Hi,
Thankyou for allowing me to join this group. My dad was diagnosed on Christmas Day that he had incurable acute myloid leukaemia. It is a rare form in that it is surrounding his kidney and not in his bones. He has additional medical issues a lump in his pituitary gland which is not being treated as he is too frail. He has finally come home after being in isolation for two weeks in which he has deteriorated mentally and physically. He is not eating. He was told of the diagnosis but did not understand. He was told yesterday and is devastated.
We have faced inconsistencies in his treatment and support (down to COVID) which is so frustrating but that is an argument for another day.
We have been told he will receive palliative care. No one will say how long he has except the care support manager, who told my mum that she would receive support for 12 weeks. She asked what would happen after this and he informed her people usually did not need the 12 weeks!
I am scared he has given up and just feel so useless…..
Sarah
Hi Sarah Sarahj11 and welcome to this corner of the Community but sorry to hear about your dad and his diagnosis.
I don’t have AML but a rare incurable NHL but my condition is stable at the moment. I just do t have any experience that can help you but let’s see if any group members who have first hand experience to reply to your post.
When it comes to the practical challenges of supporting someone on a cancer journey like this you may benefit from joining our general supportive Carers only and Supporting someone with incurable cancer groups where you will connect with others supporting family and friends during these challenging times.
The Macmillan Support Line is open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00 or via Webchat and Email too. This service provides cancer information, emotional support, benefits/financial guidance or just a listening ear. You may also find our Ask an Expert section helpful but do allow a few working days for a reply.
Always around if you need further help in navigating the community.
All the very best ((hugs))
