Thanks @Erica - You’re so right that confronting & often combatting all of these things with fatigue to boot can be so difficult and also a cycle, since it’s so tiring itself. It really helps to hear I’m not alone, I’m so incredibly glad BCUK is here!! I didn’t know it had changed its name, that was good to know 
For me it’s felt like an invaluable resource - for support, for info, and just for the sense that someone out there is advocating at a level where they are being listened to, it makes everything feel less lonely somehow & much more hopeful. It means such a lot!
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Hi @lousyT - wow yes, exactly that about the fears of either being dismissed or possibly facing a tiring & upsettling conflict putting me off seeking medical help! Thank you so much for your reply, it’s sad that you (and so many!) seem to have similar experiences, hopefully in time awareness of some of these conditions (and their physical effects) will grow, in the meantime it does give me a sense of solidarity and a little feeling of strength knowing it’s not just me & that others really do understand! Thanks for the BCUK phone/email recommendation - it’s really good to hear how much of a help you’ve found it! I hope you’re doing ok at the moment and you take care too X
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Hi @Erica - I had to laugh at your meditation comment, I really struggle with it too 
If you fancy trying again anytime, a friend recently recommended the Medito app to me, which so far seems pretty good! The meditations are really short (you can choose between various lengths 5 mins to 20 mins), there are different voices to choose between, different themes, different meditation types, thoughts for the day, lots of good tips, good user interface etc, plus it’s all totally free and they’re committed to keeping it free so as many people can continue to access it as possible. And the meditations are good too!
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That sounds so hard for you and your husband, what a lot to be going through, no wonder you’ve been feeling anxious! It sounds like you’ve got some good things in place for your anxiety - I recently discovererd Happiful magazine, which is quite uplifting and full of good tips for peace of mind, articles, good news etc, plus it’s free if you get it as an email subscription. I find you can never have too many things in your toolbox for anxiety! Best of luck and I hope your husband is recovering well!
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I wonder why GP’s might argue that ET isn’t a blood cancer as when you look it up they all say it is 'a blood cancer’i just picked a random one,the Cancer Research, and it is described as 'a slow growing blood cancer’but I can’t quite figure out what group it belongs to.It doesn’t seem to be a Lymphoma so I’m guessing a Myeloma or Leukemia or perhaps in it’s own group?As I understand it a blood cancer is one that originated in the blood although it may end up somewhere else too.Whereas a solid tumour cancer originates in a solid organ but can undergo movement somewhere else.As for tiredness I can attest from personal experience they do make you tired and disrupt your sleep but obviously I suppose that is a mixture of the cancer itself and psychological effects too and maybe other unrelated things as well?
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It used to be classed as a Myeloproliferative disorder, as they did not know what caused it, (that was when I was first diagnosed)
now they know that it is caused by mutations in stem cells in the bone marrow, causing over production of platelets, so it has been re-classified as a Myeloproliferative neoplasm
Maybe your doctor is behind the times, and does not know about this change
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Hi @Kevan7 I am useless on classifications and medical stuff.
However I can relate to the tiredness or fatigue and the disruption to sleep for the reasons you say.
Look after yourself and there is a lot of information on here and the Blood Cancer UK website about fatigue and handy hints for managing it.
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Hi @Chapsticks - wouldn’t life be easier if we felt that seeking medical help was always going to involve a positive and productive discussion! Whenever I have a positive conversation I feel so very grateful! I hope that you’ve been able to contact the BCUK patient line and are feeling a little less alone now. Take care and keep in touch x
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@Chapsticks ,thanks for the recommendations for the Happiful magazine and the Medito meditation app.
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You were lucky to have a decent Internet speed all those years ago in the South West… Here in Somerset we had less than 1/2GB until fibre to box came 5 years ago and absolutely no phone signal! We are only 3 miles from the exchange too
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I’m about 500yards from the exchange
we have fibre to the cabinet, and my speed is about 50mb when I check, and that’s what I pay for, and it’s very reliable
This year, they are installing fibre to the premises, so it’ll be 100
…but still no mobile signal, I have sea in front of me, and a slate cliff behind, so don’t expect a mobile phone signal ever, satellite will be the only way!
We were a major recipient of ESF funding, as we were the poorest county in the UK, and so some of that went into improving the broadband infrastructure
…unfortunately, the roads and rail links were ignored - so I suppose you can’t have everything!
