My mum is 81 and has Acute myeloid leukaemia ('AML') (diagnosed in July). She has refused to have any chemo. She’s currently well and still independent. Eating and drinking fine. Having weekly FBCs and so far needing blood transfusions around every 2 weeks. She was given a 6-12 month prognosis. I’m struggling as she’s as well as she’s ever been and really don’t know what to expect in terms of progression of this illness.
Mum doesn’t want to know and at the minute is refusing to attend appointments with her consultant.
Everybody deals with the diagnosis differently and in their own way but I can only imagine how difficult it must be for you as well. I would be the same if it was my mum.
I know I would have lots of questions and not being able to ask these or discuss things with your mums medical team must be tough. .
I’m glad your mum is doing well at the moment. I understand why you want others to share experiences, but remember, everybody’s journey can be different.
I have shared the link with advice for supporting a loved one with blood cancer and the helpline number if you think it would help to talk things through.
I know others will be able to connect with you who have also had to support friends or family through a blood cancer diagnosis and I hope you’ll feel less alone now you have found us.
Hello @Baughy, and I’m really sorry to hear about your mum’s diagnosis, and what you’re having to navigate emotionally and practically yourself as well.
I can see that Nicola, one of our lovely Forum Support Volunteers, has already responded, and I wanted to contribute some extra bits as well.
I’m going to bring our nurses in on the clinical side of your question, since what you’ve asked about progression is something they can probably speak to more usefully than I can: @BloodCancerUK_Nurses. We also have a page on non-intensive treatment for Acute myeloid leukaemia ('AML') that covers what supportive care (like transfusions and antibiotics, without chemo) tends to look like day to day, which sounds close to where your mum is at: Acute myeloid leukaemia (AML) non-intensive treatment.
On your mum not wanting to attend appointments or know more - some people manage by not looking too closely at what’s coming, though of course that might not make it the easiest thing to deal with for those loved ones who are attending the appointments and overseeing care. Macmillan have a page on coping with these feelings, including denial, that might be worth a look: Coping with feelings when a loved one has cancer.
Take care, and please do let us know how you’re both getting on.
Thanks Ceri. This is really useful. I just want to be as prepared as possible. I’m a Nurse so not knowing what’s going on is very difficult! I’ll have a look at the links today.
I am sorry to hear about your mums diagnosis and what you are going through. Its understandable you are struggling. If it would be helpful to talk things through, please do not hesitant to contact our nursing support line on 0808 2080 888 option 1.
It is good that your mum is feeling well at the moment. Hopefully this will continue. Whilst it is difficult to predict how your mum will progress with her Acute myeloid leukaemia ('AML'), what often happens is the need for transfusion increases and the internal between transfusions shorten. You may find that your mum does not benefit as well from the transfusions and starts to become more tired and weary as the disease progresses.
It is such a shame that your mum is refusing to attend her appointments but maybe this is her way of dealing with things? Are you able to go to your mums appointments without her or discuss with the clinical nurse specialist? Have the team referred your mum to the community palliative care team for further support for both of you?
