A diagnosis of a blood cancer will have a high emotional and physical impact. Anxiety can be overwhelming at times, and initially many people feel a sense of loss of control and uncertainty about the future. It is important that you talk about how you feel with someone you trust or feel comfortable with. This might be a friend or relative or it might be your doctor or nurse. Information can often help to take away the fear of the unknown.
The best source of information is often your doctor or nurse. He or she has the most information about your particular circumstances and should be able to give you the most accurate information about your prognosis or treatment. Some people find it useful to talk with other patients or their family members who understand the different feelings and issues that may come up for people living with cancer.
Anxiety and depression
If you are feeling anxious, down or sad most of the time, it is important that you speak to someone like your doctor and the other health professionals caring for you. These people are concerned about both your physical and mental health and will be able to suggest ways to help you and your family gain a stronger sense of control in the present situation.
You may benefit by talking with a counsellor or another mental health professional who can assist you to identify and use healthy coping mechanisms at this time. Counselling and anti-depressant drugs can also be very useful for some people.
It is worth remembering that most people feel very tired and fatigued during and for some time after their treatment. Feelings of tiredness and fatigue can contribute to feeling anxious and depressed. Try to maintain a manageable daily routine, and set yourself some realistic goals for each day and for the future.
Relaxation and exercise
Feeling like you have no energy can be very frustrating, especially if you are used to leading an active and busy life. Getting out into the fresh air and doing some gentle exercise is important for your general feeling of wellbeing and may help to give you more energy. It is easy to underestimate the level of tiredness and fatigue you may be feeling so you should take care in the amount of exercise you do initially. Your doctor will be able to advise you about this.
Talk to a physiotherapist or exercise physiologist about an appropriate program of exercise for you. Incorporating a sensible balance of relaxation and exercise in your daily routine may help to increase your sense of wellbeing and control.
Most people feel better when they are relaxed within their body and mind. Many of us lead busy lives and have to learn how to relax. Relaxation techniques such as meditation and visual imagery can be very useful coping techniques that help you to gain more of a sense of control.
Ask your doctor, nurse or social worker about any relaxation programs which may be run at the hospital. Alternatively they may be able to advise you where you can go for more information.
Loss and grief
A diagnosis of blood cancer poses many challenges both for the person diagnosed and their loved ones. Many adjustments have to be made as people are faced with unplanned changes and upheavals in their lives. Naturally people fear for the future and the potential or real loss of their lives as they once knew them, loss of life plans, loss of self-esteem, loss of relationships and even loss of employment. Grief is a natural reaction to this sense of loss and it is normal to experience grief at various stages along the way. Over time and with help, many people learn to cope with any losses they experience as they and their families make the necessary adjustments and plans to move forward in their lives.
Loss of a loved one
The death of a loved one is one of the most challenging losses we face in life. The following information is provided to help people who are coping with the loss of a loved one and the profound sense of grief this brings. People react to grief in different ways. Some of the feelings that come up can be very intense and at times overwhelming. It is normal to feel any of the following, sometimes at the same time:
- shock and disbelief
- numbness and a sense it is not real
- a sense of being overwhelmed/hopelessness
- loss of life plans
- loss of optimism
- fear and/or anxiety
- guilt or regret
- a sense of unfairness or bitterness
- a heightened concern about your own mortality
- a sense of relief.
Physical reactions including nausea, sleeplessness, chest pain, weight loss or gain are also common, especially in the early period after losing someone you love.
It is normal to have any or all of these feelings and reactions to loss. However, there are some special circumstances that may require extra help. These include:
- the loss of a child
- multiple losses at one time
- a sudden or unexpected death
- the loss of a parent in a young family
- where there is a previous history of drug or alcohol abuse
- where there is a previous history of anxiety and/or depression
- severe or continuing depression
- grief accompanied by thoughts of suicide.
Anyone expressing suicidal thoughts needs to be assessed by a relevant health professional, such as a doctor, urgently. It is particularly important to seek help if you are experiencing any of the situations listed above.
Grief takes time
Processing grief takes time. Coming to terms with a significant loss can take many years. Unfortunately, there is little understanding of this process and most bereaved people experience the pressure to ‘get over it quickly’. To deal with this pressure you need to know, and let those close to you know, that:
- you will feel better in time. During the initial stages people can worry that they will never see ‘the light at the end of the tunnel’.
- these feelings will slowly pass. You do not ‘get over’ the loss of a loved one. With help and in time you will learn to live with the loss. The memory of your loved one will always be a presence in your life.
- the work of grief is about building up a new life. This will happen, but it does take some time.
- Feelings have a life of their own. The most helpful healing response from family and friends is to allow the grieving person to express their feelings in their own way and for as long as they need.
- Crying and laughter can have special healing powers.
- It is important to look after and nurture yourself at this time, to eat well, and exercise regularly.
- Reading books on grief and hearing the stories of others can be reassuring and helpful.
- Grief goes in cycles and it is normal to revisit intense feelings on special times of the day, e.g. at meal times or special days of the year such as festive occasions.
- Distractions may help such as a short holiday, reading your favourite book, playing CDs, going to a suitable movie or a night out with friends.
The grieving family
The loss of a loved one may have an impact not only on the immediate family but also on a wide circle of extended family and friends. Everyone involved will be dealing with their own feelings and this in turn will affect how they respond to each other.
In your own close family, remember everyone is grieving differently in their own time frame. Children especially will deal with their loss in their own way, depending on their age, their perception of the world, and their development level. It is important to maintain open and honest communication with children during this time. It is healthy for the family to grieve openly together when possible, to talk about how each family member is feeling and especially to talk about the person who has died.
The need for support
It is common to experience an emotional void after the death of a loved one. This is a time when the expression of support and caring from others is essential. Demonstrating understanding and commitment to the grieving person will be greatly appreciated. Offering support is not always easy. Some people can lack confidence and be unsure as to how to respond to the grieving person. Tensions and unresolved conflicts can arise and interfere with giving or receiving the support that is necessary at this time. It is very common for a bereaved person to feel that they are being avoided by family or friends who are unsure of what to say or how to react.
- Emotional and social support is essential during this time.
- The most effective way of demonstrating support for someone who is grieving is to just be there to listen.
- Understanding when to respect someone’s personal space and their need to be alone is also an important aspect of providing support.
- Other people who have had a similar life experience may be an important source of understanding and support.
- Tears are a healthy and normal part of expressing grief and other intense emotions.
Counselling and support groups
Individual and family bereavement counselling plays an important role in helping people to deal with grief and loss. During bereavement counselling many difficult emotions can be explored in a safe and supportive environment. Here you are given the emotional space to talk about ‘real’ feelings without the pressure to ‘get over it quickly’. In addition, you are given useful information to help you understand the experience of bereavement.
Support groups are also important at this time. For many they provide important opportunities for mutual support, understanding and information. Sharing warmth, caring and laughter with members of the group can lead to a special bond with others who are facing similar challenges. Grief becomes normalised and you will come to accept and understand the many intense emotions shared by others who have lost a loved one.
Developed by the Leukaemia Foundation in consultation with people living with a blood cancer, Leukaemia Foundation support staff, haematology nursing staff and/or Australian clinical haematologists. This content is provided for information purposes only and we urge you to always seek advice from a registered health care professional for diagnosis, treatment and answers to your medical questions, including the suitability of a particular therapy, service, product or treatment in your circumstances. The Leukaemia Foundation shall not bear any liability for any person relying on the materials contained on this website.