Hello guys,
First of all I don’t have a diagnosis yet. So nothing changed.
But I am very certain that something is off.
Aside from leukopenia, occasional anemia (and borderline low RBC) and high MCV (also in the normal range again), I have basophilia (1.5% on one sheet, 3 % on another one from the same test like ???)
There has to be a reason for all of that! But so far I only have the suspected diagnosis that it’s immunological or autoimmune. Although nothing of that could ever be proved in tests.
Whenever I do my own research everything points to Myelodysplastic syndrome (MDS). Doctors don’t have an answer, but they don’t want to dig further.
I know that I am repeating myself. But the worry remains the same. My fear of not having much more time here and of the regret that a disease hasn’t been caught further impairs my life. I am afraid to make plans in the future because I think that the diagnosis might mess it all up. It’s been this way for 5 years now.
Sometimes I can distract myself but especially when I am happy the fear creeps in.
I have a new appointment in September. Hopefully this time I can manage to ask the right questions! Usually I ask a lot and seem so anxious that I feel like doctors want to comfort me.
Of course this also has a psychological component and my search for a therapist is not going to well. And I am not a doctor. But I feel like I’m not taken seriously.
My biggest fear is undetected Myelodysplastic syndrome (MDS) transforming into Acute myeloid leukaemia (AML). And I know, aside from leukemia being an awful disease in general, that being mixed race slims my chances of finding a bone marrow donor. I only have one full sibling, so that’s not optimal in regards of finding a match either.
Maybe it’s also something else but I am certain that it’s a hematological malignancy.
So far many tests (flow cytometry) have taken place except for a BMB. I am glad that I haven’t need one yet. The uncertainty remains.
I know that my posts are repetitive but I feel stuck. Whenever I read old reports the fear just creeps back in.
I am afraid to pray for clarity because a positive result for a disease would also be clarity - exact words!
I just hope for an answer that doesn’t mean my life will be cut short by the result.
I will try to be pleasantly assertive - yes, I read the replies 
although I tend to monologize here - in my next appointment.
I really love this forum. Usually googling anything related to blood cancer gives me fear but this forum feels just like a safe haven where I can unwind my thoughts. Still amazes me how this provides so much hope without making empty health-related promises.
I wish you all lots of love and strength. 
Kind regards, Sarah
Hi @SarahD1702 don’t worry about feeling repetitive, that is just where you are, living in limbo without a definitive diagnosis and it must feel horrible.
Diverting yourself is so much easier in theory than in practice and perhaps ‘Googling’ isn’t your best friend.
Be very kind to yourself and I also wish you lots of love and strength.
Hello again @SarahD1702, it’s great to hear you’re still being so proactive in your self-care and trying to get to the bottom of what feels wrong. Don’t ever worry about sharing stuff here, this is exactly the right place to offload about blood cancer anxietiess.
I’d say you’ve been brave to check so thoroughly and to persevere to get tested so often over a relatively short amount of time. I know when we’re younger a year can seem like it’s forever, and so I imagine 5 years of anxiety regarding your blood tests might feel pretty intense to tolerate!
As a non-medical person living with a blood cancer that is very rare with a very slight possibility of transforming into Myelodysplastic syndrome (MDS) or Acute myeloid leukaemia (AML), research I’ve read shows it’s just super unlikely that you have those blood cancers at such a young age. Myelodysplastic syndrome (MDS) and Acute myeloid leukaemia (AML) are incredibly rare and tend to develop much later in life, typically after showing up first as many different abnormalities in blood cell counts in other blood cancers like Myeloproliferative neoplasms (MPN). I’d say the likelihood is very low of you having both relatively normal blood cell numbers from years of blood tests and no other symptoms of blood cancers and yet have Myelodysplastic syndrome (MDS) or Acute myeloid leukaemia (AML).
You say you don’t want your life to be cut short by potential results of a blood cancer, but it seems that you’re waiting on tenterhooks for a diagnosis that may never come according to the various doctors and tests you’ve had. Surely this is taking up time anxiously living like you do have a blood cancer?! Speaking as someone who’s lived with anxiety since before diagnosis with a blood cancer, I’d say don’t worry your life away! You have youth and health in your favour. If I knew at your age what I know now and had your motivation for self-care I’d be kicking myself for not working through my sources of anxiety sooner! You certainly don’t want anxiety to continue on to becoming a panic disorder, not recommended!
While I’m an atheist, you say you’re afraid to pray for clarity. Avoidance of difficulties is to be expected, considering what you’ve said in previous posts about what you’ve gone through in recent years. I know it’s hard to hold in mind, but loss of a parent can really affect how we go through life and respond to stressors. So I’d say maybe it’s worth putting some of the energy you spend on a potential blood disorder into some therapy to figure out what is making you so anxious about this specific super rare blood cancer. Perhaps try again with BACP (think I shared a link before) to find a counsellor/therapist? Or seek some CBT via your GP, although the waits can be long so get on their list sooner rather than later.
I’d second @Erica by saying googling this stuff doesn’t seem to be helping, and I’d be remiss for not mentioning just how out of date a lot of the stuff algorithms of a search engine will churn up. If I trusted what it said about my Polycythaemia vera (PV) prognosis then I’d have planned my funeral already, when in reality I’m likely to die of old age.
Let us know how you get on and what you find that helps minimise your health anxieties. Perhaps give the Blood Cancer UK number a call on 0808 2080 888 and the lovely specialist folks there will be able to give more practical advice.
Hello again @SarahD1702, thought I’d add a link to this current data about prevalence and prognoses of different blood cancers. It’s weirdly reassuring for me to be able to see just how rare my diagnosis is and maybe you’ll find it helps too in regards to Myelodysplastic syndrome (MDS): HMRN - Factsheets
Hey guys,
I still turn to this forum for comfort because it is just so amazing!
I still don’t have a diagnosis yet but I have upcoming routine blood work in January and that combined with Christmas joy and stress makes my mind go crazy. What if the result is bad in January? I feel like it’s “wrong” to be joyful now because I might become severely disappointed. On the other hand I think my anxious thoughts distract me from the holiday stress and family conflict because it puts everything into relation. The blood work still messes with me and I take it seriously, but I see a pattern when this concern comes up. I feel like I’m going through life without a “ticket”/ "license (as a seemingly healthy person) and might get busted anytime soon (aka diagnosed) to employ a metaphor.
Okay, but enough about my situation since (luckily) nothing has changed that much since my last entry. How are you guys doing with the holidays? I think it’s equally stressful and joyful for most people who celebrate (hopefully a bit more joy than stress ) but especially regarding your personal situations. I am curious about your experiences and insights!
I wish you all the best health-wise and Personal-wise and I hope you’re all having a good time!
Best wishes from Sarah 
Hi @SarahD1702 oh, I also like a metaphor and perhaps the one thing you have gained from our forum is the personal insight you have gained into yourself and how you tick.
I reckon your thoughts and feelings being all over the place are very natural as you are still living with the uncertainty of not knowing.
Yes, I also get caught up with the stress of the holiday season, although I have no need to me.
Sainsburys delivered this morning and had no stuffing balls and I nearly burst into tears, ridiculous, how important is it.
Now this is so easy for me to say, and difficult for you to do, but try and divert your mind from your ‘not knowing’ and enjoy the moment. I have personally realised that the here and now is all we have and we might as well make the most of it.
You are doing so well and please do keep posting we will be around on here over the holiday period, very happy holidays to you xxxxxx