Grief and bereavement

This information is about the emotions you might have as you, or someone you love, comes towards the end of life. It is also for family and friends of someone who has died from lymphoma.

We have separate information about how lymphoma can lead to the end of life, stopping active lymphoma treatment, and about physical changes towards the end of life. You might also be interested in our frequently asked questions about lymphoma and the end of life. 

We know that reading this might trigger powerful emotions. Our Information and Support Team are here to support you.

On this page

What is grief?

What does grief feel like?

Feeling very low (depression) and grief

How can I help myself?

What is grief?

Grief is an emotional response to significant loss. For some people, this is felt as intense sadness and a sense of sorrow and loss. However, people experience it in different ways. Things that are personal to you can also have an impact. For example, your culture, any spiritual or religious beliefs, and previous experiences of loss.

You might feel a sense of loss at the point of diagnosis, or it might come later. Examples include grief for:

• your health, changes to your body and the way you look – if you are the person with lymphoma
• your day-to-day routine and any activities you might be unable to continue with, at least for a while
• the possibility of having to change your future plans.

If someone close to you has lymphoma, you might also experience grief before the person dies (anticipatory grief). This can happen as you start to prepare yourself mentally and emotionally for them not being there.

I started experiencing anticipatory grief in advance of my mum dying quite early on – which many other people seem to experience, but perhaps don’t talk about it so much.

Adam, who cared for his mum

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What does grief feel like?

Grief can feel different to different people, and it might change over time. Some people say they go backwards and forwards between feelings – for example calm, and overwhelming sadness. 

You might hear about ‘stages of grief’, based on the work of the Swiss psychiatrist, Elizabeth Kübler-Ross. Based on her conversations with over 200 people, she outlined some of the feelings people often have towards the end of their life. These ideas are now being used more widely. This includes helping to deepen understanding of the emotional pain someone might feel before (in anticipation of) a loved one’s death.

Sadness is very common. However, if you feel very low and this continues over time, it could be a sign of depression, for which there is support available.

There might also be times when you feel angry, numb, shocked or agitated. You might have difficulty concentrating, and in carrying out of your usual day-to-day activities. 

Grief can also affect you physically, for example, by causing:

• aches and pains
• changes to your appetite
• difficulty sleeping
• dry mouth
• feeling ‘empty’ or hollow in your tummy
• feeling ‘tightness’ or heaviness in your chest or throat
• low energy and motivation.

Below, we outline some of the feelings that might come with grief:

• shock and disbelief
• anger
• feeling alone
• longing
• fear
• regrets, wishes and guilt.

Shock and disbelief

If you are the person diagnosed, knowing that you are coming towards the end of your life can be a huge shock, even if you’ve been unwell for some time.

If someone you love is dying, or has died from lymphoma, you might at first feel a sense of disbelief and numbness, as though it’s not really real. This often happens when the person first dies, but it can go on for some time.

Shock and disbelief can be part of mental processing (‘getting your head around’) the news.

Anger

You might feel angry – perhaps towards the lymphoma itself or the health professionals looking after you or the person you love. 

Perhaps you feel angry because your beliefs and outlook on life have been deeply affected. Some people describe their worldview as having been ‘shattered’ – they feel angry in general and at the unfairness of the situation. 

If someone close to you has died, you might feel angry with the people around you for continuing with their day-to-day lives. Some people feel anger towards themselves – they think of things they wish they had or hadn’t said or done in the past, which can lead to regret and guilt. You might also feel angry at the person who has died for leaving you. This can be difficult to acknowledge, but it is fairly common and can arise from such emotional pain.

Feeling emotionally alone

You might feel very alone if you or someone you love is nearing the end of life. It can seem as though no one can really understands what you are experiencing.

Although you might want to withdraw from those around you, emotional connection can be very helpful.

Consider talking to people about how you feel. Some people are uncomfortable with painful emotions, because they worry about causing further upset. You could tell them that it’s OK to ask how you’re feeling and to talk about what you are going through. Explain that you’re having a very difficult time and that, if you become emotional, it’s not because of something they’ve said or done – the emotions are already there. There might be times when you don’t really know what you’d like from family and friends – you might just want them to be with you.

You could also find a sense of connection through support groups, counselling or speaking to a member of our Helpline Team.  

If someone close to you has died, others might avoid talking about the person to you because they don’t know what to say. They might say clichéd things such as ‘time is a healer’. This can feel insensitive, even if you know they’re trying to help. Some people describe feeling ‘cut off’ from those around them.

Longing

If you, or someone you love, are coming towards the end of your life, you might feel a great sense of wishing or longing for a return to how things used to be.

If you are dying, you might yearn for the life you had, your previous good health, and for more time to live. There might be things that you wish you had or hadn’t done, and you might long to re-live parts of your life.

If someone close to you has died, you might long to be with them, perhaps wishing for more time together. You might dream about the person or think of things you’d like to tell them, only to remember that they are no longer here. Similarly, you might see someone else who looks a bit like the person, or walks in a way that reminds you of them. This is a common part of grieving, as your brain adjusts to the fact that the person has died. Some people find this upsetting, while others feel some comfort from it. 

Fear

Death is an unknown that many people feel frightened about. You might also feel anxious about the possibility of death being painful. 

If you are the person who is dying, you might worry about loved ones after you have died. 

