Thought I'd post this here in case it was of use to anyone in the future. Not looking for replies, more a place to write our journey and experiences and for anyone else who's been through this, either themselves or a close relative, so anyone facing it might have an idea of what to expect.
Caveat: this is my mum's story and it doesn't end well, but her prognosis was never good from the start.
Back in 2009-10 mum started feeling increasingly tired but put it down to getting older. On holiday in 2010 she collapsed and went to the doctor when she got back. She was initially diagnosed with pernicious anaemia, then aplastic anaemia, and treated with regular blood transfusions and B12 injections alongside iron chelation tablets to remove excess iron in her blood. Weirdly, the iron tablets seemed to trigger something and she was declared to be on the mend for a good few years. She was still having bone marrow biopsies every six months, but all was clear. At some point the doctors decided it was myelodysplastic syndrome, and she was warned that it had the potential to transform into acute myeloid leukaemia (AML).
In 2016 and 2017 she generally lacked energy and complained of feeling tired and low, and in October 2017 her consultant ordered a bone marrow biopsy. Lo and behold, they discovered she'd now got AML and so she was given the option of palliative chemo or full-on chemo with the aim of a cure. Eventually she decided to go for the full-on chemo, but just a day later she complained of feeling unwell and dad took her to A&E. They found she had an infection and admitted her immediately.
She stayed on the acute ward there for a week and was then transferred directly to the main hospital to begin chemo (a combo of cytaribine and daunorubicin given over four cycles) with a stem cell transplant if all went well. Except the damn infection took weeks to treat, using all the broad-spectrum antibiotics they could throw at it. A doctor later said it had been a pretty bad case of pneumonia, although nobody told us that at the time. Since then she's had infection after infection, some of them making her really really ill. She ended up with a viral infection around her mouth, and this has been very painful for her, making eating very difficult, and so she's lost a lot of weight.
At this point her consultant said it was unlikely that they would offer chemo, because it was more likely to kill her, and they'd review it in a week or so (this was just before Christmas). Of course we then got the dreaded phone call a week later saying they couldn't do anything more for mum, and she'd be brought home or to a hospice to have palliative care until she passed away.
Unfortunately because of the Christmas period there have been quite a few delays, but hopefully she will be home later this week or early next. Ironically her mouth is now healing and she's eating well, but it's too late. So we have met with the palliative care nurses and occupational health team today to discuss equipment at home and care provision etc. We also have the option of a hospice if we or mum can't cope with having her at home until the end, but we are all keen that she comes home for a few days at least, plus the hospice is a fair drive away. She's now been in hospital since the start of December and she's climbing the walls, bless her.
I'll update this as we go, but if you find this thread in the future, having found yourself in the same position, please don't hesitate to message me and I'll see if I can offer any advice.