Take care not to ‘over-research’, though. It can be overwhelming to have too much information. It’s also important to make sure that the information you are using is relevant to your situation and is from a reputable source.
Your medical team are best placed to give you information about your specific diagnosis. Ask your medical team any questions you have and for them to repeat information if you need them to – they’ll understand that there is a lot to take in and will be used to going over details.
You can also read our information about lymphoma, including about types of lymphoma, treatments, and various aspects of living with lymphoma. We have videos on our YouTube channel, which include talks from health professionals and people with personal experience of lymphoma. Our Information and Support Team is also available if you’d like to get in touch about any aspect of lymphoma.
It can feel daunting to find out about lymphoma. Some people prefer to continue with life without thinking about their lymphoma very often. Although it is also important to acknowledge the reality of the situation, 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.
An approach that some people take is to ask a friend or family member to help with finding out ‘just enough’, however much that is for them. You could ask them to do some research on the things you’d like to know about lymphoma and then summarise what they’ve learnt. They could outline only what you really want or need to know to prevent you from feeling overwhelmed by a large amount of information.
Make lifestyle choices that benefit your physical and emotional health
As well as benefitting your physical health, making healthy lifestyle choices can help your emotional wellbeing. Good diet and nutrition, taking regular exercise, finding ways to relax and to manage stress are all ways of taking control of your life.
You might also find it helps to build structure and routine to your day-to-day life, for example, through daily and weekly schedules.
Talking about how you feel can be of great advantage to your mental wellbeing. Many people find it difficult to talk about emotions, particularly those that are linked to cancer. Some people prefer to talk to someone outside of their family. Our Information and Support Team is here for you if you would like to talk. We also offer a range of support services that may be of interest to you.
For some people, speaking to a counsellor, who is trained to help people explore their thoughts and feelings, is valuable.
Some people find that recording their thoughts provides a good outlet for their feelings. You could do this by keeping a journal, blogging or vlogging (video blogging). Similarly, you might want to express your feelings through art or music. It can be useful to set aside some time in a private space, free from interruptions. Express yourself freely, knowing that what you write or say is only for you and that you have a choice in whether you share it with others. Getting your thoughts and emotions out can help you to make sense of them and to feel calmer and more in control.
Be aware, however, that self-expression and reflection 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 or friend.
Find time for relaxation and enjoyment
Taking time to relax and to do the things you enjoy can help to manage stress and anxiety. You might find the following ideas helpful.
- 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 in going over the past.
- Do enjoyable things: spend time in the company of people or animals who help you to feel good. Make time for hobbies and leisure activities.
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 could 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 with 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 (for example, 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 GP or nurse specialist. They might 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.
You might also be interested in how a psychologist could help you. Psychologists work in different ways to help improve mental health. Some psychologists make mental health diagnoses. The British Psychological Society gives more information about the role of psychologists and has an online search tool to help you find one.
It can be a challenge to re-adjust to life with and beyond lymphoma. Many people call this finding their ‘new normal’.
Watch Kate's video about life beyond lymphoma. This video was created when Lymphoma Action was called the Lymphoma Association. The content is still up to date.
The physical and emotional stresses and challenges of having lymphoma are not to be under-estimated. However, many people go on to experience positive life changes. Some of these are:
- stronger relationships with family and friends
- greater appreciation for life and feeling that life has meaning to it
- being able to live in the present and re-evaluate priorities
- adopting a healthier lifestyle than previously led
- a changed view of self, for example, feeling greater resilience, gratitude, and acceptance
- exploring new possibilities
- feeling more connected to their spirituality, which might include a religious faith.
Researchers have looked into which factors are likely to help in the development of such positive life changes. Findings suggest that these include:
- being able to express your emotions
- having effective ways of managing stress
- feeling supported by family and friends
- taking time to process what you’ve been through and to build it into your personal history and sense of self.
Many people find counselling helpful in processing and making some sense of what they’ve been through.
We offer a range of information and support services. These are available to everyone affected by lymphoma whether you have a diagnosis, or you are a partner, family member, friend or carer of someone with lymphoma. Get in touch by calling 0808 808 5555 or email firstname.lastname@example.org.
The National Institute for Health and Care Excellence (NICE) recommends that your medical team check your physical, emotional and social needs and offers help to meet these. They should ask you about these aspects 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). If they don’t offer this, feel free to ask for it.
To help with the adjustment to life during recovery from lymphoma treatment, the National Cancer Survivorship Initiative (NCSI) has developed the recovery package. Your medical team work with you to identify your physical, social and emotional needs. Although the recovery package is not yet available in all geographical areas, you should still be supported by your medical team. Ask your clinical nurse specialist for information on local facilities and groups that could help.
You might also find the following organisations and resources helpful:
- Every mind matters is an NHS resource that offers free tips, tools and apps to help you to manage and maintain good mental health.
- Macmillan Cancer Support offer information to help you deal with your emotions. Their booklet, How are you feeling: the emotional effects of cancer, is free to download or request a printed copy of.
- Maggie’s Centres offer free practical, emotional and social support to people with cancer and their families and friends.
- The Cancer Survivor’s Companion: Practical ways to cope with your feelings after cancer, Goodhart F and Atkins L. 2013. Piatkus, London. This book offers practical help to help you deal with your emotions after cancer.
- National Cancer Institute produce a free electronic booklet to support people with cancer called Taking time. It is for people who are newly diagnosed with cancer, their family and friends.