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What to Say (Or Not Say) to Someone Who Is Terminally Ill

By Debbie Hensleigh December 16, 2022 Mindset

I’ve been on this trek (more arduous than a journey) with terminal cancer for a year now. For six months or so, I kept silent about my diagnosis to give me time to process and adjust with my family and a few close friends.

Now, though, I am no longer in intense pain, I’ve responded well to immunotherapy (until I had to stop treatments due to adverse side effects), and have outlived original predictions. While I am not at all back to normal and do not expect to be, I am grateful and content and happy to be alive.

I Welcome Conversations That Allow Me to Be Honest

“I have terminal cancer” is not something I shy away from saying. And I enjoy having conversations about how I am doing. Some good conversations come from people who are curious about my whole cancer story. It is a pretty good feeling to have someone, even someone I don’t know intimately, be interested in my story.

I don’t mind people asking how I am doing. At first, I wasn’t sure how to answer that; too little information seemed inauthentic, too much felt like over sharing. Now, I feel free to answer honestly. Lately, it is, “I’m doing okay,” or “not so bad.” I also enjoy talking about normal things besides my cancer.

One friend, after hearing through the grapevine of my illness, emailed and asked, “How bad is it?” While I wouldn’t suggest that as an opening, I know this person and could trust that he was coming from genuine care. It took me a day or so to answer, but I was not offended.

On the other hand, there are things that have been said to me that just rub me the wrong way. I try to be gracious, but I cringe on the inside. Here are some of the thoughts I have on unhelpful, for me, comments.

Everything Happens for a Reason

Kate Bowler is an author I have discovered since my diagnosis of terminal cancer. A friend sent me one of her books, and I have started following her podcast. The book I received is titled, Everything Happens for a Reason and Other Lies I Have Loved.

I had not really thought about that saying, but after seeing Bowler’s blatant statement, it made a lot of sense. Cancer is not something that has a reason behind it. I can find silver linings, like how our family has come together to support me, but I don’t think there is a reason for my cancer.

Unless is it linked to some as yet to be identified biological cause. Actually, the cancer I have is rare and 75% of the cases are in men. Smoking, which I have not done for 50 years is a primary risk factor. There is no reason for this illness that I have found other than some of my cells going haywire and attacking good cells.

You Must Be a Special Person for God to Choose You for Difficulty

If this is true, there are a lot of special people out there, which makes being special not so special. Two million people will be diagnosed with cancer this year. And 50 percent of those are between the ages or 65 and 74. Getting older is the greatest risk of having cancer.

Being special does not come from having a terminal disease. I am special because I am unique, just as each human is. Unique and special.

Have You Tried ___________?

There is plenty of information and opinion and personal and/or remote experience with cancer. My own personal trek with the disease is influenced by an aunt and a mother-in-law who both succumbed to different types of cancer.

Two brothers-in-law have died from pancreatic cancer. They had different approaches to the disease, and both had the same outcome. A sister-in-law died of breast cancer. A sister is a survivor. We all know people who have been ill.

When I was diagnosed, my first thought was, “This is not a medical emergency. Take your time to process.” That came from observing others. I remember reading an article somewhere that suggested that cancer becomes an emotional emergency that clouds judgment. I held on to that and it came in handy.

I am a pretty resourceful person. I talk to folks. I read a lot. I ask questions. I love to google almost any curiosity I have. I am quite capable of finding alternative treatments on my own. And while I am open to suggestions, I have not considered a water-only fast to cure my cancer or a strict diet change or trying an untested, new treatment.

The cancer I have is rare and aggressive. After much research and prayer consideration, I have chosen to take advantage of Board certified oncologists in a cancer center. Thankfully, I have responded well to immunotherapy which was only recently approved for my type of cancer.

I am confident in my ability to find and choose the treatment I am comfortable with and am not grasping for straws.

Your Future Depends on Your Mindset

I have been a mentor, teacher, trainer, and/or coach for most of my adult life. I deeply value and have experienced the importance of mindset. A favorite topic of mine has been training individuals on how to replace limiting beliefs with affirmation statements to change their destructive behaviors.

I am at peace with my cancer trek. I’m grateful for what one doctor told me are my “bonus days.” I am thankful, deeply, for each good night of sleep I have. I love my husband and five children and enjoy my frequent interactions with each of them. I love getting cards and phone calls and going for coffee with friends. I think most people who know me would say I am positive and encouraging.

