MPN Voice

I need your view

I have had an MPN for 25 years come June 2019. I want to have a party to celebrate but am I behaving in bad taste. Max a Million told me I would set a record for MPN survival when i first met him. I can't believe i have got this far having had PV, Then MF then CML. Is this inappropriate for someone who dealt with fatal illnesses in my working life or just an expression of love that I have survived to share my life with my wife of nearly 34 years.

This Spring I will organise a walk to disperse the ashes of a/my horse. I say that because Lacey taught me to ride, she was such an independent animal. Anyone who had dealings with her will be invited including the very young man who had the decency to let my daughters say goodbye on their own the night before she was going to be put to sleep . I taught my daughters to gallop on her because she would have never deliberately hurt them.

She broke my leg when she threw me because a branch brushed her back end racing up a field then the following day looked me up and down like this was nothing to do with me. Acceptable as I had rode her back to her stable and jumped off onto concrete then drove home till my leg exploded.

I adored that horse who was a riding school animal on half hire and could never have let her be cremated with a mix of other animals like rubbish but I have to now dispose? of her in the right way.

Scattering her ashes in spring when everything is starting to regrow is the closest I can come to imagining giving her molecules resurrection.

Is celebrating 25 years appropriate? We went to Rome to celebrate our 25th wedding anniversary, totally conventional.

I think it is totally OK but my mind has doubts if I will be be insulting people I couldn't keep alive?

22 Replies
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Celebrate any moment of happiness and appreciation that comes from your heart. You are not gloating, you are thankful for the gift of being able to share your life with all you love. True meaning of life is appreciation and to celebrate it let's everyone around you experience it as well 🎊

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Congratulations! May you have many more happy years to come! You and all of us together.

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What an amazing effort good on you I would be celebrating

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You do it kid sounds grand and well worth celebrating, think we would all agree its a good thing! - and I understand your feelings too re your dear horse - our animals are treasured and a dignified goodbye is good.

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Totally appropriate - have a great party! One of the strange benefits (if I can call it that?) of having an MPN is that it can alter your outlook on life and make you appreciate each day more. Celebrate whenever you can I say! Your 25 years gives us newly diagnosed MPNers encouragement!

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Hi scodaguy,

Go for it! Any reason to celebrate is good. I totally understand your feelings as to your past life as a GP but you have come through so much yourself and should celebrate.

All good wishes

Judy x

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Whatever inflates your sense of happiness I say. Enjoy your day 👍

Mary x

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After what you've been through you definitely have a green light to do whatever makes you happy. Cannot believe all you've been through enjoy enjoy enjoy.......

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Go for it. You have every reason to celebrate.enjoy every minute. Karen

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I am a year behind you and I think it is a great idea to celebrate. Not only do you get a morale boost and enjoyment from your celebrations but all on this forum will get a boost just knowing that such things are possible. Have a great time and post some pictures of the event so we can all celebrate with you. Best wishes, Jan

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Hi , good on you . Great idea. Go for it. Quite right to celebrate life which is what you are doing, and celebrating the life of your dear horse who meant so much to you and your family is wonderful....wish we could all come!!!

You have spent your working life doing what you could to help people.

Be joyful have a wonderful celebration.

Best wishes Sandy X

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Any excuse for a party! 🎉🎉. So maybe, if you have doubts, don’t put MPN on the invite! But why not celebrate life and love? And you can always make a speech and tell everyone the things you are celebrating. Have a wonderful time. 🥂

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Go for it! We should appreciate each day and celebrate life, living it to the full.

Could I ask how you are and what treatment you are on now? My husband had PV for 28 years. It progressed to MF about three and a half years ago and he commenced Ruxolitinib about six months ago. I worry about progression to CML. I know it’s only a possibility but I would prefer to be as informed as possible just in case,

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If you want to you should!

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Absolutely celebrate. You have been throw so much. Congratulations!

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Hi Skodaguy

Go for it! What you have achieved is worth a celebration and it is a measure of the gratitude you obviously feel. I can’t see it being in bad taste - you are celebrating life with all those you care about.

I hope you find a beautiful spot for Lacey’s ashes - I can totally understand your feelings about her as I have a horse myself and consider her almost a soul mate - we clicked the minute I saw her over 10 years ago. I am forever grateful I had the chance to buy her and give her a home for life. Our bond is amazing and she is a different animal now. Gone is the fear to be replaced by such a sweet nature you would have thought she was a different horse.

All the best to you and I hope you have the merriest, happy party 🎉

Gill x

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I think you should celebtate. It also gives others hope for a future.

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I think you deserve to celebrate after all you have been through. Kindest regards Aime xx😺😺

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I will raise a glass in Malta tomorrow we fly if weather is kind.

Relaxing at our bed and breakfast in knutsford

Hurrah for tomorrow.

Yes to the party we all could celebrate with you on the net?

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Definitely celebrate x enjoy your party with loved ones

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Skodaguy 😎 congratulations for surviving 25 yrs and thanks for giving me hope that I may do the same, so enjoy your party.

People have death parties now before they die, so don't feel bad or your acting in bad taste. Celebrate and have fun.

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HI Skodaguy……………..I've come a bit late to the comments - but go for it, celebrate. I read a post of yours quite a while ago where you talked of focusing on what we can do, not what we can't, and I still remember those words. Are you still on rux? I was really pleased to see your post and hear how you are doing.

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