Following my nightmare of no contact with a consultant for 10 months since diagnosis, I have now seen one! The wonderful Sister in the Chemo suite (where I receive my transfusions) was so aware of my distress that she arranged a meeting for me. Now this Consultant is not to blame for my neglect, she knew nothing about me but now I'm 'one of hers' and judging by the 90 minutes I spent with her, she is good! She has agreed to refer me to Claire Harrison and supports the idea of taking part in a trial. She came to the meeting with treatment ideas! She has arranged an ultrasound to get a precise idea of what's happening with my spleen. She has arranged another appointment in three weeks! I was already reeling when I received a reply to my email to Claire Harrison by return. So some people DO care. There is support. It's just that sometimes you have to look for it, fight for it and maybe have a bit of luck! I suppose the one thing others can take from my tale is that a week is sometimes a long time with MPNs. I also learnt that there is nothing better than the support of others who share the same journey. Thanks to you all.
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