What to Say (Or Not Say) to Someone Who Is Terminally Ill
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?
This is so true. I worked on a palliative care unit and then, many years later, was my ex husband’s primary person during his terminal pancreatic cancer. In his case, he became so fed up with what you mention, that he refused to see anyone but myself and his adult children. People simply don’t know what to say so they blurt out the wrong things or they instead try to be overly helpful and forget about the person’s thoughts or feelings. It’s a delicate balance sometimes for the average person to get this right. That’s where the counseling on palliative care was helpful for family. But not everyone has access to that.
i have a hip that’s been misaligned from the beginning, though only diagnosed as such recently. i hear loud and clear how everyone has a solution (yoga might and does aid flexibility somewhat, but you can’t stretch a bone from around a joint) – people offering solutions when they don’t hold any professional qualifications or even know what my x-rays look like – ach!
though not ‘terminal’, i will never be ‘normal’, and it’s already deteriorated since diagnosis. i can’t afford a double hip replacement, so i keep moving as much as i can. i think only the individual can know all the details.
also, the ‘everything happens for a reason’ – i share your feelings there. there are ALWAYS many, many reasons for a thing to happen. just as there are Always many, many possible outcomes. your choices have gotten you some time, i’m happy for you for that. i also know some days are just hard. choosing to find the reasons to relish life in its new manifestation can be challenging, but worth the positive outlook.
lastly, i can’t imagine what you’re going through. it sounds like you are admirable in your trek through this part of your journey, and i wish you a path with few boulders.
thank you.
What a brave, wise, and sensitive article. I will carry this with me as I interact with others. Thank you very much for sharing your story and your wisdom.
My husband has had malignant brain cancer 3 times in the last 20 years. He has beat ALL the odds. Some years ago a friend said, “ We all thought he’d die !” I was so shocked, I practically chocked, so didn’t say anything. She didn’t mean any harm, but it was very very inappropriate. Today, I would answer back, “ So, how does that help me?” People just blurt out before thinking. So be careful how and what you say.
Thank you, Debbie, for sharing your story and coaching us on how we might be better friends to those with terminal illnesses. You sound like an amazing woman.