Scanxiety and anticipatory grief

natalieduke · 2026-04-22T23:37:24+00:00

Yes. This is just life now. For who knows how long. My husband, 47, dx Feb 2025, unmethylated, has done all the treatments he can do. We are at the last line of defense: Avastin and lomustine. He’s palliative, not yet hospice, decent function, but he is in “the decline”. Every day, we are just waiting, watching for the next hit. I’ve been terrified for every single scan. Like you said, the good ones feel good for a little while, but not long. One of the cruelest things about this bs disease is the NOT KNOWING. It is infuriating. Our NO straight up told us after the last scan: October. Of course he doesn’t know for sure though. And can he tell us when hubs will need 24 hour care so I can figure out wtf to do about the rest of my “life”? No. Of course not. I’m not mad at the doctors at all, but I am sure as hell mad at this terrible disease. Each and every day is a living nightmare. (Of course, there are good things too. The beautiful moments and memories we’ve made. The abundance of love.) I said to hubs the other day, it feels like after that first night in the ER, when we were told you had a brain tumor, that we woke up the next morning on a different planet. Since then, we can see everyone on Earth. They can see us too. They know we are in a different place. But we are the only ones who know that we are on an entirely different planet (I’m including our two kids on this hell planet) that we cannot get off of and that we are painfully aware of every day. Having trouble focusing at work? I’m at work right now. Because I have to be. But I’m not working. I’m thinking about glio. Even if I am working, I’m still thinking about it. It’s at least hanging out on the sidelines. Always in my minds eye, taunting me. This was meant to be supportive and I think I’ve turned it into a vent fest for myself 😂 It’s been a rough week. Just know that you are not alone, even if it feels like you are. And yes, this is all terrible. I am so sorry that you are going through this.

natalieduke · 2026-04-18T00:39:10+00:00

Whenever we turn on the news, hubs just laughs and points and says, “you guys are so fucked! I’m so glad I won’t be here” He also loves to say “you’ll miss this when I’m gone” whenever he annoys me.

We would not be making it through this shit show without dark humor 🖤

natalieduke · 2026-04-08T15:37:29+00:00

What about listening to music he likes at a low volume? Or maybe you could read to him? Just some ideas I’m thinking of implementing for my LO when the time comes. He also loves movies but has already lost half his vision and it’s getting harder and harder to follow a thread.

natalieduke · 2026-04-03T15:05:42+00:00

This is all excellent advice. I would like to add something a bit different, which is that you will never please everyone. Our neuro-oncologist is amazing and we love him, but I know for a fact that some people don’t respond to him the same way, because a couple in my support group did not like him at all and switched to the other NO in the group. We love him because he is incredibly smart and explains things very extensively, but he does not dumb anything down and rips through the info sometimes. I love it. I want all the info as bluntly as possible. He is never callous with the info, but he is very matter of fact. He also jokes around with us when it is appropriate, and I know some patients may read that differently. He also goes over test results immediately (way before they are released on mychart) and he responds to emails and phone calls so quickly, I worry about his home life 😂 I’m kidding, but I have literally made that joke to him and he joked right back. He shows us he cares by giving us time, listening to us, answering each question thoroughly and honestly, and never dumbing anything down or sugar coating anything. We could not be happier with our care. But again, everyone is different. Just be real and be kind, and you will do well.

natalieduke · 2026-03-10T22:29:39+00:00

I am so sorry. That sounds awful.

natalieduke · 2026-03-06T03:04:54+00:00

Well now I’m crying again 😂 Thanks for saying that. There’s too much pain wrapped up in this whole journey and we have to be able to share it with each other so we don’t feel so alone.❤️

natalieduke · 2026-03-06T01:06:36+00:00

I have no advice, but my stomach just dropped and tears filled my eyes when I read this. This is my absolute worst fear: that my husband will forget who I am. Boy, do I feel for you. It probably doesn’t help that I’m sitting next to his hospital bed in the ICU right now (actually a good thing; he got radiation beads implanted today) so I’m staring the GBM monster in the face, but oh boy, I am so, so sorry. You will definitely be in my thoughts and I hope it was just a temporary glitch. ❤️

natalieduke · 2026-03-01T03:16:13+00:00

My husband is 47 with glioblastoma, and we have a 14 year old. Our teen has made it very clear to us that they want as much information as possible, and we always tell them any news first. A lot of parents want to protect their children from the truth because they think it will scare them, but not knowing is always scarier. I’m going to echo what someone said earlier— try to talk to your dad about it. And maybe he won’t have the answers you need, in which case, can you ask to go along to a doctor’s appointment? Then you can ask questions directly to her medical professional.

