Coping With Brain Cancer
Deciding on a treatment plan is highly personal. Lengthy discussions with your doctor, family and friends should help you determine what the best course of action is for your individual diagnosis.
However, the benefits of treatment are more time with family and friends, more time to make good decisions about your treatment, and a chance to help scientists work on better ways to fight brain tumors. Extra time raises the possibility that a new treatment might become available. There are no guarantees, but time equals hope.
- Recently Diagnosed
- Getting Organized
- Get Healthy
- Express your emotions
- Work & Family
- Find Support
- National Resources
- Clinical Trials Resources
- For Caregivers
- Taking Care of Yourself
- Nutrition and Rest
- Educate Yourself about the Disease
- Delegate Tasks to Family and Friends
- Get Organized
- Join a Caregiver Support Group
- Grief & Bereavement
A new diagnosis of cancer can be devastating. Most people remember the exact date and time their doctor first uttered the “C” word. Time seemed to slow down and a rush of thoughts and emotions filled their mind. Shock, fear, regret, denial. The greatest feeling people initially described is feeling alone. It is critical to realize that this is not the case. There are resources available to assist patients through this difficult time. There are thousands of people fighting this same fight every day.
When a newly diagnosed patient tells family and friends about their cancer, they are often flooded with offers of assistance. However, most people find it difficult to ask for help. Friends don’t know what someone might need and don’t know what to say; patients don’t want to impose or be a burden. But thankfully friends usually enjoy helping where they can. So be specific. Ask for a ride, tell someone you would like them to go to an appointment, or simply ask that someone be with you and talk about something else.
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The amount of information given to new patients is typically daunting. Now is the time to get organized. Write down questions at home and bring them with you to your doctor visits. Take notes at your various appointments. It may be helpful to ask for copies of any imaging studies or lab results so they can be shared with other medical professionals. Develop a schedule of your visits and treatment dates. If possible, ask for help from family members to help coordinate and plan your care and treatment.
Some people want to know everything and others prefer fewer choices. Know yourself and communicate that to your providers. Many people will consider having a second opinion from another physician or institution. You should feel comfortable asking for this, as a good and competent physician should expect and embrace the patient’s desire for confirmation of the correct course of action.
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Your body will need all the energy it can get. Proper sleep habits, balanced eating practices and abstinence from smoking and excessive alcohol will help you gain reserve for any treatments that you may choose to pursue. Moderate exercise can help both physically and emotionally, but realize that there will be times that your treatments that you receive may diminish your energy. Don’t be discouraged as this is often temporary.
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Express your emotions
There have been multiple studies that show that cancer patients who share their experiences with others have a higher quality of life. Many patients accomplish this by keeping journals, talking with clergy, or practicing meditation. Joining a support group is perhaps the best way to connect with people experiencing exactly what you are going through. Powerful connections can be made between patients suffering with the same illness. Your treatment hospital may be able to assist you in connecting with these resources.
Intense emotions are common when dealing with cancer; however, severe depression or anxiety should not be accepted as normal or just part of the experience. Signs of depression can include lack of interest in usual activities, hopelessness, poor focus or concentration, and low energy and appetite not related to chemotherapy or radiation. If you find yourself experiencing any of these, talk with your doctor about treatment options.
Relationships with friends, acquaintances and loved ones can change during this stressful time. Some close friends can seem to disappoint, while others can surprise with strength and resolve to support. Remember that your friend’s lives have not changed and it can be difficult for them to feel adequate in their response to your evolving condition. You may find that if you re-initiate contact that you are able to reconnect in a meaningful way.
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Work & Family
There will be difficult decisions to make regarding work when dealing with cancer. Most people depend on their jobs for income and health insurance. Whether or not you can continue to work through or after treatment will depend on the severity of your cancer. The extent of your required treatments and the recovery from treatments will also impact these decisions. Most people at some point need to inform their employer about their condition to access their medical leave and other potential benefits. Many large employers also have a long-term disability policy which can cover employees if short-term benefits are not enough.
The Family and Medical Leave Act offers employees up to 12 weeks of unpaid leave to deal with a medical illness or to assist in the care of a family member’s medical illness. This can usually be accessed all at once, or split up into shorter time periods to accommodate various treatments. Your human resources department can help coordinate the paperwork required between your doctor’s office and your employer.
The Consolidated Omnibus Budget Reconciliation Act (COBRA) developed a means for employees to continue receiving their health coverage even after employment ends. It often requires someone to pay the entire cost of their premiums that were previously paid by their employer. This also typically has a limited time period. While the premiums may be high, it is usually far cheaper to pay these continued premiums than paying for even a few chemotherapy treatments. For more information on accessing COBRA coverage, contact your employer or your state’s insurance commissioner.
The American’s With Disabilities Act is intended to prevent workplace discrimination because of an employee’s disability including disabilities arising from a medical illness. An employer is required to make reasonable accommodations for such disabilities. However, an employee must still be able to perform their essential job functions. Further, reasonable accommodations cannot cause an undue hardship for an employer. For more information about the American’s With Disabilities Act, go here www.ada.gov.
Many of us draw a good deal of our identity from our work. If you are unable to return to work after dealing with cancer, it can be a difficult adjustment. This can be yet another loss to be grieved. However, our jobs are not the sum-total of who we are. Our relationships with friends and family are far more important and longer lasting than anything that we do for a paycheck.
