Good news!!: Just want to share with you all the... - MPN Voice

MPN Voice

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Good news!!

Nickthedevil profile image
34 Replies

Just want to share with you all the great result I had at my latest haematology appointment. My platelet unit was 356 - the best it's been in a long long time! I saw a different haematologist who asked if I would like to be transferred to the remote clinic, whereby I just go for a blood test and then the consultant looks at the results at the next clinic, but I don't have to be there! After waiting 3 hours for my appointment that day you can imagine my excitement at the prospect of not having to do it again in 3 months time! I have a number for the specialist clinical nurse, should I have any concerns, but otherwise I will only have to see the consultant if my counts change dramatically. I have heard of this type of clinic at other hospitals but didn't know that my hospital did it. If feels like I have been set free after 4 long years.

Hope you are all managing to keep well my friends. Happy Christmas to you all. Karen xx

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34 Replies
Helen1952 profile image
Helen1952

Love good news xx

mhos61 profile image
mhos61

That's great news, a lovely xmas present!

Mary x

Nickthedevil profile image
Nickthedevil in reply to mhos61

It certainly is x

lizzziep profile image
lizzziep

Good news on the blood counts and the clinic! I'm about to set off for my hospital appointment, I go early so I can find a parking space! Also so I'm not queuing too long at the phlebotomy department, then there's a wait until the lab have processed the sample and I get to see the specialist nurse for the result.

Nickthedevil profile image
Nickthedevil in reply to lizzziep

Good luck with your appointment, hope all goes well x

JediReject profile image
JediReject

Hey Hey !! Fantastic result Karen, , I feel a Gospel song coming on 🎶 O Happy Day , O Happy Day 🎵. That is a good do as like you I spent weeks over the years waiting to be seen for ten minutes with little or no change to speak of. Twas just a means to collecting next scrip. . A fast track or auto prescription with call back if owt untoward would of been great. xx

Nickthedevil profile image
Nickthedevil in reply to JediReject

Love that song! Yes I am thrilled with the new system. How's things with you? Hope you are on the up? Xx

Tinkerbell13 profile image
Tinkerbell13 in reply to JediReject

What a treat to hear from Chris....how are you a doin? Tinkerbell13

JediReject profile image
JediReject in reply to Tinkerbell13

Thanks. . I'm just about through virus and learning to walk again. appetite picking up once more . , gee this time last year I was in Manc Royal for nearly 8 weeks so looking forward to a homely Chrim, touch wood !!!! Doc said last week that a number of more robust patients have been admitted with the virus recently so I guess I've dodged a bullet. Onwards and upwards xx

Tinkerbell13 profile image
Tinkerbell13 in reply to JediReject

Sure will have made Christmas for many of us more special, hearing that you are doing as well as you are. And may you be home for good now! Been sympathising with your wife, as my husband had major stroke in October then returned to hospital with life threatening sepsis, so I have been doing 24 hour caring and worrying - guess a little like your splendid lady! All looking more positive now and especially thinking of you and wishing you really well, well, well, you very brave man....always so many fans out there praying for you. Including me. Very best regards, Tinkerbell13

Nickthedevil profile image
Nickthedevil in reply to Tinkerbell13

So sorry to hear about your husband, I hope things continue to improve for both of you x

Tinkerbell13 profile image
Tinkerbell13 in reply to Nickthedevil

That is so kind...thank you...xx

JediReject profile image
JediReject in reply to Tinkerbell13

Oh dear . . Very sorry to read your news there. pleased that things are on the up. It's very tough for those left to care for us alongside doing the day to day home keeping necessities. I know how tiring it is for my good lady. Fair play to you all as we would be lost without your unwavering care and attention.

THANK you for your best wishes and thinking of my situation when your own is difficult . . . I sincerely wish you a Merry Christmas and a better New Year to come. . Chris

Tinkerbell13 profile image
Tinkerbell13 in reply to JediReject

What a star you always are, and while you never cease to inspire, you never cease to bring a smile, too, as you just radiate something very, very special. Will certainly go on thinking about/praying for you and your good lady and your whole family and wishing you so much better health and a Christmas you feel well enough to enjoy. Thank you for such kind thoughts about us too. Very best wishes Tinkerbell13

JediReject profile image
JediReject in reply to Tinkerbell13

Tis my pleasure. . let's hope 2017 is a better year for all who have had a difficult 2016. . . going my lovely Sisters for Christmas day so trying to get mobile so don't have to rely on my wheelchair all day. looking forward to seeing my beautiful Niece and my dinner of course. . . Take care Tinkerbeĺl. Chris

Tinkerbell13 profile image
Tinkerbell13 in reply to JediReject

Sure just your being with them all will absolutely 'make' their Christmas. Enjoy every moment, before, during and afterwards, and will be specially thinking of you. Very best wishes (no need to reply, need save energy!), Tinkerbell13 But, possibly, we might see a lovely pic of you with your beautiful niece early in the New Year?!

