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MPN Voice
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Waiting for the call

I will call you in two weeks

or maybe make that three

Oh did I say I was on holiday?

and my weekly hours you will agree

are less than a full week

- not so good for you but great for me.

My call will make a difference

to your life do be assured

Your results will be discussed

and your treatment then secured

at a meeting next Wednesday

but that’s my day off for sure.

So let’s just wait a few more days - like five or maybe six

then maybe I will call you and throw your life into the mix!

After all it’s simply my routine

it doesn’t matter much

Your nervous waiting for the call,

No big deal as such!

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Thinking of you X

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So true! Love And E hugs Aime xx😻

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Change line 3 to "or it might be three" and ditch the rest and you've got a pretty good 5/7/5 syllable haiku.

Spotted one earlier in a local watering hole:

"Christmas is coming

Bookings now being taken

Please ask at the bar"

Sweet or what!

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You sum it up perfectly and it would be funny if it wasn’t so serious. Look after yourself. Margo x

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I like your poem it sums up the wonderful nhs that we all rely on

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Hi John. I have nothing but praise for the NHS. Just not too happy at the moment 😊

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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

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In my limited experience of the nhs i find the haematology dept difficult.

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So So true😂

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Have you always been prone to understatement???

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?

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Great poem so true best wishes Poppy

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Hi Lesley,

Reading between the lines things aren’t too good for you at the moment, expressed through your poem.

Thinking of you and sending love and best wishes your way.

Mary x

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Love it

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Love the Poem Sand-Dancer

Hope you feel better soon

Garry

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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

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Sorry to hear that hope that you have your answer soon and that the result is positive. Am feeling ok at the moment myself thanks x

Garry

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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

Carol

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Hi Carol. Apparently my bloods showed ‘teardrop’ cells this time.

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Hope you hear soon, every sympathy Aime xx😻😻

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I think we may have the same haeme......

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Hiya PenelopeMK. Which hospital are you at? Lesley x

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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.

Best wishes going forwards.

Ian

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thinking of you my friend and sending lots of hugs and kisses. Maz x x

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Waiting is so stressful Lesley.

Thinking if you.

Have you tried emailing either your CNS if you have one or your consultants secretary?

Either way I hope you hear soon and it's the best news you hope for. Xx

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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 😊.

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Best of luck Lesley and I hope you can see a more caring and informative specialist very soon xx

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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

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Hi Marilyn. Was it a message I missed? I will meet up 😊

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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

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Hi

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.

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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

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Hi. Where do you live Marilyn? I live in South Shields.

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Hi Sand Dancer in Darlington, so not too far away. .xx

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Brilliant. We are in Portugal at the moment but it would be lovely to meet up when we’re back home 😊

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Hope you are enjoying good weather,Oh to get away for a while.Yes do get in touch. Take care Marilyn x

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Thank you for your reply. I live in Leyland, near Preston Lancs so not really your neck of the woods but hopefully somebody's. xxx

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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

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Happy to meet up with other members cheers ivy

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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 .

It seems to work 😥

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