Life after treatment
Returning to ‘normal’
Significant advances in the treatment of blood cancers mean that increasing numbers of people are being cured of their disease. Many others are experiencing long periods where their disease is under control and they are free to ‘get on’ with their lives. However survival brings with it its own challenges and opportunities.
Most people look forward to the end of treatment as a time when they can re-enter life and re-establish a ‘normal’ existence. While for most people life becomes a lot easier when treatment finishes, it is also a period where significant adjustments have to be made. Roles and responsibilities may need to be renegotiated within the family. Decisions may need to be made about how or when to return to work. Relationships may need to be re-established or in some cases re-evaluated as some people begin to look at life from a new or different perspective.
Most people adjust very well after treatment finishes and they go from strength-to-strength with the support and understanding of their families and friends. It is important to remember that adjustment is a gradual process. It may take time for you and those around you to get used to the new situation. Having realistic expectations of yourself and others can help to prevent disappointment, anger and frustration.
People cope in different ways with adjusting to life after treatment and there is no right, wrong or easy way to get back to ‘normal’. The idea of normal may need to be redefined with your recent life experiences. Some people need time to process what they have been through. They may do this alone or they may actively seek out opportunities to do so with other people. It is always good to have a close friend or family member in whom you feel you can trust and talk openly with about your feelings or experiences.
Some people find it useful to talk to others who have been though a similar experience and understand the complex issues that come up as you adjust to your new life. You may find that connecting with others who share a positive perspective on life and their experiences is rewarding. Information and support programs can be important at this time. Many people find it useful to share with a counsellor or psychologist their thoughts and feelings about their experience and how they are currently coping. In this context they are given the opportunity to express themselves openly and honestly, without fear of offending or disappointing the listener. Relationship or family counselling can be of great assistance in helping people to move forward in their lives and successfully work through some of the more difficult issues that may come up.
Many people report very positive outcomes from the experience of living with a blood cancer. These include a heightened appreciation of life and relationships, and a new level of personal development, involving increased self-confidence, calmness, serenity and assertiveness.
There can be significant obstacles to communication when, for example, 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, depression and anger.
What are ‘Late Effects’?
Many people enjoy long and healthy lives after being successfully treated for their blood cancer. Sometimes, however, 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 been treated with chemotherapy or radiotherapy may be at a higher risk of developing other diseases such as myelodysplastic syndrome (a bone marrow disease) and other (secondary) cancers including leukaemia and melanoma (a type of skin cancer). These cancer treatments also have been shown to increase the risk of cardiac (heart) problems, gut problems, and other organs may be affected too.
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. Anthrocycline-containing chemotherapy regimens may increase the risk of developing heart problems or leukaemia. Therefore, it is important that people who have had these treatments minimise their risk of developing secondary cancers and other health problems by avoiding ultraviolet radiation from the sun, not smoking and for women, having regular screening for breast cancer.
After your treatment has finished, drawing up a late effects plan with your doctor or nurse can help you manage any potential late effects you may be at risk of, so you know what you need to have regularly monitored in the future, by whom, where, and when.
Fear of Relapse
Fear of cancer recurrence is a feeling of dread that the cancer will come back or progress in the same or in different part of the body. 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 and although their levels of fear may be low-moderate, it is one of the main concerns and one the greatest areas of unmet needs for people diagnosed with cancer.
This fear of recurrence also is a significant concern for family members. It can be reassuring to know that fear of recurrence tends to reduce over time, but may still be present in the back of your mind years after treatment.
It is normal to worry more about recurrence at specific times and knowing when your fear may be the strongest can help. Times that can be more difficult than others include before follow-up medical appointments; when medical procedures are scheduled; anniversaries (e.g., date of diagnosis, chemotherapy, transplant or end of treatment); special occasions (e.g., birthdays or holidays); and when experiencing symptoms similar to 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; and 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 assistance: 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; and reduced desire to spend time with friends or participate in pleasurable activities.
If your fear of recurrence is affecting you, please advise your medical team and/or contact the Leukaemia Foundation for assistance.
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. Many people return to the security of strong and supportive family and friends. Family roles however, may have changed and may have to be re-negotiated. Relationships may need to be rebuilt away from the hustle and bustle of the hospital.
It is common to feel that others do not fully understand the difficult time you may have spent in the hospital setting. It is natural therefore to sometimes feel a sense that you have changed in ways that may have separated you emotionally from previously close family and friends upon returning home.
While many people have the expectation that a return to home means a return to ‘normal’, most find that their normal has changed and it can take some time to re-adjust into home life.
For up to a year following the end of treatment you may find that your focus moves from your physical to your emotional needs. It is normal to have mixed feelings about leaving the hospital and the treating staff. Some people experience a sense of grief about letting go of the intense and close relationships they have formed, as well as a nervousness about dealing with any physical problems they may experience away from the security of the hospital. You may feel vulnerable and uncertain about dealing with normal aches and pains, or coughs and colds which arise during this time.
In many cases feelings about the diagnosis and treatment may have been put ‘on hold’ during the demanding treatment periodand may now surface and need to be dealt with. There may be an expectation from others however, that everything is over and that there shouldn’t be any remaining distressing emotions to deal with.
- Re-entry to ‘normal’ life takes time and adjustment. Allow yourself and your family time to get used to being together again and appreciate that there will be setbacksand challenges.
- Talk to someone who understands your situation. Perhaps someone who has been through a similar experience to yours.
- Think about what is the best next step 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.
- 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.