Wales.

[mag123ben]

I live near Carmarthen. South wales. I have blood cancer MPN Essential thrombocythemia. Does anyone else have this condition as I haven't been given a PALS or anyone to talk to. In England I here I would have had one, or been able to speak to someone. Any help to speak to someone would be great. This site has been a god send. So keep it up. If that made sense.

[gilded]

Hello mag123ben, I was diagnosed with ET ( essential thromb.) CALR a couple of years ago. This forum has many ET sufferers and those with other blood cancer conditions on it. Just post a query and you will receive lots of helpful replies from knowledgeable subscribers.

[mag123ben in reply to gilded]

Have been on this site sometimes now and the help I get is great. Thanks for your reply. Would be lost with out it.

[Rem31]

MPN Voice has a buddy support program and you may find that could help.

mpnvoice.org.uk/?s=Buddy

mpnvoice.org.uk/about-us/vi...

[Plavers]

You'll find lots of similarly challenged people here Mag123ben. I'm 74 with ET JAK2 , it's always difficult when first diagnosed. The First line of defence for me were the Cancer Care Nurses who had lots of info and leaflets (Lots of Leaflets!). I waited about Three years before asking to be referred to a Specialist in MPNs not just a Haematologist (no offence to the amazing knowledge of these very professional specialists). It was after interacting with this Forum I realised I needed the Expert eye of an MPN specialist otherwise it seemed that any symptoms that could be blamed on other conditions WERE - conditions like Arthritis - Dermatitis. However the main thing is you are HERE with lots and lots of people who have the same or similar conditions. MPN Voice is an amazing resource with so much information mpnvoice.org.uk I'm sure you'll find someone near you who will be that voice on the phone who will understand the trials and tribulations of this condition . Best of luck.

[SmotMot]

Hello . I am 70, live in Montgomeryshire ,Mid Wales,was diagnosed with E T Jak 2 just over a year ago. My haematologist is over the border in England. I see a Consultant nurse every 3 -4 months and have never seen a doctor. But I know how you feel Mag123 ben. I feel very isolated and the nurse although very nice does not want to know about any of my symptoms. I have 3 doctors in my family but not one of them have ever treated and know much about our condition.

However, I have a fairly good understanding by now, but this forum has been really helpful as well.

[mag123ben in reply to SmotMot]

This forum has been my life line . Understanding is all we want. I have fibromyalgia and that was the same. All symptoms in your head. Never mind one day we will be understood.