Devastating News

thomasross20

She's hoping for a Marie curie need nearer the time because every time we've had to use NHS it's been 4-6 hours in A&E followed by an overnight. Hospice would be dedicated and constant specialist care but I understand there are limited numbers. She still has to decide which room but we thought about it briefly. And get this, when her son visited the other day he came out with this corker : "well, you've got to die some time, mum" Jesus..!

holnrew

You inspire me to be a better man Tom. Seriously you have so much respect from me.

octatonic

thomasross20 said:

She's hoping for a Marie curie need nearer the time because every time we've had to use NHS it's been 4-6 hours in A&E followed by an overnight. Hospice would be dedicated and constant specialist care but I understand there are limited numbers. She still has to decide which room but we thought about it briefly. And get this, when her son visited the other day he came out with this corker : "well, you've got to die some time, mum" Jesus..!

He's in denial.
Someone in my family said the same thing when our Mum was diagnosed with cancer.
I don't envy you Thomas, but I certainly admire you- you are doing a fantastic job under truly awful circumstances.
I can't say anything else but that.

Evilmags

You can add restraint under extreme provocation to your list of qualities. 

thomasross20

Cheers guys! Welcome any time if you're near Edinburgh. You'd think the house had been lived in for years, been very (!!) busy getting it sorted!

@octatonic did that person take it hard afterward if they were in denial?

Guitar_Slinger

holnrew said:

Mr Ross is stronger than braveheart

This.  Tell it to yourself when it feels like things are a bit much.  Not just during Sheena's ilness, but whatever you get up to during the rest of your life.  You've got big balls @thomasross20 and you can do stuff.

guitars4you

octatonic said:

thomasross20 said:

She's hoping for a Marie curie need nearer the time because every time we've had to use NHS it's been 4-6 hours in A&E followed by an overnight. Hospice would be dedicated and constant specialist care but I understand there are limited numbers. She still has to decide which room but we thought about it briefly. And get this, when her son visited the other day he came out with this corker : "well, you've got to die some time, mum" Jesus..!

He's in denial.
Someone in my family said the same thing when our Mum was diagnosed with cancer.
I don't envy you Thomas, but I certainly admire you- you are doing a fantastic job under truly awful circumstances.
I can't say anything else but that.

I said something similar to my mum when she died of cancer and only a few days before the end  - Ill for 7/8 years so a long slow process - But she knew where I was coming from and it was certainly not said or received as anything nasty - sometimes just a way of someone trying to say what they can't really say, or don't know how to say it

@thomasross - be brave - I read your blog and whilst my mum died of cancer over 30 years ago, your story is bringing back memories off what it was like with here - It certainly is not easy and doesn't get any better - best wishes

TheBlueWolf

You can add the patience of a saint to your qualities Tom

mgaw

I wouldn't be too hard on her Son , the Scots are notoriously shit at all things emotional and in that constipated state most of us struggled.  I would guess he is hurting as much as the rest of you. poor lad is losing his mum and doesnt appear to have the strength to be "normal" about it....best wishes Thomas and to Sheena , toughest of times

richardhomer

Nothing to add Thomas except well done for getting this far. You're a super-star human being

speshul91

You deserve a medal dude, I'm taking a family member for radiotherapy daily and thats hard enough, i really don't know how you are doing it. 

thomasross20

Hey well done to you!!
I can't imagine doing any different and it's rewarding, though I'm going to try and get some "me" time soon so I can go see the new "It" film..

thomasross20

EDIT - been advised to delete/modify that. 
Gist was - medical expert thinks things could have been a lot different had things been done right 2 years ago.

speshul91

My heart really does go out to you man, there's a beer or 6 with your name on if you are ever around nottingham. 

DrCornelius

speshul91 said:

My heart really does go out to you man, there's a beer or 6 with your name on if you are ever around nottingham. 

Indeed, same goes if you are ever down in Dorset.

merlin

DrCornelius said:

speshul91 said:

My heart really does go out to you man, there's a beer or 6 with your name on if you are ever around nottingham. 

Indeed, same goes if you are ever down in Dorset.

+1 Brighton...

thomasross20

Thanks, all - you're the best!

Update! District nurses are coming weekly now, they raised the possibility of a hospital bed in one room but Sheena passed on that. We have two toilet seats, a bed rail, shower chair, incontinence pads, and other home aids. Waiting to get a stair lift fitted. I massage her feet and legs every night due to fluid build-up. 

Oh, got a proper wheelchair! She can't walk for more than 10 seconds before collapsing so I'm wheeling her outside in that now. You know I used to have worries about growing older and taking care of her but I realise now that was all such rubbish - you do anything for the one you love, there's just no thinking twice about it. It's totally been an honour and privilege to know and help her, if that doesn't sound too corny.

She's 100% hoping she'll get a hospice bed but they're usually for the last 2-3 days of life and aren't guaranteed. We have all the injectible "just in case" medicines in the cupboard, too. 

We were going over 10 years' worth of photos last night again - she shed a few tears remembering how she once looked (damn steroids!) and how we've been robbed of our life together. Also went over her living will and beneficiaries with one of her sisters and I. The children are waking up to it a bit more.. concern being raised, more help being given, some red eyes. 

There's a fair old routine before every meal now - measure her blood sugar, give her pills etc. All written down with dates and times. Scarily, the last few days she's been having pain again .... the medicine has been able to rid her of that, at the cost of steroid-induced diabetes and bloating, but it's back now. So this morning she's been in her room all day and had to take two lots of morphine. The stairs are too much, so I'm getting everything up to her on a tray. She just wants it to end now, she says it herself - it's an awful shame. I don't want it to end, obviously, but I got a fright watching "stop the horror" as I mentioned in another thread... I hope it wont be anything like that for her or the children. She still has her appetite and there's no sign of jaundice or anything so that's still an ok sign, but the fatigue is all-day now... she can only half-open her eyelids and can't be left alone. I just hope it will be peaceful / painless for her. She says if she's not able to speak but has conciousness then she'll give my hand a little squeeze to let me know she's still here. Looking at the decline in one month, I think over the next month she might be bed-bound but we'll see. She wants to see my birthday which is at the end of October. She's done everybody five years' worth of birthday and Christmas cards which I'm to give them afterward.

I popped into work the other day but I'm glad I'm not back there actually working - my mind just wouldn't be "on it". We're all managing to keep the chores going, look after Sheena etc. The house is largely done, just one more big thing to do. And that social worker who was disturbing her autistic daughter is no longer on the scene so that's all sorted. 

I'm going to try and get a photo or two up..
Oh and she got a new haircut - we wont be able to manage her long hair so looks now like Jamie Lee Curtis style hair!

boogieman

Must be very hard to watch this happening Tom, but you're doing an amazing job by the sounds of it. You're a bloody hero to all of us here. 

DrCornelius

Fckin hell man , I'm tearing up reading this. If I'm ever in the same boat I hope I'm half as strong as you've both been.

TheBlueWolf

merlin said:

DrCornelius said:

speshul91 said:

My heart really does go out to you man, there's a beer or 6 with your name on if you are ever around nottingham. 

Indeed, same goes if you are ever down in Dorset.

+1 Brighton...

If you end up in North London I'll buy you a beer or three too