My Dad Has Been Diagnosed with AML & I Am So Scared & Confused

Hi  and welcome to this corner of the Online Community but so sorry to see why you have found us.

I am dropping in past from one of the other blood cancer forums (NHL) just to day hello.

Blood cancers like AML can at times be very hard to diagnose and once diagnosed treatment starts very quickly.

What you are describing with relation to him being connected with various tubes to machines is very familiar and brings back memories from a few years back.

All you can do is trust in your dad’s team. Try and get time with his dedicated Specialist Nurse as these are the best people to explain what is going on, why it’s being done and what his prognosis is.

You can not control the medical part of what is going on but you can turn down the noise in your head by understanding more about what is being done.

AML treatment can be very hard and yes his age can be an issue but at the same time I have talked with folks the same age as your dad and they got through it,

Lets look for some of the AML folks to pick up on your post.

((hugs))

Hi Thehighlander

Thank you so much for your kind words and advice.  I think you are right, I do need to sit down with my dad's team that are looking after him but at the same time I am scared to do so in case I hear something I don't want to hear.  I know I need to be armed with all the facts though so we know what we are facing.  I am glad I found this site as I feel I will have the support and understanding from people who have been through, or are going through,  the same.

Sonia x

Hi again Sonia and first a ((hug))

From our 20 years living with my blood cancer the best way forward is always the truth - sometimes it can be hard hitting, but you don’t want to get cought out.

December 2013 I was told I had 30ish months on the clock and get our affairs is order and the only way to stop this was a very successful treatment journey......... fast forward and I am now 40+ months past that date and treatment free and living life as if it’s my last.

You will always find a friendly person on the Community who understands.

(Edit) I see you have done your profile :) 

It would be really useful if you could put something into your profile as this does help others when replying to you or for those looking for support and information as they can read a bit about your journey so far.

Just click on your username and then select 'Edit Profile' under the 'Profile Settings'. If you're not sure what sort of thing to put just click on my username, Thehighlander to read my profile but my cancer journey was rather long

((hugs))

Hi Thehighlander

Thank you once again for your advice.  I'm quite upset this morning as Dad is not doing well.  Clinically he is stable but he is so down and fed up and has told the nurse he doesn't want to see any of his family as he doesn't want us to see him like that.  I told the nurse to tell him we are going anyway but it is just heart wrenching.  I can't imagine how he must be feeling but surely him not seeing anyone at all won't make him feel any better?  Did you go through times like this on your journey?  I am wondering what it is I can do or say to try perk his spirits up a bit as if he gives up hope then he's not going to fight to survive.

I am so glad you are doing well and treatment free, that is amazing.

Sonia x

Oh Sonia, I and a lot of folks on these forums understand what both your dad and the family are going through, 

What you can do? ..... is be available but also persistent as these emotions will come and go.

My long suffering wife Fiona and I made an agreement very early on to have permission to show ‘tough love’ during our ‘pity me parties’ so if I was down Fiona would challenge me and vice versa.

I had a total of over two months in semi isolation 4-5 hours away from home so it was just the two of us most of the time, so it was important for each of us to have our own space.

Dont take everything personal as his thinking will be effected by treatment - I actually used chemo brain as a good excuse not to talk with people and pretend to sleep.

A change of faces, some old friends unannounced (so he can’t turn them away) works well.

Fiona says, you are doing great and keep on keeping on - every day is a new day.

Mr and Mrs Highlander )(hugs))

Thank you so much again Thehighlander.  I think you are right about being persistent and that is why I have said we are going today whether he likes it or not and will keep going.  He's trying to stop his sister going tomorrow too (he's not seen her really for a long time but she wants to go see him).  he said he wants to talk to her but because of the oxygen mask he's having to wear, he won't be able to talk to her.  She has said she's going anyway and he can blumming well listen to her instead of talking!

Thank you to Fiona for her kind words.  Keep on keeping on - i like that and i suppose that's all you can do in times like this.

The support I have received from this forum even though I only joined a couple of days ago has been amazing and i can feel a little bit of positivity starting to emerge again. Thank you :-) 

Sonia

Many times i told friends and family not to visit. I felt so rotten, and i was in for so long, it just seemed like there were better wsys they could spend their time. I asked them to take my husband out to lunch instead, or take my kids to a movie.  Or just keep them company at home. So much more fun for everyone!

Hope is a funny thing. I think you can lay in bed for weeks at a time, expecting to die, and still have that little flame of hope quietly burning deep inside. Your dad wants to be with you, be outside again. Feel the warmth of the sun. For sure he wants those things but this shit is really hard. He's tired.

********

Hi, thank you so much for your kind words.  I am so happy to hear you're in remission, that is so great news.  How long were you in ICU for?  My dad has only been in there 5 days but it feels like a lifetime already.  He doesn't want to see us at the moment and told us to leave yesterday because he doesn't want us to see him like he is.  he cried so much and I have never seen him cry before like that so i got really upset and had to ask his nurse to go help him.  the consultant we spoke to yesterday said he is so not out of the woods yet and this next few weeks are going to be crucial.  the chemo has started to affect his kidneys and lungs and I am so scared this could be the end already.  Unbelievably, the consultant said the form of leukaemia my dad has only affects 30 people in 10,000.  That absolutely blew my mind,  I am vey very lost right now.

Sonia x

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