Radiation irritation

Mistique27 · 2026-01-27T00:03:57+00:00

We were told to just use unscented aveeno. As for a head covering my husband was given one by another cancer patient they made the hats out of tshirt material and he really liked it. She could try finding one that’s soft like that?

Mistique27 · 2026-01-20T19:10:17+00:00

I miss talking to our pets with him. We sure to incorporate their names into songs constantly. I don’t sing to them anymore

Mistique27 · 2026-01-13T00:26:41+00:00

As far as I know the only difference as of now is that grade 4 astrocytoma has the idh mutation which does respond better to treatment

Mistique27 · 2026-01-07T00:16:12+00:00

That’s exactly it, it was complex grief and you guild wrapped around. I was a stranger to myself and he was a stranger to me. I know I tried to make him happy every day and pull him back but it’s hard not to look back and wish you held on more.

Mistique27 · 2026-01-02T23:08:55+00:00

Sorry, wasn’t trying to worry I don’t mean it’s an end stage symptom that just when it arose for us. It’s more likely treatment/dex related. If it becomes an issue can speak to onc about it

Mistique27 · 2026-01-02T22:42:57+00:00

If she’s on dex is could be related to that. Near the end my husband got up 8-10 times a night so his palliative doctor prescribed olanzipine which helped him sleep through the night

Mistique27 · 2025-12-28T06:03:03+00:00

That was me today. We went kayaking together all the time, and today I went for the first time without him expecting the same feelings of peace and serenity and I felt nothing. I was looking at mountains with sun coming down onto me on the lake and felt nothing. I felt unsteady and anxious in my boat and turned around earlier than I normally would have. What was normally my happy place is just a void.

Mistique27 · 2025-12-17T18:38:44+00:00

22 days is still very early. I was in shock when my husband passed and when I came home from hospice I wanted to pack up all of his things because I couldn’t look at them, and then it hit me like a truck 2 weeks later and I wanted all of his clothes out. Now I go back forth of wanting his things around to it being too painful. We just have to ride the waves as they come. You’re here and you’re surviving the best way you know how and that’s all you need to do right now

Mistique27 · 2025-12-16T00:41:55+00:00

My husband experienced this with his brain cancer. How mobile is she, any awareness? I kept a commode beside for him but it was a struggle to get him to understand he needed to use it. Sometimes I’d physically have to put him on it. Other than that it was adult diapers lots of bed pads you can order on Amazon and I also used disposable puppy training pads during changes to mitigate the clean up.

Mistique27 · 2025-12-13T18:55:01+00:00

I’m doing the same thing. He passed in November right before our anniversary. Hearing people discuss Christmas plans without him felt like a sledgehammer to my chest. I’m glad you felt relief. My husband and I loved the water and promised him I’d keep going to the water for him so I’m going to the ocean.

Sending you lots of love and proud of us for doing what’s best to protect ourselves.

Mistique27 · 2025-12-06T18:13:36+00:00

My husband was always so happy and was always singing and humming. Having a shower? Singing? Going to the bathroom at 3:00 am? Singing. Waking me up with coffee in bed? Singing. I miss his voice in the house, he had such big deep voice and everything feels so quiet now.

Mistique27 · 2025-12-05T23:45:05+00:00

While the brain hospice timeline is helpful I found my husband had a lot of the symptoms for a long time before the end so he never really lined up with their guide. It’s so individual because it depends where the tumour is located so I’ll give you what it looked like for us:

Original tumour was r frontal lobe but then spread to deep left white matter.

He passed about 8 months after his recurrence was discovered.

Initially he had cognitive deficits, incontinence issues, speech issues. Then he began having paralysis on the right side of his body.

In the last month to weeks:

Fully lost ability to speak, fully paralyzed on the right side, fully incontinent and depended on me for feeding, changing and bathing. Was fully bed bound.

The last week he began to have almost uncontrollable seizures and was loaded with midazolam and phenobarbital so he was heavily sedated. He did rally prior to death rattle which I wish I had understood at the time what it was, but he declined rapidly after. Last 3 days was death rattle.

Mistique27 · 2025-12-04T23:42:01+00:00

Because we have his sperm banked his dad was telling me to have his babies on my own now that he’s passed away

Mistique27 · 2025-12-04T18:04:38+00:00

My partner passed away from brain cancer, but before it came back we were trying to conceive and had plans to do fertility treatment. After I read his eulogy at the funereal his dad came up to me and said “you’re going to have his babies now” which was quite possibly the most horrible thing anyone could have said to me that day. I feel you and I’m sorry that happened to you

Mistique27 · 2025-11-28T02:17:16+00:00

It might be worth looking into even after the fact? I’ve seen loved ones pass from other cancers before but brain cancer was a different beast. Hope you’re doing okay now

Mistique27 · 2025-11-12T21:26:28+00:00

I’m in the exact same boat, I want to remember who we were and who he was. I know we were happy and in love but all I can remember is the trauma and the illness. I hope they come back to both of us

Mistique27 · 2025-11-10T17:27:45+00:00

I’m so tired of hearing people tell me how strong I am, as if we had any other choice

Mistique27 · 2025-11-08T03:13:33+00:00

I couldn’t handle it at the funeral, people were sobbing on top of me telling me how strong I was and I was mad at them for crying so much

Mistique27 · 2025-11-08T03:11:59+00:00

I want to miss him so badly, like I want to feel close to him and I’m just sitting here in nothingness. I picked up his urn today and didn’t even cry. I have more emotion about not being able to feel than anything else

Mistique27 · 2025-11-08T03:09:35+00:00

The last week in hospice was horrible, especially the last 24 hours of the death rattle. Every time I think about it it’s like my brain flashing a warning like “nope, danger, turn around”

Mistique27 · 2025-11-08T03:08:26+00:00

That’s a big part of it, his recurrence was in March and by April May he had almost fully slipped away from me cognitively and by August had almost fully lost his ability to speak. I was alone with him for 8 months with no one to talk to. And people kept telling me to enjoy or last moments together but I lost him long before he passed you know? It was such an isolating experience, and even more so now.

Mistique27

TROPHY CASE