What Is it Really Like to Have Cancer?

What is it Really Like to Live With Cancer?

What does it really feel like to have cancer?. Istockphoto.com/Stock Photo©jackethead

Most of us know of someone who is living or has lived with cancer. And likewise, many have thought about what it would really be like to have cancer themselves. As those who have lived awhile are well aware, what we think we will feel before something happens, and how we feel after it occurs, are often very different. Yet, having some idea what it's like can help you be the best supportive friend possible for someone with cancer.

Through interviewing many people with cancer, and thinking of my own life before and after cancer, I’ve asked that question in different ways. The following slides are a portion of what I heard and thought. Though I begin with some of the more uncomfortable feelings, read on to the end. Why? For 2 reasons.

The first is that those who live with cancer are real people with real lives that reach far beyond cancer. Most of us do not want to be defined by our cancer. People with cancer can often live very full and happy—though shorter for some—lives 

The other is that even if you re not a cancer survivor, we are all survivors of something. You may be a survivor of a visible tragedy, or instead a survivor of a less visible but just as traumatic emotional struggle. For that reason, nearly everyone will see themselves in the pages that follow—not just their loved ones with cancer.

Life With Cancer is Different for Everyone

Cancer is different for everyone. Istockphoto.com/Stock Photo©Rawpixel Ltd

What it's really like to live with cancer is different for everyone; there is no “average” or “typical” way in which people experience cancer.

For starters, the experience of cancer is affected by our environment, our support system, the people we engage with, our past experiences, our oncologists, and the particular type and stage of cancer we have. In addition, every single cancer is different on a molecular level and can behave in a different way clinically; 2 people with stage 2B of a particular cancer type might have very different symptoms, different outcomes, and different feelings about the disease. If there are 200 people with one particular type and stage of cancer in a room, there are 200 unique types of cancer.

Just as the cancer experience varies widely, there is no right or wrong way to feel about having the disease. How you feel about it is simply how you feel.

That said, the following slides bring up thoughts and feelings that I hear repeatedly; feelings that many people said they would not have predicted if they had been asked how they would feel about having cancer before they were diagnosed. It's not just that I've been told this, however, I've lived it. If I had written a story about how I would feel given a diagnosis of cancer, that story would be distant fiction relative to the reality.

Life With Cancer Depends on the Day

How someone feels with cancer is different every day. Istockphoto.com/Stock Photo©wgmbh

How someone feels physically and emotionally with cancer can vary day to day. It can vary by the hour, and even from one minute to the next.

Feelings are constantly changing.  When you ask someone with cancer how they feel they may hesitate. Some of the hesitation may be wondering if they should tell the truth lest they receive a lecture beginning with, "you need to stay positive." But another reason for the hesitation could be their mind asking for clarification: "Do you mean 11 pm last night, 9 am this morning, at noon, or at 2 pm this afternoon?

Not only is there a large span of emotions we experience with cancer, but the entire spectrum can occur within a 16 hour day.

Something that can surprise those without cancer is that what we feel does not always correlate strongly with circumstances. Life is like that with cancer. One day you may be feeling joyful despite hearing results of a scan that aren't very positive. On another day you may be feeling sadness even though your lab tests look great. Days with major hurdles may seem easy, while smooth flowing days are a struggle. One day you feel capable of conquering anything including cancer, the next day finding a stamp to mail a letter may seem an insurmountable task.  

Going back to the fear of hearing someone telling you to be positive as a cancer patient, yes, keeping a positive attitude with cancer is important. But this does NOT mean that cancer patients should cover up fears and hide tears at all cost. In contrast, it is very important that people with cancer allow themselves to express negative feelings. In doing so they are honoring themselves and their own emotions. In allowing them to experience their grief when needed, you can better help them celebrate their joy on another day, or even, in another minute.

Life With Cancer is Scary

Cancer is Scary. Istockphoto.con/Stock Photo©KatarzynaBialasiewicz

It doesn’t matter whether it’s a skin cancer or pancreatic cancer. It doesn't matter if it's stage 1 or it's stage 4. Being diagnosed and living with cancer is terrifying! 

It's not just your own cancer that raises fear. Our minds, often supplemented by input from well-intentioned friends, suddenly recall every cancer story we have ever heard. And of course, like news, the worst stand out. If that's not enough, we fear not just what cancer will mean to us, but what our cancer will mean to those we love.

I've often heard comments from people suggesting that those with one form or stage of cancer should have less fear than someone with a "milder" form or stage. I used the word mild intentionally, not to avoid using the phrase "less deadly" but because those who have what may be deemed a "mild" cancer to others, are no less frightened. It can help to realize that for any particular person who is diagnosed with a cancer of any site or degree for the first time, it is the worst cancer they have had, and likely the most traumatic thing they have experienced.

