Hello - what a week, head spinning and where to start?

Hi all,

In the nicest way I am sorry to see you all here.

Last weekend I had some significant pain in my chest, as quick as it came it went away however my left arm felt a bit odd for a few days.

So after some nagging from she who must be obeyed I was sent to A&E by my local GP.

Their is a big family history for heart disease on both side of my parents so whenever there has been chest pain this has been the go to route.

I was examined for a Stroke, ECG and blood taken for what looks like a full set of tests.

I was told to wait and a doctor would see me later in day.

I was not at all ready for what was to come ( I guess none of us really are ) I could see the results coming through on the NHS app.

I thought to myself green must be good but red cant be and they said out of range?

I was called into see the doctor thinking we were going to talk about a possible cardiac episode and then a consultant entered the room.

Started to talk about my blood tests and told me all the signs are their for Leukaemia.

More blood was taken for further testing, the rest of the night is a blur, I came home told my wife and 2 boys.

Had a call the next day from a doctor from haematology who feels at the present time the initial diagnoses is chronic myeloid leukaemia.

I am booked in for an ultrasound next week and a face to face by the end of the month when a diagnose will be confirmed and treatment started.

I am aware there are many " Flavours " of leukaemia and I am trying my best not to google it.

I am bouncing from ok to breaking down trying to wrap my head around it so far.

Sorry if you still reading this I am just rambling on just trying to make sense of it all, I guess I am lucky that it was spotted now as I am 45 years old from what i understand not common for my age but I don't know.

I just hope i can get some answers over the next few appointments.

But how do you react to the news? I feel cheated, angry but also happy its me and not my family as odd as that sounds.

I get asked am I ok and I say yes but I'm not but I don't want to be that guy if you know what i mean......

Thanks for reading,

I wish you all a relaxing weekend.

D

  • Hi DM4047, I'm sorry to hear what you are going through at the moment. Most people will agree that the early stages,  when you are going through tests and waiting for results, is the worst time. My situation is different to yours, so I'm not much help to you really. Just thought I'd reply to bump your post back to the top of first page, so it might be seen by someone who can be of help to you. I wish you well moving forward. Xx

  • Thank you Pippin24,

    I do appreciate you saying hi and sending your best wishes.

    Darrell.

  • Hi DM4047

    So sorry your going through this .. I felt exactly the same ( remember your not on your own) 

    when I attended my appointments I always took a list of questions sometimes we can get caught up in the moment then when we’re home we start to think! Wish I would have asked this and that etc.. also I always took a member of my family along for support I strongly suggest you to do the same if your in the position to do so 

    Wishing you well 

    Debra 

  • My partner was about 45 when he was first diagnosed with cancer. Melanoma, not leukemia but it's never news we're designed to process. Especially when you've got two kids. I'd tell you to find someone you trust to "be that guy" with because everyone needs an outlet. My partner bottles it up and then really struggles when he's reminded of his condition, especially as there's no easy answers about it. I mean, when you're between scans and it's just symptoms and side effects it just becomes part of living but then you have to face whether it's getting better or not and waits to find out after the scans/blood tests it gets difficult to process again. I guess leukaemia is faster to monitor as it's largely blood tests(?) I imagine it'll be a bit of a different journey but it's all really unfair. I hope you get effective treatment fast and you tolerate it really well x

  • Hi Debra,

    I hope your well.

    Thanks for taking the time to send me a message.

    It's very appreciated.

    Great idea on the list, after each call I have more questions than answers.

    Lucky both mine and my wife's work have been accommodating, supportive and flexible so we can beat balance these early days.

    Darrell.

  • Offline in reply to Lyns21

    Hi Lyns21,

    Thanks for reaching out.

    Yup it's definitely unfair all around, sorry to hear of your partner's diagnosis too.

    Living life moving forward is probably my biggest question at the moment, what does it look like? Is it limiting?

    I know all treatments are different with their own side effects etc, I thought the new normal was life after COVID not this.

    Yes I assume ( fingers crossed) it's easier to track as long as it stays in the blood from what I have read, so far I have read on the NHS webpage it may regress on its own or it's managed for life ? 

    However I am no expert in this and only reading the NHS and this website for info I have no wish to start randomly googling it.

    Take care,

    Darrell.