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I’m in immunotherapy for bladder cancer. At this point, I have NED status, but I’ll continue this therapy for up to two years. I may have to stop sooner if the side effects become intolerable.

Before the cancer diagnosis, I could eat anything. Afterward, I started losing weight because I simply couldn’t eat. I know that’s pretty normal. When treatment started, I tried eating bread, and it felt disgusting in my mouth. I had to spit it out. The same thing happened with peanut butter, hot dogs, and several other foods I used to eat.

I’m not complaining. Most of the things I can’t eat now probably weren’t that great for me anyway. But it does limit my options for a quick snack or lunch.

Has anyone else experienced this?

Today, there was a post in this sub that referenced the millions that cancer has taken and the many that have survived this relentless killer. The poster referenced the ones who participated in trials, took risky treatment but didn’t survive. Without them, the treatment that is available today would not exist.

I too, stand grateful and in awe of their courage and fortitude.

Many years ago, Steve Green, a Christian artist wrote a song called Find Us Faithful. Some lines are appropriate for the journey that cancer takes us through.

“We are pilgrims on the journey of the narrow road. And those who’ve gone before us line the way. Cheering on the faithful, encouraging the weary. Their lives a stirring testament to God’s sustaining grace.”

Even though it seems incredibly personal; cancer is a reminder of mortality, that we are very frail creatures and that we will be gone from this world eventually. But the journey is not singular. Yes, we walk through our fears seemingly alone, but we are not. Cancer cannot be framed that way because it’s bigger than one person. It can only be understood in any meaningful way by those who walked and are walking on that journey. Those who have walked close to this kind of pain and suffering.

There is also a personal sense of awe. Real courage is moving forward in fear. You cannot have courage without fear. It’s also real endurance and the kind of strength that bubbles to the surface only in the most difficult of times.

Those “who have gone before” suffered and perhaps died but there is great meaning because more people are living longer, even being “cured” because of those who took the journey in the decades before us.

Even in loss, there is a legacy. Even in grief, there is encouragement. Even when we feel stopped, we are always moving forward.

I am thankful. “May all who come behind us, find us faithful.”

 

Right now, I am in immunotherapy (Padcev/Keytruda). Most recent scans show no evidence of disease.

I do not believe cancer is fair. There is nothing fair about watching a life be interrupted by pain, fear, and the unknown. There is nothing fair about seeing someone who is loving, faithful, and full of strength suddenly have to carry a burden they never asked for. Cancer does not measure goodness before it enters a person’s life, and that is one of the hardest truths to face. It can shake your soul, bring tears that words cannot explain, and leave us asking questions that do not have easy or even any answers. Sometimes it feels cruel because it touches not only the body, but also the mind, the family, and the spirit. It changes ordinary days and fills them with worry, WAITING and exhaustion. I think it is important to be honest about that pain instead of pretending it does not hurt. Even so, in the middle of all that sorrow, I still believe God does not turn away. I believe He stays close to the brokenhearted, listens to every cry, and gives strength for moments that feel impossible. Cancer is not fair, but I believe God can still hold us together when everything in us feels like it is falling apart.

What does this community think?

Do you feel bitter, resigned, resolved, hateful, angry, defenseless or depressed? I understand if you don't have faith. I also understand if you do have faith and are angry at God.

Waiting rooms have their own weather. The A/C is always a little too cold, the kind of cold that finds your bare skin no matter how you move away from it. The chairs are always a little too hard, upholstered in something that looks soft but isn’t. The TV is always talking to itself somewhere overhead. The volume is such that you can’t understand what’s being said, but too loud anyway. Every so often an automatic door opens, and you hear a burst of hallway noise—phones, footsteps, someone saying a name—and then it seals again like nothing happened.

Everyone in the room is doing that waiting room math where you count minutes, looking at their Fitbit or their Apple watches. I tried to pick a neutral expression, the one you wear in elevators, and hold it there. My hands wouldn’t cooperate. They kept wanting to fidget, to grab for my own wrist like I could anchor myself that way.

Debbie sat with me, close enough that our shoulders touched, not dramatic about it—just present. Her purse was on the floor between us.  Her knees angled toward mine, as if she could block whatever was coming. I could feel her looking at the side of my face from time to time like she was trying to remember what I look like.

Then she leaned in—not in a conspiratorial way, more like she was making sure her voice didn’t shake. “Do you want me to ask a few questions for you, or do you want to do it?” I stared at the floor for a second, at the scuff marks and the impossible cleanliness around them and tried to imagine my mouth forming sensible sentences. Finally, I said, “You.” It came out smaller than I meant it to. I barely heard it myself.

“OK, when we get called back there, I’ll ask for a plan, the next steps, who to call when something doesn’t seem right. If you don’t hear what the doctor is saying, say so. I’ll ask again. We need to understand the process.”

Then she looked in my eyes, they clouded over a bit. Her bottom lip trembled a bit. Just a bit. There was fear mixed with determination and something else that I couldn’t explain. She swallowed and looked away for a moment. “One day at a time. One moment. Remember, I am your Caretaker."

A breath I didn’t know I was holding finally let go. My shoulders dropped a little. I sat there trying to look normal while my heart practiced running, sprinting in place behind my ribs. I listened for our name and watched the door like there was something behind it that would remove the cloud of the unknown. Debbie stared straight ahead, calm on purpose, even with fear sitting there with us. Her steadiness in the midst of her own fear helped beyond measure.

 

Those who have experienced both, which one is preferred? I’ve only had immunotherapy.

Mine is bread. I miss it but now it’s disgusting. Hot dogs and several other things too.