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I feel alone - newly diagnosed with polycythemia vera

ransari
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Hi,

I can't sleep tonight. I am newly diagnosed with polycythemia Vera, a rare blood cancer. I am 45 years old and can't believe why this would happen to me when I am out of work too.

Although I have started treatment which is not bad so far but I have started feeling worthless.

I have great supportive partner and 2 lovely kids but I feel alone. I have only told my partner and one of my siblings. I fear to tell people. How will they take it.

Has someone gone through same feelings? Please share your experience if possible.

Thank you for your replies in advance.

RA

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    Hi Ransari, 

    I'm sorry you are feeling this way, but you are not alone, we are here for you. I found it to be easier to deal with my cancer after I just let it out. I started sending emails, explaining what I was going through. It was therapeutic and people were understanding and very kind to me. This is not your fault and nothing to be ashamed of, certainly. You are not worthless! Put your story out there and see who you can help by comparing experiences. 

    Feel free to reach out anytime and keep us posted on your progress.

    Laura xx

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    Hi

    My partner was diagnosed with polycythemia vera last week ans chose to tell his sisters and our adult children. He was absolutely exhausted by the end of it!

    Everyone is different , but on thing that might help is giving people the link to the mpnvoice website so they can find out info themselves without you having to repeat loads of details over and over again , which you may find stressful.

    ccssjj

    x

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    I was diagnosed with PV thirteen years ago and besides venesections every three months my life has not changed one bit.I'm now 47 with a very physical job and fit as a flea. My consultant said I will die with it not from it and my lifespan will remain the same.

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    Hi ransari

    My older brother was diagnosed with this 2 weeks ago. He has started on the weekly injections. He has told most of his mates and family. He is 63. As he has said it's not changed who he is. 

    What makes you think people will feel different about you. It is up to you to decide who to tell. But I have found that after being diagnosed with breast cancer before Christmas friends and family are very supportive.

    Take care

    Litchielou x

     

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