I imagine it was frustrating getting different answers from people @Ladicaz I’m so sorry you’ve got some clarity now!
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Hi I just thought I would share my journey with pv. It came to light after being sent to hospital with a small stroke. It turned out my Hc wat .63 I was also jak2 positive. I had about 10 about 8 venisections which bought my bloods to normal. This was 2 years ago 56. I’m. Currently on daily hydroxycardmide which I tolarate quite well. I have a six year old who keeps me busy and as I care for my wife I don’t go to work. I’m due a blood test soon as I hope this might clear up a symptom I have with feeling full after eating.
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Hi @Johnbuckland, I am so pleased you have found this forum. It sounds as if you have a lot on your plate and then 2 years ago you got your diagnosis.
I have found this forum is so supportive as I can say how it really is to be me, especially when sometimes my nearest and dearest cannot understand or it is not appropriate to share with them.
You also have the wonderful Blood Cancer UK support line if you feel you would like to speak to someone, the details are above.
Although you now have the support of this forum have you got any other support around you?
How have you coped emotionally?
Thanks for your reply, I don’t know why it took me so long to find this site, it’s really good to know there’s plenty of people out there with similar condition. I shall be looking around the site, getting up to date with the other posts. Like a lot of people I struggle with tiredness and lonleyness but like to stay positive.
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Hi John, my fatigue can be caused by emotional, physical or practical stress and since my diagnosis I do not deal with what personally stresses me well. In me it can also come on instantaneously or up to 48 hrs later.
As for loneliness in me I can feel lonely and sort of different, not cared for or not understood and in my own little bubble in a crowded room. That is why I so value the support on this forum.
I look forward to hearing more from you.
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Welcome @Johnbuckland to this forum and thanks for sharing with us. Thank you too @Erica for your openness about how life is for you. I have a different MPN to you John, but fatigue and pain are big issues for me. I have been rather upset by someone recently who keeps telling me how well she thinks I look! I find this distressing as blood cancer is a ‘hidden’ disease and has nothing to do with how we look. This person seems to think that because (in her opinion) I look okay, then there is nothing to worry about! Can you hear me screaming … ? Warm wishes to all. Willow
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Yes willow i get that too, I don’t make a big deal of having this mpn but it’s nice to be listened to especially by family. Now days I tend to keep quiet because people I know don’t want to hear.still nice to message you willow and a merry Christmas to you
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Hi there @Johnbuckland
To echo our other lovely forum members, wishing you a very warm welcome to the Online Community Forum 
Hope that you and your family doing okay and that you’re feeling okay about your upcoming blood test 
We’re so pleased that you found us! and thank you so much for sharing your personal experience, please do keep reaching out on here for support. And you’re also very welcome to have a look at our information pages on MPNs too: What are myeloproliferative neoplasms (MPN)? | Blood Cancer UK
Take care and once again- welcome!
Su
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Oh, @Willow and @Johnbuckland , we share the same the same pet hate of people telling me how well I look.
I am also screaming here !!!
It is to make them feel better and as you say that there is nothing to worry about.
I also find myself withdrawing into myself @Johnbuckland
Yes, hidden conditions are so difficult, I used to find that when I used to feel faint standing on public transport in the rush hour.
Take care and please keep posting I learn so much about myself from both of you.
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You sounds so caring and supportive I will make a note to myself to share my feelings on this lovely forum
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Thanks I’m going along ok,have you managed ok too? I have a blood test next week followed by a phonecall a few days after that. I had a good cycle ride 2 days ago and it’s today now that I feel tired luckily my daughter’s glued to the computer so I can have a lay down.
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Hi @Johnbuckland, I’m good thankyou. Have enjoyed the calmness of being indoors but have really missed family and friends too. Technology can be a life saver at times like this can’t it. I’m impressed you got out on your bike. Need to get mine out of the garage! Make the most of the quiet time to recharge. Hpefully you’ll get more opportunities like this. Are the rest of the family ok?
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My wife’s not to good, has a lot of problems, she’s of for a lie down , she does every afternoon about 3pm, stays there till the morning,it means I spend more time with my daughter, whose six and .really easy to manage now she’s growing up. It’s taken me a long time but I’m really starting to increase my fitness with the cycling I do. I don’t go far but there 2 hills I have to negotiate.
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Its lovely that you have that special relationship with your daughter. They definitely get easier to manage as they get older. However, I’m not sure we will be saying that when they reach the teenage years! I’m also gald you are making time to look after youself. It must be a real challenge at times, especially if you are not feeling great.
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Hi @Johnbuckland, I am sorry to hear that your wife is not so good, it must be difficult with your challenges too and trying to get that balance if you both do not feel well.
It must be good to spend so much time with your daughter.
@Nichola75 my son is 47 yrs old and I still worry about him and want the best for him, the worries and challenges just change. I think children are always a drain financially. !!!
I am impressed with your cycling up and down your local hills you must let us know how you get on in the new year.
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Yes @Erica. I can’t
Imagine a day when I’m not worrying about them. I’m saving those pennies too!
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Hi folks, just had a chat with my cns nurse who tell me yesterday’s bloods were a bit scew wif. Platelets at 88 and red up, enough for another venisection. She did say I should go in and pick up a blood form go to the path lab and do the test again, she will then call me. It’s been nice sharing my story so wish me well for tomorrow.
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Hi @Johnbuckland, thanks everso for the update, I wonder if you are anxious about the scew wif bloods. I know I immediately feel anxious.
Yes, I always think it is worth getting a second set of bloods.
I wish you well for tomorrow and please let us know how you get on, I’ll be thinking about you. Take care and stay safe.
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Thanks, I do feel a little anxious now I know I won’t need to set my alarm tomorrow, as I sleep lighter with more things on my mind. Thanks for you kind words and I hope all is good with managing your condition.
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