JediReject profile image
JediReject in reply to Tinkerbell13

She steals the show she is a beautiful young woman who teaches Primary class. . . I will try get a couple pics. my other lovely Niece won't be there till Boxing Day unfortunately . . .

Tinkerbell13 profile image
Tinkerbell13 in reply to JediReject

Sure your beautiful nieces are totally inspired by their super brave, super fun uncle....have a lovely time and hope you can eat what you fancy, too. Tinkerbell13

Nickthedevil profile image
Nickthedevil in reply to JediReject

Really hope you keep dodging it, and nothing spoils your Christmas at home! Good to hear your appetite is returning, it's just the right time of year to over indulge. Hope you are up and running soon xx

Malaika profile image
Malaika

Excellent news. Happy Christmas.

Nickthedevil profile image
Nickthedevil in reply to Malaika

Thank you, same to you x

forwardocho profile image
forwardocho

Congratulations Karen, that's great news.

I have bloods every two months now. My platelets reached 363 four weeks ago, but in between that time, I felt very ill and knew something was amiss. On having another blood test, they shot up by 97, never have they gone up that much so now I'm at 460. I'm seeing Dracula on Friday as he wants to increase my chemo which I'm not happy about.

I'm pleased that you're feeling so well and you can enjoy your Christmas! Well done.

Angela x

Nickthedevil profile image
Nickthedevil in reply to forwardocho

Thanks Angela. I know how worrying it is when your count goes up, so I hope the new dose sorts it out for you. I had the same problem about 18 months ago and ended up going back to 2 weekly visits for a while, which was a pain, but gradually a higher dose brought the count back down. The tiredness is still a problem but I think we just have to accept and count our blessings. Good luck for Friday, let us know how it goes. Have a lovely Christmas. x

forwardocho profile image
forwardocho

Thank you Karen.

It doesn't help that I don't have the best relationship with my new consultant. Since being discharged from the cancer clinic in August, I was referred to a different consultant. My initial consultant was a lovely man who explained everything to me and answered any questions I had.

My current one is not so forthcoming. I feel my chemo dose is too high and I still suffer with side effects daily. He refuses to budge on the dose, even though I explain to him that some patients are on 1 aspirin even though they're platelets are in the 900's, he still won't budge. It's a never ending fight with him.

All that aside, wishing you and yours a very Merry Christmas and well done again on your results.

Angela x

in reply to forwardocho

Hi Angela what dose are you taking now , i feel slightly strange since Dr put my dosage up to 500 mg every day

forwardocho profile image
forwardocho in reply to

I'm on 3x 500mgs a day! Up until 4 weeks ago, I was on 4x 500mgs daily. I still feel its way too much as my levels were below normal range 4 weeks ago (and I was still taking 3 a day). Unfortunately, they increase by 97 2 weeks ago and currently now sit at 460 which is just over normal range. I have FBC tomorrow and I'm seeing Dracula on Friday.

I'm also on aspirin and 14mgs of Invabridamine for my heart palpitations.

Angela

Gosh Angela thats way higher than im taking ! Do you get upset tum at all ? oh i take a beta blocker i have palpations also and mitral valve issue i think when we have other health issue also ,they like to keep platelets low and blood thin Holly x

katiewalsh profile image
katiewalsh

CONGRATS! That's such great news and something to celebrate at Christmas! I'm really happy for you. Katie Walsh

Nickthedevil profile image
Nickthedevil in reply to katiewalsh

Thank you x

Nickthedevil profile image
Nickthedevil in reply to katiewalsh

Thanks Katie. Have a great Christmas x

Phelpsy profile image
Phelpsy

So pleased for you Karen ,

It's lovely to hear your good news ,

I'm sure this will make your Christmas even happier,

Merry christmas my friend xxxxxx

Love Pam 🎄🎉🎅🌲🍾

Nickthedevil profile image
Nickthedevil in reply to Phelpsy

Thank you Pam. Have a lovely Christmas with your gorgeous little grandson. Keep well xxx

Polly-PV profile image
Polly-PV

Fantastic news Karen! Merry Christmas to you and yours, much love Poll x

Nickthedevil profile image
Nickthedevil in reply to Polly-PV

Thank you Poll, and Merry Christmas to you and your family too. Hope you are well. Karen xx

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