Lucy’s Leukemic Observations

I never Expected a Bone Marrow Transplant

Yes it’s me… now trying to blog so anyone interested can keep up with my nonsense as I rumble down this unexpected journey towards a bone marrow transplant. Who would have thought it back in January when I was skiing with Zig in Meribel, without a care in the world.

Anyway, the story so far has been a routine blood test for something totally unrelated showed up a low white blood cell count. After a few further tests my consultant thought it was Hairy Cell Leukaemia, mildly troubling but it could be managed. Soon after that, a bone marrow biopsy showed Myloedysplasia for which the treatment could have been watch and wait, or a bone marrow transplant. Because of the low white blood cell count they decided that a bone marrow transplant would be the way to go.

So – more tests, and they roped in my sister Jane to be checked for a match. By this time my leukemic cells were up to 30% which was a shocker – and they now declared I have Acute Myeloid Leukaemia!! Unbelievable, it’s a rare disease, only about 2,000 people a year are diagnosed with it in the UK and most of them are over 65. Had to be me didn’t it!!

Jane turned out to be a brilliant 100% match, which was a miracle as there was only a 1 in 4 chance of that, and the decision to go with the bone marrow transplant was spot on as now there was no real choice.

Now this is my blog, a little overview of what’s happening, when and where, and how I am feeling. Feel free to leave comments, or find me on Facebook

25 thoughts on “Lucy’s Leukemic Observations

  1. Hi Lucy Lou. Just letting you know that Im thinking of you. You have done a sterling job with this website! Very well done! x

    • My son was just diagnosed with AML.I will pass on your blog to him .. your story will bring comfort to all of us ❤️🙏🏻

  2. Hi Lucy, we lit a candle for you in a gorgeous tiny little Greek Church in Mykonos this morning – I’m not particularly religious but it can’t hurt? I sent a couple of photos via your email as I’m not sure how to post on this blog. Lots of love sweetheart. Val & Keith xxx

  3. Hi sweetie although not on face book I do follow this great blog of yours every day I think of you and how much I love my best friend you are incredible and strong and I can see through all the pictures and messages, you are very loved and have lots of support there’s no doubt you’ll come through the other side. Can’t wait to see big kiss and hugs xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

  4. Hi Lucy just reading your Blog Good Luck on that top up today always thinking of you so happy for you and the great news. Love you honey. Big kiss xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

    • My son was just diagnosed with AML.I will pass on your blog to him .. your story will bring comfort to all of us ❤️🙏🏻

  5. Hi lucy,
    I’m currently going through a bmt in Southampton, I love looking at your blog it gives me lots of hope! I am day +21 and hoping for home tomorrow! Touch wood everything’s gone okay. I am just struggling with the next stage of recovery, and the fear of everything. Xx

    • Hi, I dont come on here very much anymore as its now 8 years for me! But please dont panic, but it is a very weird and nerve racking experience leaving hospital as you are leaving your comfort blanket! but keep positive and when your taste buds are virtually nill, get some haribo sour snakes! forget a pill tablet, my medication covered the whole of our dining room table and that seats 10! the cyclosporin (spelt that wrong) is amazing, but as soon as you can come off it, you will feel better! The upside is it makes your hair grow (everywhere!) join me on my facebook and see where i am now! Your will of had the best treatment and i am forever grateful and am now fine, have had all my jabs! message me anytime, as people that havent gone through this do not understand xxxxx

  6. Hi Lucy just read u’r blog, I to had a blood test only done for something else, all because my GP thought I looked jaundice. And low and behold they diagnosed AML. I thought I new alot about AML but I didn’t no it was mainly over 65s who got AML. Sadly it isn’t true. I was only 21 wen diagnosed with AML in 97. I’ve been in remission for nearly 20 yrs now and just wanted to let u no u can beat this sucker. Sending u all the strength and luck in the world and if u eva want to talk u can find me on Facebook ☘☘☘☘☘

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