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Life-limiting illness

Palliative care for leukaemia - what does it involve?

13 replies

SomethingNastyInTheBallPool · 16/10/2022 18:11

My mum’s had chronic lymphocytic leukaemia (CLL) for a few years now. Her latest chemo drug has stopped working, she’s feeling rotten and she’s had enough. She’s going to tell her consultant next week that she wants palliative care only.
Can anyone tell me what that’s likely to involve? Google isn’t being very helpful. Will she continue having transfusions? If she refused the transfusions (which she might well do), how quickly would her condition deteriorate? It would really help to have an idea of what we’re facing.

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pinkberet · 16/10/2022 19:22

I'm sorry, I don't have an answer but wanted to bump this for you.
This must be a tricky time for you and I'm sorry you're having to go through this with your mum

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SomethingNastyInTheBallPool · 16/10/2022 19:43

Thank you, @pinkberet.

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MyNameIsArthur · 03/10/2023 19:08

Hi I've not been on mumsnet for nearly two years. Just read your post and wanted to know what happened with your mum. I realise it's nearly a year since your post and that she may no longer be with you. I hope whatever has happened that she has/had received the best palliative care and is/was comfortable. Hope you are okay

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SomethingNastyInTheBallPool · 03/10/2023 21:05

@MyNameIsArthur Thank you for asking. My mum started palliative care in October and died a month later.
I won’t say it was pleasant, but she said she wasn’t in any pain, and she was reasonably comfortable and completely lucid until just a few hours before she died. The last day was tough - it was hard just sitting with her, watching her struggle
for breath and waiting for her to finally stop breathing. But she was able to stay at home and be in her own bed, which was what she wanted more than anything.
I miss her constantly and still can’t actually believe she’s gone.

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Hiyawotcha · 03/10/2023 21:09

SomethingNastyInTheBallPool

So sorry for your loss. It sounds as if she knew her mind and what she wanted - but that doesn’t take away from the hurt and concern for you and her family, watching on. I hope you can take comfort though from her having had agency and being able to be at home.

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HughCanoe · 03/10/2023 21:11

I'm so sorry OP. You must miss her loads but at least you were there with her in the end. Take care of yourself 💐

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SomethingNastyInTheBallPool · 03/10/2023 21:55

Thank you, @HughCanoe and @Hiyawotcha. The fact that she had agency and that things went as she’d wanted them to is definitely a comfort.

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itsallforyouandmee · 04/10/2023 19:06

@MyNameIsArthur
Is everything okay, I recognise your name from a thread a couple of years ago and you came across as such a lovely, kind person and gave lots of great advice and support. I hope everything is okay with you 💐

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MyNameIsArthur · 04/10/2023 20:16

SomethingNastyInTheBallPool · 03/10/2023 21:05

@MyNameIsArthur Thank you for asking. My mum started palliative care in October and died a month later.
I won’t say it was pleasant, but she said she wasn’t in any pain, and she was reasonably comfortable and completely lucid until just a few hours before she died. The last day was tough - it was hard just sitting with her, watching her struggle
for breath and waiting for her to finally stop breathing. But she was able to stay at home and be in her own bed, which was what she wanted more than anything.
I miss her constantly and still can’t actually believe she’s gone.

I'm so sorry about your mum. That is so sad. I'm glad she wasn't in pain and got her wish to be at home though and that you were with her til the end, although that was hard. Of course you miss her. My mum died four years ago and I still struggle to believe she is gone and can't get used to her not being around anymore. same with my dad. So for you, it is more recent and more raw and it is tough going. My mum and dad sometimes appear in my dreams and I wake up feeling happy and that they are still with me. It gives me some comfort when that happens. I hope you will be okay and things get easier for you. Take care

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SomethingNastyInTheBallPool · 04/10/2023 20:29

Thank you, @MyNameIsArthur . I’m sorry you’ve been through it twice. It’s odd how something that is completely natural, normal and unavoidable can feel so outrageous and wrong. I’m glad you still have lovely dreams about your parents - I hope my mum will put in regular appearances!

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MyNameIsArthur · 04/10/2023 20:31

itsallforyouandmee · 04/10/2023 19:06

@MyNameIsArthur
Is everything okay, I recognise your name from a thread a couple of years ago and you came across as such a lovely, kind person and gave lots of great advice and support. I hope everything is okay with you 💐

Hi thank you, your message made me slightly tearful lol. it's nice that you remembered me in that way and I hope my advice has been helpful. I'm doing okay. The past few years have been a struggle but hopefully things are getting better now. Thank you for asking. I don't remember your username from before but I hope you have been alright and life is good for you

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MyNameIsArthur · 04/10/2023 20:45

SomethingNastyInTheBallPool · 04/10/2023 20:29

Thank you, @MyNameIsArthur . I’m sorry you’ve been through it twice. It’s odd how something that is completely natural, normal and unavoidable can feel so outrageous and wrong. I’m glad you still have lovely dreams about your parents - I hope my mum will put in regular appearances!

Thank you. Yes I know. It's something we never truly get over. Our parents who were there and loved us all our lives are one day gone. It is hard. I do hope your mum makes frequent appearances in your dreams too! Let me know if she does!

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SomethingNastyInTheBallPool · 04/10/2023 20:59

I will!

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