Hi everybody !! Here I am again ,been locked out the site ,since update .missing you all ..lots of news ,been busy ,at hospital appointments

Hi everybody !! Here I am again ,been locked out the site ,since update .missing you all ..lots of news ,been busy ,at hospital appointments

I'm going into addenbrooks for surgery on Monday 14 th ,as my hiatus hernia ,has become strangled ,so I'm getting it all straightened out ..Iv been on porridge and soup (home made) for weeks ..as I can't digest any real food ,so the nutri bullet was a god send !!....mind you ,my blood results have been excellent ,I must say !

I'm still taking the ruxolitinib ..6 a day ..feeling o,k, .the proffesor has asked me to keep taking it while I under go surgery so they can monitor me ! I'm taken off the magic trial now ,it was to be 3 years. August ,,but I have developed scarring on my bone marrow ,so Iv moved on from PV..to MPN ...but I don't notice any difference really..sticking to my very healthy eating ,brocolli and green vegs every day ,filtered water or juice ..no red meat or processed food ,,off to Crufts dog show tomorrow with my 2 giants ,,see you soon !! Love. Twinkly. Xxxxxxxx

23 Replies

  • Good Luck Twinkly forCrufts and op.x

  • Good luck Twinkly .

  • Hi Twinkly,

    Good to see you back!!

    Saw an article in the paper about Crufts and thought to myself ' surely Twinkly is going to be back on line for Crufts season' - I was right ☺. Have a nice time.

    Any news on Jedireject ?

    Bye for now


  • Hi Twinkly, good luck with the surgery, will say a prayer for you! Love your picture, very cute!


  • Hi twinkly, good luck with your surgery and I hope you and your 2 big boys do well at Crufts.

    Much love to you and Bob, I'll be thinking of you. Come back soon.

    Judy xxx

  • Hi Twinkly, many prayers coming your for a speedy recovery! I love the picture of you and the Puppy it least it looks like a puppy? What kind of bred is that sooo cute. Mickey

  • Hi Twinkly

    Glad to see you Back. Must say despite it all you look fab! Good luck for Monday and for a quick recovery. Lizxx

  • Lovely to see you back Twinkly you have been missed. I hope all goes well next week for your operation. And that Crufts does you proud with your beautiful dogs.


  • All the best with your operation Twinkly. ❤

  • Good luck and best wishes for your surgery on Monday, Have a wonderful time at Crufts, The puppy in the photo is so adorable! xx

  • Very best of luck at Crufts so exciting for you. Wishing you a swift recovery after the op hope all goes well for you. Lots going on for you but you sure look really well!!!!

  • Hope all goes well on Monday and you make a quick recovery. Enjoy crufts. Sorry to hear about your transformation but good to hear that your blood results are good

    Karen xx

  • Enjoy Crufts and good luck with the op. Mel x

  • Hi buddy mine! Slow down! Look after yourself for a change........I might appear on your doorstep one day and chain you in a chair.


  • Good luck Twinkly and take care. 😘😘

  • Good to hear from you Twinkly! All the best at the hospital and at Crufts, I've been watching it on tv - I'll look out for you!

    Lizzie XX

  • All the best Twinks all your hard work with good eating etc will assist you with a good recovery. And love your dear doggie enjoy Crufts too !

  • Thank you all for your kind replys ,,,been to crufts today ,,our puppy sisters were first and second in the puppy class ,,so very pleased ! I'm so very tired ,,rest tomorrow then into addenbrooks on Monday morning at 7 o'clock ...I'll be in touch ..love twinkly

  • Good luck Twinkly. Hope all goes well.

    Lots of love Tash xxx

  • Good luck twinkly hope opp goes ok x I will thinking of u x Chrissie xx

  • Good luck, you should do great. I just had complex abdominal reconstruction for a large incisional hernia the end of January. Different but similar in someways. Be sure to follow your docs orders and don't overdo things. It takes a little longer to heal at our young ages. I know you will be happy being able to eat again. I lost 20 lbs in 6 weeks from "drinking" my meals. Be gradual getting back to your old diet. katie

  • Thank you for your advice Katie ,,I'm terrified of surgery but now I can't breath very well so I know it's time ,,this site is just a god send !! We do so support each other in times of need ,,I hope one day those really dedicated doctors and scientists will find the cure for us ,,I feel great strides are being made on our behalf ,,Iv been on a trial drug for two and a half years and I'm so confident ,it will eventually be on general use for you all to try ..I do hope so ..it's made my life so much better ,,you should remember those words if you are offered the chance to try a new medication !!

    Be strong and positive my lovelies !! Twinkly xxxxx

  • Hope all went well hun did you mean you changed from pv to mf rather than mpn hun x

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