ET

Hi and welcome to the online community

I have to confess that I didn't know what essential thrombocythaemia was so have had to look it up. As I'm not sure which of ours groups would be best for you to join I've asked one of the other Community Champions if they could pop by and advise you.

The last thing you need to be worrying about right now are how you're going to make ends meet so could I suggest that you have a look at this information from Macmillan on benefits and other financial support. You might also like to give the Support Line a call on 0808 808 0000 and speak to one of the welfare rights team. It's free to call and they're available Monday to Friday from 8am to 8pm.

When you have a minute it would be really useful if could pop something about your journey so far into your profile as it helps others when answering or looking for someone with a similar diagnosis. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Edit Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

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Hi Lesley

Welcome to the online community and I'm very sorry that you've had to join us but I hope throughout your journey we will be able to give you some support.

I would like to invite you to join our Leukaemia forum and meet with the very friendly members some of which may be suffering with the same condition as yourself and I'm  sure the members who are very supportive of each other will try and answer any questions you may have.

But to answer your initial questions the following maybe help you

Macmillans leaflet help with prescription charges

You need to get your GP to sign a form stating that you have cancer which is sent off and you will receive an exemption certificate valid for 5 years.

Help with Healthcare Travel costs

To claim hospital travel costs you need to produce a copy of a benefits letter to the hospital cash office to reclaim the costs.

You will note that above is some text in green you need to click on each line to open up the leaflets which will give you full details of the procedures.

I hope that this of help to you.

Ian

Hi  and another welcome to the Community but sorry to see you finding us.

You have been given good advice with regards to finding support about your finances and please follow these up. I would also recommend to check if you have a Maggie’s Centre near you as these folks can help.

I have a rare type of Non Hodgkin's lymphoma blood cancer and Essential Thrombocythaemia is also a rare type of blood cancer. I have lived with it for over 20 years and have been on a long treatment journey that you can see by hitting my forum name.

ET is one of these Blood Cancers that fall between the cracks of our forums. We do have a number of support forums for blood cancers that even although there is not a specific ET forum you will find lots of folks living well with blood cancers so have a look through this list of Cancer specific groups.

You can dip into the blood cancer groups like NHL (where I hang out the most) HL and we do have the CCL SLL HCL group along with all our support groups through the Groups and general Cancer experience groups.

There have been a number of folks post with ET over the years so if you put ET or Essential Thrombocythaemia into the search tool you will see the old post. You can then put some reply into their threads and see if they are still looking into the Community.

We also have our ‘Ask an Expert’. section where you can post questions to our mostly Volunteer Experts but please allow 2 working days to get a reply.

Always around to help out as best as it can.