Sleeping all the time

Hi Jessie,

Good to hear that the palliative team have been able to give you some peace of mind about the support your brother will receive. That he has  been offered four visits a day is a plus too. 
It is an incredibly hard time and my heart goes out to you. Despite the challenges, of which there will be many tough ones, you will find the strength to get through.

Much love to you both.

Hi Jess, you will get through this. You will find strength that you never thought possible to support your brother. It is such an unpredictable diagnosis,  things can change quickly and it good that he can make decisions about his care now. Big hugs to you.

1. My husband sleeps for most of the day and his agitation is now under control after being prescribed olanzapine. He was diagnosed back in may but his glioblastoma isn't treatable. He's home now and I'm his main carer. Maybe ask if they can prescribe your brother an antipsychotic? It might help his agitation.

Hi Cathy

The oncologist told us this wouldn't help but I'll discuss it with his Drs, thank you.  Best wishes to you and your husband 

Jessie sorry to tell you this but often they cannot tell you more... they get to a point where treatment doesnt work and thats when they need to accept that palliative care takes over. The point is to make him as comfortable as possible and that's it. They stop "looking" and rather go by what they are "seeing"... and everyone presents differently (to a greater or lesser degree).

The ONLY advice I have is just tell him you understand (even if you dont) and that whatever he is going through you hope that he understands he is not alone.

If he doesnt want to talk to you thats ok... he's going through allot and its not YOU its him withdrawing and feeling isolated.... I think people feel very alone in this time... remember they are going to a place without what they "know"!. Dont make him do anything or ask him just let him know if he does you will be there for him... and leave it at that. 

I would suggest dont try and talk to him too much if he doesnt want to... when you visit, just be around. Read a book, play a game on your phone, just be present... "white noise" is sometimes reassuring for people... and tell him no matter what you love him. Thats all you can do and will be enough... this is very very hard... for everyone. Wish you all the best and hang in there 

Thanks for your reply. 

We're in the midst of getting him home, hopefully early next week. He's very weak now, sleeps a lot (most of the day).

He no longer wants to watch TV or listen to music, we know longer have chats about anything.  

He says he wants to die and I believe him, he always said that it would be his worst nightmare to be in this situation. 

This cancer is absolutely the worst and I've had experience of many. 

Best wishes to you SRR.

Hi Jessie

You are correct, every cancer is bad, but this one is absolutely horrific.

Like others have said to you, just be there for him, just let him know you are there when he needs you. We can not imagine what our loved ones are going through knowing that they have this horrific disease.

When my husband was diagnosed with this, our world fell apart. Every day was a battle, but we tried to make it as normal as we possibly could for him. I always whispered to him “I’ve got you”..I never wanted him to feel alone or that he was on his own and I believed he knew this.

I found that the charity “Brainstrust “ was a great help. They provide various resources which are easily accessible and I rung them many a times on a night just to cry.

You will get through this, and you will be strong for your brother because that is just what we do when we love someone so much.

Sending you much love.

Thanks Mrs uni 

It must be beyond awful to have your husband go through this.  This is my brother, I've always been very close to him. He lived on his own and he was happy that way. He was very strong and independent.  I know his views inside out because he would talk to me a lot.

I've had a quick look at Brainstrust and it seems very informative so I'll definitely go back to it.

Thanks again from the bottom of my heart ️ 

Best wishes to you too... I am truly sorry that you are going through this. No one should have to but we do.