Hi all,
I have recently been diagnosed with Polycythemia Vera and as it is, to me anyway a lesser known type of cancer (of the blood) and as there is no (at the moment anyway) obvious signs of an illness.I sometimes either feel a fraud or if people feel that I am constantly making things up or feigning illness. (I haven't told many people of my diagnosis) but at work, because I have lots of time off for appointments, people are starting to be resentful of my time off. (I haven't told my colleagues but I have told management) I don't like going to work each day feeling anxious, weary and scared at times what with covid being as it is coupled with having asthma as well. How do other people feel about their own struggle and have you any good coping ideas? Thanks.
Hi and a warm welcome to the Online Community, a Community that no one really looks to see themselves joining, and so sorry to hear about your PV diagnosis.
Never feel all fraud as cancer is cancer. I was diagnosed in 1999 with a rather rare and difficult to treat Cutaneous T-Cell (skin) Non Hodgkin’s Lymphoma. I was told “Mike, I am sorry to tell you that this type of NHL is incurable, yes treatable but you will never be in remission”..... so do understand these early days of diagnosis.
A rare blood cancer diagnosis brings confusion, stress and many questions. As PV is rare we don’t have a specific PV group but there are many support groups.
This first list is for our Cancer specific Groups. The second list is for our various our Cancer experience groups.
Follow the above links, have a look round and then choose ‘click to join' or ‘join’ when the group page opens. You can then introduce yourself, post questions or just join in with existing discussions by clicking on 'reply'.
It’s always good to talk and the Macmillan Support Services provides lots of information, support, financial guidance or just a listing ear.
Most services are open 8am to 8pm, 7 days a week and it's free to call on 0808 808 00 00 have a look by Clicking here to see what is available and we also have our Ask an Expert section, but do allow two working days for replies from our expert team.
All the very best.
