Thank you so much @ChrissyD, had a feeling you’d have great wisdom to share with @Hepzibah. Thanks too for that link to Leukaemia Care’s great Myelodysplastic syndrome ('MDS')/Myeloproliferative neoplasms ('MPN') info, that’s exactly what I was looking for! I’ll be sure to share it in future. I really appreciate you helping out Chrissy.
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Thanks @Duncan
I was a patient reviewer for that LC document so it was still lodged in my “helpful resources” brain! Hope it helps @Hepzibah 
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Thank you for your response, and the extra links to check out.
I have had a bone marrow biopsy, which is what first threw up the diagnosis of Systemic Mastocytosis. I was trying to read up and grasp what that was, again not much in laymen’s terms to be found, in fact not that much at all. A month or so later, another result came in, from a different lab specialist (I think), which changed the diagnosis from SM to Complex Myelodysplastic syndrome ('MDS')/Myeloproliferative neoplasms ('MPN'). My consultant implied at the time that this was a more positive result for me. Having met with them again yesterday, I’m feeling even more calm than before about the whole situation, although the curious part of me will always want to know more. I just need to take what I find in bite size pieces and digest them better.
In the meantime, I envision myself as a curio that has been moved from one oddity shelf to another! 
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Hello @Hepzibah
So glad to hear you are in a better place since your consultation yesterday. I found that time to absorb all the information definitely helps!
When I was diagnosed with rare Chronic myelomonocytic leukaemia ('Chronic myelomonocytic leukaemia ('CMML')'), I liked to tell people I was one in a million -probably a bit of an exaggeration (an extra zero needed) - but maybe, as you say, there is some consolation/street cred in being unusual?! 
Keep well and let us know how you’re getting on.
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I remember as a quite young girl seeing an oddly dressed lady. Grown up said she was ‘eccentric’. I looked the word up and decided that when I was an old lady I’d like to be eccentric too. Turns out I don’t think I’ve quite managed eccentric - yet - although my friends might disagree; but I have reached the dizzy heights of being rare oddity. I’ll have to settle for that! 
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Hi @Hepzibah, it’s good to hear the appointment went well, that you have a clearer diagnosis and and that you’re back on Watch and Wait, even if “complex” does remain the operative word!
It’s been a real pleasure watching this thread unfold - you’ve been so well supported by @Duncan , @ChrissyD, @Nichola75, and others, and I’d say you’ve settled into the community rather brilliantly for someone who only arrived last week. A curio with excellent taste in metaphors!
Do keep posting and, if you feel up to it, take a look around the rest of the forum as we have some great commmunity threads (like the Friday Forum Jukebox Club, which is running today).
Ceri - Blood Cancer UK Support Services
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Thanks. Folks have made me feel welcome, comfortable here, and been helpful.
I’m sure I will be reading the main site, and the forum, much more in the coming weeks and months, and no doubt asking further questions along the way. Who knows, I might be able eventually to answer someone else queries too at some point!
I’m going to give myself a Bank Holiday Weekend break from haematology stuff, and try to get away from the computer and out into the fresh air - if I can find a cool spot! No doubt I’ll be back to feeding my curiosity before long though.
Hope all here has a good weekend too.
Hepzibah.
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@Hepzibah Hello welcome to this amazing forum. I have found this app so useful for Information and support whilst we all go through various Blood Cancers. I have a different type of Blood Cancer . I hope you find the answers and support you need. Xx
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Thank you. It’s another learning curve in my health education. 
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I think that’s a good idea. Enjoy the break and do some nice things 
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Hi Hepzibah,
I just wanted to say I really understand the “complex” part of this. I have Essential Thrombocythaemia with pre-myelofibrosis and a few other complications, and sometimes the hardest part is trying to understand what everything means without letting it take over your whole head.
The learning curve can feel huge, especially when you’re on watch and wait. It can look quiet from the outside, but inside you’re often carrying appointments, blood results, questions, uncertainty, and all the “what does this mean?” thoughts.
I think your idea of taking a Bank Holiday break from haematology stuff was a really good one. Sometimes stepping away for a bit is part of managing it too.
I’ve actually been building a small tool called Path9 because I struggled with keeping letters, results, appointments and questions organised in one calm place. I won’t post links here unless it’s okay, but it came from exactly this kind of experience.
Wishing you well as you keep finding your feet with it all.
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Thank you for your comments.
Yes, getting used to the new vocabulary is sometimes more of a challenge than getting your head around the fact that you have a somewhat rare condition! When the condition isn’t really giving obvious signs and symptoms it’s even more confusing.
All that being said, I’m more than happy that I don’t have signs and symptoms, and whilst I’m prepared to learn as much as I can - in bite sized, plain English portions - I’m not going to get particularly stressed about it.
I’ve taken the stance that while I might have a ‘condition’, I’m not ill until they tell me I am!
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Thats exactly my approach too. No symptoms that I’maware of so far and its already 12 months since I was diagnosed.
I keep saying to people I’m not ill but will tell you and only let it affect my life when I do have symptoms. For now just a blood test and a phone call every 4 months
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