Recently diagnosed

This is my first posting on this wonderful site.  I visited my GP at the end of Oct and he happened to take my blood pressure.  It has always been on the low side of normal but was very high.  One week later the result of a blood test showed polycythaemia and 2 weeks later I had an appointment with a specialist at Blackpool Victoria hospital.  I had no idea that there was any link to cancer until I was advised by the hospital to go to the Macmillan Unit.  I started looking on google and frightened myself silly so that by the time I saw the specialist I was thoroughly confused.  Then I had a three week wait for the result of the JAK2 test which was positive.  There followed four consecutive weeks of vanesections.  Christmas was a bit of a blur as my head was like a cabbage.  In the meantime I have learned to live with an incurable but treatable condition and so far my synptoms have not been anymore than tiredness, at times a very red face and eyes and hot flushes which luckily only last moments.  I am so glad that I have found this site as shared knowledge is really useful.  Warm wishes to you all.

9 Replies

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  • Hi Fionnaulgh. Welcome , this as you say, is an incredible site.......I don't know how I would cope without the camaraderie and advice from the lovely people who run the site and of course the fellow sufferers ( couldn't think of an alternate word ) . Who contribute with understanding and wisdom.....we are so fortunate to have this knowledge at the press of a screen.

    It's your "go to " site when you need to talk, or question.

    Best wishes to you. Sandy x

  • Hello Fionnuaghla, welcome to the club no one wants to join! This is an excellent site with people who can offer experience and tips and wrinkles. It can be easy to frighten ourselves - I thought I had months to live when I was diagnosed in 1988! As your counts get sorted your symptoms will hopefully reduce, and nowadays there are all sorts of treatment options. Remember if you need to go on medication at some point that all medication has side effects but you'd be very unlucky to get them all, and many of us tolerate medication well.

    Hope you are feeling better by now, and yes it is cancer but very treatable and perfectly possible to live a full and active life with it. and this site is here for those moments when it isn't quite as smooth.

    best wishes Fee

  • Hi and welcome to the site. You will never be short of a friendly voice to help you when you have questions or just need a moan, or to vent your spleen! Or just to share some good news! We all need it sometimes and this is the place to do it. It takes a while to get used to having this rare cancer but as the others say it is treatable and time brings acceptance, and you come to realise that life goes on - if you are lucky, without too many symptoms and side effects. Hope you keep well.

    Best wishes, Karen x

  • Welcome to the MPN family Fiona. I, too, searched every site on the internet and ended up more confused than before then I went on to the MacMillan site who guided me here.  I learnt more from here than from the professionals  I had seen and it really does have a family atmosphere.  Hope you sail through your illness and treatment but if any problems you know where to come.  Jill xx

  • Hello Fionnuaghla,  Do hope you are feeling better in every way.  I've been aware of having PV for 17 years now and in the early days was told to think of it as a chronic disorder like others chronic disorders.  So much has been learned in the last few years.  A normal lifespan is now ours if we receive treatment.  I expect the redness will go as your HCT comes into a more normal range.  

    My experience is that venesections can be stressful and can add to feeling fatigue.  Anything that makes us concentrate on the disorder doesn't help.  Also a lower HGB which PVers aim for means we may feel more tired.

    Very best wishes for this new adventure!

     

  • Your so right, when you Google polycthamenia it's frightening, but it can be managed which is a good thing.

    My husband was diagnosed 2.5 years ago I'm so glad I joined this site it's been so reassuring.

    My husband started hydroxy in October last year he's never looked back. He was having monthly venesections it was draining him.

    By the time he sees his haematologist in may he will have gone 8 months without a venesection. He feels fantastic.

    We don't think of my husband having cancer we just say it's a blood disorder.

    Your entitled to free perscriptions and if your employed they have a duty of care under the provisions and equality act 2010 to help you and make reasonable adjustments if your struggling with fatigue etc.

    My husband hasn't ever been off work. 

    Tracey

  • Hi Tracey just reading your post ,

    How lovely you join to get knowledge about this disease it's a wonderful forum I couldn't imagine life without it ,  I have ET jak 2Pos 

    I've gathered lots of information & made lots of lovely friends 

    I hope also to be your friend I live in North East ,(Wallsend) , hope to hear from you very soon ,

    Pam x

  • It is good to share your experiences. I  think Google research is quite frightening.  But we have to understand what our condition is about.  What ever the diagnosis.  I think calling it a blood disorder may help to cope with the condition.  Doesn't lessen the seriousness.  Make sure you try and stay positive.  I find my moods go up and down.  I  try to stay active but often am takenot over by anxiety. .. good old panic attacks. I just work with them. For me its  feeling alone that is the worst thing.  

    Just got my Internet back. After 4 weeks of no signal. 

    Stay strong 

  • Hello Fionnuaghla, welcome to our forum.  I hope that you are now feeling better, it is a very confusing, scary and emotional time when you are first diagnosed, hopefully you will find the information on our website has helped mpnvoice.org.uk.  Best wishes, Maz

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