ET

Hi Brandy9 and welcome to this corner of the Community. I am Mike and I help out around our blood cancer groups.

I don't have Essential thrombocythaemia (ET) but I was diagnosed way back in 1999 with another rare, incurable type of blood cancer Stage 4a so I do know this journey rather well.

You do need to talk with your Specialist Nurse as they will totally understand as they are dealing with folks like yourself every day and do understand what challenges you are having to deal with. They won’t think you are making this up…. It’s part of living with the condition.

It’s a while since I was getting Contribution Based ESA but I do remember that any Specialist Nurse had to sign it so get the conversation going ASAP.

The Macmillan Support Line is open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00. This service provides cancer information, practical information, emotional support or just a listening ear. M

They also provide benefits/financial guidance so they can make sure that you are reviving all the benefits that are available for you.

Let's look for the members with this condition to pick up on your post, you can also look through all the group threads (hit the group name and scroll down) and as always you can hit reply to any post.

Talking to people face to face can help a lot 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 each centre do run monthly Heamatology Support Groups most are online at the moment….. the one i attend does have a few folks with ET in it so worth checking.

You may also want to check out MPN VOICE UK for some good information and have various support platforms.

Always around if you need further help or just want to talk.

PS - You may want actually join the group as you will get notifications when others post in the group so click on the black banner that says [click to join] at the bottom, or the [Join] button under "Group tools."

Thanks for the info and great suggestions. I've joined the group so that should be full of helpful stuff.  The first thing I'll do is get in touch my my Nurse and try to get a face to face appointment. Again, thanks.

Hi Brandy9, I'm sorry you have had to join us but I'd like to give you a very warm welcome to our group. I see my good friend Mike has been in touch with a wealth of information.

I don't have ET, I have a different blood cancer called MDS, short for myelodysplasia. It's a bone marrow cancer and it leaves me with too few red blood cells which in turn leaves me very tired. 

Your specialist nurse will understand your condition and won't be surprised when you tell her about your pains and extreme fatigue. I'm not getting universal credit but I am getting ESA and I'm also in the support group which gives me a few extra quid. It also means something like I'm considered too ill to be expected to work. There are two types of ESA, contribution based and income related. I'm not too sure which one you will fall into. If you contact MacMillan someone in a relative department will help you with claiming what you're entitled to. 

Everyone in this group is so supportive and welcoming. I hope you become a friendly and helpful member of our team Brandy.

You haven't filled in your profile yet Brandy so we know nothing about you. Of course it's not compulsory but it helps people know something about you and what you're dealing with. 

Take care Brandy 

Tvman 

Thanks for the lovely welcome