Hi @chrissyD. Hope you are okay. Could you please make apologies for me at the Chronic myelomonocytic leukaemia (CMML) forum tomorrow as I am unable to make this due to unforeseen circumstances. Many thanks lynda
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Hi @Lyndam So sorry you cannot make it. I will pass on your apologies. I am still suffering from this beastly chest infection so will have to mute myself when I have coughing fits!
Still donāt have any appetite and losing weight -both of which are bringing back bad memories of when my Chronic myelomonocytic leukaemia (CMML) kicked off so Iām hoping itās just the result of the chest infection and nothing going awry with my Chronic myelomonocytic leukaemia (CMML)! 
Bye for now.
Chrissy
X
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@ChrissyD Sorry to hear your chest infection is still lingering. Hope it eases soon & you can get your appetite back. Big hug to you 
Hope itās a good meeting today. Do pass on our apologies for not being able to attend today too. My husbandās Heamotology appt is bad timing today 
@Lyndam Hope all ok with you? Best wishes xxx
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Hi ChrissyD sorry you are not feeling so good. I hope it is just a blip with your health and not the Chronic myelomonocytic leukaemia (CMML) kicking of as you have done so well and are an inspiration to all of us Chronic myelomonocytic leukaemia (CMML) sufferers with the length of time you have had this disease. I seem to have deleted my email with the dates of the next Chronic myelomonocytic leukaemia (CMML) forum, do you have the date of the next one, as I donāt like missing these as they are a great help. Hope you feel better soon. Take care.
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@chrissyD. @sissy sorr ChrissyD still forget to use the @ symbol when sending a reply. Sent you a message but forgot to use it. @sissy thanks for asking, yes I am okay, had 3 scans recently as on my last visit to my haematologist my liver function test was so high
They are trying to find out why. One of the readings was as high as someone with cirrhosis of the liver. Was asked how much alcohol I drink, Iāve lost count now of how often they have asked that. I am t total and have never drunk alcohol. The annoying bit is they look at my husband who is always with me and ask him. Well so for 2 scan results have come back clear, so no idea why the reading is so high. Anyway I still feel okay so am not going to worry. Hope all is well with your husband and the hospital visit is a good one. Take care.
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Oh @ChrissyD that really sounds a rotten chest infection, and I find they really drag me down.
Oh, donāt bad memories quickly kick in and then my mind gets like a washing machine going round and round.
I will not be joining you this afternoon and I am a Chronic lymphocytic leukaemia (CLL)āer, but will miss you all.
Really be kind and look after yourself
Thanks so much for all your good wishes. @Sisi - hope your husbandās appointment goes well today. As you say, so much has happened since you first posted on here but I hope heās ( and you!) feeling more confident about his Chronic myelomonocytic leukaemia (CMML) now. So glad he didnāt go down the treatment route!
@Lyndam Youāve mentioned your liver issue before. How insulting that you are not believed and that they ask your husband for back-up confirmation! 
There is such a thing as non-alcoholic fatty liver disease so they should be thoroughly investigating all other causes and not be so hung up on the alcohol issue which is completely irrelevant in your case! Have you been referred to a liver specialist? Hope your scans continue to come back normal.
@Erica Sorry you wonāt be there today but, as you say, you donāt have the correct initials!
@Lyndam Iāll dig out the next meeting date for you - though if you registered you should be receiving reminders for all the meetings this year?
Take care all
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@Lyndam Thanks for message. How frustrating / worrying for you with your liver. Good to hear the last two scans were clear though. Letās hope it all becomes clearer for you soon. My husband is doing well thanks, slowly recovering from his op 
And back cooking in the kitchen! 
Thankfully! Iām useless with cookingā¦just like eating instead! 
Take care xx
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Next meeting 13 Nov
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@ChrissyD Thank you Yes, indeed, a lot has happened! We definitely feel a lot more confident. And a lot of thatā¦ is thanks to YOU & everyone on here 
Happy Thursday everyone! 
