Based on my experience with my mother’s GBM diagnosis.
My Mom was diagnosed with a grade IV Glioblastoma Multiforme (GBM) brain tumor in March of 2022. GBM is an extremely aggressive form of brain cancer. GBM is fast-growing and extraordinarily resistant to treatment. According to the National Brain Tumor Society, “The five-year survival rate for glioblastoma patients is only 6.9 percent, and the average length of survival for glioblastoma patients is estimated to be only 8 months.” (https://braintumor.org/brain-tumors/about-brain-tumors/brain-tumor-types/astrocytoma/#glioblastoma)
Learning all of these horrendous facts and figures was heartbreaking. Our friends and family have been incredible sources of emotional support. However, although they always have the best of intentions. Understandably, many just don’t know what to say, and inadvertently, the experience of interacting with them can take a mental and emotional toll on us.
Before experiencing my Mom’s diagnosis, I would have said and done many of the same things without ever thinking much about it. Therefore, I decided to share some of our experiences in hopes of helping others when interacting with friends or family in a similar circumstance. While it is hard to know what to say in these situations, I can recommend some things to avoid saying.
- Don’t make the sick person teach you about their disease.
The statistics I gave at the beginning of this piece were hard enough to learn, process, and accept. I have, unfortunately, had to repeat them many, many times to help others understand the reality of her illness. This puts both them and myself in an uncomfortable position. They have to react to this new understanding in front of me, and I have to explain the disease and the likely outcome, my worst fear, without losing it emotionally myself.
If you learn someone is facing an illness and have the opportunity to learn more about it before interacting with them, please do. A quick Google search is all it takes to know a bit about the illness, treatments, and prognosis they are facing.
If you don’t have this opportunity, express your sympathy for what they are going through, but only ask questions if it seems appropriate. You can search for more details at a later time.
I, of course, expected to have to explain her illness to some close family members or friends when I reached out to them. However, it was often awkward and uncomfortable to explain it to acquaintances who approached with something like, “I heard about your Mom. I’m so sorry. What kind of cancer does she have? That’s a really bad one, right?” or “Don’t worry she’s tough, she will be fine!”
2. Don’t try too hard to “look on the bright side.”
A person with a terminal illness typically knows the statistics. They know their likelihood of surviving. Additionally, they are still dealing with treatments that can cause terrible side effects of their own and only provide the slimmest glimmer of hope.
You may feel like you are being positive, giving them hope, or keeping their spirits up. Sometimes, though, you may be dismissing or glossing over the hard parts of what they are going through. It may also make them feel like if they express these hardships, they aren’t being positive, or they are raining on your parade.
My Mom has had a tumor resection, two rounds of chemo, two rounds of radiation, and participated in a clinical trial. She has made it beyond the median 14–18 month life expectancy. Despite all of this, she still has four tumors in her brain. These treatments are meant to slow progression and give her more time. There is currently no cure for GBM. This is a reality we understand and are trying to accept.
While the idea of “hope” seems like a good thing, it can be a carrot on a string when the odds are stacked against you.
3. Avoid phrases like “You got this” or “You can do it.”
This one is a pet peeve of my moms. It was a surprise to me the first time she mentioned it because so many people say it innocently as encouragement or to give a sense of strength and power. Then my Mom said, “I got this? It’s a terminal illness, I am doing what I can, but I don’t got shit,” and it made so much sense.
When facing a terminal diagnosis, you can try every treatment available, and still the illness progresses. These phrases come off as trite and thoughtless. Instead, try asking how treatments are going. Let the person know you admire them for how well they are doing or offer your support if they need anything. Just make sure your offer is genuine if you make it.
4. Don’t Equate treatment with a “fight” or “battle.”
While this kind of language is frequently used when referring to a person undergoing cancer treatments, it can actually be pretty problematic.
