Chronic Myelomonocytic Leukemia

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Re: Chronic Myelomonocytic Leukemia

Postby D6Nutz » 26 Feb 2021, 22:52

duke63 wrote:So sorry to hear that, Kwacky. If you ever want to rant then you know where I am.
Exactly this ^^

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Re: Chronic Myelomonocytic Leukemia

Postby kiwikrasher » 26 Feb 2021, 23:27

;( Thinking of you and the family mate
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Re: Chronic Myelomonocytic Leukemia

Postby C00kiemonster » 27 Feb 2021, 08:10

Sorry to hear this, all you can do is be there when she needs you, sadly covid doesn't allow you to visit.

I'm around of you need to talk :|
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Re: Chronic Myelomonocytic Leukemia

Postby Frankie » 28 Feb 2021, 09:35

Sorry to read this mate, I think everyone has already said, but always here to listen
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Re: Chronic Myelomonocytic Leukemia

Postby Kwacky » 03 Mar 2021, 11:27

My mum has just called. There's nothing they can do for her. She's going to be allowed home on Friday for palliative care. They've given her 2 to 4 weeks.
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Re: Chronic Myelomonocytic Leukemia

Postby Perkles » 03 Mar 2021, 11:32

so sorry to hear this ,the pallatiive nurse were amazing with my mom all you can do is be with her as much as you can
thoughts and prayers
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Re: Chronic Myelomonocytic Leukemia

Postby C00kiemonster » 03 Mar 2021, 12:53

Kwacky wrote:My mum has just called. There's nothing they can do for her. She's going to be allowed home on Friday for palliative care. They've given her 2 to 4 weeks.


;(

So sorry mate. Take some time off and spend as much time as you can with her.

Our thoughts are with you. xx
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Re: Chronic Myelomonocytic Leukemia

Postby Monty » 03 Mar 2021, 13:36

Tough times ahead mate, will be thinking of you
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Re: Chronic Myelomonocytic Leukemia

Postby duke63 » 03 Mar 2021, 22:10

So sorry to hear that news. Make the most of the coming weeks as best you can. Thoughts are with you all.
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Re: Chronic Myelomonocytic Leukemia

Postby kiwikrasher » 05 Mar 2021, 19:17

Tough news Kwacky ;(

I have no wisdom or words that will help, other than we will be thinking of you and the family and hope you get some quality time with your mum
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Re: Chronic Myelomonocytic Leukemia

Postby Itchy » 07 Mar 2021, 13:32

If you need a chat just give me a shout, mate.
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Re: Chronic Myelomonocytic Leukemia

Postby Kwacky » 08 Mar 2021, 14:32

All being well she's leaving hospital today to go home. They've got a bed and everything else set up for her. Carers are in place, we just need to sort out the timings. I'm hoping I'll get to see her shortly.
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Re: Chronic Myelomonocytic Leukemia

Postby Kwacky » 08 Mar 2021, 19:56

Despite being told she's out today we've heard nothing and the ward isn't answering any calls.
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Re: Chronic Myelomonocytic Leukemia

Postby Kwacky » 09 Mar 2021, 11:55

She was dropped off last night at about 8pm.

I went to see her this morning. She's tired and looks worn down. I didn't stay long. It's her first day back home so I know a lot of people want to see her.
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Re: Chronic Myelomonocytic Leukemia

Postby duke63 » 09 Mar 2021, 11:59

Quick but freqeunt visits are the way forward, at least that worked with MiL.

Its very tiring for both parties from our experience both emotionally and physically.

The best you can do is be with her as much as possible.
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Re: Chronic Myelomonocytic Leukemia

Postby StMarks » 09 Mar 2021, 12:55

There's nothing I can say that will make the coming period any easier for you Kwacky, please be aware that doesn't mean I don't sympathise. :(

Perhaps, in between visits & whilst reflecting, make notes on everything what you would like to say to her/ talk about with her whilst you can.? That may help reduce the sense of missed opportunity that is an inevitable component of grief.

My thoughts are with you mate.
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Re: Chronic Myelomonocytic Leukemia

Postby Cav » 09 Mar 2021, 14:50

I'm happy for her that she's home if that's what she was wanting. That makes such a huge difference to their comfort.

If you need to chat to anyone please reach out to me. My MiL is a Hospice at Home Senior Nursing Assistant for Sue Ryder (an end of life cancer patient charity of the highest calibre) and I've learned a lot from her over the years. If you have any concerns about the care she's receiving or aren't clear on the answer they're providing you I may be able to help through my MiL.

Have they explained what's going to happen in terms of your mum's care plan?
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Re: Chronic Myelomonocytic Leukemia

Postby Kwacky » 09 Mar 2021, 14:54

Thanks Cav

It was all discussed and put in place before she came home. She's got a point of contact and a couple of mobile numbers to call if they need anything extra. She's getting help with making sure all of the paperwork is in place for when she passes to make sure it goes smoothly. Mum has been making a list of the companies/banks etc to contact.
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Re: Chronic Myelomonocytic Leukemia

Postby Cav » 09 Mar 2021, 16:11

I'm honestly glad that she isn't in denial about the situation, it makes it more pleasant (I use the term loosely of course) for all involved.

Have they explained when to contact the DN rather than the Carers too? For example if your mum becomes uncomfortable and needs a syringe driver or whatever else then the DN is the person who can do that for you? On the subject of syringe drivers, it isn't the death sentence people think it is, it's purely to aid the comfort of the patient.

I sincerely hope your mum has the best experience she can. Best wishes to you all mate and please remember me if you feel you need to reach out.
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Re: Chronic Myelomonocytic Leukemia

Postby Kwacky » 15 Mar 2021, 22:58

Mum took a turn for the worse on Friday and was admitted back into hospital with a chest infection. She reacted well to medication so the hope was to move her to a well known Birmingham hospice.

Sadly she's not been well enough to transfer.

The hospital very kindly allowed my brother and I to visit (separately) so we could say our goodbyes. Her husband is staying with her.

My brother saw her first. Initially the hospital indicated that only one of us could go, so I told my brother to see her. He's very close and all weekend he's been saying he wanted to see her one last time. He got to say what he wanted to.

The hospital agreed to me going as well so I went this evening. She's full of morphine and very weak. She was struggling to open her eyes when I saw her and couldn't speak, even though she tried. She was responding to to what my brother and i said, so hopefully she heard us.

Today's visit has really helped my brother comes to terms with what's happening. He was getting more response from her than I did. He's glad he had the opportunity.

We both agree that we want her to pass peacefully now.
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