A diagnosis of lymphoma or chronic lymphocytic leukaemia (CLL) can be a stressful and emotional experience. There is no right or wrong way to feel after you have been diagnosed, but it can be helpful to know that you are not alone. This page addresses some common questions and concerns that can arise after being diagnosed with lymphoma
How might I feel after my diagnosis?
A diagnosis of lymphoma or CLL is often upsetting and confusing for the patient, their families and loved ones. It is common to experience a state of shock and disbelief after a diagnosis of lymphoma or CLL. It can be normal to feel angry or upset with those around you, or even yourself. Many people describe initially feeling angry with their doctors, specialists or nurses for not picking up on their illness earlier. As well as shock and anger, other feelings can include high levels of anxiety, sadness and fear about how the diagnosis will impact their lives.
After an initial lymphoma or CLL diagnosis, patients may come up with a series of important questions.
- What does my diagnosis mean?
- What will my treatment be?
- What is my prognosis/outlook/chance of survival?
- How will I support my family?
- Who will support me?
Many people use the internet to get more information and answers. While the internet can be a source of information, articles and resources may:
- Not relevant to you
- Not written by reliable sources
- Not helpful to read during this period
It is helpful to know that during this time, stress levels may be at their highest, especially when waiting for test results, treatment plans or more in-depth consultation appointments. Stress and anxiety can also be exacerbated by the physical symptoms that often accompany a diagnosis of lymphoma or CLL, including fatigue, low energy and insomnia (trouble sleeping). Some practical tips for managing stress and anxiety during this time can be:
- Talking to your family, friends or loved ones about how you are feeling
- Writing down or journaling your thoughts and feelings
- Gentle exercise which has a focus on regulating breathing
- Healthy food choices and drinking plenty or water
- Limit excessive alcohol consumption
- Meditation and mindfulness practice
- Talking with a counsellor or psychologist
It is important to note that there is no specific timeline that your emotional experience should follow. Some people may begin to process their diagnosis immediately, for others it can take much longer. With enough time, enough information and plenty of support you can begin to start planning and preparing for the next chapter of your life.
Common Emotional Responses
Receiving a diagnosis of lymphoma/CLL naturally causes a combination of different emotions. People often feel like they are on an emotional rollercoaster, because they are experiencing many different emotions at different times and at different intensities.
Before attempting to manage any emotional response, it is important to acknowledge that no response is wrong or inappropriate and everyone is entitled to their own emotional experience. There is no right way to process a lymphoma diagnosis. Some feelings experienced might include:
- Relief – sometimes people feel relieved to know what their diagnosis is, as sometimes it can take the doctors a while to find the diagnosis. Finding the answer can be some relief.
- Shock and disbelief
- Helplessness and loss of control
- Withdrawal and isolation
What will starting treatment feel like?
If you have never had treatment for cancer before, walking into a treatment centre or hospital can feel foreign and uncomfortable. You are strongly encouraged to bring a support person with you on your first day, regardless of how well you feel. You are also encouraged to bring items that may distract and relax you. Some people enjoy bringing in magazines, books, knitting needles and wool, card games, iPads or headphones to listen to music or watch a TV show or movie. Televisions are often set up on treatment floors as well.
If you feel that your anxiety is not relieved by these distractions and you are in a sustained heightened level of distress, it may be helpful for you to discuss this with your nurses or treatment doctor, because it can be helpful to take anti-anxiety medications in some cases.
Some people find their experience of stress and anxiety begins to subside slightly once they begin treatment and understand their new routine. Knowing the names and faces of the hospital staff can also make the treatment experience less stressful.
It is important to note that not all people with lymphoma or CLL will need treatment right away. Many people with indolent (slow growing) lymphoma or CLL may often wait months or even years before requiring treatment.
Practical tips on how to manage my emotions during treatment?
Commonly, people describe their emotional wellbeing during treatment as an undulating path where feelings of stress and anxiety may increase and decrease intermittently.
Medications commonly prescribed with chemotherapy such as steroids, can have significant impact on your mood, sleeping habits and emotional fragility. Many men and women on these medications report high levels of anger, anxiety, fear and sadness during treatment. Some people may find they are more tearful.
During treatment, it can be helpful to have or create a personal support network of people. 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
- Support groups – both 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 manage an online private Facebook group: “Lymphoma Down Under”: http://bit.ly/33tuwro
Reaching out to the members of your support network when you are 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 are in a state of distress. Often, people want to offer support to you, but are not 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 are not feeling well. Online support systems can be set up on your phone, iPad, tablet, laptop, or computer to connect you with those in your support network.
Other helpful tips for managing emotional distress during treatment
- Giving yourself permission to experience your emotions as they arise, including crying
- Talking openly and honestly with others about your experience with people you trust
- Discussing your emotional concerns with your nurse, GP, treating team – remembering that emotional and mental needs are just as important as your physical concerns
- Keeping a diary or journal during treatment documenting your emotions, thoughts, and feelings each day
- Practising meditation and mindfulness
- Listening to your bodies needs for sleep, food, and exercise
- Exercising as often as possible, even 5-10 minutes a day can significantly reduce stress levels during treatment.
Every person who receives a lymphoma or CLL diagnosis has a unique physical and emotional experience. What may ease the stress and anxiety for one person may not work for the next. If you are struggling with significant levels of stress and anxiety at any stage in your experience, please do not hesitate to reach out.