505 replies to this topic

[CocoPops]

Thankyou all for the messages, Facebook messages and PMs.

Such a strange place to be currently.
Alex struggling with walking about the house even, so it’s tough.

I’ve written her eulogy in my head many times whilst driving, that’s how it affects you even when not with the person.

[CocoPops]

Christmas has again been bittersweet.
A wonderful time for the children, but a steady decline for Alex.

I called the oncology triage team today and talked through her current state and they asked me to call out of hours GP to prescribe steroids to reduce brain swelling.

Tomorrow I’ll be calling the normal oncology team in order to try and get an urgent review appointment.

I fear we are rapidly heading towards the end.

In some ways I’m glad we’ve seen the girls birthday (21st) and Christmas. It means they should anything happen soon, it will be a reflective day in the future rather than depressing birthdays (any more so than not having their mummy around for birthdays if that makes sense).

Days? Weeks? Certainly don’t think it’s months.

Have picked Alex up many many times over last few days, she just cannot coordinate her left leg and once she starts falling, she cannot stop or brace herself.

Next stop is some kind of home care I think, I just don’t know what we can have or from whom.

[jules_s]

Sorry to hear that again Lee

 

No chance of some palliative care? We have a relative with a similar condition/timescale and I know she's receiving help that way from the nhs (old lady mind - brain cancer)

 

 

 

 

 

 

 

 

[CocoPops]

This is why I need to call tomorrow, funny enough they all shut down 25/26

[oblomov]

Heartbreaking to read.

[Johnboyhgt]

My thoughts are with you all at this difficult time. X

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[CocoPops]

Hospital bed now in place in lounge.

Still no real acceptance from Alex that things are getting worse, which makes it difficult, as we have to be a little bit careful what is said.

Scan (MRI) on Sunday and then consultant appt on 2nd to discuss.

[CocoPops]

Just to keep you abreast of Alex’s brain tumour status.
The last 10 days has been a period of steady decline.

Alex now has zero control or feeling of her left side, we think due to tumour growth. Her positive outlook remains, although this is sometimes misplaced as her mind is clearly more capable than her body is currently.

We now have a hospital bed (procured by GP after a home visit) in the lounge as it’s simply not safe for her (or us) to take her up the stairs, even with 2 people to assist.

We have a Sue Ryder nurse coming today to assess her condition and look at future care needs.

We’ve managed to borrow a wheel chair which made the hospital visit for scan much easier yesterday.

The scan will be processed and Alex has an appointment on the 2nd Jan which my parents will take her to. I aim to be in the office as normal on 2nd, will take each day as it comes.

We had a family photo shoot on Saturday for memories, looking forward to seeing the images. Even an hour out of the house was immense effort for Alex, in the wheelchair.

As ever, I owe immense thanks to our friends and family for their support. My parents have pretty much wiped out their plans over Christmas and new year to move into our spare room, I couldn’t look after Alex and the girls to the level they all deserve without that support.

Alex has had visits from her parents and her brother and anyone else is very welcome, just let me know.

Please don’t be strangers at this difficult time.

[MartinS]

Horrible to hear this Lee, how unfair that such awful stuff to happen to such lovely people.

 

Martin S and family.

[Peter VXR29]

What can one say.....our hearts and prayers go out to you and your family.

[CocoPops]

Sue Ryder nurses came today... based on assessment and the decline we’ve seen so far... 10-14days
Not quite sure how to process it really. At least there won’t be too much suffering.
Will keep posting, I find it therapeutic and carthatic if that makes sense?

[Madmitch]

Rereading this thread I can't imagine how you have all managed to cope with the last almost five years, massive courage all round.  More needed in the next weeks without a doubt but there is so much support for you out here and that will continue into the future.  Bon Courage...…………….we will all be thinking of you. 

[The Batman]

gutted for you bud, love goes out to you all.

 

Anything you need just say bud

 

i know a good breakfast place in aylesbury next time you're here!

[Foxy]

Thinking of you and your family Lee.

[Sutol]

You keep posting away mate, if it helps over the next weeks then that's all that matters.

[PaulCP]

I’m sure the whole community here are ready to help in whatever way they are able 👍

Thoughts are with you now more than ever

[ianrm]

      

[Duncan VXR]

Very warming to hear the great family and friend support. Thoughts with you and your family

[IWOOT]

[Dan r]

She's clearly getting a lot of love and care.
Hope she's comfortable and you all get through this difficult time together OK.


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