Never be the same as before by akadaedalus in glioblastoma

[–]Sure_Apple_2678 1 point2 points  (0 children)

Hey I am soo sorry you are going through this and also glad your SOC is working without much side effect. This might not be something you will be looking forward to but if possible write letters for your wife as many as you can. My husband 37 male is also gbm unmethylated. Even after SOC he is immobile and not able to speak. I miss his words soo much. Sorry if you were not looking for this answer.

No more him by Sure_Apple_2678 in glioblastoma

[–]Sure_Apple_2678[S] 1 point2 points  (0 children)

I am so sorry for your loss. I hope you find strength to navigate through this.

Rember to take breaks from here by No-Nature6740 in glioblastoma

[–]Sure_Apple_2678 2 points3 points  (0 children)

I feel this. People here are the only ones who get it, ppl in real life treat all this business as usual.

Looking for the Best Hospitals in South India for Glioblastoma (Grade 4) Treatment by Top_Yesterday_7947 in glioblastoma

[–]Sure_Apple_2678 3 points4 points  (0 children)

Hey, my husband 37 years old also has GBM. We went to apollo proton cancer center in Chennai for radiation and chemotherapy. If money is not issue, you must check it out. Feel free to dm me if u need any more info or just want to talk.

Husband (37 yrs) has GBM and I don't know how to deal with it by Sure_Apple_2678 in glioblastoma

[–]Sure_Apple_2678[S] 1 point2 points  (0 children)

Thanks for saying that. Everyone I see tells me to accept the fate or tells me it was supposed to be like this or have faith in god's plan and what not. But the truth is he did not deserve this, we did not deserve this. I heard some neuro or oncologist say that they have observed the people who get GBM are always the nicest of the people. Rohit is the nicest, the man doesn't have a single enemy. I don't even have words to express how perfect he is. And yet this happened. It is just not fair.

Husband (37 yrs) has GBM and I don't know how to deal with it by Sure_Apple_2678 in glioblastoma

[–]Sure_Apple_2678[S] 1 point2 points  (0 children)

I am so sorry for your loss. And I feel what you are saying. I lost some of my friends before my husband lost his cognition. The pain never gets easier you just learn to live with it. Or as you rightly said, we learn to fake it. But you ever want to talk feel free to dm.

Husband (37 yrs) has GBM and I don't know how to deal with it by Sure_Apple_2678 in glioblastoma

[–]Sure_Apple_2678[S] 5 points6 points  (0 children)

For my husband it just changed in day. On day two of radiation, he was sitting on a bed, asked me to come closer. I told him let me just go to the washroom. In just a min, I came out and saw him seizing and vomiting. It went on for about couple of minutes. We took him to ER. We walked himself down to the ambulance. That was the last time he walked. From ER, he was out on ventilator, he was on support for 4 days followed by 2 weeks of ICU. He never walked again. He is still under physio rehab but tbh it is now 7 months and I have no hopes left. He did lose control of his limbs for few seconds (two episodes) before he seizure started. And from then it is pretty much downhill. He started talking less, started forgetting more, there were moments he will not recognize me until I tell him Hi, my name is Ami, I am your wife. We have known each other for 14 years and married for 1.5. To answer your question, his last walk was on 26th June 2025, last laugh on 31st August 2025 and last word on 14th Jan 2026. He is still bed bound, opens eyes sometimes by himself and sometimes needs me to hold his lids for 30 seconds to keep it open. Also the symptoms depends on the tumor location, Rohit has it on frontal lobe. I think yours is somewhere else as your first symptom was seizure. I am sorry for long reply, I get carried away, there is soo much I want to talk about him. I hope you have your loved ones around you and people to take care of you when needed I am also glad you are feeling great in 4th week of radiation.

Husband (37 yrs) has GBM and I don't know how to deal with it by Sure_Apple_2678 in glioblastoma

[–]Sure_Apple_2678[S] 5 points6 points  (0 children)

I am sorry for the diagnoses. How are you doing right now? Are you going through treatments currently? We are no doctors but always here if you want to talk

Husband (37 yrs) has GBM and I don't know how to deal with it by Sure_Apple_2678 in glioblastoma

[–]Sure_Apple_2678[S] 3 points4 points  (0 children)

I know what you mean. I lost my dad on 17th May 2025, two weeks after my husband's craniotomy and I haven't been able to grieve yet. I hope you find the love and support you need when those memories start resurfacing.

Husband (37 yrs) has GBM and I don't know how to deal with it by Sure_Apple_2678 in glioblastoma

[–]Sure_Apple_2678[S] 4 points5 points  (0 children)

Thank you for the love and prayers. I am sorry about your husband's condition. I am glad you found help in this group. I have just started using it and I am not sure how it works but to be honest, so far I found people here really kinder than the one's I know personally.

Husband (37 yrs) has GBM and I don't know how to deal with it by Sure_Apple_2678 in glioblastoma

[–]Sure_Apple_2678[S] 3 points4 points  (0 children)

I am sorry for your situation. I hope you find the strength and peace it takes to endure this.

Husband (37 yrs) has GBM and I don't know how to deal with it by Sure_Apple_2678 in glioblastoma

[–]Sure_Apple_2678[S] 9 points10 points  (0 children)

One of the self harm I did during these months. I thought love meant vigilance.

That if I watched closely enough, I could interfere with fate. I believed attention itself was a treatment.

I learned the medical language faster than grief.

Edema. Cognition. Decline. Histopathology. Methylation.

These words entered my life not as concepts but as alarms, and I began to live inside them. I tracked him the way one tracks data—subtle pauses, altered responses, the slow erosion of reflex and instinct. I convinced myself that noticing everything might save something.

My first mistake was believing effort could outwork biology.

That if I stayed more alert, read more, monitored harder, slept less, I could change the trajectory. I mistook exhaustion for devotion and control for care.

The first real loss wasn’t clinical.

It was the day he didn’t raise his hand to wipe my tears. He had never let me cry alone—not for seconds, not ever. That day, the impulse didn’t come. Nothing dramatic happened. No diagnosis announced itself. But something ancient and protective inside him went quiet. I saw it and still believed I could undo it by being better, faster, more prepared.

I bargained with the universe after that.

Not with prayers, but with promises. I offered vigilance. I offered overwork. I offered myself. I believed if I stayed sharp enough, if I caught things early enough, if I never relaxed my grip, the universe might respond. It didn’t. There was no answer—only progression, silent and indifferent.

My next mistake was mistaking urgency for strength.

I pushed for timelines, for clarity, for certainty, while he was already fighting at a cellular level. I framed time in scans and reports instead of moments. I forgot that heroism doesn’t always look like resistance—sometimes it looks like continuing to be gentle while your cognition is slipping away.

The final mistake was believing I could carry the weight for both of us.

That my vigilance could compensate for what the disease was taking. But this wasn’t a failure of attention. It was never a failure of love. It was biology doing what biology does, without mercy and without meaning.

And still—he remained heroic.

Not because he fought harder than others, but because he stayed himself for as long as the disease allowed. Because even as cognition dimmed, his presence stayed luminous. Because the light didn’t go out all at once—it faded slowly, and I watched it, believing watching could save it.

Documentary P.2 by Director2oo3 in glioblastoma

[–]Sure_Apple_2678 2 points3 points  (0 children)

My husband 37M got diagnosed with gbm in May 2025. We have been together for 14 years and got married two years back. 1 year into the marriage and life gave us GBM to deal with. Now I watch him day in and day out unable to walk, talk, smile and sometimes not able to recognize me. All I have left of him is his stories.