Worried about polycythima Vera

I am being tested for pv a type of blood cancer I’ve been in and out of hospital very poorly since January I’m worried sick and I feel so isolated because my family are just telling me not to worry I won’t have it I’m waiting for Jak 2 results from oncology and I asked my dad if he would come with me I’m only 24 he was like maybe and everyone is dismissing the fact I may have blood cancer so I’m sat worried sick alone

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Hi @Bmarie21, a great big warm welcome to you.
It is so natural to feel worried sick and so isolated, you have brought the feelings straight back to me and I was diagnosed with Chronic Lymphocytic Leukaemia 17 yrs ago.
I remember family, friends and work just not knowing how to be with me, they were in shock, denial and trying to make me feel better. When I really needed them I felt they were not hearing me.
At the moment during Covid it might be unlikely that you could take anyone with you to medical appointments.
What I have learnt to do is to keep a diary of events, and to write a list of my fears, emotions, thoughts, symptoms, medications and practicalities because I walk into somewhere medical and my mind goes blank. I now ask all my questions and I ask for clarifications if I don’t understand anything. I also do not make immediate decisions.
You have entered a world with a new language. You have also had Covid restrictions to deal with.
I expect your emotions are all over the place, mine were and mine are also during the lockdowns.
We are here to support you so you are not alone and if you would like to talk you can contact our Support Services Team on 0808 2080 888 (10am-7pm Monday-Friday, and 10am-1pm Saturday and Sunday) or via email at support@bloodcancer.org.uk
My husband, 17 yrs on, still goes around with his head in the sand, I have to just accept that is him.
Please keep posting, we are here for you and I would like to hear more about what has been going on for you and how you get on.

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Thank you so much for your reply :sparkling_heart: this has made me feel a lot less alone

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Hi @Bmarie21

I’d also like to welcome you to the forum. As Erica said in her message to you’re not alone and we’re all here to help and support each other. I’ve found the forum a great support myself and it’s great having a place where you can share how you are feeling in a non judgemental environment and talk to others who are going through similar experiences to yourself.

Take care and stay safe.

All the best, Peter

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Hi bmarie21 have been living with PV for over four years was on clinical trial taking ruxolitinib which has kept my levels really well checked every three months and my consultant has been well pleased and as for the vaccine had mine today it was the Astra Zeneca,gives us so much hope good luck

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Hi Bmarie21,
Welcome to the forum. PV is a rare condition,the general public, on the whole, have never heard of it, but on this forum you will come across people with this disorder .who hopefully will be able to offer you some reassurance.I have PV with JAK2 mutation and was diagnosed nearly 3 years ago although I think I probably had it for 3 years before that.You say in your message that you are being tested for PV. I had a number of symptoms like 1] intense itching after a shower or bath 2] a very florid complexion,I used to say that I was in a state of perpetual embarrassment. and 3] extreme fatigue My blood counts were all high, particularly the platelets where the figures were around 550, the normal range being 150 - 450.
My haematology consultant was very reassuring and my treatment has been very straightforward.I have regular blood tests every 3-4 months which may lead to a venesection if my readings are on the high side.This involves taking a pint of blood which they then destroy.If you are a blood donor it won’t bother you at all, although you won’t be able to do that anymore. I was also offered an oral chemotherapy tablet called Hydroxycarbamide. on a daily basis, this has been very effective. My blood counts are now comfortably within normal range and my life expectancy is that of any 70 year old.The condition hardly impinges on my life at all.
What I would suggest to you is that you seek an appointment with a haematologist who see
this condition more frequently than a GP or oncologist would.There are good booklets issued by the blood charities on PV which are very well worth reading.It is only natural to be anxious when you hear a diagnosis that includes the word cancer, you don’t focus on anything else that is said. I know several people with PV who are leading normal happy lives,like me, and hope that should you be diagnosed with it that you will to.

Best wishes,

Ian

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Hey buddy @Bmarie21

I’ve recently turned 39 and was diagnosed with PV in August 2020. I’ve lost count of how many blood tests I’ve had and had about 5 venesections since then. I’m going through this alone (personal choice) and the only people that know I can count on my hand. I can totally empathise with how you’re feeling and still am but I must echo what people have written here… so can’t really cut and paste… though PV is rare, looking at forums on here and reading into PV may scare and also give you comfort, but for as much of isolation (being alone, in others not understanding, not lockdown related) you feel, especially looking at your age dealing with this… you really aren’t… you’ve made a huge step reaching out and hopefully by doing so, you will discover others like you, in similar conditions or people who can pass on their experiences and wisdom to guide you through this.

Try and stay strong til your results come back… doctors have a job not to scare you, but to inform you of all possibilities… You can get in a car and you may get in an accident but then you may not, (touchwood it doesn’t happen obvs but hopefully you get what I’m trying to say)

If it comes back negative… great! if it comes back positive… You’re not alone and there are plenty people in the same boat and going on the same journey.

Take it easy and be kind to yourself during these days pal

:slight_smile:

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Wise words from @Rammie18 . I can’t put it better than that. Good luck and let us know how you get on @Bmarie21 .

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@Rammie18 , I remember when you first joined the forum. How amazing that you can now share your experiences and support others!

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@Nichola75

People in here including yourself helped me massively during those early days and weeks… I can only wish to pay it forward as best I can

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