Hello, so I was on here not so long ago talking about maybe having polycythemia Vera… I’ve recently had a phone call to say my jak2 and other tests came back negative and all clear but they said they are sure I’ve got secondary polycythemia ? So if everything’s ok with the bloods why are they saying I’ve got this?? Also they want to repeat all bloods to, and see the haematologist again in 2 months now for another follow up and more bloods when there to? So feel like I’m basically a blood bank at the moment lol… still not sure what’s happening the woman on the phone call didn’t say much just that they suspect I’ve got the secondary polycythemia… they ain’t discharging me from haematologist for at least 1-2 years she said??? Is that normal… are they not telling me everything over the phone? I just feel so stuck and my mental health isn’t the best, they know on file that I suffer with health anxiety so will they not tell me over the phone? Sorry for long assay… thank you for reading xx
Hello @MissB I am so glad that you have posted again, but I am so sorry that you have had to.
Firstly personally I have found that the person that rings me with information from the hospital only knows the message that they have to give and nothing else.
Yes, I often feel like a pin cushion and blood bank too.
I am going to tell you my thoughts, for what they are worth as I am certainly not a medical person, is that they are being tested and reviewed for perhaps 1-2 yrs to see
how you get on.
Perhaps before your next appointment you might write down all the questions you want to ask and make sure you ask them all and perhaps be ‘pleasantly assertive and persistent’.
It is very normal for many of us to have regular tests and appointments to see the progression, or not, of our blood cancers, it is commonly called ‘watch and wait’ or ‘active monitoring’.
Hopefully you will know where you are and what is happening to help you.
Please do keep posting on here and if you would like to talk to someone the Blood Cancer UK support line is on 0808 2080 888
Be kind and look after yourself.
Thanks for replying Erica! It’s lovely to see you again and yes it was a woman I think maybe the drs receptionist or someone who works for him? They said they certain it’s secondary so not sure if it’s classes as a blood disorder or anything with it being secondary! But I don’t know much, I’m waiting for a letter in the post with blood form to have at GP before my next appointment at hospital and they said they will do bloods again and I remember her asking if I’ve ever done vane section before? Not sure what that is and when I said that she said oh you’ve never had one then If you don’t know what it is … she didn’t say much to be honest but hopefully when next go hospital I’ll see my actual haematologist doctor and he can explain everything to me!
Just scared a little because I feel like they know more than they say and with not discharging me has freaked me out a little but I’m trying to stay off Google this time! Hope you’re well xx
Hello @MissB. I am sorry you have the uncertainty and understandable anxiety around your diagnosis. That is very hard. It sounds like you were being asked about venesection where some blood is taken, like a reverse blood transfusion, via a cannula in your arm. This is done sometimes if your red blood cell numbers are high. I have never had one myself but there are others on this forum who have. Thinking of you. Warm wishes Willow x