I got diagnosed with essential thrombocythemia back in November and told I shouldnt need to start treatment until things got alot worse or I was in my 60s, 3 month later I had to start treatment which is fine for me, I have 3 children and my husband and out of all of them my husband is the one thats finding it hard, he's having nightmares that I'm going to die and then the children don't live at home with him, anyone else had this issue with the other half
Hi Sammy87 and a warm welcome to this corner of the Community although I am always sorry to see folks joining us. I am Mike and I help out around our various Blood Cancer groups. I don’t have Essential Thrombocythemia but I was diagnosed back in 1999 with a rare, incurable type of NHL Stage 4a so although my Blood Cancer ‘type’ is different I know this journey rather well.
First you may want to copy and paste the text from this post and put up a new post in our dedicated MDS/MPN/ET/PV/myelofibrosis (MF) group where you will find others with the same condition and as always you can reply to existing ‘Discussions’ by clicking [reply].
Understanding a lifelong health condition like MF is important as it removes the concept that this is a death sentence. I have lived, worked seen two daughters married and 4 granddaughter arrive over my 23 year with my incurable Non Hodgkin's Lymphoma. Your husband needs to get educated in this condition.
He may find talking to people face to face can be very helpful but during these strange times it’s not that available but do check to see if any Local Macmillan Support in your area has opened up. Do also check out for a local Maggie's Centre in your area as these folks are amazing and provide support for all the family........ and for you Maggie's run Hematology Support Groups.
There are many levels of treatment available for ET so unlike many many other cancers - ET is very treatable.
I will keep an eye open for you putting up a post in the other group.
Always around to help out.
