Cancer treatments have progressed to the point where a cancer diagnosis is not the automatic death sentence it used to be. And even those who have an incurable cancer still have days and weeks, even months, to partake of life’s pleasures: laughing, visiting with friends, sharing a tender moment.
Living with cancer is not a matter of days filled with pain and waiting to die. It is about living fully while you are here, whether that is a short time or a long time.
Treatments and cure rates vary depending on the type of cancer and the health of your loved one. That said, there are phases in the course of a cancerous disease. With each phase come different pressures, concerns, and common reactions. These articles can help you understand what is happening in your family. You are not alone.
There is no doubt that cancer treatments are challenging. Our palliative care team can help you weigh the different options. They can provide you with comfort measures for difficult side effects of treatments. They can provide an extra layer of support for your family while navigating through this journey. Give us a call at 828-692-6178, or toll-free at 866-466-9734.
If your relative recently received a diagnosis of cancer, according to the American Cancer Society he or she is already a “cancer survivor.” Whether the journey is a long one or a short one, living with cancer takes courage and commitment. You are in good company! More than 11 million Americans are living with this diagnosis.
Below are tips to help you as you make your way together as a family.
Lay a foundation
Take the first key steps
Cancer taxes families in extraordinary ways. There is no right or wrong way to respond to cancer. It’s more a matter of finding a balance between the coping style of your relative and the style of those around him or her. How a family has addressed difficulties in the past is a good indicator of what may occur now.
To weather the journey, keep the following in mind:
It’s natural to wonder how bad a serious condition is. What are the chances a treatment will be effective? The prediction of recovery, in medical terms, is called a “prognosis.”
A cancer prognosis, for instance, depends on:
A doctor can estimate treatment outcome by comparing your relative’s situation with the statistics of others in similar circumstances.
Five-year survival rate
Prognosis is most often described in terms of survival rates five years after diagnosis. For example, the doctor might say that people who undergo a particular treatment have an 87% five-year survival rate. That means that 87 of every 100 patients who receive that treatment are still alive five years afterward. A different treatment will have a different five-year survival rate.
An educated guess
At best, a prognosis is an educated guess. It’s an average across a lot of people. Bear in mind, no two people respond in exactly the same way to any one treatment.
Some people like knowing
For some people, hearing a prognosis helps:
Others prefer not knowing
For other people, discussion of prognosis is disturbing, even frightening. For them, a prognosis is counterproductive. Whether your loved one prefers to know, or not know, is simply a matter of personal style. You may have a preference for yourself. But one style is not better than the other. Before talking about survival rates, determine your relative’s preference for how much he or she wants to know.
What is best for your relative depends on many factors. Some are medical. But some are personal. These relate to your loved one’s phase of life and what he or she feels makes life worth living. Following are the key questions to explore:
What treatments are possible?
For each option, you will want to know:
What side effects might occur?
Some treatments have immediate and debilitating side effects, such as nausea or fatigue. Some may have long-lasting effects, such as bone or muscle weakness. Surgery that removes a body part may necessitate an artificial replacement. Also ask:
What are the risks and benefits?
Find out the short-term and long-term risks and benefits for each treatment. You will want to know the prognosis, often expressed as the percentage of patients who are still alive five years after treatment. Other questions include:
Treatment is a very personal decision. Much of it has to do with your relative’s definition of a good quality of life. Discuss the pros and cons of each option with the doctor and weigh them next to your loved one’s values and priorities. You might even want to ask for a palliative care consult. The palliative care team can help you not only weigh the medical issues, but also come to terms with emotional, spiritual, and family concerns for each type of treatment.
If the decision is to pursue treatment, this phase is a time of intense activity. Initially, you may feel relief and hope. Something is finally happening! But treatment also takes a lot of your time and energy.
This phase requires making arrangements for
Treatment often takes weeks, and sometimes months. It is hard to imagine how much your relative’s treatment will demand of you physically and emotionally. Experience shows it’s typically too much for one person alone. Like any long-distance runner, you will need to pace yourself and make wise choices for taking breaks.
Address your own life responsibilities
If you work or have other family obligations, you will need to find ways to reduce your load. If you work, ask your employer about family medical leave.
Family, friends, and neighbors are likely to rally early on. But it’s natural for their assistance to taper off over time. Be proactive and ask them to commit to ongoing help.
Set aside time for yourself
If you are the primary caregiver, block out time for keeping your strength up. The fatigue of this phase may cause you and others to wonder if it’s even worth continuing. Set aside time for good sleep, good meals, physical activity, and periods away from the focus on cancer and caregiving. It’s not selfish. It’s essential. If you burn out, who will carry on when the going gets rough?
Consult with Four Seasons Palliative Care
Our team of professionals specializes in relieving distress, be it physical, emotional, mental, or spiritual. The palliative care providers can help you strategize to keep symptoms and side effects to a minimum. They are also very good listeners and can help you sort through difficult personal issues that tend to arise during the treatment phase. You do not have to give up curative care to receive palliative care. Give us a call at 828-692-6178, or toll-free at 866-466-9734.
