Hi, my Mum has very recently been informed her myelofibrosis has progressed to Acute myeloid leukaemia (AML). It’s come as a shock, it doesn’t seem that long ago she was told her Essential thrombocythemia (which she had had for many years) had progressed to MLF. She had been having 3-4 weekly blood transfusions for last couple of months. The deterioration in her health is clearly visible, she’s weak, tired and over the last 3 years has lost so much weight.
We don’t know what her treatment plan is yet, hospital appointment this week. The shock of the diagnosis and the current not knowing what the future holds for her is obviously upsetting for all of us. Chemo and stem cell have been mentioned but she is nearly 80 so I’m concerned about whether she is strong enough for harsh treatments.
From a purely selfish perspective, she and my Dad are my main childcare support after school when I’m at work so I need to make alternative arrangements for this. I’ve told my children that they can’t go to their grandparents this week because she is poorly, they have both accepted this as she has been too poorly to have them in the house in the past so it’s not that unusual. However I realise from reading other chats that the chemo ruins your immune system, so long term I can foresee that she won’t be able to have my children for some time, which is sad all around. I also need to talk to my children about her Acute myeloid leukaemia (AML) diagnosis but I’m waiting until we know more about her treatment.
It’s so horrible to see her so weak and tired, and a shadow of the person she used to be.
Im going to her hospital appointment with her and my Dad but I’m really worried that I’m going to cry in front of her when the Dr is discussing her options, which I haven’t done at any point. I don’t want to burden her with anymore worry.
Sorry I’m writing as I think so apologies if I’m not making any sense! This diagnosis just feels like more of a death sentence than the others, particularly when she is so weak.
Oh @Deej having read your post I really feel for you.
It sounds a really difficult time for you all.
It must be so hard for you seeing your parent getting weaker, tireder and poorlier.
Yes, there must be a lot going on in your mind.
Perhaps it is positive that you are going to your mum’s next appointment.
I find a handy hint is to write down all my fears, questions and practicalities beforehand.
After you have gained more information then you can talk to your children in a language that reflects their age. I put it like that as I do not know how old they are.
Personally I think it is positive to give them the space to ask questions at any time and you all might deal with things very differently.
You say you worry about your post not making any sense, to me it makes absolute perfect sense, it is very honest and I find this is a safe place to say how it really is for me too.
Really be ever so kind to yourselves and really look after yourselves and please keep posting how you all are.
I hope others will share their experiences
The Blood Cancer UK support line is also there for you on 0808 2080 888
A warm welcome to you. You’re doing a marvellous job, and I know this must be incredibly scary and stressful.
I just want to specifically say that it’s OK to cry in the appointment (or any time that you need to). I found that I was better able to handle my husbands treatments and life generally if I just allowed myself the space to feel the emotions and cry without judgement.
As a parent (albeit to younger children) and a daughter to my own parents, crying is natural. Don’t overthink it - you’ll borrow a worry from another day that you don’t need taking up space in your head.
Maggies, MacMillan and the resources on this website were hugely helpful in explaining things to my kids in an age appropriate way. Maggies offered things like art therapy etc so I hope that there will be something that you can find that you feel will fit your kids well.
Please let us know how you got on at the appointment if you feel upto it and want to share.