We Talk Brain Tumours

Raising a glass (no not virtual today) and wishing everyone a peaceful Christmas.  

Pete - i think its against the law to have a sprout free Christmas!!

All the best to everyone 

Joanna xxx

As is tradition within our home, I will be having some Champagne tomorrow.

I'll have a glass for everyone.

Joanna and Pete.

I'm also sprout free tomorrow, having baked beans instead!  Just watching Morecambe and Wise on the television. How often we sat together laughing at them.  Have a relaxing day. Martyn XXXX

That sounds fantastic, Martyn.

Martyn

So very sorry about Doreen - she sounded like a very courageous lady.  I hope Christmas will not be too painful a time for you. 

Merry Christmas everybody - I've just been up to the loft to retrieve the pressies, feels so strange to be sat here all alone in the quiet knowing its Christmas Eve, and aware of how excited my children are despite everything else. I owe it to MrSG to not let them down x

Hoping tomorrow will be a happy day, love to al.

p.s Here's a couple of pics, first one of my gorgeous hubby before this nightmare started, and the second of me and my equally gorgeous hubby taken recently.  I know we all like to keep a level of anonimity but thought it would be nice to share these with you at this time of year xx

I don't think the picstures have published, oh well if anybody can tell me how to do this I'd be grateful.  Attaching as a file via 'browse' doesn't seem to work, it allowed me to copy and paste but did not publish for some reason?!

With love to everyone on this train, hoping the scenery over the next few days is filled with snowy pastoral English countryside calm for everyone. 

Unfortunately, the view from my carriage is a relentless dark tunnel right now. Tony is deteriorating at such a rate that I'm struggling to keep on top of things. His memory is gone, he is now incapable of even the simplest of things. The TV remote and mobile phone are almost beyond him. His mobility is getting so much worse and it really is a struggle to move him anywhere. And he is a prisoner to the misery of his relentless obsessions. For the first time ever today he said he didn't want to live any more and I have to say, I didn't argue with him.

We all understand that he is now almost completely lost to us so, tonight, we pray that he comes back for tomorrow, just for one day, so that we can have the Christmas we have been planning for so long and he can have a break from his own struggles.

The word 'exhausted' used to trip off my tongue at the end of many a hard day at work but I never really understood what it truly meant until now. I do not have a bone or muscle in my body that isn't aching, my eyes are sore, my hands are swollen and my mind is almost completely fuddled.  But I have to draw on something for tomorrow to get us through the day. We know it will be our last with him so the pressure is on to get it right. We'll do our best of course but, his behaviour is so erratic now that it is highly likely we will do something to irritate him. It is our reality right now and we must make the most of the small flashes of him that manage to escape through fleetingly.

Here's hoping we get him back tomorrow.

Wishing you all a wonderful wonderful Christmas. Hoping Santa arrives with a sack full of miracle cures for all of us.

Pam

x

So sorry to hear of this Pam.  Tony's journey is similar in many ways to Ali's (except Ali didn't have any personality issues).  Ali also gradually lost the ability to handle remote controls, mobile phones, her iPod etc, as well as deterioriating speech.

Christmas day for you won't be anything like normal, but do your best to give him love and try to encourage him to take a "day off" and let himself be pampered during the day.

It sounds to me as though you're needing some more support from the care workers and should get them in more often in the day.  At first, I really hated the idea of losing control and independance, but I came to really appreciate having the chance to step back for a few minutes and let someone else do the hard work.

You're doing a fantastic job.  It's very tough, but you're doing the very best that you can, no one can ask or expect anything more from you.