Hi i wasn’t sure how to delete a post so I edited it.
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@SharRae Hi and welcome.
I am in no doubt the forum medical lot will give you loads of info shortly, such as links essential thrombosis info.
I have Polycythaemia vera (PV) and we share many of the common symptoms, but one thing is the same and that is the shock of being diagnosed and for many, the lack of medical knowledge about the cancer, the more rare, the more medical teams have to work at giving us the information.
As you have no doubt discovered, Google is not the best medical advisor out there and it does tend to trend on the fear factor syndrome.
You don’t say where abouts are you, that can give the forum team an indication of the state of services across the UK and inform future work.
It does seem you have been interestedly treated that highlights gaps in the medical support in your area. Many of us here have had our own rants about docs and medical teams, so you are not alone in feeling like that.
As for your age, it is rare as is your condition, but you have time on your side to learn to live with it and have the advantage of medical advances when they come.
It shows up as we get older, because of the chances of us contacting the medical infrastructure is higher and many will look back and realise we have had the cancer for many years and put it down to many other things, plus many a male will ignore symptoms due to cultural norms of lack of contact with the medical system, while females due to their biology have an on going relationship with medicine from a young age.
The shock will pass and breathing will become easier again, share on here and learn what you can, it will make dealing with close friends and family easier as you will have many of the answers to the questions they will want to ask.
Take time for yourself and be kind to yourself first
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Hi @SharRae,
I’m so sorry you’ve had a difficult diagnosis and been left in limbo. Having limited information must be really difficult and no doubt frustrating for you.
I appreciate waiting another month for a further haematology appointment will feel like a really long time. Therefore If you would prefer to talk things through with us before hand, please don’t hesitate to call our helpline at any point- Blood cancer information and support by phone and email | Blood Cancer UK.
I am pleased you have found the forum and also that you have ordered some booklets. Understanding what Essential thrombocythemia (ET) might mean for you can be really tricky so do take your time to read from reliable sources. As you will likely know by now, not everyone diagnosed with Essential thrombocythemia (ET) will require treatment. Some people are ‘actively monitored’ by their haematology team or GP where they will have regular bloods taken.
There are many people within this forum who also have a diagnosis of Essential thrombocythemia (ET) so I’m sure you will have some great support and shared experiences from others. In addition to our booklets and online information around Essential thrombocythemia (ET), It might also be useful to order a copy of our newly diagnosed booklet which talks through some practical steps when a person is recently diagnosed- Your blood cancer diagnosis: What happens now? | Blood Cancer UK Shop
Best Wishes, Lauran
Hi @SharRae I am so glad that you have found us, a great big welcome, you are no longer isolated.
Your post did not come over as a rant, just a diary of events.
@clickinhistory and @LauranBloodCancerUK have given you great responses.
I have also got delays due to the Christmas and New Year and the strikes back log, but if you have not received the leaflet and appointment soon then please do chase it up in an email to the Haematology Dept or PALS (Patient Advice and Liaison Service).
My hospital has the details on their website.
I have also found that I have to contact whoever orders the tests.
In the meantime have a look at the information @clickinhistory has sent you and then that will give you the opportunity to write down your fears and questions for when you do get your appointment. You might also ask for a face to face appointment for this time if you would prefer it.
Perhaps be pleasantly assertive and ensure that you get the answers to your questions.
Since diagnosis I have found that there is a lot of waiting, being in limbo, not knowing and I think it is the worst feeling.
In the meantime be very kind and look after yourself.
You have the details of the Blood Cancer UK support line from @LauranBloodCancerUK please do talk to them if you need to.
Please do keep posting
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