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MPN Voice
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Life limiting

I have not replied to much lately, but do read with interest and not always sure what to say anymore, my best friend died this week following a 5 year battle with melanoma, his outlook was positive to the end, and I have been very humbled by his attitude, I have found myself feeling great full that my condition is only life limiting and not life threatening.

I feel as if I now own my MPN and am in control mentally and physically, largely down to the posts, replies and support you all give, so thank you to everyone.

Good luck and have fun.


7 Replies

I'm so sorry to hear about your friend how very sad for you. You sound very positive about your own illness and that's great. Yes life has to be lived to the best of all our abilities and I feel we all live in the hope that a miracle cure could be found.

Keep well.



Commiserations on the loss of your friend. It sounds to me like, in your friends positivity you have gained strength. What a great gift.

Thoughts are with you.

Mary x


Losing someone does tend to put things in perspective. We all moan at times but really we are the "lucky" ones.

Best wishes


1 like

So sorry about losing your friend...years back, I too lost a very close friend from melanoma and remember the brave fight she put up and sure yours was the same. Devastating for you and all those close to her.

Re MPNs, (have ET Jak +) I am taking Turmeric, Vit C and Silica and responding well, while giving the chemo drugs a rest for the time being. Cannot recommend strongly enough walking and good diet too. Very best wishes and again, my sympathy.... it is incredibly hard. Tinkerbell13


I am so sorry to hear about your friend, something like this certainly puts things into perspective, we don't let our MPN control us, we are in charge of it and we are getting on with our lives and enjoying every day to the full. Maz

1 like

So sorry to hear about your friend but so impressed how you have turned their strength into positivity for yourself. I agree with others that your attitude makes a difference to the way you deal with your disease and hearing about others who are worse off makes us all thank our lucky stars!

Take care and stay strong. Love Aime xx😺😺


The loss of a best friend-----agonizing, and the hole it leaves in one's life-----so pleased you have gained strength through the experience. Mourning is important, but to come out the other side changed for the better is a gift from God. Love and peace to you, and many happy years to come.


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