Hello, first time poster, hope I do this right. My uncle got diagnosed with borderline Acute myeloid leukaemia (AML) last week while in hospital for an infection and because of his frailty his doctor advised against a bone marrow biopsy. They said it won’t change the outcome. He also has heart failure and CKD making things worse. They recommended a hospice but he wants to go home and they are happy with his decision.
I struggled with grief for my parents. Mam had gallbladder cancer and dad had mouth cancer, now all the feelings I thought I had dealt with are rising to the surface again.
I sort of feel on edge waiting for something to happen after reading some other people’s experiences. With tumours like my Mam’s, it was the size of a grapefruit, you can get an idea where you are. But Acute myeloid leukaemia (AML) doesn’t seem to have a timeline and can come out of the blue.
Anyone have any advice on how to get by day to day and just keeping it together?
Dear @Samkat01,
Welcome to the forum, although I am so sorry to read the reasons you have found us!
I am sorry to read about your uncles diagnosis, and the worry you feel for your parents.
For now I think take each day as it comes. It is very difficult to say how things may progress, Acute myeloid leukaemia (AML) effects everyone differently.
The important thing is to ensure when he comes home you have the contact numbers you need but he will likely have a set up with community palliative care. Hopefully you will all feel well supportive so his end of life can be peaceful and his wishes met.
We would be very happy to talk things through with you, our phoneline is open and you can reach us on 0808 2080 888.
It sounds like you are looking after everyone else but do make sure you take care of you too!
Best Wishes,
Heidi (Support Services Nurse)
Thank you so much for your support and kind words I found out our hospital has a Macmillan Cancer Support Centre and I dropped in and had a chat with one of the nurses. She said any support I needed, at any time I could just go and talk to someone. So I have yourselves and Macmillan, and I feel a lot better now I know I have someone to help if I need it. Lots of love
I can’t give you any advice but just wanted to let you know you’re not alone. At the beginning of August, my mum, having had a routine blood test, was told she has Acute myeloid leukaemia (AML).
She was a fit and healthy 79 year old when she found out so it came as such a shock I think I will contact the MacMillan Nurses as I’m struggling to cope and often find myself crying
I just thought I’d have longer with her. My heart is broken. Sending you love and strength x
Thank you. My heart goes out to you and I too was devastated when my Mam was so unwell. She passed away 3 years ago and if I’m honest I’m still struggling.
It’s so hard when the person who would usually get you through the worst time in your life is the one that can’t hold your hand when you need it most.
But I would cry too, so many times. Maybe it’s the same for you but just hearing a song or a photo would set me off.
Sending you a warm hug and if you ever want to offload anytime about your day or talk about your mum I’ll be here
Thank you for your lovely message. You came on here for support and ended up giving it to me. Sorry I wasn’t more helpful. I’m still having good and bad days. It never goes away though.
You’re welcome. I’ve been at hospital for 6 hours today. My uncle has another chest infection and seems quite poorly compared to the other ones he’s had. I didn’t want to go home but it was end of visiting time. He might have to go back through A&E if it gets worse. So your message was a very welcome distraction for a while xxx
I found out our hospital has a Macmillan Cancer Support Centre and I dropped in and had a chat with one of the nurses. She said any support I needed, at any time I could just go and talk to someone. So I have yourselves and Macmillan, and I feel a lot better now I know I have someone to help if I need it. Lots of love 