Thinking about what reasons are behind your fear can help to lessen its intensity. You might want to talk to someone close to you, a member of your medical team, or a counsellor. Some hospitals and hospices offer grief and bereavement services that you could consider accessing.

Regrets, wishes and guilt

You might go over things you feel you should or shouldn’t have said or done – for example, life choices you made, or a particular conversation or disagreement. 

Some people think in terms of ‘if only’. For example, ‘if I can become well again, I’ll lead a healthier lifestyle’ or ‘if the person I love could be well again, I’ll be more selfless’. This is sometimes called ‘bargaining’ – making deals or agreements with ourselves, or a higher being, such as a religious leader or creator. It can arise from wanting to believe that you can do something to make the situation better.

If someone close to you has died or is dying, you might feel as though you didn’t do enough for them. Very often, the reality is that, however much you did, you could not have changed the outcome. Consider, ‘what would have been enough?’. You could consider all the things you did for the person, both practically and emotionally. If possible, reassure yourself that you did enough.

We sometimes hear from family and friends of someone with lymphoma that they feel relieved when the person dies. This is very common and often comes from knowing that the person is no longer having to cope with their lymphoma. Having a break from caring for someone who has lymphoma can also bring relief. These are natural, human emotions. Although painful, it can be helpful in the long-run to allow yourself to feel whatever you’re feeling.

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Feeling very low (depression) and grief

Low mood is very common following a bereavement. However, some people feel very low for a long time. 

Depression can affect people in different ways. As well as low mood, you might, for example, feel:

• agitated, anxious or worried
• a lack of energy and motivation
• low appetite
• tearful
• that you’ve lost interest and enjoyment in things
• that it is difficult to get restful sleep
• unable to focus and make decisions.

The NHS website has more information about depression and sources of support. They have a self-assessment online tool that has questions to help you identify whether you could be feeling depressed.

Ongoing grief

For many people, feelings of sadness and low mood gradually ease as part of the natural grieving process. However, when intense grief continues for an extended period (typically beyond six to twelve months), it might be called ‘prolonged grief disorder’ or ‘complicated grief’. This type of grief is more likely to happen after a sudden, traumatic, or deeply distressing loss.

These terms describe grief that significantly affects emotional wellbeing, day-to-day functioning, and the ability to find meaning or joy in life. Symptoms might include persistent longing for the person who has died, difficulty accepting their death, emotional numbness, and withdrawal from everyday activities.

‘Prolonged’ or ‘complicated’ grief are terms sometimes used to describe grief that significantly affects emotional wellbeing, day-to-day functioning, and the ability to find meaning or joy in life. Symptoms might include persistent longing for the person who has died, difficulty accepting their death, emotional numbness, and withdrawal from everyday activities. While not always formally diagnosed in the UK, recognising these signs can help individuals seek the right support.

Anne Castle, Bereavement Training Lead 

Cruse bereavement support have more information and resources to support people experiencing complicated or prolonged grief.

What shall I do if I am experiencing depression?

Let someone know if you think you might be experiencing depression or unresolved grief. Your GP is often a good person to approach and can suggest sources of support to help you cope.

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How can I help myself?

There are things you can do to support yourself emotionally and practically during this difficult time. We’ve outlined some suggestions below that may help you feel more supported and connected. You’ll also find sources of support listed in end of life, bereavement and grief section of our useful organisations webpage.

Please remember – you don’t have to face this alone. Support is available, and even small steps can make a meaningful difference.

Anne Castle, Bereavement Training Lead 

Let yourself feel however you’re feeling

Your grief is real and valid. Recognise that people respond to loss in different ways. Some people block out or push their feelings aside. Others might try to numb emotional pain through behaviours that offer short-term relief but can be harmful in the long run. For example, by using alcohol or drugs, or taking physical risks. These responses often reflect deep distress, and it's important to know that support is available.

As painful as loss is, gently acknowledging your emotions can support long-term healing. Marie Curie has information about having difficult conversations about death and dying, which can be an important part of processing grief. Sue Ryder also has resources to help you cope with grief.

Find ways to express your grief

There can be a huge amount to process when you're grieving. Talking honestly with someone about how you feel can be a helpful way to start. This could be a family member, friend, or, if you have a religious faith, someone from your faith community. Some people find comfort in connecting with others who have experienced a bereavement, through support groups or online forums. 

If you prefer to speak to someone you don’t know, our Information and Support Team can listen to you and help you to find support.

You could also express yourself creatively, for example, through art or music. Some people write or speak out loud to the person who has died. This can be a way of feeling connected to the person, as well as expressing emotion. 

You might also choose to get support through counselling. Sometimes, specialist bereavement counselling is available through a local hospice. You can search online for your nearest hospice or ask your GP if they can help you to access such support.

Looking after yourself when you’re grieving

Taking care of yourself is an important part of supporting overall health and wellbeing, especially during times of grief. This includes eating nourishing food, getting enough rest, and seeking help when you need it. Support might be practical, emotional, or both. It can include help with day-to-day life, or simply having someone to talk to.

Marie Curie and Sue Ryder offer guidance on self-care for those who are grieving the death of a loved one. While this is aimed at people who are bereaved, many of the suggestions are also relevant to those coming to accept the loss of their own life.

Even small acts of self-kindness can help you feel more grounded and supported. You don’t have to face this alone – help is available.

Anne Castle, Bereavement Training Lead 

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