And I am realistic. And pragmatic.

A positive attitude certainly makes my days happier, but I see plenty of negative people being cured of different types of cancer. I have a terminal illness. It is inoperable. I am doing all I know to do to stay as strong and healthy as possible (which takes a considerable amount of mental energy). I am at peace with the thought of my own death. My cancer is not in my mind. It is in my pelvis.

Keep Fighting

I can be pretty competitive. I don’t really mind a good fight if it is fair. But if cancer is a battle, it is certainly not a fair one.

Truth is, though, that I can keep fighting for a positive attitude. I can pursue second opinions. I can demand to be heard in regard to my needs. I can ask my questions.

But I can’t fight my own body. I can’t fight the bad cells that are changing, ruining the good function of the rest of my body. I can agree to infusions of drugs approved for my treatment. But cancer is not a fight I will win or lose. It is just there. By definition, “cancer is a disease in which some of the body’s cells grow uncontrollably and spread to other parts of the body.”

I have “truth” and “grace” tattooed on my forearms, right where I can see my values often. Responding with truth and grace to people is my aim now. I recognize that most people are commenting from their own source of comfort, and I can appreciate that they are trying to find the right thing to say. I truly appreciate anyone’s care for me.

But, for those who want to know what might be encouraging to someone like me who is sick, just be there with no demands or attempts to fix us. Ask us how we are doing and offer to hear our story. Tell us how you are doing. Keep the relationship going with openness and love.

Let’s Have a Conversation:

Do you know someone who is terminally ill? What was your first reaction when you learned about their condition? In retrospect, do you think it was the right one?

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Barbara Chapman

I had stage 2 breast cancer 22 years ago; double mastectomy, chemo and radiation. I lost some friends over it because they didn’t know what to say… so they ran. I understand. Until you’re in those shoes, it’s hard to know what to say. I agree 100% on the “what not to say”s. I can add a what not to do: When I had lost my hair (never came back, btw…) , I was walking down the hall of the hospital when I was finished with a treatment. No wig or scarf on. I had two women run up to me… giggling… and then started vigorously rubbing my head, saying it was good luck. It was awful!!! Anyway, you’re doing a great service by posting this. People need to know. Sending hugs… Barb

Tracey

This is the first honest conversation I have ever heard from the patients perspective. Thank you. I will keep this in my mind and heart as I go forward. Bless you.

Karyn

My husband has terminal cancer with probably months to go. I love the term bonus days. I am trying to manage my anxiety. He us very positive. I do find it hard when people as how I am. I know they are being kind but I want to say how would you feel if it was happening to you. I think it’s hard for everyone and a lonely road even when surrounded by friends
Karyn

Felicia

I’m so sorry about any suffering you have experienced, and admire your resilience. I was diagnosed with Chronic Lymphocytic Leukemia about a year and a half ago. I’m about a year overdue for bloodwork and not sure how it’s progressed. I’m on watch and wait, and could live many more years. I was met with indifference from the Cancer Care Center where I live, so I am getting a referral to a hematologist/oncologist who may actually explain the results of my previous bloodwork, and perhaps give an idea of what stage I’m in.

I’ve decided to not undergo any major treatments should it come to that. I would rather live my best life in the moment, and seek palliative care should it come to that. I
can’t afford to stop working because I’ll lose my health insurance. If I undergo treatment, I won’t be able to work.

If I can ski this winter, I will be quite happy. I still work 40-45 hours/week, take drumming classes, go to the gym, etc. As long as I can stay active, I feel blessed.

Thank you for your article. I do let some people know so that if they do see me not being my usual Energizer Bunny self, it’s not laziness. The fatigue can be overwhelming. Not fatal, but it does impact my best laid plans.

Well-meaning friends sometimes tell me to take supplements or to check certain websites. I thank them then go on about my day. One med student, the one who gave me the news, told me it wasn’t a big deal…alrighty then….

Thank you again for writing this article! I wish you many more bonus days!

Toni Stritzke

Fantastic article. The best I have read in 2022.

The Author

Debbie Hensleigh is a serial entrepreneur and business coach who is intent on living life on purpose. She is a speaker, writer and leads workshops on intentionally designing your best ThirdThird, from ages 60 to 90. Building on the FirstThird (learning years) and the SecondThird (earning years), the ThirdThird can be the best Third. Please visit Debbie’s website here http://yourbestthirdthird.com

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