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Just to let you know that the meeting went well today. Around 25 attendees which is great for a rare disease like Chronic myelomonocytic leukaemia (CMML) and lots of recently diagnosed people as well as some familiar faces. So important for newly-diagnosed people to get support of others and share experiences and feedback poll at the end confirmed it was a good experience. Nick York will be sending out a summary shortly and hoping we shall nab Dan Wiseman for the next session!
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@ChrissyD Thank you so much for the update, much appreciated & so glad to hear the meeting was so well attended And like you say, particularly for the newly diagnosed. I look forward to receiving Nicks overview. Thanks for that. Was Dan Wiseman not able to attend? Or are you hoping heāll attend the next meeting also? 
xx
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@chrissyD. Thank you very much for the update and the date of the next forum. In one way it is good that the number of people with Chronic myelomonocytic leukaemia (CMML) are joining in, but in another way it means more people with Chronic myelomonocytic leukaemia (CMML), which is not so good. I do get a bit disgruntled when they ask my husband if I drink alcohol, and I do think you may be right, it may be a fatty liver as I have a sweet tooth and love chocolate, cake and biscuits, but not to keen on pastry and crisps. And yes they do seem to have referred me to a liver specialist. When I last saw my haematologist it was a different one to normal, and he did not advise he wanted any scans done. But then I started getting emails from my hospital chart advising of upcoming appointments. Then I had a postal letter asking me to call to arrange an appointment to see a specialist. When I rang them I was told it would take a while as my hepatologist and dietitian had requested I see this one specialist. That was a surprise as I didnāt even know I had either. Well I must not grumble as I am being well checked over. Hope you are soon on the mend.
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Hi @Sisi Unfortunately, because he is so busy, we cannot get Dan to attend every Chronic myelomonocytic leukaemia (CMML) meeting and, to be honest, the team members he sent along earlier this year, were not as easy to understand as Dan himself! Just hoping he can make the next one. Thereās a lot of benefit in the peer support though, in addition to gaining knowledge about the disease and its current treatments. 
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Hi @Lyndam
Iām hopeful that the increase in numbers at the meeting isnāt because more people are being diagnosed but because itās getting easier for people when diagnosed to track down sources of support and information. Given that only 650 people a year are diagnosed, the 2 dozen people at the meeting today are the tip of the iceberg! So there are still hundreds who are either not looking for or finding any support. Not everybody needs it I guess but I still think itās so helpful when first diagnosed to know you are not alone?
Yes I did find a good NHS article on non-alcoholic liver disease and it mentioned links to diabetes so itās good that it is being investigated so that it can be sorted! Or whatever else might be the cause! I know of somebody else who was a non-drinker and found to have a fatty liver! Non-alcoholic fatty liver disease (NAFLD) - NHS
I hope you eventually get to see the specialist who has been recommended -even if itās a mystery to you as to how you are getting referred! The NHS moves in mysterious ways sometimes!
Let us know how you get on.
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@ChrissyD Yes letās hope he can join in next time 
Like you say, so very important to have peer support. I donāt know where Iād have been or beā¦without it! Thanks again
P.S Appt went well today, bloods are stable ish ( only monocytes have gone up a tiny bit ) And heās due for another BMB in a few weeks, to see whatās going on there. And then vascular follow up on Monday 
Weāre not getting bored!
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Hi @Sisi
Good news about your husbandās todayās appointment - considering all the upheaval on the stroke front and his surgery, itās so good that the Chronic myelomonocytic leukaemia (CMML) is behaving itself! Hope the BMB isnāt too uncomfortable and confirms stability.
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@ChrissyD Thank you
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Hi ChrissyD yes I agree with you it is only the tip on the iceberg of Chronic myelomonocytic leukaemia (CMML) suffererās, and this web site is such a support. Thank you for the link to nfld it was very interesting. If I have this it may well be other health problems causing it. Take care.
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