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Original poster

I don't know how to do this; a hand hold please

160 replies

bloodywhitecat · 28/01/2022 21:46

Just for tonight?

DH has cancer, it's terminal and it is spreading fast. He's also recently had a massive stroke so he can't tell me what's wrong but I do know that tonight he has had some break through pain so I have given him extra oramorph to help him. I also know he wants to die at home and I want him to be here but honestly, it is so so hard. He is settled and asleep at the moment but I can't switch off. If his pain comes back I will call our hospice for advice but tonight it has all got on top of me (and I realise he is the one going through this, not me so I shouldn't be sitting here crying). Talk to me for a while? Please? I do have people I could call but it is getting late and I don't want to cry down the phone at them.

OP posts:

BabbleBee · 30/01/2022 20:19

@bloodywhitecat I’m late to the thread, so apologies if this is already covered.

Ask your DN team when they will consider a syringe driver for him - if he’s see-sawing on the stat doses (the injectable meds) then a CSCI (continuous sub-cutaneous infusion) is much better at maintaining the management of symptoms. There may be a policy in place of how many injections he has before they will site a syringe driver, but the hospices I work with are happy to get them going sooner rather than later.

The hospice may also have a ‘Hospice at home’ team - I think you mentioned carers, are they from the hospice? Hospice at home are very good for regular visits, and if he has a syringe driver in place he’ll be reviewed every 24 hours.

Wishing you all the best

VioletOcean · 30/01/2022 20:27

You have every reason to feel the you are. It’s hard being for him and hard for you. You are seeing your lover in pain and it’s absolutely terrifying and hard.

Tigerteafor3 · 30/01/2022 20:37

Bless you. I couldn't read and run. My nana nursed my grandpa at home until he died in hospital, with all his daughters and granddaughters around him. It's a wonderful, thankless, selfless thing you are doing.

Grimupnoorth · 30/01/2022 20:47

Been following for a while and just wanted to send love. You have been absolutely incredible and so strong. Its not just about him its also about you because youre exhausted. Echo the syringe driver but if they are reluctant (and they were with my mum despite her being an in patient in a hospice ) she had some kind of super quick codeine derived drug when the morphine stopped working. It was expensive which is why its not first line but it was really good for just before she needed to move. Keep pushing - or ask someone else to if youre too tired. Xx

LooseVsLose · 30/01/2022 20:47

Didn’t want to read and run. Sending you and your DH all the love and support I can as a stranger on the internet. I’m so so sorry you’re going through this. I’m so sorry anyone is. X

JimmyShoo · 30/01/2022 21:27

So sorry @sueelleker

Still thinking of you @bloodywhitecat

yourestandingonmyneck · 30/01/2022 22:48

Oh @bloodywhitecat I'm so very sorry.

I have read your posts before, about your husband and foster babies and always thought fondly of you.

Your husband truly sound like an amazing man. What a wonderful couple you two are.

Sending you so much strength and love xXx

Original poster

bloodywhitecat · 30/01/2022 22:49

Anti emetics have worked their magic. NHS 111 were brilliant today, meds were collected and back home within 90 minutes of the district nurse calling them. I am hoping we all sleep tonight.

Thank you all for so much support.

OP posts:

PasswordEarth · 31/01/2022 10:32

@bloodywhitecat hope you all had a restful as night as you could.

@sueelleker I’m so very sorry.

SandysMam · 01/02/2022 20:35

Hope you are ok @bloodywhitecat been thinking of you and your DH and sending strength to you both.

Original poster

bloodywhitecat · 01/02/2022 21:26

@SandysMam

Hope you are ok *@bloodywhitecat* been thinking of you and your DH and sending strength to you both.

Thank you, yes I am OK I have managed some sleep over the last few days. DH has been more aware and with it the last few days again although I have noticed his appetite is off again so I wonder if we are heading into another bad patch.

OP posts:

PasswordEarth · 02/02/2022 17:29

Still checking in to see how you’re doing and Mr white cat. Glad you’ve had a few better days and hope the bad patch is as delayed as possible/doesn’t come

Muddlebubble · 02/02/2022 17:40

I went through this with my mum few months ago, honestly it's the hardest thing i ever did.
I was her sole carer with hospice care popping in and out.
The medication worry was so much pressure as you feel if they are in pain it's your fault and i promised her i wouldn't let her suffer.

Mums syringe driver went in the day before she died and it was such a relief, is there anyway you could ask for this

Original poster

bloodywhitecat · 02/02/2022 22:26

@PasswordEarth

Still checking in to see how you’re doing and Mr white cat. Glad you’ve had a few better days and hope the bad patch is as delayed as possible/doesn’t come

Thank you, today I have felt like screaming. I feel like I never get a minute to breathe, between the kids and DH there is always someone that needs something and only me to do it. The carers come in three times a day but I always end up tidying up behind them. They leave things like toiletries in the reach of fosterling No.1 and , being nearly 2 he does like to grab them the things get damaged or broken. Sometimes it is just stupid things like leaving DH's dirty clothes or bedding on the floor rather than in the laundry basket but it is all more work for me, more weight on my shoulders.

@Muddlebubble we have all the things we need for when syringe driver time comes but we are not there just yet.

I just `don't want him to die. I don't want him to leave me. We had plans. We had things we were supposed to do but instead I am here, googling local funeral directors so I know who we want to use.

OP posts:

SheldonesqueTheBstard · 02/02/2022 22:33

Fat hand sticking out for you bloodywhitecat

As if the weight upon you isn’t enough, it can’t be easy when those who are there to help are unknowingly adding difficulties to your day.

Sending love and hope and strength

inininsomnia · 02/02/2022 22:38

Oh, my love. I just read all your posts. I'm so sorry. I went through this with my dad recently but it must be so, so hard for you. And he sounds so wonderful.

I'm glad you have him at home. That's what my dad wanted but he died in the hospice. I'm glad you can do this his way though I know how hard it is .

KingRoloIV · 02/02/2022 22:39

Another one whose followed your story from the start. I’m so sorry this is happening to you and your lovely DH 😢
Wishing you all the strength in the world to deal with this😍😍 God bless you both

BuickMcKane · 02/02/2022 22:42

@bloodywhitecat it's not fair my lovely. I'm so sorry.

Cantchooseaname · 03/02/2022 19:12

It’s hugely unfair.
Your love and compassion shine in how you speak about your family, but can feel the weight of what you are doing too. What a horrible situation for you all.
I hope you find a moments peace for you today.

Original poster

bloodywhitecat · 04/02/2022 22:00

Tonight he's in pain again, I hate this. I hate seeing him like this. I hate cancer.

OP posts:

Piccalino3 · 04/02/2022 22:24

Your post has broken my heart. I'm so very sorry to read your story. I can't make anything better but I'll give you a hand hold to give you some strength. He has your love, what a gift you are to each other.

Can you give him anything else to get on top of the pain or call the nursing team to come to help?

SheldonesqueTheBstard · 04/02/2022 22:26

I’m so sorry that you both are having to endure this. I’m sorry that he is in pain and I’m sorry that you are having to witness it. And I’m sorry that it is difficult to get his pain under control.

It isn’t the life you both wanted. My heart breaks for you. Which is bugger all use for you both in your time of need.

I hope that someone comes along with advice or guidance which will make things bearable. ✨

sueelleker · 04/02/2022 22:34

Still thinking about you. I booked my DH's funeral today. It's very hard.

SheldonesqueTheBstard · 04/02/2022 22:36

sueelleker

[flowers

SheldonesqueTheBstard · 04/02/2022 22:37

Sorry

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