Hi, everyone. Can't say I'm happy to be here, exactly, but I'm glad this group exists.
My name's Sue. 65 and recently diagnosed with AML and the other one - Myelo Dysplastic Syndrome? It all happened so fast! One minute I was working in a school nursery, running around like a loony all day, fit as a fiddle. In June, I noticed I was getting tireder and my bones were aching. I just put it all down to being too old for a physically demanding job!
Then I got breathless and my heart rate seldom dropped below 136 (good old Fitbit!), So I called my GP. First blood test showed a few small irregularities, so was repeated the next week, by which time, the irregularities were a lot bigger. They sent me to A & E, as they didn't see how I was still working, or climbing the stairs up to my doctor's office with the blood levels shown. The blood test was correct. The Haematology Registrar was just as surprised. I put it down to being small, stubborn and determined, like an ageing Jack Russell!
I was kept in overnight, had 2 transfusions and then horribly painful bone marrow biopsies, which failed to provide enough marrow/blood for them to test adequately. Sweats and pain and awful weakness followed. After 4 more horrible bone marrow biopsies (including a rarer breastbone one), they finally got enough of a sample to diagnose a particularly nasty and fast acting combination of MDL and AML.
This all happened in July. In August, I had blood transfusions and platelets 2-3 times a week and completed my first cycle of chemo injections. My tummy swelled up, itched like fury and was so lumpy and bruised it looked like a Turner sunset painting! I got rashes everywhere. I'm on 26 meds a day, but it seems to be working! I'm still here and have just gone 9 days without needing a transfusion! Round 1 to me!
I have a long way to go, and I know there are likely to be hard times ahead, but the Haematology team at my local hospital have been wonderful and I know that I am in the best of hands. Angels, the lot of them! I would not be here without their dedication and unfailing care and kindness. With that and my stubborn refusal to give in, I hope to make it through. Not quite ready to go yet. Besides, I have every intention of claiming my state pension in February, after waiting an unexpected extra 6 years!
Love and very best wishes to you all.
Hi and welcome to the Community although always sorry to see folks joining us. I am Mike and I help out around our blood cancer groups.
I don’t have AML but was diagnosed way back in 1999 with a rare incurable but treatable type of skin Non Hodgkin’s Lymphoma Stage 4a and although my blood cancer ‘type’ is different I have experienced most types of treatments used but not necessarily the exact same drug mix.
A blood cancer diagnosis can be very challenging but talking with others who are walking the same type of cancer treatment journey will help you navigate this difficult time.
The New to Community is like the Community Reception area and as there are many cancer types and experiences so likewise the Community has many support groups but I see you have already joined our Acute myeloid leukaemia group as this will be a good place for you to connect with other folks who may be on the same cancer treatment pathway.
Navigating the community will depend on the device you are using. To go to the group just click on the green link above then introduce yourself by putting up a post by clicking on ‘New Thread’ or ‘New here, say hello’ then hit the box with the X on the top right (phones).
You could just copy and paste the text from this your first post and you can also join in with existing ‘Discussions’ by clicking on 'reply'.
I will keep an eye open for you in the AML group ((hugs))
