Simply confused don't know were to turn

Hi Clare Jackrussell and welcome to this corner of the Mac Community but so sorry to hear about your mum.

This is such a challenging time for you all. I don’t have AML but have lived with and been treated for my rare type of blood cancer for over 24 years so my journey is very different. But I do see that you have connected in on one of the other threads in the group and let’s see if the members will be able to help you out.

As for the ‘how long’ question?…… you most likely won’t get any clear answers from any health professionals until there are specific signs that there is a significant down turn in your mum’s health…… I do however see that you put your question to our Cancer Nurse Team so let’s see what they come back with (do allow a few working days to get a reply).

I have been in this position with both my mum and dad with them being taken into hospital because they were poorly (not cancer)….. we do the 3 hr drive to find that they had made good progress, after a few days we go home to get the call that they had passed away.

I don’t know if you have had to answer the DNR question but it may be a discussion you need to have with her clinical team…. 

We also have our general Carers only and Supporting someone with incurable cancer support groups where you will connect with others navigating the exact same practical and emotional challenges of supporting your mum during this very hard time.

Our Support Line teams are available 7 days a week, 8am-8pm on freephone 0808 808 00 00 where you will find one of team there to help you out.

Sending supportive ((hugs))

Hi Clare, first of all my thoughts are with you and your mum. My husband was diagnosed in January 2023 with AML, he started chemo got really poorly, infections, pneumoconiosis, sepsis, 3 times I was told to prepare for the worst. We are now in August and he is still here, I get what you mean about quality of life, my husband lay in that hospital bed and couldn't hardly breathe. He is home now and slowly improved and comes on little walks with me and we are adjusting to slower pace of life. He is on low does chemo for life, I asked how long life expectancy with this treatment, they cannot say because things can change, his lungs are damaged and we fear and drs too that this could be the thing that takes him not the AML, so I asked typically when looking historically at others on his treatment, they said 2 years but don't hold them to this.  Your mum sounds like a fighter like my husband, he is 68,  it is hard to watch somebody suffer like you and I have with this dreadful disease. For me I know things will get worse in time, but I take each day as it comes. I find there are not many people speaking about experience with AML on forums, there has not been any support offered to me, I broke down in the pharmacy picking up medication and she was the only person who listened to me. It feels a lonely place and sometimes I feel quite down. Which I expect is normal, I hope my message has helped a bit and that hopefully few weeks down the line your mum will improve a bit more. Take care x

Hi, many thanks for your reply I really really appreciate it, hope things are good (as they can be) with you and your husband.  Mum is still battling infections 16 days later no improvement and still having temperatures seems to me they simply can't get this sepsis under control, I've finding it very difficult to gey any information from doctors or consultants almost to the point that I feel they are avoiding me, I'm still questioning quality of life, mum is so unhappy in the hospital quiet emotional about it and is not eating nothing at all, today I'm going to phone the consultants secretary and ask for an appointment to see him, to see what's going on.  It's a complete worldwind getting nowhere and getting increasing frustrated.

Thanks you for reply, I hope things continue to be positive xx

Hiya thank you that's really kind, I hope you get somewhere today with the consultant secretary, have you been allocated a specialist nurse who you can also speak to? My husband also went through the emotional side of things and it is totally understandable as it is a big thing to be going through, and also for you too. 

It certainly is a whirlwind for sure, and sometimes can feel quite isolated with it all. Also  I find people don't know what to say to you (well I found this anyway, with friends and colleagues). This message board is a good place to talk things out.

Hope today is a more positive day for you both.

Take care xx

May i ask what chemo is your husband on please?

Hi it is venetoclax