We Talk Brain Tumours

Yes, Ali was on 10mg of the sexy dex split over morning and lunchtime.  However, due to the tumour position, she was able to sleep peacefully regardless of the dex.  Even when she was fit, she could sleep whenever and whereever she wanted to.

I've been doing some work from home today.  But it's not really been a good day.  I've been working in the dining room, and I was surrounded by the wedding photos that I'd surrounded Ali's bed with.  Looking at them brings back so many memories of both the wedding day itself and of Ali laying there in the dining room.

Life just feels like a pile of poo right now.

Is 10ml of dex a usual amount, nurses keep trying to lower Harry's dose but I keep putting it back up again as I notice his speech is a lot worse on 8 or 6mg. He only sleeps for a couple of hours at a time during the night and a couple of half hour slots during the day but hes not as hyper as he was when he was first on dex, to be honest he quite wore me out then now he seems a lot more confused but happy enough.

Mark was always on 6 ( Always given in the morning rather than 2 doses) . When he started to deteriorate they immediately doubled it to 12 and  there was an immediate improvement but it did not hold things at bay for long. I may be wrong but I think they try to keep it low so they have some in hand for when BT starts to grow. Not forgetting the various side effects that come with the steroids...but that only matters in the long term.

love to all

Cx

It sounds as though you're used to varying the dex dosage based on the symptoms.  It's a balancing act between a high dose giving better symptoms and the side effects of the high dosage.

You're probably also keeping an eye on the blood sugars as well as there's a likelihood that sustained steroid use leads to diabetes.  Once diabetes sets in, you lose this free control over the dex dose (changing the dose while on insulin can cause havoc with the blood sugar).

It sounds as though you're adjusting to the emotional and physical stamina needed in full time care.

You will cope.

Hi Laura

Your story sounds just like mine 4 weeks ago my dad suddenly got forgetful within 2 days he didnt know his name date of birth etc they thought he had a stroke when he had a scan he should he had a GBM grade 4 which is inoperable to !!!!! poor dad has gone down hill very quickly too, he is meant to start some radiotherary in about 10 days but to be honest im not sure this is the right decision , all dad wants to do his sleep

He also was very social and the day before he was unwell he was all packed to drive to France to stay at there holiday home

Life seems so unfair and i totally know how you are feeling

Thoughts are with you all

Julia x

Very sorry to hear of your father, Julia.  I hope that he gets comfortable soon.  It's hard to predict your future, but the radiotherapy should help to slow things down and give you some more time.

Just see how things go in the next couple of weeks, you might be right that the full course of radiotherapy might not be needed.

It's awful that you have to go through this so close to Christmas, but you will make do and cope with whatever happens.  True strength comes out at times like this.

Oh, and good to see you Cathi.  Hope you're hunkered down well.

Actually Pete I dont know anything about blood sugers, maybe I should mention it to the nurse next week. To be honest I really feel that Im going through this blindfolded and alone. Im still working but have reduced ny hours for now, I will, I expect, have to go on sick eventually, but for now going to work is the only normality I have.

You're certainly not going through this alone.  We're all here to help and support you as others have supported us.  We all have a legacy that we should pass on to those who inevitably follow us.

Yes, talk about the blood sugars, and use that opportunity to also talk about anything else that might crop up in the future as well.  It's always good to know these things ahead of time, even if they don't come to pass.

Do you know Pete its good to have you around. Your that big shoulder we all need.Thanks for caring.

When Teresa was on Dex the house was remodelled (never happened) but really hard to be negative about it to her.

Biggest issue was weight and appetite which was the evil necessity of being on dex. It's hard but eventually got over.

Look for local support - you are not on your own.