Hi everyone, just looking for some support, or shared experiences reference my Mum's experience, we are now 15 weeks past diagnosis of AML (which was a complete shock) she was relatively fit and healthy for her age (80 years old) 3 rounds of chemo completed which were exceptionally tough on her and I would say the last 13 weeks have been terrible in and out of hospital 3 times fitting infection after infection, she is currently in hospital (4 weeks tomorrow) they have told her there will be no more chemo as the body simply cant take it, which If I'm honest would be in agreement with, exceptionally tired, weak, eating nothing and confirmed that she now has complete bone marrow failure, she is currently getting blood transfusions if not every other day, every three days, with platelets infusions also and suffering from low potassium levels, they have told her that even these blood transfusions are getting pointless now I believe at this stage she is now transfusion dependent - we are working with the Palliative care team to get her home as it is her wish to die at home, hopefully we will get her home next week. I'm struggling with getting clear answers reference 'how long' have we got, the Palliative care nurse was so lovely and explained that when at home no transfusions will take place which I completely understand and again if honest I think would be a relief to everyone including my mum as she has made it very clear she is ready to pass, I asked her how long would mum live but she wouldn't commit, from what I read (I know they say don't read google) but I need answers somewhere I'm reckoning we as a family will be lucky to see a week with mum at home without transfusions - has anyone similar experiences they can share? The Consultant and indeed mum's key worker nurse I find very poor in communicating anything with me, I have requested on two occasion to meet directly with the consultant / key worker to get some defined timelines, but they simply are ignoring me. Not that it matters now, the main priority now is to get mum home and comfortable, I would just like to know potentially how long so we as a family can prepare.
many thanks Clare
Hi Clare Jackrussell and I am so sorry to read about how things have progressed with your mum. This is a challenging time you all are entering. Talking with others who have experience in this part of the journey can help a lot.
I am not aware that there have been many in the group lately posting about the same general challenges but let’s see who is looking in.
The wider Macmillan Community does have a few general groups focusing on the practical and emotional challenges you may experience as you support your mum and the family so do consider our Carers only and Supporting someone with incurable cancer support groups where you will connect with others navigating the exact same support challenges.
It’s natural to worry about what is to come so you might find this information from Macmillan helpful.
Do also remember that the Macmillan Support Line is open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00. This service provides practical information, emotional support, benefits/financial guidance or just a listening ear. We also have our Ask an Expert section but do allow a few working days for a reply.
Sending you a supportive ((hug))
