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Polycythemia Vera: Just been diagnosed

Blood Cancers & Disorders | Last Active: Mar 20 8:31am | Replies (392)

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@csgreetings

So glad to read your story. My story will officially start next month. Thankfully it's only taken me about 6 weeks to get in to see a hematologist. I'm a bit nervous - and my spouse is less than supportive. I think that's the hardest thing for me is the feeling I'm fighting this alone. I think this for sure will show a person's strength or not. I've decided to be strong and meet this thing head on. Thanks for your inspiring note. I think my strength comes from this group. Thank you folks! Carol

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Replies to "So glad to read your story. My story will officially start next month. Thankfully it's only..."

Meeting this new diagnosis head on is what will give you a sense of power over it. You can be proactive and not feel like a victim to this change in your life. Like you said, PV has probably been coming on for a while and it’s not going to change overnight and take you by surprise. It doesn’t have to define who you are either. But it is with you now and you’ll learn to listen to your body and make some adaptations. I think you mentioned you’re 68? I’m 69 so really, when haven’t we had to continually roll with the punches and make compromises when we’re married or have families. 😅

It’s amazing how strong we can be!! When I was going through my leukemia odyssey one of the little affirmations that came my way was, “You never know how strong you can be until strong is the only option.” We don’t set out with any preconceived notions when we’re faced with a change in health. We don’t know how we’ll react until ‘it happens to us.’ Right? ☺️ So it’s up to us to pull up those bloomers (😅) and take on another challenge.

I am sorry your spouse is less than supportive. You can see you’ve found a new tribe and we’re all here for the long haul. Think of us as sitting around the kitchen table drinking coffee and snacking on cake. Oh which reminds me, I am so weak of willpower today!! I went shopping this morning for fresh veggies and fruit for dinner tonight. We’re having friends over (and we all eat so healthy!) so I wanted to make a veggie tray and a big fruit salad for dessert. Darn if the woman in the bakery wasn’t putting out my favorite peanut cake squares. Somehow the container landed in my cart and now, there’s a piece missing. I quickly stuck it in the freezer so no one notices the gap in the tray. 😂. So much for my 99%of the time eating healthy. Guess I was in the 1% today. 🙃

I hope by finding this site and others here that are going through the same sort of things will give you a better feeling about being alone. I identify with you there, most of my family is passed on already, just have a daughter and granddaughter who I don't like to burden, and Im sorta the matriarch so I try to keep a stiff upper chin. One of my favorite sayings is...nothing in this world can eat you up blood, bones, and all so don't be afraid of anything. We will manage it.
Wishing you a wonderful weekend.