You may also have a lot of conflicting feelings. Patients often say that their emotions can often be quite volatile both on diagnosis and during treatment. Although each patient’s and their loved ones’ emotional response to the diagnosis and the treatment process is unique, many share similar reactions.
Before discussing some negative emotions, a word about HOPE! Hope is the belief that a positive outcome lies ahead. Hope is being honest with yourself about your situation, while still looking forward to positive outcomes in your future.
Some common emotions you or your family/friends may be experiencing:
Feeling shocked is often the first reaction when cancer is diagnosed. You may feel numb and not believe what is happening, be unable to express any emotion, find you can only take in small amounts of information, or ask the same questions or need to be told the same thing over and over again. Needing to have information repeated is a common reaction to shock. You may experience emotional numbness where you have the sensation of being completely drained, or worn out.
Some people may find their feelings of disbelief make talking about their illness with family and friends difficult. Others feel the urge to talk about it as a way of helping them to accept the news. If you would like to talk to someone outside your own friends and family, please speak to your nurse or BMT social worker. They can assist you in finding appropriate peer-to-peer support services.
The first few weeks at Vancouver General Hospital can be difficult. On top of the stress your illness is causing you and your family (whether it be physical, emotional, spiritual and/or financial), you will be dealing with the stress of being in a new area, adjusting to the outpatient or inpatient hospital routine and, more importantly, establishing trust in the health care team.
In a short time, our health care team will attempt to make you very well informed. You may feel overwhelmed with the sheer volume of information presented to you regarding your treatment. You may be required to learn more than you wished or anticipated. If you have any questions or don’t understand what has been said, please ask for clarification.
Throughout diagnosis, treatment, and recovery most people will periodically experience reactions of sadness and grief. On learning they have cancer; they often have feelings of disbelief, denial, or despair. They may also experience difficulties with sleeping, loss of appetite, anxiety, and a preoccupation with worries about the future.
These symptoms and fears will usually lessen as a person adjusts to the diagnosis. Signs that a person has adjusted to the diagnosis include their ability to maintain an active involvement in daily life activities, and an ability to continue functioning in their daily roles. A person who cannot adjust to the diagnosis after a long period of time, and who loses interest in usual activities, may be depressed.
The signs and symptoms of depression include:
- Loss of pleasure and interest in most activities
- Having a depressed mood most of the time
- Inability to experience joy
- Changes in eating and sleeping habits
- Nervousness or sluggishness or tiredness
- Feelings of hopelessness
- Feelings of worthlessness or inappropriate guilt
- Poor concentration
- Constant thoughts of death or suicide
Mild symptoms of depression can be distressing and may be helped with counselling. However, when symptoms are intense and long lasting, or when they keep coming back, more intensive treatment is needed. It is very important to talk to the health care team if you have any symptoms of depression.
Fear is an overwhelming emotion that patients and families experience before, during, and even after hospitalisation/treatment. These fears include fear for the well being of your family, fear of discomfort/pain, fear of what your future holds and fear of dying. Although our units in the Leukemia/BMT Program are a place of hope, it is important to realise that patients can die during the course of hospitalisation. Family members and patients may not always talk about their fears of death as a way of trying to protect one another. These fears are very real and sharing them with family and the health care team usually helps.
Another common reaction to illness is anger. Anger can range from mild irritation or frustration to rage or fury. Some patients direct their anger at their family or the staff, while others may be angry with God. Relatives may be angry with the patient for getting sick and disrupting their lives. Anger is a very normal reaction to the stress a family feels during diagnosis, treatment and transplant. It is very important to find an outlet, such as talking to someone, in order to relieve the tension. It is important to realize that this is a time when both the patient and their families/support persons need mutual support.
Many families talk about feeling guilty. Parents can feel guilty because their child has cancer, while adult patients may feel guilty for being a burden to their family. Children can also feel guilty that a parent is ill, especially when they do not fully understand what is happening. These feelings are a common human emotion and coping with them can be difficult. Again, it is important and can be helpful to share these feelings with someone.
All of these reactions are normal. You and your family should not hesitate to use the understanding, experience and support of the health care team to help you deal with these feelings.
Having a life-threatening illness can send the individual and their family into a crisis tailspin. You may prefer to deal with these stressful things on your own but we don’t recommend it! Sharing your concerns and experiences can often be helpful both to you, and members of your support system.
Once the shock has worn off, the real work of dealing with day-to-day life begins. Living daily with a debilitating illness means you will need to learn to alter your life, your role, and expectations of yourself. Here are some suggestions on how to cope with these changes.
