Hello Walburd - glad you have found us, as you say sorry it’s via your Polycythaemia vera (PV) and ET diagnosis. I can well understand your shock, it’s takes a time to get your head around a diagnosis and you start to fit pieces of a jigsaw together in hindsight of “odd” things that have been happening with you maybe for a few years that now all make sense and fit into the picture of MPNs. Yes do use the suggestions mentioned to Sue as there is a lot of support available and touching base with other MPNers helps so much and the online patient meetings can help too - I have noticed a lot of newly diagnosed patients of late, all feeling like you and having so many questions, and some of us “old timers” since diagnosis can help out and are very glad to do so! I think of you with your work situation, let us know how your discussions go. All the best
Hi @Walburd you sure are part of our club now.
I was 53 yrs old when I was diagnosed, not a day off sick in about 25 yrs, I don’t smoke and hardly drank. There was no family history.
It is OK to have a low day yesterday, I did and it was partly my fatigue and my week catching up with me. It is natural to have ‘why me’ thoughts sometimes too.
I am also far more emotional since diagnosis and can burst into tears at the least thing.
Learning to live with my diagnosis took a while, I re-assessed my life and who and what were important to me.
I think when I was first diagnosed it was all consuming to me, but over the last few years my life is definitely more than my diagnosis and I am not now on autopilot I choose what I want to do and with whom. I am far less materialistic, the best things in life are free.
The important things are to give yourself time, be kind to yourself, spoil yourself and keep posting.
Am feeling OK get tired alot but I am a busy person
Well I can’t say I’d never had a day off sick in the 30 odd years I worked and I did drink when I was a student but cooled down but luckily never smoked as my grandfather died of throat cancer and he was a keen smoker although he had been gassed in the Battle of the Somme too which can’t have done his throat any good! There doesn’t seem any reason you can point to why certain people develop these rare blood cancers,in my case Mycosis Fungoides,I often wonder about the cloud of fissile material which blew over here from Chernobyl but you could say if that’s behind it you’d expect more cases and as far as I know the incidence hasn’t increased.
It’s weird. I probably haven’t always been as healthy living as I could have, yet Myeloma isn’t really connnected with life style factors. My sister has always gone to the gym, ate healthily, exercised, drank moderately and never smoked but has ended up with both breast and lunch cancer.
Hi @Franko, going back a bit to when I was diagnosed I was told diet wouldn’t affect my Chronic lymphocytic leukaemia (CLL).
However I think times have changed so much and a healthy diet and exercise are a good philosophy and make me feel better. However I still have the odd treat.
But as you say life is not fair as you demonstrate with your beloved sister.
Look after yourself
Hi… my name is dhana, im positive jak2 2 mths ago but don’t know the type yet, as I started having thrombus in my portal vein since feb this year first the doctors were looking for cirrhosis but can find only border sign of cirrhosis (almost but not yet there) in feb the blockage in my portal vein is still minor but in sept cause full total blockage(every month i was doing endoscopy and ligation), also done my bone marrow test, i can send u the result and im hoping that you or anyone can give some inputs or feedback regardingthe disease🙏🏻
Hi @Dan0921 a great big welcome and firstly I am useless on medical bits.
However I was very struck how isolated you must have felt this yea and I have found that can feel a very anxious, scary place to be.
Someone might be able to help you more but we are here to support you and if you would like to talk to someone the Blood Cancer Support line is there for you.
Have you got any support from family and friends?
Please keep posting as I would like to hear more about you and look after yourself.
Thanks for replying, well my emotions still up and down like a roller coaster, snap easily, especially when i wake up in the morning, i felt body ache constantly for the past few months and so on. Family and friends are aware but they don’t know how to respond, except seek for medical attention, my doctors told me that i just need to wait and see first and that’s suck. Take care and stay safe.
Hi @Dan0921 as you so honestly say you, your family and friends just don’t know how to be or what to do or what to say, this is new territory for everyone, I think, in hindsight, honest open communication back and forth is all you can do.
Yes, you or your family and friends might find counselling might help and Macmillan Cancer care might be able to assist.
As for the wait and see, it seems to be all we ever do waiting on others, appointments, results and yes, it sucks.
However if your doctors mean ‘watch and wait’ or ‘active monitoring’ that is something that quite a few of us are on. Our test results are monitored at regular intervals and that with our symptoms, medical histories and sometimes the questions we are asked give our doctors a picture on which to decide the way forward.
My blood tests are taken regularly and checked by my doctor and I am only seen occasionally.
Look after yourself and don’t forget the Blood Cancer UK support line is there for you if you would like to talk to someone.
I studied a number of complementary therapies and started nutrition therapy. Food is very important and the more natural it is the better. As they say we are what we eat. I am aware some of the things I eat could be healthier so I work at it. I am a vegan and sometimes eat vegan options which are processed and not good for you. I seem to thrive when I make all my own dishes from scratch.same with what we put on our bodies the more natural the better.
Hello @shishabell. I am just reading your post from Oct 2021, and wondering how you are managing now? I have ET Jak2 as well. I was diagnosed midway through 2021, and began Hydroxycarbamide on the 1st of January in 2022. I wish you well for 2023!