What It’s Really Like To Have Cancer

What It’s Really Like To Have Cancer

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

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 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

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

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

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:

  • Feeling any number of symptoms from nausea to neuropathy.
  • A roller coaster of cancer emotions.
  •  Nasty cancer fatigue.

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

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

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.