In addition to the medical aspects of lymphoma, you will have to cope with many different emotional, psychological and practical issues. You will need to make decisions about priorities that you would not otherwise have had to make. Remember that you are an individual and your situation is unique. There is no “right” way to feel when going through this process. Only you can decide how you can best cope with lymphoma, its treatments and how to manage daily life.
Dealing with Your Emotions
Receiving a diagnosis of lymphoma or any cancer is always shocking and overwhelming. You may alternate between feeling numb and feeling intense emotion such as panic, outrage, anger, guilt and despair. It is important to acknowledge, experience and talk about how you feel. You may prefer to talk to family, friends, a member of your healthcare team or other patients in a support group. A support group can be a good place to talk to people who have dealt with similar problems, to learn how they coped and to share your feelings and experiences. You may also wish to talk to a professional counselor, such as a psychologist, to help you deal with your emotions. Whatever you decide, make sure you get the help you need.
Feeling Worried or Scared
We all experience worry or fear when faced with the unknown. From the time of diagnosis, through treatment and after treatment, there are many unknowns and questions that do not have definite answers.
Typical worries and fears are normal as you face many decisions and unknowns and they can impact your sleep and eating patterns, decrease your ability to concentrate, cause temporary withdrawal from social activities, disrupt your usual routines and increase your irritability or impatience. But keep in mind that these typical worries and fears are usually connected to a specific issue and they are brief and time-limited. The symptoms associated with worry and fear increase and decrease as issues arise but they do not stop your ability to look forward to the future and they do not stop your ability to make necessary decisions.
Fear may make you want to start treatment immediately. In many cases, this is unnecessary. It is important to take the time to calm down, learn about your options, think things over and gain some perspective before deciding on a course of treatment. Try to manage your fear by getting accurate information, learning about useful resources and getting support.
Anxiety and Anxiety Disorders
Feelings of anxiety can increase or decrease at different times. You may become more anxious if the cancer spreads or treatment becomes more intense. The level of anxiety experienced by one person may be different from the anxiety experienced by another person. High anxiety can interfere significantly with your quality of life. It may ruin your sleep, worsen your pain, and generally make life miserable. If your anxiety is severe or interferes with your daily activities, you may also have an anxiety disorder. Everyone is different and what works to reduce your anxiety may not be the same as what works for someone else. Support from family, friends and self-help groups can also make a big difference.
Most people with anxiety feel a sense of relief when they learn more about it. You begin to understand we all experience anxiety at some time in our lives and there are ways to reduce and manage it. Management depends in part on the cause of the anxiety. For example, if you are having anxiety caused by pain, the type of lymphoma you have, or a medication you are taking, then your doctor will try to treat the underlying cause.
Patients may benefit from other management options for anxiety, including: problem solving for practical matters, counselling, support groups, and relaxation techniques. Anti-anxiety medications may be used alone or in combination with these techniques. Consult with your doctor to learn more and discuss any concerns you may have about these medications.
A note about phobias: Remember that fears of certain things like closed spaces or needles can interfere with your treatment plan. Make sure your healthcare team knows of any pre-existing issues connected to anxiety or phobias.
Sadness and Depression
People talk about feeling sad that their family is in so much distress. Others experience sadness when they can no longer work or do what they want to do. It can be hard for those who love you to see you sad, but it’s important to share how you feel with those that you identify as your supports. Expressing your emotions is one of the best ways to maintain your emotional health.
Depression is different from sadness. It lasts longer and has more symptoms. You may have many symptoms or just one or two. Depression can begin to interfere with your quality of life and your ability to live your life in a way that is healthy, enjoyable and meaningful to you.
Lymphoma and its treatment may increase your risk of depressive symptoms. The type of lymphoma, stage of disease, severity of symptoms you experience, the quality of your support systems and any history of mental health issues can all impact whether depression may be something that you experience before, during or after your treatment. Also remember that some of the symptoms of depression can be connected to the treatment you are undergoing, the treatment side effects or the medications used. They may not always be reliable indicators of depression in people with cancer. For example, decreased energy is a common symptom of treatment and does not necessarily indicate you are experiencing depression. That is why it is important to discuss your symptoms with your doctor and healthcare team.
Depression is treatable. No one has to suffer endlessly. Most people with depression feel a sense of relief when they learn the facts about this illness. You realize depression is not a personal weakness, and most importantly, you learn you are not alone. Each case of depression is unique, so people may require different methods of treatment. There is a range of treatment options for depression including counselling, antidepressant medications, or a combination of the two. Support from family, friends and self-help groups can also make a big difference.
Anger includes a range of feelings from mild irritation and frustration to rage and fury. Feeling angry and upset that this is happening to you is fairly common for patients and their caregivers, family and friends. Anger sometimes is connected to other feelings that are hard to show – such as fear, panic, frustration, anxiety, or helplessness.
Anger can occur when your needs are not being met or respected. You may feel angry at different points throughout your lymphoma experience. Some people have shared that they have felt anger towards different things such as the cancer, your healthcare team, friends and family, your body, yourself, your spiritual support, delays and obstacles in the healthcare system and healthy people.
