Newly diagnosed

Hi again SJWece8ab and well done navigating across to this corner of the Community.

As au said in your other post I don’t have Acute Myeloid Leukaemia (AML)  but although my Blood Cancer ‘type’ is different I most definitely appreciate the challenges of this 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.

You may find it helpful to call the Macmillan Support Line open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00. This service provides cancer information, practical information, emotional support, benefits/financial guidance or just a listening ear.

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 and the one I attend does have a few people with AML in it so worth checking.

Always around to help more or just to chat

Hello,

I was diagnosed with AML in December 2021, I was 49. It was terrifying for me as well. All the conversations you are about to have will be confusing and overwhelming, hopefully you will have someone with you but if like me, you don't, try not to panic. I know that's easier said than done. 

Try to listen as best you can (I know most of what I heard just flew through my head and I didn't take much in), ask questions and ask them to repeat things if you need them to. If you can't remember the questions at the time, write them down to ask the next time you speak to a doctor/nurse.

It's been a long journey, several rounds of chemo, a stem cell transplant and many ups and downs.3 years down the line I'm still in remission and doing well.

I hope this helps a little.

Hello, 

I was diagnosed in September 2024 at 42, I've been through 4 rounds of Chemo, currently in remission and being monitored...

It's very scary, overwhelming and isolating, especially if like me, your a mum of young children. 

My advise would be try to think positive, keep your mind busy, be as active as possible and remember that all of the side affects you will encounter are worth it. 

Be kind to yourself. 

Am here if you need someone to talk too. 

Thank you that’s really kind of you to offer support whilst battling with this yourself. 

take my lovely