Hi all. I’m a 38year old female diagnosed on 26th Nov with polycythemia Vera. Currently feeling like my world is crumbling around me and life won’t be the same again. I’m aware that this type of blood cancer is manageable but I’m really struggling to get my head round all of this.
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Oh @Zoescott1 I really feel for you, I remember similar feelings so well myself.
I have another blood cancer and I was diagnosed at this time of year.
I came straight home and wrote my will and funeral music and that was 20 yrs ago.
I thought that I had my life and career mapped out in front of me and I would see my son married and I would have grandchildren, then suddenly …
I think my feeling of having my life and career mapped out in front of me before my diagnosis and then suddenly … might be connected to your feeling of your world crumbling around you.
I think I was in shock for a long time and so perhaps just give yourself time to come to terms with it all, your world has been turned upside down.
I felt very lonely and isolated at that time and in a weird bubble with people preparing for the festive season around me.
I have made some adaptions to my lifestyle and work life because I get fatigue and symptoms but I can honestly say my 70th birthday was my best ever.
I have never learnt medical speak, it is like a foreign language to me, I just ask medical people to put it into plain English for me.
My diagnosis has given me an opportunity to work out what I want out of life and with whom. I reckon that the best things in life are free like good family and friends, nature, music etc.
The Blood Cancer UK support line is there for you on 0808 2080 888 and you are now part of our forum family.
Be ever so kind to yourself and look after yourself and I really look forward to hearing more about you.
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Dear @Zoescott1
Welcome to the forum, although I am sorry for the reasons that you find yourself here! I think you will find this a really supportive place though!
I don’t think I can add to much to @Erica’s wonderful reply but I just wanted to say we are here for you and if you want to talk things through please do call us - 0808 2080 888.
This is all so new to you and your feelings are so justified, you have had huge news and it will take time to process everything. In time you will feel back in control.
Have you got good support around you?
Please be really kind to yourself, take one step at a time.
Take care,
Heidi (Support Services Nurse)
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Hello @Zoescott1, welcome to the forum, fellow Polycythaemia vera (PV) survivor. I’m sorry you had reason to find us here but I’m very glad you did.
Just wanted to say from where I am a year after diagnosis that I really empathise with how you’re feeling right now, and to reassure you that you’re not alone with Polycythaemia vera (PV) and that there is life beyond this.
For now though I’d say just feel it all. Let yourself feel how rubbish it is to have been diagnosed with this chronic blood disorder. I imagine it’s making you wonder what lies ahead, what can you achieve in life if you’ve got this disorder lurking away. All of that is to be expected with such a life-changing diagnosis.
Hopefully you have loved ones you can share all this with. Perhaps it doesn’t feel quite real yet, or you’re not ready to talk about it with people you know, so the lovely Blood Cancer UK nurses are right there if you wanted to call, like @Erica and @Heidi-J-BloodCancerUK say.
When you’re ready have a look at the BCUK information about Polycythaemia vera (PV), I think it’s really well researched: Polycythaemia vera (PV) | Blood Cancer UK
Perhaps you’d like to see how others on the forum live with Polycythaemia vera (PV) and other closely related Myeloproliferative neoplasms (MPN) like Essential thrombocythemia (ET), so I’d say when you’ve got the headspace look around the forum using search terms like Polycythaemia vera (PV) and you’ll find many of us sharing tips and experiences.
Do keep us posted about how you get on @Zoescott1, thinking of you!
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