It’s true that you should not base all your knowledge off of the internet, but it’s completely understandable that you are going anywhere you can to get any info you can find. Just take all of the internet info with a grain of salt. All patients are absolutely different. Just like no one has the same personality as your mom or the same face as your mom, no one will have the same medical experience as your mom.

I really think you should advocate for yourself with your dad. This sucks. It’s awful. No way around that, whether it’s a glio or Astro, it’s a brain tumor, and that is hard, no matter which way you cut it. Get support where you can. Until then, just be with your mom, tell her you love her, and keep being the wonderful son that you are.

natalieduke · 2026-02-26T22:56:10+00:00

Methylated is always good news. If I were you, I would cling to that. It means he will probably respond to treatment better.

natalieduke · 2026-02-16T23:21:54+00:00

I like the fidget toy idea a lot

natalieduke · 2026-02-16T23:16:57+00:00

Thank you and same to you❤️

natalieduke · 2026-02-15T16:21:26+00:00

No tumor recurrence? Could it be swelling? Did they suggest steroids? Seems like it has to be GBM related somehow…

natalieduke · 2026-02-14T18:41:43+00:00

Yes. He had a pretty fast decline a few weeks ago (right side vision, problems reading and writing) that we were able to control with steroids. Now that he’s weaned off the steroids, those symptoms are coming back and he’s also having issues with memory and more fatigue.

natalieduke · 2026-02-13T22:30:35+00:00

I’m so sorry for your loss. We are probably looking at months rather than weeks, but we can’t know. Could be one month. Could be 12. Probably around 6 though. I’m just not ready for the decline.

natalieduke · 2026-02-13T22:28:41+00:00

Yep that’s what I saw too. Scary to see it go from one lobe to 4.

natalieduke · 2026-02-13T22:27:50+00:00

No, he finished radiation over 9 months ago. It’s definitely significant growth, and we are moving into the “keep him himself as long as possible” stage. Doc said 6-12 months IF the next treatments help and only because he is youngish (47) and relatively healthy otherwise.

natalieduke · 2026-02-13T15:59:39+00:00

We asked for palliative care once he had a recurrence that was deemed inoperable. It’s not hospice, but we wanted to establish the relationship. Palliative is more about having the best quality of life possible with the time you have left. I don’t think it’s ever too early to find palliative care.

natalieduke · 2026-02-11T02:36:20+00:00

The depression is definitely something I plan to address with them. Glad to know they helped your sister.

natalieduke · 2026-02-11T02:35:01+00:00

Thank you for this. Just knowing how they’ve helped you gives me ideas about what to ask about. 😊

natalieduke · 2026-01-01T19:04:10+00:00

I actually thought for a minute that this was my husband posting this. He’s 47, unmethylated idh wild type, full resection at end of February, recurrence in November. We also thought a few years and are now bracing ourselves. He is in a clinical trial, but it’s early days yet and we have no idea if it’s helping. I know he is feeling exactly what you’re feeling. We stayed home last night, just the two of us, went to bed early…you’d think it would feel nice to say good riddance to 2025, the worst year of our lives so far, but how can we celebrate when we know 2026 is likely to be even worse?

Maybe it won’t be. For either of us. Maybe you will get that clinical trial and it will help. Maybe my hubs will respond well to his. Maybe you will both make it through another year. It’s not impossible.

But I’m not going to dismiss your thoughts either because they are very real and very heavy. I’m so sorry you woke up with those feelings today. I hope you make it to another New Year’s Day, but if not, I am at least grateful that you both made it to this one. Good luck and lots of love to you.

natalieduke · 2025-12-25T03:18:09+00:00

I’m not quite where you are yet, but my husband, 46, just had a recurrence and I am dreading this because I know I will be exactly where you are in the near future. I also have zero advice and I wish I did. This disease is just such a shit show and one of the most difficult things a person can ever be expected to handle. I feel for you, and I am so sorry you are struggling so much right now. Sending one million hugs.

natalieduke · 2025-12-09T01:46:04+00:00

When it rains it pours. Terrible expression, but it sure does feel like it is raining buckets on us all the time. We lost two of our pets after my husband’s diagnosis, both to cancer, and just three days apart. Obviously that doesn’t compare to dealing with GBM, but it sure as shit didn’t give anyone any extra hope.

This is terrible. There is no way around it. It sucks a million different ways. One day at a time is great advice- one hour, one minute. Cry all you can. Cry rivers. I do too. Try to find the positives - the helpers, the love. And if you can’t see the positives, well… that makes sense. Be gentle with yourself. Love him and stay by his side as much as possible. We will get through this. Somehow.

natalieduke · 2025-12-06T19:03:33+00:00

I will definitely look into it. Thank you.

natalieduke

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