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Hi @Kevan7 - as heatherthomas says it’s one of the MPNs (myeloproliferative neoplasms) and likewise I was diagnosed while they were still classed as a separate group. From what I can gather, the problem runs something like this: Whether they were blood cancers or not had been argued to & fro for years until genetic work in the early 2000s proved they were - this prompted the WHO to reclassify them all as blood cancers in 2008, with the majority of oncological & haematological associations in the world following suit in 2009, including in the UK. When it comes to doctors though (a) many GPs & health professionals completed training before then, at a time when they were not classified as cancers; and (b) the conditions are very rare so most simply never come across them to have that learning challenged. There’s simply no reason for them to stay up-to-date on such a rare condition when they have so many other things to keep abreast of which they’re far more likely to encounter. My own brother is a GP and told me it wasn’t a blood cancer, he also frequently tells me there are no symptoms and that I don’t have certain risks that I in fact do have. It’s difficult getting even him to read anything that would contradict him - as far as he’s concerned, he’s the one with the medical knowledge and that’s that, and that more or less sums up the attitude I find elsewhere. I start to dread speaking to health professionals, every exchange feels like I might have to dig in for another round of invalidating comments, arguments and me having to educate them - which very often proves the case & is really tiring & offputting. Most are unwilling to read any research articles, I guess because they think it will be non peer-reviewed, speculative or something I read in a newspaper. Anyway, that’s my take on why they might argue that! When the last GP I spoke to about trying to get the 3rd dose (who also said it wasn’t a blood cancer but at least went & looked it up when I insisted it was) actually said, “Can you email those articles to me, since they differ to the information I have here?” I got off the phone and literally whooped with shock & relief!! The fact I got the 3rd dose appointment so fast means (I presume) that he did actually read them too!
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Oh @Chapsticks I am whooooooping for you too. A celebration is in order.
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Hi @heatherthomas Yes, great news about the funding, but I still bear a resentment to Beeching in the 60’s and what he did to Devon and Cornwall’s railways
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Hi @Lelly ,
Thank you for highlighting your difficulties in accessing your 4th vaccine( booster). As both @erica & @chapsticks have highlighted our support service can certainly talk this through with you- 0808 2080 888. We fully appreciate many people in with all blood cancers have had particular difficulties in accessing their 4th vaccine through their GP and our webpages do talk more about this- How to book a covid vaccine if you have blood cancer | Blood Cancer UK.
If you are based in England you can now self declare for this 4th vaccine.
What you need to know is highlighted under the heading of ’ How to book a fourth dose’ in the linked page. For all other other nations guidance can also be seen in this page.
If after reading this @lelly, Please don’t hesitate to call us to talk it through as we appreciate it is a lot of information to take onboard.
Best Wishes, Lauran
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I sympathise. My gp.told me at the beginning of Covid outbreak I wouldn’t need to take any special precautions as Chronic lymphocytic leukaemia (CLL) ‘isn’t a proper cancer’!! …you couldn’t make it up could you 
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If it’s rare GP’s,to I suppose give them the benefit of the doubt, might not have come across it but they should do their research!With the one I have, Mycosis Fungoides, it’s estimated that the average GP would come across it every 142 years assuming that they lived that long!Ask them to read a bit of history about how serious Chronic lymphocytic leukaemia (CLL) can be because in 1980 the Shah of Iran died from it!I think that he was given incorrect medication for a number of year and then got Septicemia from an operation so there where a number of factors.
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OOOOOOhhh @Annie78 Us Chronic lymphocytic leukaemia (CLL)’ers know that Chronic lymphocytic leukaemia (CLL) IS a proper blood cancer and it means that we have compromised immune systems and have to be extra careful during Covid time.
We must stick together and look after ourselves
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@Annie78 - it’s terrible isn’t it?!! It sounds like Chronic lymphocytic leukaemia (CLL) and ET are given much the same short shrift by a lot of GPs. I’ve been told mine’s “only technically a blood cancer” and like you was told about 3 or 4 months into the pandemic that I didn’t need to shield and was being over-cautious. When I later offered some of the evidence showing exactly why we DO need additional protective measures (when I was trying to get the 3rd dose), the GP refused me the jab and said she couldn’t be expected to keep up with all her patients’ chronic conditions! I pointed out that was why I had done the research for them, because I understand my condition probably IS too rare for them to keep up-to-date with, but she still wouldn’t look at it. I did get hte dose in the end but not through her. I guess in time this will change, I think the covid pandemic is shining a bit of a light on chronic blood cancers for many GPs as it sounds like many of us have had to speak up and make ourselves heard. Ordinarily I wouldn’t bother!
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Good for you persisting @Chapsticks although you should not have to.
How are you doing and look after yourself.
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