Considering these feelings is important when talking to someone with cancer because it's not always intuitive how someone will feel. It's important not to downplay the situation to a person with an earlier stage cancer by comparing them to someone with a more advanced cancer.  To do so invalidates the very true and deep feelings of fear they likely have.

I bring up the last paragraph because it's not something I would have considered or thought overly important until I heard several people I interviewed literally cry about this. Check out some of the other things people with cancer have shared with me in this list of things not to say to someone with cancer.

Life With Cancer is Lonely

Having cancer can feel lonely. Istockphoto.com/Stock Photo©prudkov

Even amidst a loving family or in a crowd of friends, cancer is lonely. Very lonely. No matter how strong and deep your support system, cancer is a journey that must be taken alone. A solo trek on a formidable journey we never wanted to take in the first place.

It's helpful for friends and family to understand this loneliness for several reasons.

Even if your loved one knows you love her and will never leave her, remind her again. Many people with cancer have experienced the hurt of friends leaving. Not everyone can handle hanging out with someone who has cancer for whatever reason. That does not mean they are bad people, and sometimes dearest friends disappear. It's hard to see someone you care about suffer. Yet having close friends shy away raises the question: "Will other friends disappear as well?"

In a different direction altogether, you may feel put off if your friend with cancer chooses to share his deepest thoughts with someone other than you. Especially if that someone happens to be a person he has only recently met.  Does this happen?

It does, and fairly often. People with cancer often find tremendous support and encouragement among people they meet in cancer support groups. Or perhaps they have an acquaintance who quickly becomes a close friend and confident because of a similar history of cancer in themselves or a loved one. This can be hard to understand and very painful emotionally for loved ones who are left out in this way. Why is your friend baring her heart to that almost stranger when you have been there for him every step of the way?

Keep in mind that discussing difficult topics and sharing intimate fears is draining. If your friend with cancer is not including you in some of these discussions, don't take it personally. It doesn't mean you are any less important in his life. It may be that he only has enough energy to share those difficult feelings once, and wishes to do so with someone who is experiencing or has experienced something similar.

As a final note, there is one commonly shared sentence I need to mention. The problem is that while the words are usually spoken lovingly in an attempt to make someone with cancer feel less alone, they can do just the opposite. Those words are, "I know just how you feel."  My dad shared this grievance with me during his cancer treatment and remarked, "How can they know how I feel? I don't even know how I feel."

Life With Cancer is Overwhelming

Cancer can be overwhelming. Istockphoto.com/Stock Photo©Highwaystarz-Photography

First, think about your own life and those around you who don’t have cancer. Do you ever feel too busy, or hear someone complain about being busy? If you answered no, you probably don't live within a thousand miles of me.

Now take that and add for starters, appointments:

  • Appointments with medical oncologists, radiation oncologists, surgeons, and more.
  • Second opinions.
  • Driving to and from appointments.
  • Scheduling those appointments.
  • Pharmacy visits (and driving).
  • Hospitalizations and surgery.
  • Chemotherapy visits, often many.
  • Radiation therapy visits, often many.
  • More visits for side effects of all of the above, and for side effects of the treatments used for those side effects.

Next add in educating yourself about your cancer, after all, being diagnosed with cancer is like registering for crash courses in anatomy and genetics and pharmacology, all in a foreign language (unless you're well versed in Latin.)

  • Surfing the internet (often for hours and hours) for information.
  • Talking to everyone you know who knows anything about cancer.
  • Reading information your doctors provide.
  • Reading books and information your friends give to you.

Next add in:

Even just thinking about how overwhelming cancer is....well...overwhelming.

Understanding just a bit about how overwhelming cancer can be, can make the difference between being a good friend or a great friend to someone with cancer. As with most of life, it's usually just the tiniest straw in the end that breaks the camel's back. In analogy, it's often something very simple and inconsequential that makes a day go from okay to awful for someone with cancer or vice versa. For me, hearing someone use the words "you need to" or "you should" in front of nearly anything could tip that camel in the wrong way. But in contrast, the simplest gestures—a card in the mail, or even a 2 sentence email of support—could strengthen that camel so it stood tall and strong. Is there any way you can remove just one tiny straw from the back of the camel for a friend with cancer? They will never forget your kindness.

Life With Cancer Can Be Maddening

Having cancer can make us angry. Istockphoto.com/Stock Photo©lisafx

Though anger is talked about less than some emotions when it comes to cancer, it's very common. Cancer is maddening.

First, there can be the "Why me?" One cancer survivor told me that she never asked that question, but later realized she was asking it in other ways. Instead of wondering why she had to get cancer when she was "doing everything right" she caught herself feeling angry at a neighbor. When she thought about it, she was feeling mad because her neighbor who didn't have cancer ignored her kids, while she herself longed to have the time she would never have with her kids to nurture them.

