You may find yourself cycling through a range of different emotions as you come to terms with the end of life. Some may bring pain and sorrow, others a sense of calm and peace. Not everyone experiences the same emotions, and feelings may change as time passes or even over the course of a single day. “You may find yourself balancing a bad morning with a good afternoon,” says Kelly Grosklags. “You can be sad one day and the next day be completely elated in the relief that you’re done with treatment.” You can both be anxious and fearful and feel a sense of calm. You may both grieve the loss of many years you expected to have and feel a sense of gratitude for the life you’ve had so far. There is no set pattern or playbook, but it’s all normal.
Here are some of the emotions that can come up and ways to manage them.
Anxiety/panic: Anxiety and panic are normal first reactions to understanding that breast cancer is likely to shorten your life. Initially, these feelings can be overwhelming. For a time you might feel frantic and unable to think clearly. You might have trouble focusing your attention and sleeping at night. In Kelly Grosklags’s experience, medication can be helpful for many people: “A lot of the people I work with will take something so that they can be calmer and somewhat more clear in their thinking so that they can make the best decisions for themselves.” Talk to your doctor or ask to see a mental health specialist who can help. Medication and therapeutic support can help you focus on your next steps medically while also being able to do the things that matter to you: enjoy social events, go on vacation, read, work, whatever it may be.
“It’s important to reassure yourself that you’re not going to be abandoned, that there’s going to be a healthcare team, there are going to be support people that are going to see you through this,” Grosklags adds.
Fear: “Fear is rooted in the unknown future,” says Kelly Grosklags. Anything that we’re about to do for the first time — have major surgery, live through a natural disaster, give birth, start chemotherapy — has fear associated with it because we don’t know exactly what to expect. There’s so much we don't know. With the dying process, some people fear not feeling well or being in pain. Some fear that their loved ones might forget them or that their life didn’t have the impact they wanted.
Try to name what is causing your fear. If you fear being alone, tell family and friends that you want them to stay close. If you fear being forgotten, consider arranging to leave them notes or recordings to remember you. If the dying process itself scares you, talk to your doctor or ask to speak with an expert in palliative care so you can understand what options there are to make sure you’re comfortable at the end of life.
Anger: You might find yourself feeling angry, too. “I did everything right, I was healthy, I got my screenings, and still this happened,” are common thoughts. Why didn’t I/my doctor/my screenings catch this sooner? Anger is also a normal reaction if you were treated for an earlier stage of breast cancer in the past and now find yourself dealing with a stage IV recurrence. After all, you made it through treatment the first time and deserve to be done with cancer. Some people feel angry about having to rethink their plans for the future, whatever those might have been: retirement, a second career, more travel, celebrating children’s and family milestones.
“I think sometimes that people, especially women, don’t necessarily feel they have the right to be angry. But it’s a very common thing and it’s justified,” notes Kelly Grosklags. “I find that sitting with it and talking about it with people, and even having them say out loud what they are angry about — that can help diminish it.”
People often tend to take their anger out on the loved ones who are closest to them. Be aware of this and try to remind yourself to direct your anger at the situation and the disease, not the people in your life.
Guilt/regret: Guilt and regret can come from different places. Maybe you feel you didn’t live as healthy a lifestyle as you could have, or you didn’t have regular cancer screenings. Guilt can come from the realization that a partner, children, or other loved ones are worried and are adjusting their lives to care for you. Perhaps you feel regret about things you haven’t accomplished in your life. These feelings are normal, but keep in mind that there are people who do everything “right” and still get diagnosed with stage IV breast cancer. Being diagnosed with metastatic breast cancer is no one’s fault.
Unless you intentionally hurt someone in your life, you have no reason to feel guilty. Guilt and regret are about a past you can’t change, so try to let them go and focus on the present day. If you feel the need to make amends with someone you hurt, you can certainly do that as a way of putting guilty feelings to rest (visit Managing Relationships With Family and Friends at the End of Life for more information).
- Loneliness: Facing a life-threatening illness can be isolating. No one can truly understand what you’re going through unless they’ve been there themselves. It can be hard to connect with family and friends as a result. Loved ones and friends who don’t know what to say might pull away. Some people feel completely alone and misunderstood. You may find it helpful to connect with others with metastatic breast cancer who understand what you’re going through, whether you do that in person or online. You can visit the Breastcancer.org Stage IV Discussion Board community to meet and message with others living with metastatic disease. You can also ask your healthcare team if they can connect you with a social worker, counselor, nurse, or end-of-life caregiver who has worked with others in your situation and can provide advice and guidance.
- Grief: Grief is a feeling of deep sadness in response to something we’ve lost. You might grieve the loss of hope that the treatments were working. You might grieve the loss of years you expected to have in front of you. Losing the vision you had created for your future and having to adjust to a new reality can lead to feelings of grief. “Even if we know the news is coming, when it actually comes, the walls are let down,” says Kelly Grosklags, “and we may be crying tears that are 20 years old, or 10, or 5 — stuff can just come to the surface.” Again, find someone who can provide an outlet for your feelings, whether it’s a healthcare professional or someone who is close to you and can let you give voice to your feelings of grief.
- Depression: Some people develop full-blown depression, a clinical condition marked by long-lasting symptoms such as withdrawal from others and loss of all interest in activities they once enjoyed. Depression can cause incapacitating feelings of anxiety, worthlessness, and even despair. As with intense anxiety, symptoms of depression often improve when taking prescription medication to manage it, so don’t hesitate to ask your doctor for help. He or she also may have you work with a mental health professional who is experienced at helping people who face serious health conditions.
Many people experience positive emotions as they come to terms with the end of life, such as:
- Relief: You know firsthand that cancer treatments can have difficult side effects. Going for tests and imaging scans to see if the breast cancer is responding to treatment can put you on an emotional rollercoaster ride. After experiencing this for long periods of time, some people find a sense of relief in knowing that at some point, they can step off the rollercoaster. They can finally give themselves permission to stop and channel their energies elsewhere — toward work or hobbies, family or friends, or other things that are important to them. This can be freeing, says Kelly Grosklags: “There’s a lot of focus on the negative part of coming to terms with the end of life, but there can be this sense of relief that ‘I don’t have to do this anymore,’ ‘I don’t have to wonder anymore.’”
- Peace and contentment: You may find a sense of peace in the impulse to reflect on your life so far; the contributions you’ve made to your family, your workplace, or society; and what else you now choose to do in your time ahead. “I’ve seen so many people go through 3 or 4 years of treatment and then I get to walk with them at the end of life,” Grosklags says. “Overall there tends to be a sense of peace — kind of like, ‘I already knew this was happening.’”
“There is nothing wrong in admitting that sometimes what we live with on a daily basis just breaks us. We can have a bad few hours, a bad few days, then pick ourselves up and move on, it's all fine again. Then there are times when it feels like we have been dealing with this forever, and it's just too damned hard. I have days where I just need to take a deep breath and hope I make it through the day without hitting anyone over the head with a chair!”
—Breastcancer.org community member