We Talk Brain Tumours

Morning

Sleep?  Well to be honest I'm not having too many problems - I go to bed late and wake early morning - I think if I get at least 4hrs in a block I'm not doing too badly.  However, there are some midnight talks going on with a certain person in the Lowlands so they do have a bearing on time!!

Trying to summon up the energy to ring the agencies etc - the left hand doesn't know what the right hand is doing as per usual.  Seems that if P had passed two months later I would have been 45 and I would have been entitled to another benefit - how did someone decide 45 was the cut off age that you were entitled to be widowed????  Baffles me.

As said before it is noticeably quiet on here and I hope that is for good reasons other than the obvious, though I appreciate many of you are going through difficult times - take care, keep each other safe xxxxxxxx

Afternoon all,

Just checked in to update myself on recent posts and saw a few messages from people trying to deal with paperwork after the death of their husband. If anyone needs advice or help with anything to do with the probate side of things, I'm always happy to help. I'm not touting for business, it's a genuine offer of assistance so feel free to send me a private message.

Not much to report here. Paul's next appointment is a week away and I am hoping the Doc will order an MRI but we shall have to wait and see.

Love to all,

xxx

Evening all. I hope those of you lacking energy find some soon. I know there's none here so can't help you there.

Martin I hope you and Becky are having peaceful days together and things aren't getting too difficult for you. I'm thinking of you and your family a lot.

Just thought I'd write a quick update. I think Dad is slowly deteriorating. It's so hard to see the changes in him and I just want to be able to remember the days of him being my lovely Dad and not these days of seeing him lose his dignity, get confused so easily, lying in bed all day and me having to wash his trousers all the time as he has so many 'accidents'. It's very hard to see and is getting me down a bit. He takes his second dose of lomustine today although I'm not convinced it's doing much. At least it makes him feel he is having some treatment still...

Hi Everyone

Sue - nice to hear from you, I notice when you don't post.  Will no doubt be in touch very shortly, thank you xx

Green Tree, your post conveys despair - the whole thing is horrible isn't it.  Difficult to find anything good in any of this.  The fact that you are doing what you are for your dad is wonderful and if he could I'm sure he would convey his thanks - seems to me that you must have a lovely relationship so be proud and know that you are doing the best you can.  Take care and thinking of you xxx

To everyone else I am, as many others are, think you so often, take care xxxxx

Hi everyone

First chance I've had to get on this computer. Just wanted to say you are all still very much in my thoughts and prayers. Mandy, Yin and Yang, I often think about you both, Miggins, Martin, Suetoy and everyone else who post on here. Dear Green Tree you are a wonderful daughter and by the way, I live in Auckland. We have a very good friend who lives in Wellington, it is a lovely place.

Graham has been home just over 2 weeks now and I have no doubt whatsoever that I made the right choice to bring him home. There have been many magical moments and only one very bad incidence which I will share with you another time - it involved "the wife", the one who really should have stayed at home.

One magical moment I would like to share is when I was holding my 11 month old granddaughter and standing next to Graham in the bedroom. At this stage Graham had stopped speaking and mostly slept but he opened his eyes and held onto her hand. It was awesome seeing her tiny hand in his. She was happy to stay like this for ages and I will remember it forever and one day when she is older I will be able to tell her about it.

Unfortunately Graham had a bad day yesterday. He had a very high temperature and was having seizure after seizure and his breathing was very sparodic. The hospice nurse and my gp came over and managed to stop the seizures with medication. The doctor said she felt he only had a few days left and after a long discussion it was decided that he would be given enough meds to keep him in a comfortable state but not to prolong his condition by giving him fluids. I must admit that I am finding this difficult as food and water are such basic things and I feel like I am starving him to death. I keep swabbing his mouth with water hoping he feels some form of relief.

He is in a comatised state but as long as I can hear him breath I feel comforted.

I know that he could go at any time but I am feeling very calm, I am normally such a stress queen and I must admit I have really surprised myself.

God bless you all.

XXXXXXXXXXX

Hello Daisie-Glad you feel you made the right choice in caring for Graham at home and have been able to share magical memories. They will carry you through many a long day. Sorry to hear Graham not so good now though that sounds so trite and inadequate. I know how you feel. Dont feel you are starving him. His body will not require food or water. As long as he has enough pain med to keep him comfortable and pain free and you are with him he will need no more. Its strange how calm we can be at a time like this isnt it. Well done though. Keep talking to him. Even though comatised he will still hear all you say. I can really feel where you are-only 5 weeks ago I was there., Hope we can help you by you posting here. Sending you huge hug and loads of strength. x x x

Daisie,
You are doing an amazing thing for Graham. Be with him, talk to him.
I agree totally with Y&Y about food, I had the same thoughts as you but it is kindest not to trouble him with food and drink now. Just what you are doing keeping his mouth moist. Keep strong as you are doing.
With love,
Miggins xx

Daisie,

You certainly are doing a wonderful thing for Graham.  Like the others say, keep talking and keep touching him.  He knows I'm sure.  I know Peter did.  CH/Miggins text me late on the final day and reminded the same saying that the last sense to go is hearing - I am so grateful to her as I knew this but it spurred me on to keep on talking but I also picked up his hand and kept touching my face etc - P raised his eyebrows to let me know he knew I was there - I keep those memories with me now, like you keeping that wonderful memory with your granddaughter and that is the kind of memory Graham would want you to have.

As Y&Y says it is a strangely calm time and you have to believe that Graham is in no discomfort.  I believe this about Peter even though things were difficult.  I decided that if he could think to use his eyebrows to communicate then he couldn't be in discomfort as the effort would have been too great otherwise, so bear this in mind. 

Sending you both much love xxxxxxxxx

Daisie,

My thoughts and prayers are with you both, so right that you have Graham at home, and he must have loved the moment with your grandaughter!!

Oddly enough, my sister and her husband are holiday on the south island, so a little be of me, is closer to you than I am in the UK!!

Take care strength and (())

XBeverley

Daisie Much love being sent your way. I'm sure Graham is aware that you are by his side & that however difficult you will find the strength to cope somehow. Peace be with you & Graham. Keep thinking of the lovely times you have had together. xxx