Certainly, the schedule of cancer treatments (and symptoms, which do not follow a schedule) is maddening. Not only is it exhausting, but it interferes with everything else you could be doing and enjoying. 

 Then there is functioning within the medical system, which can be maddening in any number of ways. Imagine a waiting room full of anxious people who are uncertain about the future and have questions that nobody can answer with certainty.

As noted above, it's important for people with cancer to express their anger and hurt feelings. Sometimes it just takes just a few moments of a friend's ear to make the clouds dissipate and the sun reappear.

Life With Cancer is Unending

It can feel unending to live with cancer. Istockphoto.com/Stock Photo©Alex Raths

Cancer isn't a sprint, it's a marathon—but the marathon doesn't have a finish line. With the exception of some blood-related cancers and some very early stage solid tumors, most cancers can't be "cured." Even for cancers that are treated aggressively, there remains an ongoing risk, though sometimes small, that the cancer could come back.  

So what does that mean?

The first roller-coaster is that of diagnosis and initial treatment.

If you manage to make it through that phase, the next phase arrives: Coping with the fear that a cancer that is gone will recur, or that a cancer that is stable, will progress.

The final roller coaster phase occurs for too many still. When cancer progresses. Then comes a roller coaster of trying to find treatments to extend life, of trying to decide when it's time to stop cancer treatment, and sadly, trying to decide how to prepare for the end of life.

In other words, no matter what type or stage of cancer a person has (with only a few exceptions) cancer can feel unending.  

It's important to point out once again that people can and do enjoy their lives even with advanced cancers, but feelings aren't wrong. They just are. There will be times for most when that never ending marathon leaves us wanting to step off the track for even just a day and be someone who doesn't carry identification saying she is a cancer survivor.

Life With Cancer Can Hurt

Having cancer can hurt. Istockphoto.com/Stock Photo©Siphotography

Cancer can be painful. but unlike the photo above, that hurt is not always visible to someone on the outside. Pain can cause irritability. That irritability, in turn, can make someone say negative things they would otherwise not say, or do things they would otherwise not do. If you ever feel hurt by your friend with cancer or are surprised by his reaction to something, ask yourself: "Is it pain speaking?"

 Cancer pain is one of the greatest fears for people with cancer. Though good treatments are available, many people are afraid to talk to their doctors about cancer pain treatment options. For some, it is the fear of addiction. For others, it's the desire to be "brave." I've even heard family members comment in the office on how "good" a cancer patient is because he refuses to take pain medications.  

There are two sides to this. Certainly, it is better if medications aren't needed. Almost any drug can have side effects, and usually the more medications the more side effects. Yet studies say that cancer patients—at least those with advanced cancers—are under-treated for pain.

What can you do as a friend? Be aware that cancer can hurt. Listen gently and don't condemn if your friend complains of pain. Urge him to talk to his doctor, or talk to his doctor yourself. Don't praise your friend for being able to handle pain without any treatment. Again, of course, that's the ideal, but he may remember the praise in the future when he really does need medication and then hesitate to talk. Once your friend talks to his doctor, they can work together to find whatever is needed or not needed to ensure he has the best quality of life possible.

Life With Cancer Changes How We See OURSELVES

Having cancer changes how we see ourselves. Istockphoto.com/Stock Photo©lisafx

No matter how much we refuse to be defined by our cancer, cancer does change how we view ourselves. Instead of being a mother, a daughter, a businesswoman, and a gardener, you suddenly become Jane Doe, cancer survivor. And how the world perceives us plays a role in how we see ourselves.

Cancer changes how we see ourselves physically. For many of us, there are scars. Some of us have the opportunity to see ourselves bald, and with different scarves and wigs. We can see ourselves thinner or heavier, or both but in different places, depending upon the treatment.

Cancer changes how we see ourselves emotionally. We are forced to come face to face with those feelings and issues that most of us learn to tuck safely aside when we reach adulthood. We experience what we once thought reserved for others. We see ourselves in a new way.

Cancer changes how we see ourselves spiritually. Not only does the threat to our mortality force us to review our faith or lack of faith and what lies beyond, but it changes how we see ourselves in the universe as a whole.

Many cancer survivors learn to embrace these changes, but it's still change. And just as a marriage can be as stressful as a divorce, even the good changes affect our lives.

Life With Cancer Changes How We See YOU

Cancer can change how we see other people. Istockphoto.com/Stock Photo©clownbusiness

Of course cancer changes how we see you—if it changes how we see ourselves, it changes how we see the world around us. As we see our roles in families and friendships change, the roles others play change as well. 

The changes in the way we see you often reflect our new grasp of mortality, and often these are positive. Studies say that cancer survivors often have a renewed sense of the value of friendships and a heightened sense of empathy.

