Pretty Vacant

HI Antar  and welcome to this corner of the Community although I am sorry to hear about your diagnosis. I am Mike and I help out around our various Blood Cancer groups.

I don’t have Acute Myeloid Leukaemia (AML)  but I was diagnosed way back in 1999 with a rare, incurable but treatable type of NHL reaching Stage 4a in late 2013 so although my Blood Cancer ‘type’ is different I do appreciate the journey rather well.

Let’s look for group members to pick up on your post and get back to you. You can also click on the main ‘AML Group’ title and this will bring up all the group posts. Have a look at the posts and as always you can hit reply to any post and connect in with the wider group conversations.

My initial advice is take a few big breaths..... then some more. I have been in many Haematology wards over my years and the bed next to me were men in their mid to late 70s....even 80s who had AML, who went through treatments and are still here to this day..... I think the default setting when the word cancer comes along is to catastrophise...... get a list of questions together ready to ask them at your next appointment and take things from there.

For good information do check out Leukaemia Care UK who produce very good information and run various support platforms including their Buddy Scheme, they also have a Support Line on 08088 010 444

You may also want to check to see if you have a Maggie's Centre in your area as these folks are amazing and most centres do run monthly Heamatology Support Groups….. the one I attend does have a person with AML in it so worth checking.

Always around to help more or just to chat

Hi Antar 

sorry you’ve had this awful diagnosis. I was diagnosed out of the blue aged 61 5 years ago , it was such a shock. I was a very fit active person , though very ill when diagnosed. They didn’t start chemo for 3 weeks but here I am today talking about it. I am sure you will have chemo , which is tough but generally gets you into remission with aml. If this works possibly then a stem cell transplant which can be a cure. One of my neighbours had a transplant at the age of 73 so please don’t give up hope. In the early days of diagnosis it’s a lonely place. Feel free to message me if you like x

Mark

Thank you Mark. And Highlander too, but it's been a very lonely and despairing day, not least as I feel so ill and find it hard to eat. And most of all anxious as to whether they will offer chemo. I'm hopeful as I WAS fit, take no other meds. Have no bruising, swellings or bleeding. Organs all ok for now. But I am shattered and find even short walks and showering tiring. 

I'm blethering on, and I should maybe private message instead. But I wanted publicly to say that today you gave me tangible, believable hope. We both cried with a bit of relief from the fears that mount when you're lost in mostly negative reading. 

Thank you

HH

Talking helps and this is what this community is for….. we are total strangers thrown together in the hope that someone can bring light into our dark times…… keep taking on the community and let’s hope together that a way forward can be found.

Hi Antar - my dad was diagnosed aged 69 in November 2021. He was self-employed, still working and very physically fit. He too felt really poorly in those early days. Please keep your chin up and establish the facts of your case - they'll be working on your particular genetics of the AML and then they can really get to work on it. They have made so many advances in recent years and this continues, so I'm positive there will be a treatment plan involving chemo for you and then, like my dad, you may have a stem cell transplant.

I understand it is such a shock for you and all the family - of course you will lose weight as you've no appetite, but that will come back too. My dad was already skinny and didn't really have the weight to lose, but he's really 'piling the meat on' as my granddad would say now.

There are lots of forums like this one - I've connected with people via Facebook and the support is wonderful. I'm a big believer in the power of positive thinking and our mantra amidst all of the negative noise is "what if everything goes right?" 

Hope the docs goes as well as it can today. Make notes and ask questions - get a contact for any questions you may think of later. 

Jode.

A big day for me. Just find it hard to believe. At 1pm I'll be seeing a consultant who will either say, righto, we're  taking you on for chemo. We'll try and kill those cells.   Or he might easily say, sorry, you're not up to chemo. We'll ease you on you way.as best we can. My nerves are shredded 

We'll be thinking of you today. I know it's so nerve wracking, but try to remain positive and up for the task. I'm sure you will be offered treatment. We're 21 months into our journey and my dad is doing well. 

Thanks Jode, really helpful. All the best to your family.

Hh

I remember my first appointment all those years ago…… yes it’s scary leaving your future in a team of peoples hands but they will recommend the best way forward for you at this point in time. 

I am so happy for you and your father.Jode. So glad it's working out. If all I get is one year of remission, then I can put my things in order make my peace and that'll be enough! Though I'd love more. If I pull through this thing, I'm definitely contributing back into these circles of support!