Hello all,
My CNS e mailed me this morning, apologised for what had happened and said she will deal with it.
I guess that’s the last I will hear. Fingers crossed I don’t need to go for another one in the near future!
I bought material and elastic today to make face masks 🙂
Very best wishes to all.
Judy xx
Hi that is good you got a reply I do hope the nurse gets told What she did wrong and a good telling off and how upsetting it was for you it would be nice if you had a follow up Email but if you don’t maybe you could ask next time you have a appointment hope you have a good week and can put this out of your mind best wishes Poppy x
That's good Judy. You did the right thing. Take care xx😻😻
Well done Judy, I’m sure that’s has helped other patients, not to have the worry that you did...
I have fabric ready to make some masks too, when I get myself in the mood!
Regards Sandy xxx
Hey Judy... 
I wrote you previously a very long reply trying to show some empathy for what you had just experienced, and then promptly lost all my writing, and my Post... ? Cest la vie... 
It went something like this; that while it appears on the face of things people are largely being naive and ignorant, even a tad arrogant at times... They're simply being human, (fight or flight), in an era where many do not really comprehend what is happening in the world around them... , in my view...
We MPNers, on the other hand, well, in some ways, we're stronger and need to show more leadership, because many of us... have had to live with the precarious sword of Damocles dangling above our heads now for quite some time...
Nevertheless, I still recall quite vividly what an overwhelming realisation my diagnosis was for me... and I took some time to adjust to my 'Brave New World' too...
Of course, knowing all of this, doesn't really remove the fear and apprehensions of being vulnerable nor of falling victim to this incredibly sneaky virus, (CV–19).
I just try to create more space between myself, and those who are living in fear and ignorance. I try to shop at times when I believe that there are less people, (& especially the kids), out there, and I also try to go to places I know are less frequented, and all of that makes my short journeys a tad more bearable...
Judy, I, like you are considered vulnerable and at risk because of my MF. I am also my Octogenarian mother's full-time default carer, (because she doesn't need one at 84 yo and almost totally immobile – so she keeps telling me...). I do all our shopping, and whatever other tasks she requires of me because she can no longer be out there at all, because of her own condition.
I do wear a mask, Don't bother w/ gloves, I just scrub up before I leave, don my mask & sunnies, get everything I need as quickly as possible. When I return, I wipe everything down as I bring it into the house. Then I scrub up thoroughly, before packing everything away etc...
It might not be a perfect plan, but I just try to roll w/ it the best I can, & get past the bumpy moments and back home asap!
Stay calm, safe & well Judy...
Best wishes...
Steve
Great to hear from you Steve.
I should be shielding, but I’m not totally. I’m being extremely careful. I feel I need to walk to keep my blood pumping around my body. I’ve been to the garden centre and recycling centre, but, I go towards the end of the day when it’s less busy. I haven’t ventured to the supermarket yet! I have walked with each of my daughters (3) in turn, not together and I’ve seen the younger grandchildren.
If we are to live with this for 12 months or more we all have to be sensible. I know some aren’t and I try to keep away from those.
Anyway, we’re having some beautiful weather here, I’m off to isolate on a lovely pebble beach (Budleigh Salterton) today with my chair, book and water.
Take care Steve.
Judy xx
Sounds awesome Judy... and naturally I am most envious, says he who the colder seasons does not like much at all! 
Enjoy!
Best wishes
Steve
Hi Judy.
I’m so pleased that you received a quick response and hope this has given you some reassurance; however, I’m sure that this hasn’t removed the anxiety this distressing experience has caused you. What’s happened to you has kind of confirmed my guarded suspicions of trust in others.
Due to Covid-19, I’ve cancelled my blood test and haematology appointment for May. I discussed it with my CNS and she spoke with the Haematologist, who has agreed - only because my ET is stable🤞. My next appointment is early September. I’m so relieved that I have avoided a ‘hospital situation ‘giving myself a pat on the back. But, the really annoying thing is - I still have to pick up my hydrea prescription from the hospital, you just can’t win!🙄
Anyway, I’ve counted up all my tablets, and I think the numbers will just about get me through without picking up that prescription!!!🤷🏽♀️
Best wishes
Mary xx
My most recent supplies of chemotherapy drugs have been posted to me - your CNS might be able to arrange this for you too ...
Thanks, they won’t do this at my hospital. They won’t even fax the script to my local pharmacy two minutes walk away!
Hi Mary,
Yes, I do feel better. I’ve been on telephone consultations since last June anyway. I think that will continue for me and many others now.
Is there anyone that could pick up your prescription for you? Some places have a local charity that will get it for you. Best not to run short.
Keep well Mary.
Judy xx
Hi Judy I had a district nurse come to do my bloods two weeks back gowned up gloves mask goggles comes in can I use your bathroom to wash my hands opening doors and using sink and my towel!
Crazy
It’s mad isn’t it. I’m capable of looking after myself, disinfect etc. After they have been. It’s the older patients I feel sorry for who may not realise what they need to do.
I’ve been very impressed with the nurse that comes to do my bloods. The first one especially wouldn’t even touch my front door handle, she asked me to open the door when she was leaving.
Take care Phil
That’s really good with your nurse who comes out wish they was all like that
Enjoy the beach 👍
I'm glad you took the matter forward-and got a positive response. It was a unpleasant and potentially dangerous experience.
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