Cancer made me appreciate much more the struggles that everyone has, especially the struggles that aren't visible on the outside. I'm more forgiving and less judgmental. Cancer gives us this unique "opportunity" to experience emotions we may have only dabbled in before, and in doing so, feel more connected to others when they experience these emotions.

Cancer tends to make people value life more, all life.​

That said, there are times that cancer survivors have told me they become more irritated with friends than they would have in the past. As one cancer survivor told me, she is much more tolerant of her girlfriends moments of depression, but can't handle it when she complains about not being able to find a parking spot near the door of a store.

Life With Cancer Changes Everything

Cancer changes everything. Istockphoto.com/Stock Photo©donskarpo

What changes in the life of someone with cancer? A better question would be "what doesn't change in the life of someone with cancer?" The simple answer is absolutely everything. Friends change, our roles in our families change, our goals change, our priorities change, even our values change.

If you or a loved one are living with cancer, think of your to-do list and priorities before and after cancer. While there may be a faint resemblance, it has probably undergone major revisions. A diagnosis of cancer changes not just what is important, but what isn’t important.  One lung cancer survivor told me now has 2 lists: her bucket list, and her f* it list. Aside from the profanity (which I tolerate more and am less judgmental of having had cancer) this does sum it up. Items at the bottom of your to-do list move to the top. Items at the top move down, or are eliminated altogether. It all changes.

Life With Cancer Can Make us Feel Loved

Having cancer can make us feel loved. Istockphoto.com/Stock Photo©lisafx

The experience of living with cancer isn't all negative. Having cancer can make us feel loved and connected.

Friends and families express feelings often taken for granted. Love and caring that may have been shown in gifts or actions are now expressed in words as well. One cancer survivor jokingly told me: "I wish I had cancer before I met my husband. I would have married him a lot sooner than I did knowing how loving he can be."

Despite cancer adding to the busyness of our lives, it can also cause us to be quiet and take time we otherwise would not. During chemotherapy, cancer patients and friends can have undivided time to really talk. In the hospital, it's impossible to empty the dishwasher and do a load of laundry. Given this time, time to speak of the emotion, sharing between people with cancer and loved ones often deepens.

 Cancer can also bring new friends to our lives. In asking this question many people told me about people they never would have met, had they not had cancer, and what a blessing those people have been in their lives.

Life With Cancer Can Be Fun and Full

Life with cancer can be full. Istockphoto.com/Stock Photo©AlexBrylov

 In a forward to her book "Uplifting" author Barbara Delinsky writes: ​"We don't see all of the women who have experienced breast cancer and moved on, whose lives are filled to overflowing with good stuff that has nothing to do with the disease. When it comes to breast cancer, we hear about two kinds of women--those who are activists, often celebrities, and those who die."  

The quote above is true for so many people with cancer. We don't hear stories about those who have dealt with cancer treatment or are living with cancer as a chronic disease--all while living a full life. We hear about people who die. We hear from people who live and write books talking about extraordinary journeys. Yet the majority of people diagnosed with cancer today fall between these extremes.

Life can be very full after a diagnosis of cancer. Look around you. It's estimated that in June of 2014 there were 14.5 million cancer survivors living in the United States, and this number is rapidly growing. Treatments are improving, even for the most advanced cancers.

Yes, there are scars. One cancer survivor I know has the following quote under her email signature: "Never be ashamed of a scar. It simply means that you were stronger than whatever tried to hurt you." That's not so far from the truth in medical research. Studies even tell us that cancer changes people in several positive ways.  

Nobody I've talked to with cancer would choose this journey. Yet along with all of the changes and the multitude of rocky emotions, life still carries meaning and joy. If you have a loved one with cancer, hang on through the down times. You might just get a chance to experience the up times as only survivors (and as I said in the beginning, we are all survivors of something) can do.


American Cancer Society. Emotional Impact of a Cancer Diagnosis. Updated 06/26/`4. http://www.cancer.org/treatment/treatmentsandsideeffects/emotionalsideeffects/copingwithcancerineverydaylife/a-message-of-hope-emotional-impact-of-cancer

American Cancer Society. Report: Number of Cancer Survivors Continues to Grow. June 1, 2014. http://www.cancer.org/cancer/news/news/report-number-of-cancer-survivors-continues-to-grow

American Society of Clinical Oncology. Cancer.net Cancer and Your Friends. Accessed 09/20/15. http://www.cancer.net/navigating-cancer-care/teens/family-friends-and-school/cancer-and-your-friends

American Society of Clinical Oncology. Cancer.net Self image and cancer. Accessed 09/20/15. http://www.cancer.net/coping-with-cancer/managing-emotions/self-image-and-cancer

Continue Reading