I have had ET fourteen years and I was told by my haematologist that as I take my medication my life expectancy will be the same as anyone else. It took a few years to settle my medication but I have never felt ill.
I have check ups and blood tests every 6ish weeks and I now have myelofibrosis as well! I know this is cancer but I just put it out of my mind. I now have a shortened life expectancy now. The incidence rate of the two diseases is below the government guide lines for research which is probably why it is so difficult to give a life expectancy for both these 'cancers'. I live in Barnsley, South Yorkshire and we have a specialist nurse for this condition who is really caring and can answer all questions, she knows the diseases inside out - we're lucky. Our haemotology department is brilliant - I always see the consultant who discuss the medication and other problems. I have been given between 5 & 8 years hopefully I'll get more but I'm going to make the time crack!!
,I am 69 and yes I could feel sorry for myself but have 6 beautiful grandchildren - 8,7,6, twins 5 and the youngest 3. Although I know I won't see them go to university, get married have children etc I try to concentrate on the here and now and enjoy every minute of my time with them, which is a lot!
I am taking anagralide 500 mg twice a day and at present my condition is stable - long may it last!!
I'm having a big problem getting holiday insurance - E.T is no problem at all but the myelofibrosis is - anyone got any ideas? Hope this helps someone!