The struggle of coming to terms with the loss of your role as the family provider, caregiver, active and involved parent etc., is not easy. You may expect that you will be able to do all of the things that you could do before. Finding a new rhythm and routine that works with your new level of functioning can be a long process. The challenge is learning how to redefine your roles, letting go of some of the ones that are less important and maintaining the ones that are more important. The question you may wish to ask yourself is “how can I still feel involved in the roles that are important to me, without compromising my health?” Communication with family members and friends will help ease this transition.
Learning to accept help when offered can ease the burden on the patient and caregiver but is not something we are socialised to do. Western society prides itself on individualism and independence. Dependence is viewed by some as a weakness. Being able to accept some of your own limitations, both physically and emotionally, will be helpful to both you and your caregivers. Accepting help from friends and extended family members will take some of the pressure off of you and your immediate caregivers. Remember: you would want to help them if the tables were turned!
Realise that even though this is a terribly awkward situation for you, it is for those around you as well. Some family/friends may not “step up to the plate” initially due to fear of upsetting you or not knowing what to say. Express to them that sometimes just saying, “I don’t know what to say or do” is just as helpful and supportive. This will help you deal with loved ones that perhaps disappoint you at first.
Many patients struggle with their new title as “sick person”. Walking through daily life with the knowledge of their diagnosis is a heavy burden. We often don’t know what to say to our friends and family about the illness. Planning what you will say to colleagues, acquaintances and family is helpful. Often the patient does not want to make others uncomfortable or sad; however, keep in mind that people want to know how you are doing and what they can do to help.
When you’re feeling better and getting ready to fully reintegrate into life, making this transition can be very difficult. Sometimes people have become very used to the role of patient, and family members have become used to managing the tasks that the patient is now ready to take on. This again will be a time for renegotiating and communication. Caregivers will have to learn to give up some control over certain tasks, while you may face the challenge of being expected to take on tasks and roles you have not performed in a long time.
You’ll also need to face the knowledge that in many ways life has gone on as usual for many people. New contacts and colleagues may have no idea what you have gone through over the past several months or years, and what impact it has had on your everyday life. It is okay to let people know of your past experiences and how they have affected you. This can often help people in your life understand your perspective on many issues.
Family/Friends & Their Emotions
The following are some emotional affects and realities that families and friends of the patient may experience and how to deal with them. Remember that the health care team is here to help you. Speak to the nurse or social worker if you need extra support.
Having a family member sick with a life-threatening illness can turn your world upside down in a second. As the sick person starts the invasive and often debilitating treatment, you are plunged into a new reality of immediately needing to be responsible for things that you never have been in the past. These may include handling household finances, caring for minor children as well as the sick person, doing general household maintenance, and sometimes entering the workforce to provide for your family. This is both physically and emotionally draining.
When caring for someone who is sick, it is natural to feel burdened by all the new roles that have been thrust upon you. For example, you may be going from husband, father and financial provider, to husband, father, financial provider, caregiver for spouse and children, house cleaner, cook, secretary, financial planner and organizer.
It is important to remember that your role is not to be ‘everything to everybody’, but rather to be the best ‘you’ that you can be. This includes being able to set reasonable expectations and limits on what you can accomplish from day to day. Nobody can do everything. If you want to be able to maintain and juggle your new roles throughout the entire medical treatment and recovery, it is essential to take care of yourself and not get too overloaded. Accept help from the people around you. You need it.
It is natural to have a lot of mixed feelings about having to navigate unplanned role changes in your life. Some of these feelings include anxiety, anger, frustration, and feeling helpless and overwhelmed. These feelings may be directed at the situation at hand, but you may also have these feelings towards the sick person for getting sick and putting you in the situation in the first place. It is important to acknowledge these feelings and not feel guilty for having them. They are all normal emotions that go hand in hand with adjusting to a new diagnosis and change in life circumstance.
The best tool to negotiate role changes in families is communication. Having mixed feelings about the situation is normal, but it is important to articulate and address these feelings when they come up. If you do not give yourself permission to feel what you need to feel and express it freely, the feelings can fester, and become more difficult to deal with in the long run.
Even though having these conversations with family members at such a critical time is difficult, it is more destructive to brush feelings aside. Your feelings are valid and need to be shared.
If you absolutely feel that you cannot share these feelings with your family, seek someone outside the situation that you trust, or see a counsellor. Your Leukemia/BMT social worker will be happy to set up a counselling appointment with you, or put you in contact with an external agency for the same purpose.