OVERVIEW
Unfortunately, sometimes cancer can come back after successful treatment (relapse). This can occur days, weeks, months or years after successful treatment. Sometimes lymphoma or chronic lymphocytic leukaemia (CLL) doesn’t respond to treatment (refractory). Coping with a relapse or refractory lymphoma can be just as hard as coping with your original diagnosis, and sometimes even harder. For more information on what is relapsed or refractory lymphoma and how these are treated, please see the fact sheet “Relapsed or Refractory Lymphoma” on Lymphoma Australia website: lymphoma.org.au/page/1218/fact-sheets
EMOTIONAL IMPACT WHEN LYMPHOMA RELAPSES
When you are told that your lymphoma or CLL has relapsed or refractory, it is normal to feel angry, upset or overwhelmed. Even if your treating team had prepared you for the possibility of relapse, it is still very disappointing news to take in.
Many people say that being told they have relapsed triggers an intense emotional response, similar to how they felt when they were initially diagnosed. Feelings of anger, fear, sadness and anxiety are common, many people even saying that it is more intense the second time around. It can be frightening to think about the possibility of having more treatment, especially if you struggled with significant side effects previously.
You may initially doubt whether you have the motivation and mental strength to go through it all again. But you could find that your previous experience with cancer has given you some skills, knowledge and resources which may help you to cope with the next chapter. For example:
- You know more about your diagnosis, the treatment and prognosis
- You have strategies for dealing with side effects
- You have relationships with your treating team; nurses, allied health & doctors
- You understand the healthcare system, and who can help you with what
- You have an established support network and strategies for stress reduction
WHAT DO I DO NOW?
It can be helpful during this time to acknowledge the need for increased support and assurance from your network. Activities, habits and support services that helped you during your first round of treatment may need to be restarted or increased in order to help you cope again. For example, if you found it helpful to talk to a counsellor or psychologist during your previous treatment, it may be beneficial to reconnect with that therapist now.
Some other strategies that may be helpful include:
- Giving yourself permission to experience your emotions as they arise, including taking time to cry if you feel you need to
- Continuing enjoyable hobbies, or taking up new, relaxing hobbies for example swimming, craft groups or meditation classes
- Joining the Lymphoma Australia private Facebook support group for people with lymphoma or CLL ‘Lymphoma Down Under’ and connecting with others in similar situations
- Learning to meditate and practice mindfulness. There are many free smartphone apps for this, or you can look into whether there are some meditation groups in your local area
- Making time for exercise as often as possible. Even 5-10 minutes a day can significantly reduce stress levels during treatment (see Lymphoma Australia Fact sheet: ‘Exercise and Lymphoma’ https://bit.ly/2QorAbw).
- Making healthy food choices and including more fresh fruits and vegetables. Ask for a referral to a dietitian if you aren’t sure about what your dietary requirements are
- Listening to your body and understanding when it needs rest and when it needs activity. Keeping a journal or diary can greatly assist with this strategy
- Creating a sleep schedule and allowing time for rest and relaxation (for more information, see the ‘Sleep Management and Lymphoma’ fact sheet on the Lymphoma Australia website: https://bit.ly/2rZbPi6
It is important to understand that every person who receives a Lymphoma diagnosis has a unique physical and emotional experience. What may ease the stress and anxiety for one person following relapse may not work for the next. If you are struggling with significant levels of stress and anxiety at any stage in your experience, please don’t hesitate to reach out (Lymphoma Nurse Support Line – 1800 953 081, or email nurse@lymphoma.org.au).