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Being a caregiver is a taxing experience. You are being asked to juggle the needs of your loved one along with those of any additional family members, not to mention attending to your own self-care. Easier said than done, right? Know that you are not alone. Caregivers need just as much support as their loved one dealing with the illness.
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Taking Care of Yourself
It is important to be mindful of any changes and signs of acute stress you may be experiencing. These include:
- Changes in Sleep
- Changes in Appetite
- Withdrawing from friends and Family
- Feeling overly emotional/angry
- Feelings of overwhelming anxiety
These are all normal reactions to the situation you are facing. However, if they persist, then it can start to affect your own health. It is important to recognize these signs of acute stress so we can address them before it turns into chronic stress and burnout.
It is absolutely essential that you take care of yourself. You cannot possibly begin to care for another if you aren’t taking the time to care for yourself. Below are a few things you might want to think about putting into place; start with just one if you are already feeling overwhelmed. Sometimes just having one small thing in place can go a long way towards your sanity and relief.
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Nutrition and Rest
It may sound very basic, but you need to eat well and rest when you are able to. This means making sure you eat enough fuel to keep your strength up and rest when you have the opportunity to help with your stamina. Make sure you drink plenty of water. And don’t forget to take a deep breath every once in a while – deep breathing can help with fatigue and anxiety. Make time for you to relax and rejuvenate, even if it is only 15 minutes per day – take the time.
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Educate Yourself about the Disease
The more you know, the better you’ll know what to expect and you will feel more in control of the situation. Ask doctors and nurses about your loved one’s condition and what you as a caregiver need to know. The Internet is also a very good way to learn more about your loved one’s disease. The National Brain Tumor Society, The American Brain Tumor Association and The Brain Tumor Foundation are excellent places to start. As you research, write any questions or comments you may have for the doctor and take them to the next appointment.
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Delegate Tasks to Family and Friends
You will find friends and family are more than happy to help in time of need. You just need to ask. Things like cooking meals, running errands or cleaning can all be delegated to friends and family. Having someone else pitch in and help you with these tasks will leave you with time to concentrate on providing care for your loved one. If you need help in organizing a “Share the Care” schedule, please contact your social worker.
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Many caregivers also are responsible for maintaining medical records, insurance claims, and finances, not to mention medication and eating schedules. The key to success here is organization. Keep medical records neat and accessible by storing them in a large file, organized by date. Medicine schedules can be created with a spreadsheet, and then printed out daily or weekly, or use the blank template of a medication log is included in this binder. As each dose is given, you can check it on the sheet with the time. The same can be done for eating schedules.
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Join a Caregiver Support Group
Whether it is online or through the hospital, a caregiver support group is an excellent way to meet others going through the same thing as you. It really does help to have someone who can provide you with tips or can identify with daily caregiving life. The Brain Trust runs an online support group for caregivers. Cancer Lifeline and Gilda’s Club are also great resources for you. They offer a multitude of services, groups and classes for the whole family.
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Grief & Bereavement
Put simply, grief is our response to loss. There can be many losses when dealing with cancer; loss of function, loss of fertility, loss of opportunity. How we individually deal with loss is partially dependent on our cultural, religious, and familial belief systems. It is a highly personal experience. Some people experience denial, a defense mechanism where we don’t want to face what is happening. Typically, this is because we think we lack the resources to respond. Anger is common, but anger is usually secondary to pain. We usually get angry because we get hurt. Bargaining is the act of trying to “make a deal” to avoid a loss, even if we know the loss is unavoidable. Depression could be described as hopelessness beyond reason; the feeling that “things will never get better”. However, even depression should be temporary. If it continues, it needs to be treated medically.
What used to be thought of as a progression through stages of grief could now be seen as simply working towards acceptance. It is possible to experience denial, anger, bargaining and depression. However, there may be no specific order to these and they are not all necessary. Each person should take their own time to come to terms with their loss. A balance should be ideally maintained between not feeling rushed through any particular point but also not getting stuck forever in any particular place.
Some grief experts think that once we move into acceptance of our loss, the grief work actually begins. One research group has described three stages after the acceptance of the loss. The first is to experience the pain of the loss. Next is to adjust to the new environment without the subject of the loss. Finally, we must reinvest our lives in the new reality that we find ourselves.
Bereavement is the ultimate loss that we can experience, losing someone we love. It has been considered one of the most stressful events anyone can experience. But even here, suffering can be put in context. For the pain we experience is a testament to the close and intimate relationship we have had with another person. It validates that in spite of our shortcomings or our differences, perhaps even a fight here or there, there is a revelation of something special between two people, and those memories live on with those of us that remain.
If you feel you need additional help in dealing with any aspect of your grief, it may be necessary to contact a grief counselor, psychologist, or psychiatrist. Your treatment team or hospital organization may have professionals available for referrals. Another way to do this is by contacting your primary care provider. Most primary care providers have built professional relationships with such providers and have a measure of confidence in their abilities. It is also possible to contact your medical insurance company for a list of providers in your area. Many people also contact their church, synagogue, mosque or other religious organization as they often have staff trained to deal with grief and loss.
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