@Duncan was hoping for a return to an absolute Monarchy like what the treason filled colony you live in has. At least then we could have a true rebellion like what you had and replace the head of state 
Money will never fix the system, people will, like the NHS, people in it love to shop 24/7 but work weekends?
We are always a united country, we have our weather to unite us 
As for the stadium, have to try and sync our fatigue days and have a mass snooze session, big screen box set binge and ice cream under a mass duvet.
Hi, Duncan! Thank you for their welcome! Yes, there is obviously something deep inside us that makes us feel that we need to burrow āhomeā when these big things happen in our lives, even when we havenāt actually lived there for a very long while. I still read the online UK newspapers each day and follow UK politics far more closely than those of any of the countries that I have lived in, as well as going back every Christmas, so I still feel very attached to the UK.
Finding the forum here has been wonderful and reading about other peopleās experiences, especially since these blood cancers are so rare (although with enough of us to fill the cricket ground in Leicester, I understand from an expert on the matter!) is very helpful.
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@JanetF @Duncan is only in the US because he is on the run for crimes against food, he enjoys tofu shuudddeerrr
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But isnāt that a federal capital offence there?
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@JanetF @Duncan is hiding in one of those liberal west coast states, pretending to eat fish and chips when it is just tofu and battered soya beans with poor spuds as the patsy not enough tarter sauce in the world to rescue that dish!
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Oh, @clickinhistory, that sounds horrific! We must save @Duncan from that! As if having Polycythaemia vera (PV) isnāt bad enough, to be reduced to a diet of that nature is little short of horrendous! 
Is there nothing we can do to help? Food parcels? Special venesection arrangements in which blood goes out while liquidised fish and chips goes in? 
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@JanetF it gets worse, he shared photos of it on here without any warning or trigger awareness literature.
If he was not such a great overseas scientific reporter, he would walking on into Danteās sixth circle, via some very nice hiking trails he knows no doubt
What? Without trigger warnings being plastered all over them? Is that even legal these days?
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Hi @clickinhistory and @JanetF in the supportive spirit of our forum I am not feeling very comfortable with this thread and talking about another valued forum member like this.
I am wondering what a new, or existing member, to our forum would feel about our forum, that I am so proud of, reading it and not realising that you both mean it as an āin jokeā.
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Oh goodness, I have a busy weekend for a change and I log back in and youāre all being cheeky so-and-sos! Funnily enough I went for brunch and very nearly ordered the tofu fish and chipsā¦ You donāt know what youāre missing!
But I take @Ericaās point and perhaps these jokes might come across less supportively to others wanting to use the forum. Personally, Iāve heard it all since my teens about veganism so donāt take it too seriously 
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It was a very unconscious decision to join a British blood cancer forum for me, but then I did it in a kind of fog after diagnosis and am so glad I did when I realised Iād already opened up so much on here. I joined a US one too but find here I donāt need to change my language, like British colloquialisms, and can be myself more easily. Plus thereās dear @Erica!
Like you @JanetF I keep abreast of UK news and funnily enough have got some American friends onto the Guardian and other British/European sources. But of course, the world seems so much smaller these days with the ease of information and news moving around. I love being able to stay in touch with loved ones in time zones many hours awayāIām sure you know this from your UN work and living in such far-flung places!
Enjoy the forum @JanetF, I hope it comes to be as supportive for you as it is for me. Lucky us to have access to this great British information and support from our respective outposts, I say!
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Hi, @Erica! I understand what you are saying and would never intentionally offend or upset another member here (or anyone else anywhere else, for that matter!). I can see how it could come across that way, though, and I apologise for upsetting you and anyone else who was upset or offended by the exchange. Wishing you a good week ahead, Janet
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Hi, @Duncan! I have just replied to @Ericaās message re the exchange about the tofu and chips and Iām glad that you werenāt offended by it. In retrospect, I do see that it wouldnāt read well for new members, but I had already seen several exchanges between you and @clickinhistory on the subject, so I knew we were on a well-trodden path!
What a coincidence that you almost chose the tofu fish and chips yesterday! I rarely eat out here these days (something which is set to change once I move back to Spain!), but when I used to, there was a pan-Asian restaurant here that did delicious tofu - it was probably their best dish. Wishing you a good week ahead!
