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Going home after blood cancer treatment

It is common for people with blood cancer to feel their ‘safety net’ has gone when they are no longer in active treatment

For most people, especially those who have been away from home for a long period, the end of treatment represents a new beginning rather than simply a return to their prior existence.

While many people have the expectation that a return to home after treatment means a return to ‘normal’, most find that their normal has changed and it can take some time to re-adjust into home life.

What you may experience

After the hospital

It is normal to have mixed feelings about leaving the hospital and your treatment team. Some people experience a sense of grief about letting go of the close relationships they have formed. You might be nervous about dealing with physical problems experienced away from the security of the hospital. Normal aches and pains, or coughs and colds during this time may worry you.

For people who have been away from home for a long period, the end of treatment represents a new beginning. It is more than a return to their prior existence. Many people return to the security of strong and supportive family and friends. Family roles may have changed and need to be re-negotiated. Relationships may need to be rebuilt.

It is common to feel that others do not understand the difficult time you may have experienced in the hospital. It is natural to feel that you have changed in ways which separate you emotionally. For up to a year, your focus may move from physical to emotional needs.

While many people have the expectation that a return to home means a return to ‘normal’, most find that their normal has changed. It can take some time to re-adjust into home life.

Returning to ‘normal’

Advances in the treatment of blood cancers have increased the number of people living with their disease. Survival brings its own challenges and opportunities. Many experience times where their disease is under control, and they are free to ‘get on’ with their lives.

Most people look forward to the end of treatment when they can re-enter life and have a ‘normal’ existence. Whilst life may be easier when treatment finishes, it can also be a period of significant change. Roles and responsibilities need renegotiating within the family. Decisions may need to be made about how or when to return to work.

Most people adjust very well after treatment finishes. It is important to remember that adjusting is a gradual process. It may take time for you and those around you to get used to the new situation. Realistic expectations can help to prevent disappointment, anger and frustration.

People cope in different ways when adjusting to life after treatment. There is no right, wrong or easy way to get back to ‘normal’. The idea of normal may need redefining. Some people need time to process recent life experience. This may be alone or through seeking assistance from others. It is good to have a close friend or family member you trust and feel comfortable talking to.

Some people find it useful to talk to others who have been though a similar experience. They understand the complex issues that come up as you adjust to your new life. Relationship or family counselling can help people to move forward in their lives. Others find it useful to share their thoughts and feelings with a counsellor or psychologist. Information and support programs can also be important now.

People report positive outcomes from the experience of living with a blood cancer. These include:

  • a heightened appreciation of life and relationships
  • a new level of personal development
  • increased self-confidence, calmness, serenity and assertiveness.

There can be significant obstacles to communication. For example, when attempts to talk are blocked by loved ones and others who believe it is best to encourage the person to ‘get over it’ and ‘move on’. In these situations, it is not uncommon for people to experience a sense of isolation.

Late Effects

Many people enjoy long and healthy lives after treatment for blood cancer. Sometimes, the treatment can affect a person’s health for months or even years after it has finished. Some side effects may not be evident until years after treatment has ceased. These are called ‘late effects’.

Some people who have chemotherapy or radiotherapy may be at a higher risk of developing other diseases, such as:

These cancer treatments also increase the risk of cardiac (heart) problems, gut problems, and damage to other organs.

Evidence suggests that radiotherapy to the chest at a younger age may increase the chances of developing lung cancer, breast cancer or heart problems later in life. Anthracycline chemotherapy may increase the risk of developing heart problems or leukaemia. Some ways to reduce the risk of developing secondary cancers are:

  • avoiding ultraviolet (UV) radiation from the sun
  • not smoking
  • regular screening for breast cancer (for women).

A late effects plan developed with your treatment team can help. This will detail what you need to have monitored including by whom, where and when.

Fear of relapse

Fear of cancer recurrence is a feeling of dread that the cancer will come back. It involves feeling worried, anxious or fearful that the cancer may return.

This is a normal fear, especially in the first few years after treatment. An estimated 40-70% of people experience a significant fear of recurrence. Although their levels of fear may be low to moderate, it is one of the main reported concerns. It is one of the greatest areas of unmet needs for people diagnosed with cancer.

The fear of recurrence is also a significant concern for family members. It can be reassuring to know that fear of recurrence tends to reduce over time. It is normal to worry more about recurrence at specific times, knowing when your fear may be the strongest can help.

Triggers can be:

  • follow-up medical appointments
  • medical procedures
  • anniversaries of diagnosis or transplant
  • experiencing symptoms like those when first diagnosed

A fear of recurrence can actually be beneficial as it may motivate you to:

  • become better informed about your health
  • seek needed support
  • make and keep follow-up health care appointments
  • change diet and exercise patterns.

If you experience fear of recurrence and begin noticing some of the following signs, this may indicate your fear is becoming a problem and you should seek help:

  • being unwilling to return to a full life because of fear
  • having recurrence as a constant pre-occupation or worry
  • thinking about recurrence first thing in the morning and last thing at night
  • inability to concentrate
  • minor health problems raise a strong fear that the cancer has returned
  • long-term sleep problems
  • reduced/no appetite that lasts for days
  • reduced desire to spend time with friends or participate in pleasurable activities.
Helpful suggestions
  • Re-entry to ‘normal’ life takes time and adjustment. Allow yourself and your family time to get used to being together again. Appreciate that there will be setbacks and challenges.
  • Talk to someone who understands your situation. Perhaps someone who has been through a similar experience to yours.
  • Think about what the next best step is for you. For some going back to work gives a sense of being productive and useful again. For others time to ‘take stock’ or go on a holiday are the best ways to get back on top of things.
  • Understand that your friends or work colleagues may feel uncomfortable discussing your illness and that you may need to ‘break the ice’ first.
  • The support staff at the Leukaemia Foundation will be sensitive to your adjustment needs and are there to offer support at this time. Contact us via phone or submit an online request. We also run regular online support groups and webinars that deal with a variety of post-treatment challenges.
  • You may benefit from counselling. The Leukaemia Foundation support staff, hospital social worker, community nurse, or your general practitioner will advise you on available services in your area.

Living with uncertainty

Tips from a Clinical Psychologist

Last updated on May 24th, 2024

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.