We Talk Brain Tumours

Hi Opal

You must be so scared.  This happened to Paul last Summer, he already had right sided weakness but after a fit he had no use at all on the ride side.  It did come back after a few hours. 

I wish there was more that I can say but I am thinking about you. 

Take care

JMS

Hi Opal

It seems my mum is the same but she has lost grip etc in right hand her tumour on left  and swelling on right side of brain now, and pain like muscle spasm in her arm  she keeps saying, I agree very scary as we don't  know what is happening or how they are feeling, I think we can only support and help them through this, my mum also gets like a red angry patch on her right cheek every now and again???? like a burning sensation she describes it.

Thinking of you all xxxx

Hi Opal,

I hope everything is comfortable with you both? You've been on my mind all through the night.

Martyn XXXX

Hi Opal, I hope you are both more relaxed today but make a note of what happened so that when you next speak to the NO or GP you can mention it, they may want to reassess seizure meds or at least be able to give you some more info or insight into what happened or if it may happen again?

Just wanted to publicise this new unit a bit more......good news indeed!

NEW DEDICATED BRAIN TUMOUR CENTRE OPENS IN LONDON

Opal, hope things are better for you both this morning, have been thinking about you.  Zoeteen, you should be able to get something from your GP to help mum with the muscle spasms, I have found that paracetamol seems to help though not sure why it should..

Debs - thanks for the link, its good news

jms

Dear All

Thanks for everyones support and kind words, means so much to me, especially as you are all going through it as well.

His arm weakness became full blown fit, called gp about 10pm but he couldnt stop the fitting, by this time loss of all rt side. Admitted him, very scary how violent he was, they said he is in a very bad way. They think he has had a bleed.

Back to hospital now. Thank god for family.

Opal xx

Opal,  that is what we were all dreading you saying, so sorry.

Thinking of you both. Martyn XXXX

Opal, i'm so sorry you're going through this. Looking at your story your husbnd is about 2 weeks behind my mum in diagnosis, treatment etc and she was admitted with the same symptoms just under two weeks ago. I wish there were some comforting pearls of wisdom i could give but i just want you to know that i understand a lot of what you must be feeling right now and am here ifyou need to cry, scream, shout or whatever. Thinking of you both Xx

Hi Opal

Our thoughts are with you, BIG HUGS AND KISSES

Zoeteen

My thoughts are with you, Opal.

My mum's seizures have gone for the meantime, she's on some Epilepsy drug (amonst others) which I don't know the names of. She's been given a made to measure wooden walking cane which has boosted her confidence massivley!!! She's speaking slowly but better too.

Her blood sugar has shot down to 11.3, from 25.1 last week.

Today my dad and her had a meeting in the hospital with Social Services in view for her coming home. There's going to be some massive changes coming.

Social services are putting a bed in the living room, more railings on the steps, a commode downstairs and other little changes which we'll have to adapt to. I know it will be short term and it's perfectly fine by me.

Now, we're in a little bit of a morale pickle as nobody has told my mother the truth about this grim desease. The doctors haven't told her anything apart from it's something they cannot cure and my dad does not want her to know as it'll keep her spirit up, giving an incentive to fight on. Alternatively, she may have an idea and may know and be protecting us.

It's got awkward as if indeed my mother goes downhill fast, she has no funeral plans inplace whatsoever.  My dad will want to know things whilst she's still able to talk about it.

My questions which have been nagging away:

Will the doctors tell us it's progressed and will be terminal? 

Has anyone else made the choice not to tell a loved one the grim truth about this hideous desease? I hope by asking this, I don't stir up any traumatic memories.

Thanks,

Stephen.