All treatment plans incorporate a planned end point, at which time active treatment will be stopped if the disease is under control. The term “end of treatment” does not mean no further contact with the treating team – a plan will be developed that maps out regular follow-up over the coming weeks, months and years. It may mean, however, contact with your child’s doctor and health care team is not as frequent as it once was.
The end of the formal treatment period can be both a positive and difficult time for families.
Positive feelings expressed by parents during this time:
- Excitement their child no longer has to endure the hardships of treatment including extended stays in hospital.
- Elation at not being tied to a restrictive treatment protocol.
- Looking forward to resuming normal life.
- A sense of renewed hope and reassessing the priorities of life.
Negative feelings expressed by parents:
- Living with the fear of relapse or further complications.
- Fear of being abandoned by the hospital and not having easy access to support services.
- Survival guilt – knowing their child completed treatment successfully when others may not have.
- Frustrated that other people think their child is “cured” just because they are no longer on active treatment.
Many parents report they find it challenging to resume a ‘normal’ life without continually thinking about what they have just been through and the uncertainty of their future. While there are no easy answers, many parents have found the following strategies to be useful at different times:
- Self care is important. Taking regular time out and recognising your needs may be different to that of your partner and children.
- Trying to focus on the present - the positive aspects of your child’s life and literally taking one day at a time.
- Maintain the contacts and friendships made with other parents/families at the Hospital, simply because they understand. It may help to share common feelings, thoughts and fears when confronted with the completion of treatment.
- Seek professional help to work through feelings and issues as they arise. This support can be provided by the psychosocial team at the Kids Cancer Centre.
When is it time to seek professional help?
Seek support from a professional if negative feelings or thoughts substantially interfere with your daily functioning and you find it difficult to get through the day or night (eg sleep disturbance). Feel free to discuss this with your Social Worker, Outreach Nurse or GP.