How are you Nicki, Ellie and LA

Hi Ellie

Update us on Brian when you can.

Thinking of you xxxx

Way to go Lynne!! I'm a walker but 23 miles and in that area, you'll be feeling it today.

But well done.

Will look out for your post ellie, my thoughts are with you.

God bless.

love

Millyjo xx

Hi all

Thanks, Millyjo and Lynne, for your messages of support. I'm afraid my news isn't good. Brian has been going downhill so quickly over the last few weeks. He's getting weaker, struggling to do anything without help. He's been sleeping a lot, losing interest in things and was very withdrawn. The hospice was going to admit him but it was decided that they couldn't do anything that couldn't be done at home. That's where he wants to be and we had a visit from their specialist nurse last week. Brian told her that he is going to stop fighting, as he just can't take any more. He's fought so long and so hard - we both have - but I know that he really has had enough. He seemed much better the next day, so maybe he needed to get his feelings out into the open. I asked our district nurse how long she thought he had left and she said it's weeks, not months. Even though it was what I suspected, it still hit me hard. After nearly 3 years, I am so scared, thinking that I will have to face the worst very soon.

All we can do now is make the best of every day we have left together. I feel so grateful that we've had such lovely weather so early, because we've been able to sit in the garden and watch the birds and see the flowers coming into bloom.

I feel very calm writing this, almost detached from it all, like it's not real, but I just don't know how I will cope with losing the man who has been my life for nearly 34 years......

Ellie

x

Hi Ellie

I haven't been able to get on to the forum for a little while and am so shocked and saddened to hear that things have deteriorated for you and your husband. I read your story and think it will be mine some day and I totally understand the fear you feel. As you know already though, the unknown soon becomes the known and the fear transforms into strength to just deal with the here and now. I am thinking of you, even when I am not able to get on-line and am sending you lots of positive vibes and love and hope you can find the strength to get through this terrible time.

Deb

x

Dearest Ellie

I think you are really brave even just posting on here, I know how you feel, I've been there, all I can say is your taking each day as it comes, and that's all you can do.

Spending time in the garden, and just being there for each other, as, after 34 years together there is nothing left to say that hasnt been said, you both know how you feel, and that, is what you have to focus on.

Love..... I'm thinking of you, and were all here for each other, all in the same boat.

Stay strong Ellie,

Love to you both xxxxx

dearest Ellie ,

there is nothing I can say but to say thinking of you both and sending all my love to you both of you

be strong my friend

all my love and prayers

Pauline x x x

Oh gosh Ellie, I just read your latest post on here, I'm so sorry to hear your news.

Sending you love and strength,

Charlotte xxx

Oh Ellie I'm so sorry to here your news.

Both you and Brian have been inspirational, not only for us but in the way you have battled and fought.

I understand your state of shock, as up until the last it is never true, and there has to be that miracle. . . One day.

day! Even to this day I sense shock at what happened to my mum.

My thoughts are with you both my love.

Millyjo xxxx

Thank you all for your lovely messages of support. I was so touched by your kind words.

Thinking of you all, too.

Love

Ellie

x

So very sorry to hear about Brian. Have followed your posts for so long and you both have given me (and others I'm sure) so much hope.

Can't understand what you must be feeling. I'm certainly sure that the years of fighting and 'knowing' don't prepare you.

The next few weeks and months particularly will be so difficult I know. Hope you can find all the support you need with your friends and family and on this forum when you need us.

Thinking of you.

C

Dear Ellie, I've been away so only just read your latest posts. just want to say I'm so sorry to hear about Brian and I am thinking of you. Love Marie x

I'm sorry to hear Brian is not too good just enjoy those precious moments together.Thinking of you.

Pamxx

Hi everyone

Thanks again for all the kind messages. A lot has happened just lately, so I'll briefly explain.

We had a pretty bad week last week, with Brian falling over 3 times and on one occasion cutting his head and me needing to call an ambulance. Fortunately, there was no serious damage, but I was struggling to cope because he was getting so weak and I was finding it difficult to get him up from chairs etc. I was starting to wonder how I was going to cope when things took a turn for the worse.

On Saturday morning, I became worried that he wasn't waking up and seemed "different". I called the district nurse, who was concerned enough to arrange for him to be taken into the hospice by ambulance. That was awful, as his sister, nephew & niece and their sons were all coming to see him that day and arrived to see him being taken away. We got into the hospice and it felt like that was it - we were literally saying our goodbyes. I rang my daughter and she set off from Cornwall. However, by late afternoon, he had picked up and was a bit brighter. I think I almost went into shock - one minute thinking I was losing him, the next that he seemed ok. It was a very emotional time.

Since then, the doctors have told us that he may only have a week left, but I am finding that hard to believe somehow. Yes, he is physically weak but he is still eating, drinking and enjoyed a lot of fussing over by the staff yesterday and today. He may even be able to come home for a few hours tomorrow. I have gone from feeling this is the end to laughing and joking with him today, almost like normal. I really don't know what to think! I have slept at the hospice twice and spent the days inbetween with him, but as he was better today I am home to try and get a good nights sleep at home. I am just finding it such a strain, wondering just how bad things really are.....

Anyway, thanks again for your kind words and I will update on things if they change .

Love

Ellie

x

Hi Ellie

Thanks for pointing me to your update! You must be exhausted with the rollercoaster ride you are on. I still can't quite adjust to how unpredictable things seem to be with this disease. I have given up trying to work out what tomorrow will bring - I think that side of things can be extremely stressful because you just want to do the best by everyone and if you had a crystal ball, you could plan and make sure you did everything "right". I am so glad to hear that Brian was brighter after such an awful week last week and you were able to enjoy a laugh - those moments when all seem well must feel precious, if not a little surreal. Take care of yourself when you are able, Ellie and love and strength to you and Brian.

Deb

x

What can anyone say Ellie, apart from you are in all of our thoughts and we send you and Brian much love and strength.

Nicki xx

Hi Ellie

sending you a massive hug, keep your chin up, you may not feel like it but your doing brill xxxxxxxxxxxxxxxx

Dearest Ellie,

I'm so so sorry to here Brian isn't too good. . .words seems inadequate.

These times even after so many years together are so very precious andyet so hard to cope with, in the knowledge that time is now of the essence.

I'm sure despite your shock, distress you are being your formidable self, Brian has had an Angel beside him.

Thinking of you both daily.

Love and regards.

Millyjoxxx

Hi Ellie

I don't get on the board much since Blue passed away, I find it too upsetting and am still struggling myself. I remember when I first posted on the forum you were one of the first to respond and there seemed to be a little group that formed, all responding to each others posts, and I find it hard that this group is dwindling.

Lynne (lynbo) has been keeping me up to date with you and Brian and I'm so sorry to hear what she has been telling me.

Ellie, you are in my thoughts, I say that with sincerity, I hope you and Brian are getting the support you need, be kind to yourselves....I really dont know what to say...

Lots of Love

Clair