Many of us have been raised with the idea that it’s not acceptable to be angry. You may feel guilty and try to deny having these feelings. It is important for everyone to know that at least a certain amount of anger is expected and needs to be expressed. Keeping these uncomfortable emotions inside or unexpressed can make coping much harder. Ignoring your anger doesn’t mean it goes away; the anger may just remain hidden and perhaps come out in non-helpful or harmful ways. Unexpressed anger can also contribute to increased feelings of depression and anxiety. As is true with other emotions, the challenge is to find ways to express/release your anger that do not negatively impact your own health or your relationships with others.
Dealing with Relationships
Lymphoma changes not only your life, but also the lives of those around you. Sharing your lymphoma experience with others is important, but while many relationships will grow stronger, others may become strained or even dissolve. Most people are supportive and caring when they learn that someone close to them has cancer. Some many have difficulty dealing with their own emotions about your diagnosis. They may also respond by withdrawing, blaming you for having cancer, making insensitive remarks such as “be grateful it can be treated” or giving you unwanted advice. Their reactions may hurt your or leave you angry at a time when you really need support. People who respond this way do so because of their own fears, not because they don’t care. Having someone you can talk to can be very helpful in this situation. In addition, you must decide whom you will tell about your diagnosis and what you will say.
Coping with Age-related Issues
Lymphoma can affect people at any stage in their lives. Each stage has its special concerns, and you might find it useful to talk to people in your own age group. Young people are often concerned about the effect of lymphoma on completing their education, establishing a career, dating and social relationships and starting a family. Middle-aged individuals often find that lymphoma interrupts their careers and makes it more difficult to look after others who depend on them, such as children and aging parents. Older patients may worry about the effect of lymphoma on other health problems, about not having enough support or about losing the opportunity to enjoy their retirement. It is important to deal with your concerns and to come to terms with them. You may be able to find a support group with people or lymphoma patients your age who have similar experiences and concerns.
Coping with Treatment
Participating in Your Treatment
You are a partner in your treatment and you will feel better if you participate actively in managing your disease. Attitude is also very important. Patients who believe that they will defeat lymphoma will do better than those who believe they will not. The first step in participating in your treatment is to believe it will be successful. To participate fully in managing your disease, ask questions and work closely with your physician to make choices. You must be comfortable with your physician and the approach that he or she takes to treatment. If you are not comfortable, discuss your concerns. If it becomes apparent that you and your physician are not a good match, ask for a referral.
Managing Side Effects
The side effects of lymphoma treatment can usually be managed effectively by medications. The emotional and psychological impacts of the side effects are more difficult to deal with.
Hair loss and other changes in appearance caused by treatment make many people feel unattractive. These feelings are best addressed by learning how to improve your appearance: how to hide your hair loss and manage temporary changes such as dry skin, brittle nails and a blotchy complexion. The “Look Good…Feel Better” program teaches women with cancer how to use makeup and skin care techniques effectively and how to choose a wig or hat. Information for men is also available. To inquire about the services and materials offered by “Look Good…Feel Better” call 1-800-914-5665 or visit www.lookgoodfeelbetter.ca.
Fatigue is a common side effect that may limit what you can accomplish on any given day. You will need to decide whether you can continue working or going to school full-time. You will need to set priorities. Pace yourself and listen to your body. Stop your activities and rest when you are tired.
Using Complementary Therapies
Complementary therapies, such as meditation and visualization, are frequently used to help cancer patients reduce stress and anxiety levels and maintain a positive attitude. There are many different types of therapies that promote relaxation. Your healthcare team or support group can help you find workshops that teach these techniques. Exercise is also important in reducing stress and frustration. Experiment with different techniques or activities to find those that are best for you and that improve your feelings of well-being. At this time, you come first.
Coping with Life Changes
Living in Remission
Living in remission can be a source of both relief and anxiety: relief that the lymphoma is gone and anxiety that it may come back. You may feel that successful treatment has given you another chance at life. It is not uncommon for lymphoma to change people’s priorities or career directions. It is important for you to deal with changes in your attitude to your life, your relationships and yourself. It is also important, while hoping that the disease stays in remission, to remember that it can recur. Therefore take the appropriate steps to maintain your health and follow your physician’s recommendations for follow-up visits.
Dealing with Relapse
Relapse is not uncommon with Hodgkin lymphoma and non-Hodgkin lymphoma. If you experience a relapse, you may feel worse than when you were first diagnosed because you had hoped and believed your cancer was cured. However, it may actually be easier for you to cope the second time around; you already know what to expect, how to find support and how to manage your disease. Remember, if your cancer was successfully treated once, it may be successfully treated again. Use whatever support you can to get through a relapse.
If you want to have children and you are not able to as a result of your cancer treatment, you will face several practical and emotional issues. You may be able to deal with your disappointment on your own or you may need help. Your spouse, friends, family or support groups can help. In addition, men diagnosed with lymphoma who wish to have children may be able to freeze semen prior to treatment.