have very recently been diagnosed with Essential thrombocythemia (Essential thrombocythemia (ET)). I’ve just started Besremi injections, feeling very overwhelmed with it all. Would appreciate some advice 
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Oh @Linda13 a great big welcome to our support forum you are now part of our forum family.
I really felt for you when i read your post as I remember feeling such a mixture of conflicting emotions and perhaps I felt very overwhelmed, yet shocked, scared, isolated and lonely at the same time.
In hindsight I suppose I would say to myself to give myself plenty of time to come to terms with things.
I would really try to keep it in the day.
I would tell myself not to Google as there can be some out of date and/or misleading information out there.
Here is a link to the Blood Cancer UK website information
[Essential thrombocythaemia | Blood Cancer UK]
(Essential thrombocythaemia | Blood Cancer UK)
I would write down all my fears, questions and practicalities and pleasantly, yet assertively, ask my specialist nurse or medical team.
I would ask for the replies to be in a language I could understand.
I would keep them informed of any symptoms I had.
I would try to eat a normal balanced diet and ask my team about any dietary changes or supplements I wanted to take.
I would try and get fresh air and just reasonable exercise.
I might see if someone would come to appointments with me.
I would ask for and receive help.
This is information I have really gained being on our forum.
Be ever so kind to yourself and really look after yourself and I look forward to hearing more about you
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Good evening @Linda13, and welcome to the club that you had probably nebver heard of, and almost certainly didn’t volunteer to join!
I was diagnosed with Essential thrombocythemia (ET) back in March of 2018, having been foolish enough to suffer a heart attack 6 months earlier!
I started off on Pegasys injections, then, late last year, was moved on to Hydroxycarbamide capsules, before starting on the Besremi injections as well as the Hydroxycarbamide capsules.
The best advice I can offer is to not worry about your diagnosis too much, or too often, and to try to lead as normal a life as possible. You may well have to make some adjustments though. The biggest issue I have is fatigue. It does feel very debilitating at times and to this day I don’t know whether it is mostly caused by the treatment or the Essential thrombocythemia (ET) itself! I still manage to work full-time, and although I have said this before, that is becoming more difficult. Then again, I am now 60 and my job can be physically demanding at times.
Above all, stay safe, take care, be kind to yourself and keep on smiling.
Best wishes,
Jimbo165
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Thank you so much for your advice , I will certainly take on board everything you have suggested and will keep you posted x
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Thank you so much Jimbo165 , sound advice , which has made me do much better and far less overwhelmed.
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