We Talk Brain Tumours

I feel like I have lost my right hand since the site change. Typing this but not sure if I'll be able to post because when I have tried recently it just hasn't worked and everything just keeps timing out! It's so hard when u have a support system and then it disappears when u most need it.

JM7 so glad that the wedding went well (despite the rain) and that Alan was able to really appreciate it. So sorry to hear about the barn tho, sometimes feels like when u have so much to contend with there's always more crap ready to be thrown your way! good on u all for carrying on regardless x

Left the hospice for an hour today to collect our daughter and G decided to leave his bed (no-one would have guessed this was possible) He was out cold when we got back and this was so distressing for our daughter. Sorry, forgot to say he had a bad fall as a rsult (can't go back to delete and correct for some reason!!) He did come round again eventually but he didn't recognise us for the first time and it was so sad. Our daughter did not want to leave him but I could not let her stay when she was just getting increasingly upset because her dad was pushing her away. All so heartbreaking and she has only just settled to sleep. She has been so brave and caring and seemed to have settled for her role as carer over the last couple of weeks but she feels that he no longer wants her or needs her.  It is hard to know what to say to her and to remain brave when my own heart is breaking.  Even my mum, a devout catholic is now praying for god to take G,

I hope that you are all okay and that this site sorts itself out soon bacause I miss u all.

Ange xx

Wow, on my last attempt, I've finally caught up and found our train again.  Good to see the usual suspects have found their way back again.

Remains to be seen whether I can make it back in the morning again.

Morning all,

I've made it here twice in five days and its not for the want of trying, I am about to give up entirely on the site, as much as I know I will need you somewhere down the line and the fact that I have come to feel like I know many of you and am really wanting to be here for you as some journeys end, the stress and time factor of actually getting to this thread is more than I need right now.

Perhaps I should just try once or twice a week and Macmillan may throw me a bone, it really feels like they don't want me here :'(

As usual, I am sending love & strength for all those who want or need it.

Hi All....Got back from holiday and spent the past few days trying to get on here. If it had not been for your post Debs and me clicking on your name I might still be wandering around the virtual wilderness. Why have they tried to fix something that was not broken?? I used to get daily emails of posts an that has gone too. Hopefully we will get used to it....but I feel for those of you , who like me used it as a lifeline and even now I still have to have my daily WTBT fix.

hope all well

Cathi x 

there has to be a quicker way to get to it - some sort of short cut or something, I can only find it if it happens to appear in the top messages!  very frustrating, hope all are well x

Naomi   Have been following your threads while on holiday and then like everyone else have had a nightmare finding our little band of travellers. Am astounded that they are thinking of moving your Dad....even though our Hospice had only 15 beds( I think this is the norm) I was told that it is very unusual for there not to be one or two empty and I was assured that Mark would never leave when he had similar symptoms to your Dad. He was only there 3 weeks ...so I cant tell what would have happened if he had lasted longer. glad Pam has given you a link to finding extra funding should you need it.

When Mark was in final stages he was still able to indicate pain by moving hand to his head just like your Dad and was also able to blink when asked if he had pain. I found this very upsetting because I was scared that I had missed these signals ... that just because he was not moving or crying out , I thought that he had no pain. The Hospice were very quick to act on the drug front whenever we mentioned that we felt he was in any discomfort.

Kerry. It is awful...but it does not matter what your beliefs are...you want it to stop. It is terrible to watch your loved one suffer. You dont want them to die..but you do want them to have respite at last. I think everyone feels like this. I really feel for your daughter ..she is so young to go through this but as I told my two who are slightly older.......You have coped so well with this ...it is as bad a thing as can happen to you... You will be able to confront most things that life will throw at you in the future now.

I was saying to Joanna this morning that I downloaded the camera onto the computer  and found photographs of myself Mark and the family out in the snow in December.....the day before Marks diagnosis. I could not help but think how carefree we were without a hint of what was to come 24 hours later. It is hard for us all to think of life "before".

Love and hugs to all.... and we must not let technology disrupt our train!

cathi x

JM7  I am working my way backwards through the posts I have missed. How glad I am that you made another milestone. What a happy wedding it must have been. Sorry about your Barn.... But we all know that you can cope with much worse that life has thrown at you. I will raise a glass to you tonight. Even though I had intended giving up this week. Its your fault.

Cathi x 

Oh my gosh, FINALLY I have found our thread. I have had precious free time to come on here and when I have for much needed support it has disappeared off in to cyperspace.

Apologies for typos in this post as I am about to rush off the to the Hospice for the night. So much to report on over the last three hideous days but no time!

Wednesday morning we wasted three hours looking round nursing homes, got to the hospice and they were frantically trying to get hold of mum to give her permission for dad to have a diamorphine and Midazolam driver fitted as he was so anxious and in excruciating pain all over his face, head and neck.

We were told to get my sister home from NZ urgently (miraculously, she has just landed at Heathrow) and that he was unlikely to last the night. On Tuesday dad choked continously so the decision was made to withdraw all fluids and nutrition. He had a catheter fitted whilst sedated and his wee was the colour of tea but is no longer flowing.

He is in a deep sleep now but has quite violent and frightening choking fits. I fed him 3 tsps on soup before he was sedated and had my last conversation with him. He said "come here" (took a lot of strengh) and we hugged. He said to me "it's going to be alright sweetheart" and closed his eyes and went to sleep.

He can hear us as he moves his eyebrows and squeezes our hands. His skin is hyper sensitive so we have to careful when touching him. We put his hand on top of ours so the pressure of ours doesn't hurt him.

His skin is a waxy colour today and he hasn't opened his eyes once (he did yesterday to kiss mum). His breathing is slowing down and is noisier. Now my sister is here, I suspect he will let go soon enough. I feel strangely calm but I doubt it will last.

This stupid site won't let me scroll back to previous posts (going at snail's pace) so love to all and apologies that I haven't been able to catch up on anyone's news.

Naomi.xxx

PS: I complained about the nasty social worker. The hospice were mortified she made us look round nursing homes when mum should have been comforting dad and said they would never have asked dad to move out! She came and grovelled to us but I still get annoyed every time she looks at us in her supercilious way!

Grrrr.

Naomi. wishing you strength and love. Be prepared that some people can last a long time without fluids ( in our case 11 days) and the gurgly breathing. I am so glad you managed to have last few words with your Dad. He knew that you were with him all along. You have been such a good daughter.I am also glad your sister is there. Your family are together.

Love always Cathixx