Been thinking of you Lesley and if you had your answers yet,you are so brave to make light of it all and a great poem! We are back to France tomorrow,I am shattered and a ghastly cold!!!Straight to hospital on my return for more tests......hope I keep as brave as you are.Sending my best wishes to you ,was great to meet you...xxx
I’m fine Garry. Had a change in my bloods at my appointment on 9th October and had BMB next day. Was told it could be MF and almost a month later am still waiting for clarification. Not a huge long time in the great scheme of things I know but I keep getting promises of phone calls with results that never materialise. Hence the poem of frustration 🤣. Hope you are good x
May I ask what those changes were as progression from pv to mf is something I have been wondering about due to my white cell count being in the high 20s to 30
Sorry to hear that you have been kept waiting for your results. It seems so wrong that people are kept in the dark at a time when they need reassurance, support and answers.
Unfortunately the system does not take into account or measure the stress caused by uncertainty and not knowing.
Hi Helen. I haven’t seen a consultant in 14 years. I see a specialist nurse every 16 weeks. My issue is he only works 2.5 days a week so getting my results is proving difficult. I have just this morning asked to be transferred to a department that specialises in MPN’s at another hospital. Wish me luck 😊.
Hi Sand Dancer, I also empathise with you, having to wait, all it does is cause anxiety, and send stress levels up, which does if only they would admit it , impact on physical health. I hope you have a response very soon. By the way I did put out a message to all Northern MPN'rs Re meeting up. As far as I can tell there has been no response, though I remain hopeful, if we do want to meet up then again I hope people get in touch. Take care. sending hugs xxMarilyn
Hi Sand Dancer, I did post a message, have seen it though not entirely sure I posted it correctly.Hopefully if people are aware we can meet up. Hope al is well. Hugs Marilyn xx
I may have missed your previous post re meeting up with people in the north. It sounds like a really good idea to me. I live in the north-west and would be interested.
Hi Fionnuaghla, thank you for your message. where in the North West are you?. I live in the North East, and had responded when people had spoken about meeting up, as there are no groups other than the patient forum. I believe most individuals in the North East will be from Durham, NewcastleTeesside, North Yorks
areas If people respond and want to then we can do anything and we can certainly arrange to meet. It was lovey hearing from you. Take Care.Hugs Marilyn xx
Hi Fionnuaghla, sorry you are so far from us, though maybe do able when the weather is good. I think if people reach out, and are happy to say what area they live in, then groups would come together and thats what should happen, everyone needs support, and the friendship of others, and who better to do this than people who already understand what it is like. There is strength in numbers.Keep well.xx
Well, yet another week is over and still nothing about the results of my BMB - taken on 9th October.
After my usual appointment my specialist nurse called me and informed me that I needed a BMB as my blood tests had shown teardrop cells and that probably meant my PV was changing to MF! WHAT???????
As my attempt at poetry said, my specialist nurse only works 2.5 days a week and appears to have no backup from the department he works in.
He told me that there would be a meeting this Wednesday and because he wouldn’t be at work that day, the Haematology consultant had agreed to call me with my results.
Oh yes?
In my opinion, the only way I can have my expectations met here is not to have any expectations at all .
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Sitting here in the waiting room..
Great article for “the itch”.
Hi I’m new to the forum - ET JAK 2 Negative - waiting on the results for a second BMB to exclude Pre - Fibrotic MF 
WAITING FOR MY 'GOLDEN TICKET'
