Living with a Terminal Diagnosis: Facing Mortality with Grace

Starting the Conversation: How I Am Really Doing

I wanted to share how I am doing. I recently updated my Advance Care Directive (added an obituary, included hospice care instructions, and wrote a statement to my family), and it upset some of my family. Some people think I am being morbid or that I lack empathy for my own situation. The truth is, even with all the support groups out there, it is hard to explain what I am feeling. I was diagnosed with Glioblastoma and finding comfort or support for that is difficult.

Living with a terminal diagnosis is not just physically demanding—it’s emotionally exhausting. The world around you continues as usual, but your internal landscape shifts into unfamiliar territory. There are fears you cannot shake, thoughts that linger, and an ever-present awareness that time might be running out.

Why Glioblastoma Feels So Isolating

Statistics show there are only about 12,000 cases diagnosed in the U.S. each year. Compare that to 300,000 cases of breast cancer, 150,000 cases of colon cancer, and 210,000 cases of lung cancer. I think you get my point. So, when people ask why it is hard for me to find comfort, it is because there are fewer people I can relate to. The cases are rare, the prognosis is grim, and there is not much focus on advancing care. I can't even find a good Blog that shares someone's experiences. If you Google Cancer or Colon Blog, dozens pop up. That makes finding relatable and reliable sources hard.

Plus, the prognosis and treatments vary so much from person to person. All Glioblastomas are Grade 4, which is similar to being at stage 4 in other cancers. Knowing you are going to die, feeling like there is a stopwatch on your life—it is the hardest thing to accept. Some people say, “We all have an expiration date.” To those people, I say, “fuck off. Really, go sit on a stick and ride away.” It is not you. It is not your mind this messes with every day.

When Positivity Becomes Pressure

People often tell me to stay positive and have faith, but that is exactly what I am doing. I eat well, take my medications, and have cut back on work to reduce stress. I blog to raise awareness, focus on my mental health, and try different supplements and vitamins. I even pray and have found a renewed sense of faith. So, the idea that I am giving up or throwing in the towel is just not accurate.

There is a misconception that talking about death or updating your Advanced Care Directive means you are giving up. But facing a terminal diagnosis head-on is not defeat—it is courage. It is preparation. It is ownership over how your final chapter is written. I do not want to be caught off guard. I want to have a say in what happens, and more importantly, I want to protect my loved ones from having to make impossible decisions in moments of grief.

Each of Us Has a Different Fight

We each have our own fight, and we all approach it differently. Some charge in guns blazing, while others take a more strategic approach—scoping out the situation, learning, listening, and developing a plan. I am still in that planning stage. I want to understand the road ahead of me. I want to be prepared, and more than anything, I want to feel in control of something.

My journey with a terminal diagnosis has taught me that resilience is not about being upbeat every minute of the day. It is about standing up, again and again, even when your heart is tired and your body is weaker than it used to be. It is about finding small victories in daily routines and accepting that grief is not always loud—it is often silent, waiting for you in quiet moments.

So, How Am I Really Doing?

So, back to the original question—how am I doing? Well, I am sad, I am tired, and I am unapologetic about how I feel. I know that is a lot to unpack, but I am sad because no matter how hard I try, nothing will ever be the same. That makes me sad. I do not cry every day, but I cry more than I used to. I also laugh more because I have learned to appreciate things I never did before.

I am also tired—tired of trying so hard to be happy for everyone around me, of forcing a smile when I want to scream, or laughing when I really want to cry. And I will not apologize for any of it. I just want you to understand. These feelings are not a sign of mental illness or being irrational; they are part of working through it. That is what I am trying to do. Lastly, I want to be clear—I do not want to die. I want to live. But, like everything else in my life, like every challenge I have faced and every accomplishment I have achieved, it takes practice.

The Process of Acceptance

I know that might sound morbid, but learning to accept death, to come to terms with dying, is a process. It is not about giving up—it is about understanding. It is about learning. It is a test of resilience, of how we face the inevitable with grace and courage, just as we have faced all of life’s other tests. When you live with a terminal diagnosis, death is no longer abstract. It becomes real. And so, acceptance becomes part of survival. Not in a physical sense, but in a spiritual, emotional one.

Preparing does not mean I have lost hope. It means I value what remains. I want to make sure that when I am no longer here, my loved ones feel secure, supported, and protected. I want them to know I thought of them, even when I was scared, even when I was hurting. That is not defeat. That is love.

Helpful Resources

• Advance Care Planning Resources
• American Cancer Society: End-of-Life Support
• JohnVsGBM Blog Archive

Tags: Terminal Diagnosis, Glioblastoma, Cancer Awareness, Mental Health, End-of-Life Planning, JohnVsGBM

Disclaimer: This blog reflects personal experiences and is not a substitute for professional medical advice. If you are facing a terminal diagnosis or emotional distress, please consult your doctor or call 988 for support.