My dad was diagnosed with AML type 6 in April this year. And now this thing rules our life's.
We have now reached the 6 month mark , and dad is yet again back in hospital with another infection. Dad is 63 but could only have palliative chemo, and that was stopped 2 months ago due to not being of any help. He now no longer produces any white blood cell, and is just recovering from a rare skin condition called sweet syndrome.
We spend time with dad every day he has 2 grandchildren 8 and 11 who even though they know grampy is very poorly with cancer and wont get better , he still will ( As i suppose i keep that wish too)
His wish at present is to continue to receive blood and platelets , Every thing at the moment is so confusing, we have a bag at my mums containing end of life medication , midazalam haloperidol etc......which the hospital provided when he was last discharged , along with the words we know the time is near!!
I suppose im writing this to hear about other people who have had experiences of parents dying from this evil thing.
Im just a daughter who is scared about the next couple of weeks xx
FormerMember
I apologise if you get a couple of posts from me in reply to this, but my computer has managed to delete my lengthy replies about half a dozen times, but i am determined you will hopefully get something from me at some point!! I have never replied to a post on this website, but your story reminds me so much of where our family were just 3 months ago. I know from my experiences, that knowing that someone else knew just how i was feeling made me feel not so alone. I don't want to make you feel sad by my story, but this is a daughter who like you adored her dad, and is coming through the other side.
My dad was our world, he was a big strong man, who adored my mum, me and and my sister and especially his 3 grandchildren, aged 7,7 and 11. When he was diagnosed with bowel and liver cancer in may, we didn't believe them when they said positively, "he could still have a couple of years ahead of him". A couple of years was nothing in my book, so we set about making dad better, and we really, really believed we could. We couldn't, and dad died 9 weeks after he was diagnosed, but my dad knew what we had tried to do for him with time, love and patience and he told us how proud he was of what we had done.
Regarding your children, I will just say that they are a lot tougher than you realise they are.Only you know your children and you will make the right choices.You won't know that they are right at the time, but your mother's instinct will guide you! Ours just knew that grandad wasn't going to get better, but i think they thought he would just remain feeling poorly and being at home. I don't think that telling them the enevitable earlier would have been any better for my children, they probably wouldn't have carried on as normal around him, which he loved in the weeks before.
If I were to give you any advice, I would say firstly, use the support of the macmillan hospice at home team. Secondly, to spend as much time as possible chatting about everything and anything to your dad. Don't worry about the disruption to your day to day life, because what is important is to know that you are there for him. I worried that my children would be forever scarred that we were always at my parents house, our routine was non existent and life was generally upside down. But they understand that you do that for people you love, and i think they have brought a lot of comfort knowing they were part of this, not kept away and 'sheltered' as such.
You will be ok and you will find strength that you never knew you had.I hope that there may be a shred of comfort for you in this post.
I'm so sorry to hear about your dad. It's completely understandable that you're feeling scared. I'm glad you've found this site, as many of our members do find that it helps to share things with others who are going through similar experiences.
I see that you've already joined the AML group - if you post in there you'll get responses from others with experience of AML. You might also be interested in joining and posting in our Being a Relative group, which is a really good place to get support from people who know what it's like to have a loved one with cancer.
It must be really hard to discuss this with your children. We have some information on our website about talking to children about cancer, which you might find helpful.
I'm so sorry, you're in such an awful place. We too had dad discharged with his 'end of life' meds and similar words, 'it will be quick'. Nothing prepares you for that. it is very scary. i found the fear of what will happen and when was much greater than anything I'd experienced. I will tell you though you will feel some peace after that awful moment.
How is he in himself? Is he eating/talking etc.? Is he awake a lot? If you read the end of life section on here it is screamingly accurate. Do you have a district nurse or macmillan nurse? They will tell you when he is getting near, but to be honest, you will probably know. Looking back I could see dad entered his end of life phase on Christmas Eve, there were things happening that I didn't realise at the time were his body preparing to die. Dad was home for 5 days after he came back from hospital before he passed away. It was an infection, I'm glad as he didn't want to be unconsious with us all around his bedside for hours/days waiting. He was talking and relatively normal (apart from not being able to walk) so we were able to chat and drink tea together. We had a lot of really good conversations in those last few days.
You realise how important your parents are in your life, how much you love them, more than ever before. So many things in your head change when they are so vulnerable.
Please use this time to talk to him, hold his hand, tell him you love him and let him know that you will be ok. This time is so precious and you'll relive these days for the rest of your life, make every second count.
