Hi,

I've only just joined this group, for those who are new to this condition (ET) and understandably scared I want to share my story ... I was diagnosed with Essential Thrombocythaemia just before my 22nd Birthday - back in 1980 ... I was terrified as my platelets were around 1.5 million* and rose to 2 million* before they were under control. (* in the calculations at that time)

In the intervening 40 years that I have lived with this condition I have undergone many tests, tried many treatments, I qualified as a Nurse, married, had 2 wonderful daughters, have travelled widely (including Australia & Fiji) and continue to attend Hospital for reviews with my Consultant.  I have been taking Hydroxycarbamide daily since 1993 & continue to do so.  I was told many years ago that ET was linked to leukaemia so whilst not using the C word I have known at some level that it was on that spectrum.

Any time I feel downhearted I remind myself that "I get to ... " rather than "I've got to .." it's surprising what a difference it makes - mindset is everything.   I am grateful every day for having THIS day because I know how close I came to a very different future!  I am thankful for the NHS & their expertise.  I have taken early retirement and know I am fortunate to have that choice (I'm now doing a home based business - working on my own terms! ) - I am aware of the other patients I no longer see at my appointments & hope it is because they are in remission - so I make the most of every day, to be in the moment... I've learnt to enjoy both the rain and the sunshine.

As WH Davies said in his poem Leisure ... 

"What is this life if full of care, We have no time to stand and stare ... "

and on your bad days remind yourself "this too shall pass" because it will, hang on in there & make the good times count.