This is another one my Mom shined the light on for me. She was talking about how people always tell her to “keep fighting” or that she will “kick cancer’s butt.” She said, “so if I die, does that mean I lost, or I didn’t fight hard enough?”
This broke my heart, even though she said it jokingly. Perhaps this makes sense if the cancer a person is fighting is treatable or if a majority of people do go into remission. Even then, however, does that mean those that didn’t “beat it” lost? Did they not fight hard enough?
Instead, try having a conversation about the reality of the toll treatment takes and reassuring them that if it becomes too hard on them, it’s okay. I had this conversation with Mom. I told her that I want her around forever but that if the day comes when the treatments are too hard on her, or they aren’t helping enough, and she wants to stop them, I would support her and would never resent her for choosing to stop. She was clearly relieved to hear this, and it was apparent the thought had been weighing on her.
5. Don’t make them comfort you.
It is, of course, normal to be flooded with emotion when a loved one is diagnosed with an incurable disease. However, at least when dealing with a person who is sick, try to maintain your composure and not make it about you. I, myself, have been guilty of this. I have lost it with my Mom, feeling bad for myself about how much her dying will affect me. Luckily, she’s my Mom, so she understands. She feels worse for my sister and me, knowing the pain and heartache we will experience, than she does for herself as well. She says, “I’ll be fine. I’ll be dead. It’s you guys I worry about,” in classic mom fashion.
6. Don’t ask what you can do. Just do it.
Almost everyone wants to know how they can help or what they can do. These offers, when genuine, are incredibly thoughtful. The problem is that often, we didn’t know what we needed or felt like we could handle everything on our own and didn’t want to be bothersome.
The best things people have done for us are those we didn’t even ask for. An aunt called and said she would give mom a ride to her next treatment, giving me a break. A cousin who worked with my Mom packed up and delivered all of my Mom’s personal items from her office when she could no longer work, saving us a trip in and the difficult chore of packing it up ourselves. Other family members called out of nowhere and told us they were dropping off dinner later that week. I remember when we were at the hospital after my dad’s motorcycle accident, someone called and booked us a hotel next to the hospital, knowing we would need some good rest as we waited. We were there for eight days before he passed, and family members covered the entire hotel stay without even asking.
These unexpected and unrequested gestures of kindness have made a lasting impact on me. They are some of the most meaningful experiences of my life and have inspired me to be this way for others.
7. Let them know how you feel about them without making them feel like you are saying goodbye.
Having lost my father unexpectedly at 19, I can attest that the truth is we should treat everyone we love like it’s the last time we might ever see them, every single day. When we know someone is facing that possibility, though, we tend to want to seize the day and tell them everything we never got the chance to or didn’t say enough.
Unless a person has only hours to live, though, you shouldn’t give a deathbed confession or goodbye.
Don’t preface statements with anything like, “I wish I would have told you before,” or refer to them dying at all, such as, “I want to tell you something before it’s too late.”
Instead, just say whatever you are thinking in the most casual way possible. For example, if you didn’t tell them you loved them enough, try just telling them every day from then on that you love them. Or if you didn’t tell them everything you are thankful to them for, work it into a conversation intentionally but organically.
Try these strategies with all your loved ones, even the healthy ones. Tomorrow is promised to no one. Just because a person doesn’t have a terminal illness doesn’t mean you can wait to tell them how you feel. But, explicitly telling someone with a terminal illness everything you have been holding onto will only remind them they are dying and will lessen the sincerity of your words.
Final Thoughts
It is very difficult to know how to act or what to say when you find out someone is very sick. Although my mom and I have talked about these things, we have never faulted or resented anyone for making these faux pas. We know everyone has the best of intentions and loves us. Still, we are going through a great deal of emotions and heartache, and it can be difficult to want to interact with others when we are afraid of the mental or emotional toll that will take on us to have the interaction. It is my hope that, by writing this, I will enable readers to be a source of peace and comfort to others in a similar situation.
BLEW WRITING LLC 