Polycythemia Vera

So glad you managed to speak to your clinical nurse face to face! It can make such a different can’t it, actually meeting someone properly and chatting things through. How are you feeling about the hydroxyurea? There’s a bit of general info on this page of MPN Voice in case it’s helpful at any point https://www.mpnvoice.org.uk/about-mpns/treatments/hydroxycarbamide.aspx
If you ever need a hand looking for virtual support groups or anything do feel free to let me know!

You mention that you keep playing in your mind whether to be telling more people. This is totally understandable and you’re definitely not alone in not knowing quite how to navigate this part - it must be so difficult to know who to tell what. There was actually a conversation around this not too long ago on here, feel free to take a look/share your throughts on there! When do you tell someone that you have blood cancer? I know you got given a copy of the MPN booklet by your nurse, but if you want any other copies posted to you so that you can give them to other people to help understand your condition, just let me know. We’ve also got info on our website too - https://bloodcancer.org.uk/understanding-blood-cancer/polycythaemia-vera-pv/polycythaemia-vera/.

I’m so sorry to hear you’ve had a tough few days. Do you know if the psychotherapist will be back soon, and if he is doing video consultations, I know it’s still not quite the same as face to face. It’s not surprising you’re unsure how you feel both mentally and physically @Rammie18 . It’s still early days, as you say, so just take your time and look after yourself and remember we’re all here for you, both on this forum, and on the support line too.

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