As well as physical well-being, a blood cancer diagnosis threatens a person’s overall enjoyment of life. In past years, doctors focused on treating the cancer as effectively as possible, and a patient's quality of life often was overlooked. This is beginning to change. Many health care providers are grappling with the challenge of helping patients and survivors maintain or regain a sense of well-being.

Surviving blood cancer is different from many other health issues, in that recovery may not be the end of the cancer journey. Some people may live with cancer as a chronic condition, requiring ongoing treatment. Others may go into long-term remission and will move on to lead normal lives, reporting few or no side effects.

However, treatment for blood cancer can also be very toxic, leaving the patient with unique health needs that require lifelong surveillance and evaluation. Furthermore, many patients report that recovering from the social and emotional trauma of the disease can take longer than recuperating from some of the treatments.

Psychological, social, emotional, and spiritual impacts sometimes can be difficult to separate from the physical effects because they can be closely intertwined.

They may include:

• Fear of relapse
• Anxiety and depression
• Grief and loss
• Body image and self-esteem
• Spiritual effects
• Survivor guilt
• Social impact
• Relationships
• Re-entering life and the workplace

After Finishing Treatment
Some patients have a feeling of isolation once treatment is finished. This is often described as the loss of a security blanket or safety net. Many patients may feel anxious about stopping treatment and uncertain of how effective the treatment was.

Finding a New ‘Normal’
Regaining a sense of normality and coming to terms with a new or possibly changed outlook on life can be challenging. A patient may be apprehensive about returning to work or education, which can include dealing with colleagues’ reactions or finding new employment. For some people, this change in outlook presents an opportunity to travel or become involved in new activities.

Fear of Relapse
Fear of relapse and anxiety associated with follow-up appointments is experienced by the majority of cancer survivors. Even if it has been years since a patient was successfully treated, no one, not even the haematologist, can be sure that the cancer will not return. At some point, all patients have to find a way to live this fear of relapse.

Relationships with family and friends
Survivors have differing experiences with their family, friends and partners once treatment is finished. Some do not experience any changes while others experience increased family closeness and others encounter difficulties in their relationships. Understanding and realising that different people will react in different ways is important. Open and honest communication is crucial.

Physical Impacts of Treatment

• Fatigue
  Physical, mental or emotional fatigue after finishing treatment is quite common. The duration and intensity will vary but it is important to find ways to cope, such as through exercise and meditation.
• Sexuality/Relationships
  Changes in body image and self esteem can occur as a result of treatment and may impact relationships. Physical changes from the cancer or treatment can be difficult to come to terms with. A decrease in sexual activity and anxiety about sexual performance may occur.
• Fertility
  The effects of treatment on fertility vary widely. Understanding options for fertility preservation is important and coping with potential infertility by talking with experts is critical.
• Menopause
  Onset of early menopause is a potential side effect of some cancer treatments. Hormone replacement therapy may need to be considered to prevent side effects such as osteoporosis.
• Late effects
  These will vary depending on the type of cancer and treatments. Discussing a long term care plan will ensure that any long term effects are managed.

Surviving Survival
There are no guidelines for how to survive survival. Many of these impacts may come and go and play different roles at different times throughout the cancer journey. Ways for coping with the changes associated with survivorship may include completing goals (e.g. finishing a degree, travelling), joining groups, relying on faith/spirituality, moving forward, or finding a new appreciation for life and meaning of the cancer experience.

For further resources and assistance, please talk to a Support Services Coordinator at the Leukaemia Foundation by contacting 1800 620 420.

The following websites may also be useful:

Cancer Survival Toolbox - www.canceradvocacy.org/toolbox

Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers - www.survivorshipguidelines.org

Survivorship Care Plan - www.oncolink.com

Survivorship Guide and questions you may have - http://www.mskcc.org/mskcc/html/65801.cfm

Information is also available from the following Late Effects Clinics:

Peter MacCallum Cancer Centre, Victoria. Contact Ms Priscilla Gates on 03 9656 1111

The Queen Elizabeth Hospital, South Australia. Contact Ms Alison Keenan on 08 8222 6632