Check in..

Thanks for checking in… my brother has suddenly lost the ability to walk. Just a few days ago he could walk to the door but now he can’t get up and his left arm has become functionless. It’s so hard to see this happen to him. Hope you are all ok xx

Hi Calle. 

I am so sorry to hear your brother can't walk now and arm has gone. I hope you can get home support as the care level needed now is on a different level. Sending lots of love 

HI ECA3

thanks for checking in. You're right- each day is a curveball. I'm just hoping to duck and dodge  a few! They're been coming thick and fast here over the past few weeks,

We are getting weekly visits from the local hospice nurses to assess G. I had agreed with the Dr that we would restrict it to her and 2 named nurses to ensure continuity of care. G doesn't take too well to strangers thee days. They've had staff illness and staff shortages so no one has seen him for 3 weeks...not ideal. There's two nurses coming out tomorrow to see how things are so we'll see what they say. One is a new member of the team that we've not met and the other is the one he doesn't like so this should be fun!

Physically he's miraculous . No one has any idea how he is still with us to be honest. He's still pedalling in the garage and then escaping for a walk. The biggest issues are cognitive and understanding. His eyesight is also getting worse again. It's really not safe for him to be out on his own but he "escapes" when no one is looking. I can't stop him. He lacks the capacity to understand why we are worried about him going out on his own. 

Conversation is a challenge as he is really struggling to find the words. You have to keep sentences simple. It's so hard to watch that unfold as frequently we have to admit we don't know what he's trying to say.

But one day at a time and we'll get there.

Sending love and light and hugs

Wee Me xx

So variable the progression. My brother is lucid and still got all his marbles but his body is failing I’m really not sure which is more painful. Sending hugs wee me x

Hi ECA3 

We are not quite as far into this awful journey as you, but my mum has finished 3 cycles of chemo now and each time it completely takes it out of her - so awful to see. I dread the near future and what it holds. We still haven’t had a scan yet since all of the treatment to find out if it’s working. We went out to the shops and the weekend and she had a funny turn where she felt faint and her balance and coordination doesn’t seem good at all.

Good to hear from you all on how things are. Sending lots of strength and love xx 

Hi ECA3, I’m sorry to hear your last few weeks have been tough. I’m glad you are getting some support from the hospice at home and navigating through the days. Just gotta keep going xxx 

My dad has a scan at the end of the month and we will see if the ‘area of concern’ from the last scan has changed. We are noticing more frequent confusion/word switching, and he’s complaining of some head pain. Maybe we are just preparing ourselves for the worst but we are nervous it’s not going to be good news. 

Xxx 

Hi ECA3,

Thanks for asking after us all. We're doing OK. My wife's getting more frequent headaches so up goes the steroid dose to keep them at bay. Her back pain is also still bad which is almost certainly due to the steroids so we're in a Catch 22. 

Today we were walking around Tesco and she said she could hear whooshing noises and see kaleidoscopes! 

On a positive note we had logs delivered at the weekend so the woodburner is lit and she's snuggled up with the cat on the sofa 

A hug for you all,

Chris 

Hi Everyone,

It's incredible how our journeys are all the same but all so different at the same time! Mum was moved onto hospice at home and they have been absolute heroes! However it's still tricky as she would definitely benefit from being admitted to somewhere even for a little bit of respite but this isn't what she wants. 

She was completely bed bound for 3 weeks and didn't get up. Suddenly in the last 2 days she is getting up and walking, it's the strangest experience ever and I'm not sure any professionals, let alone us, understand what is happening. Despite the curveballs there have been a few glimpses of "mum" in there this week which have provided some laughs, which I'm sure we will take some comfort in some day.

Funny you should mention cats, Branscombe, my mum is cat obsessed and they are loving being able to sleep on the end of her hospital bed and conning just about anyone who goes in to feed them! 

Love to everyone xx