Active discussions

Please or to access all these features

Talk
Life-limiting illness

Mumsnet doesn't verify the qualifications of users. If you have medical concerns, please consult a healthcare professional.

Original poster

Dad has acute myeloid leukaemia

171 replies

ilovearcticroll · 10/12/2019 19:29

It's not a good prognosis for someone his age-no treatment unless he gets on a trial. Kind of expected him to get to his nineties like my grandparents and certainly outlive my mother who has numerous health problems.

Does anyone have experience of this and what it's like? Diagnosed yesterday. He had a blood transfusion today which should make him feel better (haemoglobin was 8 and should be nearly double that). Will hear about trial after they discuss his case, but otherwise this is an aggressive, fast moving leukemia.

Even though there's been lots wrong with our relationship, l feel sad. He loves us and is kind and supportive, even if not always in the way you'd hope!

OP posts:
Original poster
ilovearcticroll · 11/02/2020 23:10

So sorry, pigdogridesagain. It has very fast for my dad-abnormal routine blood test in November, relatively well until a week or so ago and now clearly dying. Less than three months. For him it has been relatively calm and smooth, even though shockingly fast.

OP posts:
Original poster
ilovearcticroll · 11/02/2020 23:11

Floppy-how is your son now? What a horrible thing for you all to go trough.

OP posts:
pigdogridesagain · 12/02/2020 07:31

@ilovearcticroll my grandad was pretty calm as well, just hated seeing him become bed bound. To see such an active man who was always doing gardening or decorating etc be unable to get to the toilet alone and so breathless all the time was awful. When the end came it was quick and calm. I hope your father has the same, how is he today? How are you?

Original poster
ilovearcticroll · 12/02/2020 07:57

Oh, he sounds similar to my dad! He is such a practical person and always doing. I know he's found this frustrating but has borne it well, even though he's said several times how sad he is to lose things he can't do. The thing is, I think he would have hated the gradual loss of strength and ability of old age (I mean, he's in his eighties, but completely independent until he went into hospital in the last week or so!) and so, as shocking as the speed of decline might be, it's probably better.
He is accepting of care just now, and just a bit confused at times as to where he is and why. I have just repeatedly answered his questions about what meds he's had (hardly any) who is here and why he's in hospital, without dwelling on the fact he's dying because he hasn't asked that. But if he did, I would be honest. I just think he probably knows really.
I haven't had a call in the middle of the night so I am guessing it was pretty settled. We'll see what today brings. Probably and hopefully, sleep, calm and him knowing people are there for him.

OP posts:
Lordfrontpaw · 12/02/2020 08:09

Dad found the whole process fascinating and drive the staff nuts squirming around to try to see them lumbar punctures - so they got him a mirror so he could see what was going on (and ask questions). Then he sat on the ward reading books about medical procedure errors chuckling away.

Original poster
ilovearcticroll · 12/02/2020 08:34

Oh bless him. Medical stuff is fascinating if you're able to see it that way.

OP posts:
Lordfrontpaw · 12/02/2020 08:35

Dear god - just seen my autocorrect - them words done changed them tharselves...

Original poster
ilovearcticroll · 12/02/2020 13:25

It's one of the few things about posting on Mumsnet that I'm not keen on-no chance to edit or delete! But I guess it keeps me on my toes and makes me think about what I want to type.

OP posts:
Lordfrontpaw · 12/02/2020 13:58

Serves me right for not taking my glasses off - perversely I'm close up blind as a bat with them on!

Original poster
ilovearcticroll · 12/02/2020 19:07

Okay...trying to be brave and sensible. Dad has temporarily rallied. I'm glad, we have had a lovely unexpected day, and also (rather than but) it's exhausting to be on alert. I am considering heading home, at least for a bit, and home is a fair drive away. I am getting myself to a place where I understand that I might not be with him when he dies.
So...he knows we love him. We have spent time here. We have chatted today. My sister is staying until he dies because she can.
And although time is short, I need to have energy for what's coming and for my children.
I guess I don't want him to think anything is more important than him until he goes. Wobble. Big wobble.

OP posts:
Lordfrontpaw · 12/02/2020 19:31

Nothing you can do will change things, so you need to be practical and keep calm. Life does still need to go on - it’s a bit of a twilight time now - it kids still need fed and you still need to sleep and eat or you will be no use to anyone. You don’t ‘need’ to be here, there or anywhere - there are no rules. It’s nice that your sister is there too.

I’m glad you had this gift of a day with your dad. Hug your dad and don’t let him see you cry (you will kick yourself later).

Minxmumma · 12/02/2020 19:34

I am sorry you find yourself here. It's an odd limbo land of waiting, worrying and wishing. I'm so glad you had a good day, please take care of yourself.

Original poster
ilovearcticroll · 13/02/2020 16:30

Thanks for those words, Minxmumma and LordFrontPaw. I left today feeling peaceful. Dad had got me to write down some memories today and that felt nice to do. He saw doc just before we left and although he said he didn't like being incapacitated, he emphatically said how much he liked the hospice "I'm very happy here" when the nurse clarified what he didn't like. What will be will be and we are going away for the weekend. And I had a big, big squeeze from my littlest when u got home. And even a medium sized squeeze from my son!

OP posts:
Original poster
ilovearcticroll · 15/02/2020 05:06

Oh bless my dad. He died early this morning, absolutely peacefully with family around him. For now I feel calm and relieved he's at peace. The rest can come when it comes.

OP posts:
Minxmumma · 15/02/2020 05:43

@ilovearcticroll so so sorry for your loss

Spickle · 15/02/2020 08:24

@ilovearcticroll so very sorry to hear of your loss

Jackrusselsarecute · 15/02/2020 08:26

@ilovearticroll I'm sorry to hear about your loss. You have obviously been a great support to your dad since his diagnosis Thanks

LangittleClegabbage · 15/02/2020 08:36

I am so sorry ilovearcticroll Flowers

Lordfrontpaw · 15/02/2020 09:03

Sorry for your loss.
You will be in a bit of a strange period now, busy with funeral arrangements and friends and relatives getting and contact. Take things slowly and remember it eat and sleep.

Original poster
ilovearcticroll · 15/02/2020 09:48

Bless you all. This thread has been an enormous source of support and comfort. I hope it might even be helpful to someone else in a similar journey.

OP posts:
Wilmalovescake · 15/02/2020 10:22

I’m so sorry arcticroll.
May his memory be eternal x

Janus · 15/02/2020 11:31

I’m so sorry for your loss, hope you, your family and your mum are all coping as best as you can Flowers

pigdogridesagain · 15/02/2020 12:23

I'm so sorry for your loss OP xx

GruciusMalfoy · 15/02/2020 19:07

I am so sorry, arctic xxx

Original poster
ilovearcticroll · 15/02/2020 22:14

Thanks all. So...it's come in a big wave. I want him back, have forgotten all the annoying things, remember all the sweet kind things and don't really want to play this game any more. ☹️

OP posts:
Please create an account

To comment on this thread you need to create a Mumsnet account.

Join Mumsnet Log In

This thread is closed and is no longer accepting replies. Click here to start a new thread.