Hi KGSG and a warm welcome to this corner of the Community although I am always sorry to see folks joining us and so sorry to hear about your family member.
I am Mike and I help out around our various Blood Cancer groups. I don’t have AML but I was diagnosed way back in 1999 with a rare, incurable but treatable type of Non Hodgkin’s Lymphoma Stage 4a so although my Blood Cancer ‘type’ is different I do appreciate the challenges of this journey.
This can all be very confusing and it can be difficult to understand this journey…… as for not needing blood transfusion, this is always good as this says that the persons bonemarrow is doing it’s job.
It sounds like your family members condition has unfortunately developed to the point that it’s only palliative care that is available.
I am not aware of anyone in the group presently in the same position but when it comes to this point in caring for someone you may find joining and posting in few of our general support groups helpful so do look at our Family and friends and Supporting someone with incurable cancer groups where you will connect with others navigating the same challenges.
Macmillan have many support services so do check out the Macmillan Support Line is open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00. These services provide cancer information, 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.
Talking to people face to face can be very helpful so do check to see if you have any Local Macmillan Support in your area, do also check for a local Maggie's Centre as these folks are amazing and aim to give support to all the family.
Please do get back to me if you need further help.
((hugs))
Hi KGSG, I replied to a post you put up earlier but it looks like you may have deleted it.
How can we help?
Hi again, I do understand this.
This is why we all use Avatars and it’s up to you as to the information you put out…… as long as you don’t make direct references to names, where you live, name of hospitals etc it’s very hard for anyone to pick up and connect the dots……. but the community is still an open forum and anyone can look in without joining.
I will say that there are a lot of people in the UK living with AML and also we have folks drop in from around the world
But at the moment I am not aware of any group member who is supporting a family member who is at ‘this’ point in their journey.
This is such a hard time and your original post did sound like things had moved to palliative care…… so in some respects the challenges has moved on from AML and is now end of life care….. forgive me if I am wrong.
When it comes to the practical and emotional challenges of supporting someone you may want to ‘LOOK’ and ‘SERCH’ our general
Supporting someone with incurable cancer
groups where you will see posits from others navigating the same challenges.
Macmillan have many support services so do check out the Macmillan Support Line is open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00. These services are confidential and provide cancer information, practical information, emotional support or just a listening ear……also via Webchat and Email too.
We also have our Ask an Expert section but do allow a few working days for a reply….. but these post are in open forum.
Talking to people face to face ‘confidently’ can be very helpful so do check to see if you have any Local Macmillan Support in your area, do also check for a local Maggie's Centre as these folks are amazing and aim to give support to all the family.
Please do get back to me if you need further help.
((hugs))
