What happens next?

Recent diagnosis
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21

It’s so good to hear you feeling positive about the future and I’m glad to hear you had a positive experience with the NHS hospital dealing with your case.

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So pleased to hear you had a good experience of your care from the hospital Michelle, thank you for coming back and updating us. Living with a chronic condition can be challenging, hopefully you’ll continue feeling positive. You mentioned experiencing mouth ulcers - have you looked at our factsheet on mucositis (its here https://bloodwise.org.uk/sites/default/files/documents/Mucositis_fact_sheet.pdf), it seems to be a common side effect of many treatments for blood cancer unfortunately but hopefully some things in this sheet may be helpful?

Have you heard of MPN Voice? They have a buddy scheme for people with ET/PV/MF, as it’s quite rare and people can often feel isolated and so connecting with others in a similar situation can be a relief. You can find out about it here - http://www.mpnvoice.org.uk/get-involved/buddy-programme.aspx

How are you feeling now?

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Thanks for the info Dawn. I went to my local chemist about the mouth ulcers and they helped me find a mouthwash to use. image.
I’ve also joined some Facebook support groups dealing with ET. It’s shocking how different the way people are treated in other countries, specifically USA, regarding paying for tests via insurance. So many people aren’t being given the full range of tests as their insurance companies won’t cover the costs involved!! Another reason to be so grateful to our NHS.

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Hi Michelle, thanks for the photo it really brightens up posts for me, perhaps you will be a trendsetter. I am glad your local chemist was so helpful. I expect others might also have ideas of what has helped them. Yes, aren’t we lucky with our NHS system. I also think we are so lucky to have this community forum with so many varied posts. Please keep posting.

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So pleased the pharmacist was a good point of information and practical advice for you Michelle, thank you for letting us know how you got on. Hopefully you will see an improvement - mucositis is something many people sadly struggle with and knowing what can work for others is incredibly useful.

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Hi @Michelle I just wanted to see how you were getting on, have some of the symptoms and side effects you experienced lessened or become easier to manage?

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