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

Hi Johnty

Thank you so much for your kind words.  I am pleased that you are doing well on your treatment journey.  I absolutely detest this horrible disease that just ruins lives.  It is just so cruel and unnecessary.  I am going through a rollercoaster of emotions at the moment and am just so angry, sad and finding it difficult to find hope.  I rang the hospital this morning and they are unable to rouse dad and so are very concerned.  They are taking him for a scan and putting a tube down to help with his breathing.  Until his scan results come back we feel helpless once again as we don't know what is going on.  

Good morning Sonia from a rather wet and wild Inverness.

We have been away for a few days so could not put up any links so I thought I would now.

We do also have various Forums that are specifically for people just like yourself who are supporting someone on a cancer journey - the folks on these forums are from various cancer backgrounds but are all dealing with the same issues.

It would be worth having a look through the Carers Forum and Friends and Family Forum and if you think that their experiences can help, join the forums and start a discussion in the normal way.

The issues your dad is having, for sum, can be normal. Yes it sound like a rather offhand comment, but this happens all the time. From my experience, at times had no idea what was going on and even now, over 3 years on I still hear stories from Fiona about what happened.

I will always say the people looking on have a much harder time that the person in the bed. Hope is always around, we sometimes lose it but actually when we stop and take a breathe Hope can start to creep back in.

As I have said and will continue to say - you have no control over the medical side of this.... that is where we trust the medical team. The main thing you/we can do is fight the noise between the ears. If we can control this battle then you are doing the main thing available to you to help.

My Respiratory consultant (I have asbestosis) is a very good friend so at our 6 monthly appointments we spend more time chatting then talking about my condition. He is totally convinced that a positive outlook and atmosphere adds a good 20% to the effectiveness of the treatment journey - hard I know but from our experience, that is a big yes from us.

((HUGS)) 

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Just to add to the reply from Johnty there is a real need to look after yourself as you can't keep up running yourself down.

Do you have a Maggie's Centre or a Macmillan Support Groups at the hospital or near you as you would find these places a great help.

The carers need as much care as the one in the bed.

Hi Thehighlander

Unfortunately my wonderful dad lost his short 6 day battle with leukaemia last night.  It's taken all my strength to compose this message but I wanted to say thank you so much for all your kind words, support and advice at the time I really needed it.  Yesterday morning the medical team were unable to rouse my dad and they were concerned so took him for a head scan.  They found a massive bleed on the brain and he was bleeding from all the tubes in his arms too as the chemo had thinned his blood so much.  They were thinking of taking him to theatre to try drain the bleed and would have had to move him to another hospital to do this. I told them under no circumstances did I want them to do this as dad would not have wanted it.  They then found a second bleed on the brain and said he would possibly have brain damage.  I remember dad saying if he ever ended up like that we were to put him out of his misery.  I am truly truly broken but I now know he is at peace.  I could not have seen him go through the gruelling treatment that lay ahead for however long it would have taken,  He was a proud man and absolutely was broken at the fact he found himself in that situation.  None of us got chance to get our heads around the fact he had this horrible disease and certainly did not think we only had 6 days left with him.

Thank you for all your support, it means so much to me that in my time of desperate need there were people to rally round with words and acts of kindness.  I will still stay on here to keep in touch with you all as you were all my lifeline.

Thank you again from the bottom of my heart.

Sonia x

Oh Sonia, I am sorry to hear this news and please accept a true heart felt ((hug))

The unpredictability of blood cancers like Leukaemia can indeed turn out this way but as you say, your dad is at peace and in no more pain. The weeks and months ahead will bring challenges but during these times remembering the happy moments will always help to lighten the load.

We do have our Bereaved Family Forum where folks on the same path as your walking help each other out and its a good place to unload with folks who understand.

You may also find our various Macmillan Support Line Services on 0808 808 00 00 helpful as you can talk to a friendly person that can help or just listen.

We are always around to listen and help out.

((hugs)) xx

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Dear Sonia

so so sorry to hear this sad news, you have however put him first by following his wishes, may he be at peace, may you and your family find peace, God bless. Sending love, and virtual hug.

Thank you for your lovely words.  I haven't felt strong enough to reply until today.  I found out yesterday not only did he die of leukaemia and a massive haemorrhage, he also had a horrible chest infection and had a stroke.  I know I made the right decision in not letting the medical team operate.  it is very likely he would have had brain damage and he would have hated living every second of his life if that were the case. Thank you so much for all your support

Hi Johnty

Thank you so much.  I am proud of myself that I respected my dad's wishes.  I found out yesterday that not only did the leukaemia and massive brain haemorrhage kill him but he also had a chest infection and had had a stroke. I miss him so desperately but if he were to have survived he would not have been the dad I knew and would have hated every second of a life he couldn;t live properly.  Thank you for all your support and kind words, it has meant the world just how people you don't know can be such a tremendous lifeline in times of need x