We Talk Brain Tumours

sent a post to Macmillan and they gave me this link which gets me directly to WTBT threads. Bit long winded but it seems to work for me.

http://community.macmillan.org.uk/cancer_experiences/general_cancer_discussions/f/198/p/456662/reply.aspx

Hi all.

Naomi, thinking of you and hope your beloved dad goes quickly and peacefully.

Ange xx

Thanks for the link Cathi, have saved to favourites, our train does seem remarkably quiet and empty, I fear its because so many of us are lost and not because no one needs support.  I cant believe you blamed JM7 for raising a glass!!!

I havent dared go back to previous posts in case I got lost again so apologies if I missed anything.  Naomi, so pleased your sister has got here, that dad has said goodbye to you and is now settling for his final journey.  Once Paul had made the decision to say goodbye to us all he went quite quickly, a few weeks after he died I got the results of his final scan - done just 5 days before he died and it showed no obvious progression, strange really.

Will raise a glass to everyone this evening and wish all a peaceful weekend.

Joanna xx

Naomi. My thoughts are with you through this heart-rending time.  I hope that peace and comfort comes to your father soon.

Best wishes to everyone else on their journey.  The website overhaul has made things diffuclt for us, but we are masters of perserverance and patience if nothing else.

Ali is much the same.  She's been in bed now for about the past ten days continously except for mornings sitting on the commode being washed by the carers.

She seems to be comfortable most of the time and isn't too frustrated at not getting onto the sofa (when asked, she wants to remain in bed). She's still getting short sharp headaches when her awareness rises, so we let her rest when she wants to.

It's a very sad existance for her, and for the rest of us.

Hi to everyone. Good to see we are making our way back together a little at a time.

Like everyone I have found it so distressing finding way around site. But not as distressing as the awful times most of you are going through. My heart goes out to you all.

Love and strength tonight and over the coming days and weeks.

jmd xxxx

Ange - I'm so sorry to read of G attempting to get out of bed. Dad this too - and it was by far the harest part of his journey so far. He became obsessive about exercising his legs and trying to walk (a very common end-stage symptom the hospice nurses said). It was so frustrating to watching him trying to stand up and then almost cruel to have to sit him down again. He got so agitated. He had to sit on an alarm so as soon as his bum cheeks (or even just one of them) left his alarm pad, the alarms went off and the nurses came running to reseat him. I feel for your daughter. Thankfully my dad has now gone past the rejection stage and wants lots of hugs and hand-holding. Keep going.xxx

Pete - I'm sorry to read that Ali is not inclined to leave the bed at the moment but if you can take any comfort from the situation then feel content that she is happy to be there and isn't trying to get out of it. You are right, it's the loneliest road I've ever walked down but I have met some amazing people and I know I'm a better person for it.

Naomi.x

Sorry for double post - and typos in that last message - but if I type a long message it takes forever to publish!

Witnessed a beautiful moment at the hospice tonight. My dad was sleeping deeply when my sister arrived and she whispered in his ear she was home. My dad turned to her voice (he has no vision in his right eye now and can only see in a straight line from his right) and just stared at her. After about two minutes, he gave her a lovely smile. I can only liken my emotions to those I experienced when my children gave me their first smiled. He puckered his lips for a kiss from her and he stared at her for about ten minutes after that. We had to wipe his tears and our own.

My sister told him that we were all here to look after mum, that he didn't have to wait for her anymore and that he could leave now if he wanted. He looked really serene and at peace.

I have come home for the night now as I miss my children. Whenever I say goodby to dad, I say it as if I'll never seen him again. Tomorrow I will go in again. After having misgivings about the hospice initially I absolutely love it there now and cannot fault the care they are giving dad. They really are angels in disguise. I'm going to miss going there and my son is going to miss the hospice cat - now 15 years old and the equivalent in weight!

I wish for you all a peaceful weekend. I have no idea when dad will leave as he hasn't followed the rules so far. I desperately want him to make it to Sunday as it is then a year since his initial collapse. He knows he can say goodbye when he's ready to though.

Love to all.

Naomi.xx

Thinking of you all.Many HUGS for you xxxxxxxxxxx

like so many of you, FINALLY found my way back!!!  Unfortunately haven't got time to read all your posts and have only seen the last page.

Naomi - as always, my heart goes out to you.  You have been so strong and I am glad that your sister has made it home.

sending thoughts to all of you tonight!

x

Gosh it takes me so long to find this thread, I have to go on a friend and hope there is some activity on their posts that I can click on.

Naomi, so glad your sister has come home and your dad can be peaceful, that does sound like a beautiful moment.  Hoping the weekend is a as kind to you as possible.

Hi to all others, sorry I can't seem to read back and see what is happening with everyone, seem to have lost everything including private messages.  Hope all is well with everyone and wishing you all a peaceful weekend xx