Coping with a blood cancer

Feelings you may experience

Everyone copes differently when they hear the news they have blood cancer, and there is no right or wrong way to cope.

How you cope can depend on a number of things which include:

• beliefs about your ability to cope
• the meaning you place on your illness
• your perception on how much support you have
• how you’ve coped with previous life events or stressors
• whether you’re typically an optimist or a pessimist
• the physical effects of your illness

It’s important to remember that not everyone will be influenced by these factors, and some people will be affected by all of none of them.

Sometimes, people find that dealing with a blood cancer diagnosis makes them feel stronger than before and that it puts everything into perspective. Some people say that they learn to appreciate things in life that they may not before and that they see things in a new light. Everybody is different and if you don’t feel like this, it doesn’t mean there is anything wrong with you. Similarly, if you feel positive about the situation, this doesn’t mean that you’re in denial and ignoring your illness. You don’t need to be serious all the time. You’ll find your own way to cope.

Feelings you may experience after treatment

Many people experience a wide mixture of emotions after treatment and everybody will cope differently.

The end of treatment involves another series of adjustments as you come to terms with what you have been through and you start to think about your life moving forward. Here are some common feelings some patients may experience after treatment:

Isolation and abandonment

Many people say that they expected to feel elated once treatment ends, but what they actually experience is an ‘anti-climax’ and a feeling of abandonment. Even though people may have struggled with the effects of treatment and/or with being in hospital, when treatment ends they often describe feeling isolated because they have grown used to seeing hospital staff regularly and seeing people who understand what you’re going through.

Uncertainty

For some patients, it is the uncertainty associated with the threat of disease relapse or progression that is anxiety provoking. After treatment and close monitoring, you may feel as though nothing being done to keep the disease at bay, which can lead to more anxiety about relapse.

Loss of independence

Adjusting to the transition from hospital to home after a lengthy inpatient stay can often be particularly difficult. This is partly because, to some degree, you will have become institutionalised in hospital, meaning that many things will have been done for you and you will have lost some of your independence.

Some people describe feeling like they are a ‘stranger’ in their own home, that they don’t belong somehow, or that they notice that things have been done differently since they’ve been away. It might feel as though your usual role within the home has been lost or taken over by someone else; this can include your parenting role.

Coping when you’re not receiving treatment

Some people will not need to start treatment when they are first diagnosed. Instead, they will be monitored by their medical team and will be given treatment when it is thought to be appropriate and necessary. This period of monitoring is often described as being on ‘watch and wait’ or active monitoring. If you are in remission after having had treatment the process of follow-ups and monitoring could also be described as ‘watch and wait’. Whichever category you fall into, the uncertainty about whether or how your disease will progress or relapse is worrying and anxiety provoking. You might feel helpless and out of control, as you did when you were first diagnosed.

There are many coping mechanisms and strategies, which can help you to manage your emotions and feel more in control and less overwhelmed.

It’s normal for your emotions to become overwhelming but there are ways to manage this. Coping mechanisms are a way of managing your feelings to put you in the right frame of mind for treatment and dealing with your blood cancer.

Self Compassion

Being diagnosed with blood cancer and going through treatment is a major life event, and it isn’t easy. The emotions you may feel are a valid response to your situation and are normal, appropriate and acceptable – not a sign that you are negative, over-reacting, weak or have a mental illness.

Whilst talking to others is a good place to start, it is important that you validate your own feelings and that you treat yourself with empathy and compassion – just as you would a close friend or family member.

Achieve Balance

Processing what is happening to you, rather than ignoring it, is useful and necessary because it helps you to make sense of things and to adjust. It includes internal reflection (thinking about your situation privately) as well as talking to other people about your feelings and your concerns. As human beings we have a strong tendency to look for meaning and after a blood cancer diagnosis, there is a increased tendency to ask questions when there may be no answers e.g., ‘Why me?’

Ideally, you should try to strike a balance between allowing yourself time and space to think about your illness and periods of time when you think less about your difficulties, concentrating more on the ‘here and now’ and things in your life that you enjoy.

Too much focus on your illness can be exhausting and distressing and prevent you from functioning normally or enjoying life. Similarly, not addressing it at all could be a sign of denial and is not helpful either. It’s important to strike a balance.

Managing thoughts

The mind can have a profound effect on your emotions. When you are ill, many of your concerns will be reasonable and these should not be dismissed as irrational. However, if you dwell on extreme, ‘black and white’ negative thoughts, inevitably you will feel more distressed and could leading to more anxiety, depression, tension and avoiding enjoyable things.

It can be helpful to write thoughts down and then to ask yourself whether they are facts or opinions. Sometimes arguing with your thoughts can be exhausting and the best thing to do is take a break from thinking. Things that help with managing your thoughts  are actively doing things you enjoy, relaxation techniques, distractions activities and practising things like yoga, mindfulness or meditation.

Physical activity

When you are experiencing a range of intense feelings and emotions, and of course, when you are ill, you may not feel like doing much physical activity. But it is important you remain fit, active and socialise where you can; exercise and social activities are a great way to help control the intensity of some of your feelings.

This is because when you exercise, endorphins get released into your system. These are the body’s natural painkillers and antidepressants. When you see other people and engage in things you enjoy, life has an increased sense of meaning, or pleasure and reward.

Don’t push yourself too much, though. Listen to your body, but do try and do something physical, even if it’s a more gentle walk, it can help.

Relaxation techniques

Some people find that complementary therapies help them to relax and cope with some of the emotions they are experiencing. Relaxation techniques such as mindfulness, meditation, yoga, and hypnotherapy are just a few that may help. Having a massage or reflexology may also help you feel better.

Some cancer centres such as Maggie’s may have therapists who can help with relaxation techniques. If you are going to try a complementary therapy, it’s important that they are properly trained and qualified. There is information about this is in our complementary therapies section.

Hospices can also help cancer patients, not just people who are seriously ill or at the end of their life.

They can offer symptom control, psychological support and a range of complementary therapies.

Visiting a hospice for day therapy is usually free and may give you the opportunity to meet people going through a similar experience. Your GP or hospital doctor can refer you to a hospice if this is something you’re interested in.

It’s important to talk

Talking to others after a diagnosis of a blood cancer can be hard. But opening up about your feelings can help you to cope.

Some people may want to put on a brave face and do not want to feel like a burden. Others do not talk about their feelings to protect their loved ones from worry. It can be lonely for everyone involved if you do not open up about how you are feeling.

It is amazing how talking about your worries can make you feel better but it is important that you talk to someone you trust are comfortable opening up to, but if you find it hard to talk to people close to you, tell your medical team or GP as they may refer you to someone who can help such as a psychologist or counsellor. Speaking to a specialist about your feelings does not mean something is seriously wrong. They are professionals, trained to help you manage your feelings.

Talking things through can really make a difference to how we feel. Talking therapies such as cognitive behavioural therapy (CBT) are individual or group sessions that help you to better understand your feelings through talking.

There are many benefits to talking about your feelings and it will help you to:

• stop bottling them up and going over things in your mind
• understand your feelings a bit better
• feel closer to other people by involving them in what you’re going through

Leukaemia Care support groups

You may find it useful to meet with and chat with others who are facing a similar situation as you’ll start to realise that other people are experiencing the same thoughts and feelings as you.

We run and co-ordinate many support groups for patients and their families affected by any blood cancer including leukaemia, lymphoma and myeloma, so you can share information and experiences with other people in your local area.

Some of our groups are for a specific blood cancer, but the majority are general haematology groups that welcome anyone affected by any blood cancer.

View the full list of support groups