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Ha yes @clickinhistory seems particularly partial to reminding me of that one tofu meal! I could fill a whole exchange between us with photos of vegan foods Iāve eaten over the years but wouldnāt want to disgust him further 
How exciting to be moving to Spain, bet your tastebuds canāt wait @JanetF! I have such fond memories of my first holiday there with my now-husband showing off his fluent Spanish while we stuffed our faces full of delicious tidbits in various gorgeous plazasāmaking my own mouth water here just reminiscing! Think weāll pop to the local Spanish restaurant soon for their happy hour tapas and sangrĆa 
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There was no malice and if as the Great Terry Wogan would say about the Janet and John stories, if that is what you hear and see, that is all in your mind, not the story.
Many years ago when tofu was becoming a thing in the UK, a vegetarian friend tried to convert a group of us to eating it. I ended up with serious reaction to it and tofu joined the list of olives (fine with olive oil though), cherries and a few other things that make me personally very ill.
I have never questioned others wishes to eat alternative food groups or sources for medical or cultural reasons, but I question the need of others to be offended on the behalf of others.
I question a lot, discuss, challenge hypocrisy from all sides, be it religion, gender race or creed.
Always have, be it arrogance in so called professionals, medical or otherwise from an early age. That is the way my parents brought us up, question and challenge, never take the face value and be aware of easy slogans or stereotypes.
I have enjoyed my time on here, learnt a lot.
I have see a trend that is creeping in across the world, the term āmy truth(opinion) is more valid, more discriminated and not to be challengedā
The world can be an amazing place, people wonderful and friends found round hidden paths in the universe. The best part is free laughter from the heart and soul.
Find that and no matter how ill you get, you will always be dancing in the arms of the universe.
Good luck every one
With hindsight I must have misread the data as you read about quite a lot of people with Polycythaemia vera (PV) but hardly anyone with Mycosis Fungoides or any other T Cell Lymphoma.I think I have only read,including myself,about 4 people with T Cell Lymphoma on this site;3 with Mycosis Fungoides and 1 with PCTL NOS.Therefore I conclude that Polycythaemia vera (PV) must be significantly more common but still remaining rare.
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Hello @Kevan7, good to hear from you. How have you been?
Like you say, it does seem like Polycythaemia vera (PV) is more common than its oft-quoted ārarityā suggests, especially as so many of us surviving it comment on here. Added to closely related Essential thrombocythemia (ET) and MF, there are many Myeloproliferative neoplasms (MPN) survivors on the forum sharing our personal horror stories and treatment successes.
With your diagnosis being so rare I hope you have places to find specific information? Are there overlaps in care and treatment with other similar types of blood cancer, I wonder? Or specific organisations that help with Mycosis Fungoides/T-cell Lymphoma? I note that thereās no specific information on Blood Cancer UK, but some about Non-Hodgkin lymphoma (NHL): Non-Hodgkin lymphoma - what is it, symptoms and treatment | Blood Cancer UK
Perhaps you could ask @BloodCancerUK-SupportTeam if they have plans to share information about Mycosis Fungoides like they have for other types of blood cancer?
Your presence on the forum no doubt helps others who are yet to post but living with the same rare disorder. I bet your posts are a support to others @Kevan7, now and in the future as others find they are living with Mycosis Fungoides too. Keep posting, I say!
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Mycosis Fungoides only really overlaps with other T Cell Lymphomas and also NK Cell ones but has very little overlap with the much more common,90 percent more common!,B Cell Lymphomas.The closest relation of Mycosis Fungoides is a very serious disorder called Sezery Syndrome and at one point they thought that they were the same disease but now MF and SS are regarded as separate disorders.Also Large Cell Anaplastic T Cell Lymphoma is very closely related to MF along with a mild one called Lymphatoid Papulosis (believed to be a pre cancer sort of what keratosis is to skin cancer).PCTL NOS (Cutaneous)is related to and that was one of the diagnosises I originally had.It wouldnāt surprise me if they are all just aspects of the same underlying problem.
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The more I learn about these blood cancers, the more I need to learn it seems, @Kevan7. Such a complex set of disorders and Iām sorry you live with that specific one. Sounds like you understand it well despite the lack of information available.
So I still couldnāt find anything on the Blood Cancer UK website about Mycosis Fungoides, maybe this US equivalent, LLS.org, might lead to some helpful findings for you if you donāt mind some Americanizations: https://www.lls.org/lymphoma/non-hodgkin-lymphoma/nhl-subtypes