Although you are likely relieved that the treatment is over, you may experience strong feelings flooding in, such as sadness, anger, and fear. It’s common for people to push emotions down just to get through the treatments. Once the immediate threat is over, then the feelings resurface.
Fear about a recurrence
Even if the doctor says your loved one has no more cancer, the joy of such news may be tempered by worries about the cancer coming back. This is a natural response. Worry is certainly useful when it calls us to action. But it’s a problem when it becomes an ongoing state of mind. It can become a habit, bringing tension and stress.
Keeping worry in balance.
If you’re a worrier, you may have mixed feelings. It may seem that worry
Relieving the stress of worry doesn’t mean you have to stop worrying. Here are some strategies to keep worry in balance:
Don’t try to give it up
– Instead, do it consciously and take notes! Schedule a 45-minute “worry time” for yourself every day. If a worry pops up at another time, write it down for review during your next worry period.
Clarify what is fact and what is emotion
– Hint: Facts are in the present tense. (“Mom seems tired and is coughing a lot.”) Emotional concerns often have a “future” component involving a problem that might happen (“What if the cancer has returned?”)
Create a strategy for action
– Unproductive fears are usually based in uncertainty. Create a list of action steps to answer the unknowns. (Review the symptoms of recurrence. Track symptoms in a daily log. Make an appointment with the doctor.)
Write out a balanced perspective
– While completing the action steps, your mind is unlikely to just “let go” of the worries. For each worry, write down evidence in its support and evidence against it. For instance, “Dad spent the afternoon in bed today. Then again, just last week he played a full round of golf with his buddies, and no coughing.” When the worry reappears, you can respond to it with this fact-based thought.
Call Four Seasons if the worrying is getting the best of you. We are here to help.
Doubts and the unpredictable can be hard to bear. Consider teaching yourself to feel more comfortable with the unknown. Use these questions to recognize and challenge your “need” for certainty:
You may find that your responses indicate you can, and are, coping with more uncertainty than you had realized.
To further support your acceptance of uncertainty, try these actions:
Do what you can to stay focused on what you can control. To the degree possible, strive to accept that some things are as yet unknowable and release them to the future.
Finding your “new normal”
After the treatment phase, it helps to concentrate on a return to “normal.” Or at least a new normal. While making this shift, let your loved one take back as many of his or her usual responsibilities as possible. Each week, ask yourself what more he or she could start doing again. If physical changes pose limitations, ask the doctor for a referral to physical or occupational therapy for help.
Your relative may still need you to monitor his or her treatment side effects. Family and friends may become less available. And you will also have less contact with your loved one’s cancer team. It’s wise, therefore, to cultivate support from other sources, such as a caregiver support group. Our palliative care team is also a resource. Their services are free and are not dependent on receiving curative care. Their focus is comfort, including your emotional and spiritual comfort.
Organizing and putting away the medical records
This is also a good time to assemble all the medical records while treatment is fresh in your mind:
These records will be helpful if questions arise in the future. This task is also a nice way to “close out” the treatment chapter and turn your focus to the benefits of survivorship.
A doctor almost never tells a cancer patient, “You are cured.” This is because many cancers have a pattern of remission (no obvious symptoms) and then recurrence. Nevertheless, one always hopes.
Hearing that a loved one’s cancer has come back or has spread (metastasized) can admittedly be heartbreaking for everyone. Having gone through the war zone of cancer treatment as a family, you know how difficult it can be.
Being a cancer veteran, however, also gives you advantages:
Depression and anxiety
It’s quite common for both the patient and family members to react to the news of a recurrence with depression and anxiety. Fortunately, these can be treated quite readily. Seek help quickly if you sense the emotional ship is sinking.
Is treatment the best option?
You may all question whether it makes sense to go through a new round of treatment. This is an immensely personal decision for your loved one. You may want to review our article about quality of life together and talk about what makes life worth living. For instance, are there situations that would be worse than death?
If the decision is to no longer seek treatment, you can get powerful support from hospice. These professionals work with you to ensure that every day is the best day it can possibly be. They help identify attainable goals and then work with you as a family to help your loved one make the most of the time that is left. If you’d like to learn more about hospice, give us a call at 828-692-6178, or toll-free at 866-466-9734.
Get help deciding
If your loved one is not sure which way to turn, ask to talk to the palliative care specialists. These professionals can answer questions about side effects of any new treatments being proposed. They can also help weigh the pros and cons. There is no fee for this service. Contact us at 828-692-6178, or toll-free at 866-466-9734 to learn more.
Maintaining appropriate hope
Even if the recurrence means things are more serious, it does not mean that your days must be filled with hopelessness. Hope simply takes on a different shape. Everyone needs things to look forward to. Help your loved one and other family members focus on simple pleasures, such as visiting with friends, listening to favorite music, singing together, or reading aloud.