I am almost two years post-transplant now (after a run in with Acute myeloid leukaemia (Acute myeloid leukaemia (AML))) and find myself in the group of patients with the ‘CRi’ label. Complete Remission with Incomplete blood count recovery, I find this a monumental source of anxiety, having such an abnormal blood count every time I go for reviews - pretty much everything is ‘outside the normal range’. Which always results in further investigations by the lab, before ascertaining that yes, I AM still in remission, apparently.
I feel sick to my stomach every time I go for appointments! And it seems that this is now a ‘new normal’ for me.
This was made much MUCh worse, when my GP carried out a full blood count test (I thought it was just for cholesterol!) and rang me the same day to insist I attend an urgent appointment with him. And then he pretty much told me I had relapsed…which I hadn’t. Leaving me inconsolable at the time. Needless to say, the specialist team in London were unimpressed by it all, asking why, oh why couldn’t the GP have called them first for advice?! Understandably, I now decline any requests to have blood tests at my GP surgery these days……but now I feel, the damage is already done in my psyche.
So, I am wondering if there are others on the forum, like me, who share this ‘special’ anxiety. And if there are, how do you cope??
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Hello there @Ledgell, fellow Myeloproliferative neoplasms (Myeloproliferative neoplasms (MPN)) survivor! While I live with a different diagnosis, of Polycythaemia vera (Polycythaemia vera (PV)), I really empathise with how you describe the ongoing testing as a ‘new normal’ and yet you are in remission! That’s excellent. It really heartens me to know that should my Polycythaemia vera (Polycythaemia vera (PV)) transform into Acute myeloid leukaemia (Acute myeloid leukaemia (AML)) there are treatments available to bring about remission.
But it doesn’t always feel like such an achievement, does it, when we still have to live with the thought of lifelong testing for these dratted illnesses. I can feel horribly anxious about living with a chronic form of illness and how it can be so utterly random as to whether it’s manageable or not. It always seems so out of my control!
So to deal with my anxiety I try to trick myself into just getting on with stuff. Polycythaemia vera (Polycythaemia vera (PV)) is incurable and remission isn’t possible yet, so although my daily chemotherapy is maintaining normal levels of blood cells and I live life pretty fully, I am faced with it every day. When the anxiety and/or depression about it all feels like too much then I rest and reflect on it and take it to therapy and talk it through with trusted loved ones. Getting out into nature really helps me too, as it can feel so awe-inspiring as to make my concerns seem much smaller.
I think you’re wise to not let your GP share their misunderstandings of your blood test results! Good thinking, taking them directly from your specialists. Hopefully that damage will fade somewhat, but well done for making that decision. It took me ages to change from my first haematologist who was rubbish and kept getting facts wrong about the Polycythaemia vera (Polycythaemia vera (PV)) he diagnosed me with!
While I wish I could have any kind of remission, I really do understand your special anxiety. Perhaps you could try reframing the anxiety as it is meant to be, a sort of protector and early alert system that lets you know of what’s making you feel vulnerable? I find facing my anxiety head-on makes it feel familiar over time and lesser which usually diminishes it, maybe that might help you too?
Anyway, I just wanted to thank you @Ledgell for sharing your good news. It gives me hope and I bet others around the forum living with these diagnoses too.
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