I missed you all .but been feeling a bit ucky!

I missed you all .but been feeling a bit ucky!

Been to the clinic ,because my spleen is uncomfortable ..it's making me sick at night ,Im getting tired and grumpy during the daytime ..iv been given high calorie drinks ..sadly taste like wallpaper paste ..those who invent these treats ,should try one or two !!Ill update you all on my slow progress !! Twinkly ..xxx

28 Replies

  • Swift recovery Twinkly,this site needs your cheerful posts!How true the one today.Warm wishes,x

  • Cheer up Twinkly, miss your upbeat support but now you need ours so get well soon. xx June

  • Busy making healthy soup ! Warm and tastey ..with carrots ,red onion ,potato,garlic,tomatoes ( 3 colours ,)trimmed 4 rashers of bacon ,stock cube ,seasoning .. Simmer and stir !! Hubble ,bubble ,,toil and trouble ,,soon drift away !!

  • That soup sounds yummy and I hope it helps to make you feel better .

    Strong women unite ! Xxx

  • So sorry you are feeling under the weather. Hope you are on the mend soon. That quote is spot on

  • Sorry pressed submit by mistake! It is very true, but sometimes even strong women have to get it off their chest. So glad we can do it on here. Take care Twinkly xx

  • Dearest Twinkly, I am very sorry to read that you are suffering with your spleen, , though mine was of mammoth proportion for a wee guy I was lucky down the years as it caused only discomfort (it has lost much volume after all the chemo but not so much in length) . . I hope very much that it settles down and allows you to get on with your busy life.

    I don't like the idea of a grumpy Twinkly, , keep your chin up. .

    Love your way , Chris xx

  • Hey there JR...iv just had a phone call from hospital ,I need to up my ruxolitinib ,,from 5 to 6 a day ,,hope it helps me ...how many did you take a day ,, Are you still taking them now ? I just made sultana muffins ,a special treat for my poor Bob ..he has put up with my grumpy moods for days ,,I tell him. "Your rewards will be in heaven ,for living with mad me "...sending you my love. Wayward son !! Twinkly. Xx

  • I'm no longer taking them. Had to taper dose down to zero in the prior to admission to Manc Royal. I was on 2 x 15 mg daily in the year or so I was taking them. I don't exactly know how all my treatment has affected my Jak2 status, I meant to ask and forgot. I've to go back tomorrow so will ask then. You seem to be on a very high dose.


  • Oh Twinkly, sorry to see you are not feeling to good, let's hope the soup does you a power of good, and that you will soon be back to your sparkling self. Love your quote, it is so true.

    Keep Twinkling.

    Jean x

  • Hi Twinkiy, I hope you feel better soon, very sorry you are not feeling well.


  • I hope you feel better soon Twinkly,

    I made soup tonight too with leftovers in the fridge - onion, leek and sweet potato.

    Love Judy x

  • Sorry to hear you have been feeling unwell Twinkly. Hope you will soon be back to full Twinkle.

    Sandy x

  • Lots of love coming your way Twinkly. I don't know why is soup so good for the soul. .. but it is!

    Grumpy Twinkly is quite a contradiction isn't it 😉

    Liz x

  • Hope you're soon back to your Twinkling best! X

  • Hope your feeling better soon Twinkly. I've had those drinks uhhhhh they taste horrid. Still, lets hope you are on the up and your extra Rux makes a difference. We are such a positive bunch on here supporting each other that we don't just see our glass half full, we are just glad we have a glass. xxxxx

  • Hello my lovely friend, sorry to hear that you are not your usual self, hope you feel better soon. Love to you and Bob x x x xx Maz

  • Hope you soon feel better - can you mix a spoonful of milk shake powder into the drink? - Nestle do Banana and Strawberry. Look forward to hearing from you again soon - I enjoy your positive statements. Take care, Sue x

  • Hope you feel like your ol self very soon Twinkly , sounds like you been going through it a bit , those high calorie drinks are not very tasty but im told its only the strawberry ones that taste the Nicest . keep your chin up and take it easy best wishes Holly x

  • Off to cancer unit today ,,(Wednesday ). 3 phone calls yesterday to check my progress today I get new medicine,to try to settle my burps and bloat ....metro cloperamide ..I was in pain all night again ..but I'm trying very hard to twinkle !!!

  • Good luck at the clinic today Twinkly, hope the new and extra meds return you to your normal twinkling self. Love Mel x

  • Do hope you feel better soon xxx

  • With a name like Twinkly, lovely other half and all your four footed friends, think grumpiness hasn't a chance of lasting....very best wishes and hope you are soon feeling much better and much more comfortable. Tinkerbell13

  • Hello Twinkly. I hope you will soon be feeling much more comfortable. Bye Gill

  • Keep sparkling and keep positive. I've been listening to The Secret CD's in my car over and over again.. every time I start thinking about something negative I put a positive spin back on it.. I have decided to use the power of the universe to heal.. so sending you lots of positivity as sometimes even the most positive of us need some extra :) xx

  • Thanking of our wonderful MPN

    Fairy godmother I'm so sad to hear your feeling poorly ,X

    Hope you soon feel better , 🌸🌷💐🌻 X

    Love Pam X

  • Lovely sunny bright ,chilly ,Thursday ..took the new meds last night ,and I wasn't sick ..lots of pipe work noises ..but at least I wasn't inspecting our bathroom floor ,all night !

    Thank you all for your concerns and your support ,,it's good to chat !! Starting to get back to twinklin. Xxxxxx

  • Pleased you are feeling a bit better and back to twinkling again xx

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