A diagnosis of lymphoma or chronic lymphocytic leukaemia (CLL) can be a very stressful and emotional experience. It can be difficult to manage the range of emotions that can occur before, during and after treatment. It will take some time to come to terms with everything you have been through and manage any side effects of treatment you may be experiencing.
Many people living with lymphoma or CLL say that life after diagnosis is permanently changed. The physical and emotional impacts of the disease and its treatment may come and go during the different phases in the cancer experience, but do not necessarily disappear after someone completes treatment or receives news they are in remission.
While most people with lymphoma or CLL will require treatment at some point, there are situations where treatment may not be required for a period of time, or treatment may not cause obvious side effects (i.e. hair loss). In these situations, friends and family members may comment on how “well” you look despite feeling unwell on the inside. While these comments generally come from a good place, it can be frustrating to hear this. Practicing open and honest communication about how you’re coping can be very helpful. People also find that seeking some emotional support and advice from a psychologist or counsellor can be especially helpful.
MANAGING YOUR EMOTIONS
Commonly, people describe their emotional wellbeing as an undulating path where feelings of stress and anxiety may increase and decrease intermittently. While certain chapters of the cancer journey may generate excessive stress, many people with lymphoma benefit from creating life-long strategies to support their emotional well being.
Creating a network of supportive people around you can greatly assist with stress management and emotional well being. Support networks often look different for each person, but commonly involve people who support you in emotional or practical ways.
Your support network may consist of:
- Family members, spouses or, parents
- Friends
- Support groups, online or community-based
- Other patients who you may meet during treatment
- External support services such as psychologists, counsellors, social workers or spiritual care workers
- Lymphoma Australia online private Facebook group: Lymphoma Down Under
Reaching out to the members of your support network when you’re experiencing high levels of stress and anxiety can be helpful. A chat over coffee, a walk around the garden or a drive to shops can all be helpful when you’re in a state of distress. Often, people want to offer support to you, but aren’t quite sure how. Asking others to help with transport to appointments, some light household cleaning or even asking a friend to cook a hot meal can be helpful options while you’re not feeling well. (See “Gather My Crew” website: gathermycrew.org.au)
SELF-CARE
When we consider the additional stress which a diagnosis of lymphoma or CLL can place on our lives, it is realistic to consider that we may need extra time for self-care activities in order to cope (see ‘Self-care and lymphoma’ fact sheet). It is also important that carers of people with lymphoma regularly take time for self care. For more information on this, see the ‘Caring for someone with lymphoma’ fact sheet via the Lymphoma Australia website.
Some examples of self care 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 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’)
- 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 (see ‘Nutrition and lymphoma’ fact sheet)
- 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
- Regularly setting aside time for safe complementary therapies such as massage, acupuncture or reflexology (for more information see the ‘Complementary and Alternative Therapies and Lymphoma’ fact sheet)
- Creating a sleep schedule and allowing time for rest and relaxation (for more information (see ‘Sleep Management and lymphoma’ fact sheet).
WHEN YOUR LYMPHOMA DOESN’T REQUIRE TREATMENT STRAIGHT AWAY
There are some forms of lymphoma that are slow growing (indolent) and doctors may suggest a plan of ‘watch and wait’ or active monitoring rather than giving treatment for lymphoma straight away. It refers to a period of time when you have no treatment but attend for regular check-ups. This type of treatment approach is most often used in people who are diagnosed with indolent lymphoma and have no symptoms or other risk factors that require immediate treatment. For more information see the ‘Understanding Watch and Wait’ fact sheet on the Lymphoma Australia website.
‘Watch and Wait’ may initially cause distress to some people as it may seem a risky or passive approach to a serious disease. Discussing your concerns with your treating team may help. But if you are finding it very hard to cope with being on ‘watch and wait’, make sure you let your doctor know and ask what options there are for support.
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
RESOURCES AND SUPPORT
