When I had a bad result ,at my last clinic appointment .I left the Majic trial .so sad like leaving my family .But good news !!

When I had a bad result ,at my last clinic appointment .I left the Majic trial .so sad like leaving my family .But good news !!

Because my results of my B,M ,test confirmed now I have progressed on to MPN.. From the PV ..I was diagnosed with originally ..It's a big shock ,leaves you feeling sad and empty inside , what can we do?? So here I go again on another new path ..twinkly x

26 Replies

  • Hello Twinkly, so sorry to read your recent diagnosis, it is a shock for you I know but with all your positive views on life I am sure you will cope with all that is thrown at you. Be sure that you have lots of follower rooting for you. none of us are alone because we all support each other, best wishes June.x

  • Hello Twinkly my friend , , ,now just remind me what exactly was the good news ? A new pair of shoes or the fact that you live and breathe the air and lead an active life. . . or both maybe. . I can only echo what June says about your spirit and love for life, , I'm the same. You've come so far with your pv so don't give up and keep winning the battles. .

    My wife loves that piece of feminine wisdom you posted, , I can see this costing me the price of a pair. . Keep well Twinkly. Love JR - your not so wayward son. .

    PS I Have been teetotal for over a week ! Aargh

  • Well done JR! The first week is the hardest! x

  • Yes malachy but to be honest it so far hasn't been as hard on me as I was expecting , I still pop down club and watch my mate sink 4or5. . I have been buying different types of fruit juice ,as long as I have something to drink I'm OK. Our water supply is infected with Cryptosporidium which is a bit of a nuisance as I refuse to buy bottled water when I can turn tap on for Glass of corporation pop but all our water must be boiled for now. . . Best wishes to you my friend JR

  • I'm so pleased you are drying out ..I know from past experience giving up a pleasure isn't easy ,but if only we could see the future my lovely ,,just around the next corner is that real joy you have been waiting for ,it's not till you get to these lavender years you can look back and dwell on those memories that make a silent smile cross your lips..this new window on the world ,for instance ! We would not be a new growing family if not for our maz and the mpn crew! ....... I'm about to have a summer house ( octagonal ) put up in my orchard ..so I can sit with my gorgeous new Russian puppy named Georgia ,,it's another new venture for me ..still taking the ruxolitinib ,so I'm feeling o.k. If that I'm growing round my middle bit !! Keep in touch ...J.R..I worry when you go silent ,up to mischief ,no doubt !! Pass by McDonald's ,on the other side ,,it's another victory ! Twinkly xxxx

  • WOW Twinkly you're not going to have much time to put your feet up in your octagonal shed LOL, , , You will be pleased to learn I'm drinking real fruit juices / smoothies gee I hadn't realised what I have been missing by downing those revolting pints of ale and lager all these years. . No signs of any health benefits just yet but over time I'm sure there will be. Good luck with the young pup xx

  • Your skin will be beautiful !!

  • Dear Twinkly, I am so sorry you have progressed. It must be scary but your positivity will definitely serve you well. We are all here to support you just like you do for everyone here. Take care and keep twinkling xxx

  • So sorry to hear your news Twinkly. It's a worrying time for you but as always your positivity shines through. Hope the progression is slow and you keep well.

    Karen x

    Ps Congratulations to JR on your abstinence! I feel for you. Do you have any nails left?

  • Hi Nickthedevil, , sorry just catching up!!! Thanks for your congrats it is a big step for me but you gotta help yourself too even though I left it late. . . I have been beer tasting for many many years but never spit it out. . . Sometimes I have left the club with my head tilted right back, , ,stargazing? No it was so I didn't spill any beer. . . But those days are behind me. . Best wishes to you Karen . JRx

  • Hi Twinkly, so sorry to hear that , but from the posts i have read from you, its great you have an on going positive attitude, it does help ! love the shoes ,cant wear heels that high anymore , but im always buying new shoes ,my friends say i collect them !! haha stay strong all the best Holly xx

  • I didn't know it could make you hallucinate, how horrible.

  • My dear you are loved so much ,

    I hope it lifts you through these difficult times , God bless you my twinkling friend,


  • I echo Phelpsy,keep your positive Twinkling self,thinking of you as we all are,you will cope,you are one of life's winners,things will be O K for you.Love and best wishes,Inca

  • Hi Twinkly, Sorry about your diagnosis. Keep positive, and keep twinkling, everybody on this site needs you!! X

  • Hello Twinkly. Sorry to hear your news. I wish you well. Keep twinkling. Mel x

  • I'm sorry to read your news but like the others I'm inspired by your attitude .

    Helen x

  • Keep twinkling, this is what we all fear, but as the rest have said its your attitude that fires you on, it is so unfair that we have been dealt one of these rare MPN's but we are stronger for it, and having such a wonderful back up with the voice, we are not alone.

  • Twinkly, all the very best to you. It is not a year yet since my bone marrow biopsy showed I had progressed to Mylofibrosis but the Rux has helped hugely. I remember well the hollow feeling I had at the time and on the odd occasion since, wondering what the future was going to present. However, apart from the anaemia being a bit of a problem and the breathlessness that brings, all is OK. Enjoy your summer house and do take time to rest as that is important. Thinking of you a lot.

    Best wishes

    Linda x

  • Thank you so much for your encouragement ..I'm. Taking milk of magnesia ,it helps me with the swelling ..feel like I swallowed a balloon ...xx

  • Hello Twinkly, I thought I had sent a note earlier but appears to have got lost in the ether so here are a few words to say, what a blow but glad the Rux still working. It is nearly a year since MF was my diagnosis and the Rux is suiting me apart from the anaemia which I can cope with so far.

    Know just what you mean about the spreading tummy - more to love I say. Keep your happy attitude as much as you can and do enjoy your new puppy and the summer house. I, like everyone, do have down moments but then I think about all of us together and know I am not alone.

    Best wishes


  • Sorry for your disappointment dear little Twinkly. Your positive outlook is amazing and a role model for us all. A summerhouse sounds an amazing idea and a project for you too to enjoy with your Russian companion. I am having a window seat done. A bit humbler than your project but something I've wanted ever since seeing one in a childhood fairy tale book. Its amazing the things we can do to cheer ourselves up and I agree with you about the shoes. Very best wishes to you.xx

  • I love window seats as well our daisy !! I hope you have a nice view even if it's your neighbours changing their minds !! Let me just up date you ,,this was a garden bench ,that grew x grew ,with visits to the local garden centre .now it's an octagonal small garden room .with a base foundation .still I know the dogs will love it !!! Twinkly xx

  • Hi Twinkly, I am behind with everything this week so only just read your post. Sorry to hear about your progression but like everyone else I have great faith in you and your positivity and approach to life and know it will carry you through. We are all behind you wishing you rooting for you and hear for you as you are always for us.

    So jealous reading about your new summer house and orchard. Make sure you take time to relax in it as soon as it is up. You deserve it. Liz xx

  • Sorry to hear your news Twinkly. Keep posting.

  • Hi guys was wondering if any of the people on our sit has had radiotherapy to shrink a large spleen as my hubby been on the wonder drug ruxolitinib for two years now and just about managing on the lowest dose his platelets dropping lower all the time if any one has benefited from this treatment would appreciate your comments .all the best to you all regards kisses

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