Sorry forgot to sign off
Unclejack
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Oh @Unclejack if itâs not one thing it is another and another conundrum for the baffled medical profession.
Thinking about you a lot
Have you got a specialist nurse contact you can have a chat to or go and show your GP?
Please do let us know how you are getting on and donât worry about signing off xx
Oh gosh @Unclejack . Youâre really going through it with your feet and legs! Heel pain sounds horrid and the unexplained bruising is a puzzle. If youâre not getting any relief or help through normal NHS channels, have you thought about seeing a podiatrist as they might be helpful? My husband has frequently suffered with heel pain caused by something called plantar fasciitis or âpolicemanâs heelâ! In his case it is caused by wearing shoes/slippers which are flat rather than raised at the heel. No help at all from GP. Solution has been special stretching exercises and wearing inserts in his shoes and slippers to raise his heel. Itâs certainly very painful! Hope things improve for you soon.
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@Unclejack sorry you are still having problems with your legs/feet. I have just celebrated my 70th birthday yesterday, a day I thought I might never see, so feel so lucky. Had a wonderful day. @chrisyD you are my inspiration as you have fought this disease for so long. I had the results of my final liver scan last Friday, and again the recommendation from the hepatologist was that I drink no more than 14 units of alcohol per week. They have put it down to a fatty liver. Much to my annoyance the gp sent me a text with lincs to cutting down on alcohol, stress management and a diet sheet for 1400 to 1800 calories. Yet again they donât look at there notes on me that I donât drink alcohol and what I weigh as Iâm only 37.9 kilos. Iâve never even met the gp who sent the text. What is the point in them have notes on a file if 5hey donât read them. Anyway rant over. Hope you are soon feeling better and on the mend uncle jack. Take care all.
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@Hi Chrissy and Erica,
I have bought the shoe inserts to raise the heel, and it has helped, And ice my foot and elevate it. The painless heavy bruising is a worry. The triage at specialist outpatients were equally puzzled. The blood tests were quite good by my standards platelets 52. The specialist nurse said could have been tight shoes and low platelet combination. Considering my right ankle damage I would have thought that would have been the one to play up. Never mind I still feel quite well and Iâm determined to start walking and exercising again. Hope you are both okay and that cold you had Chrissy has run itâs course.
Best wishes and thanks for the support it really is appreciated Unclejack.
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Hi @Lyndam
Happy 70th birthday. So glad you had a wonderful celebration! I had the same fear about not making my 60th and yet, here I am,aged 75 in June! Well done you! 
I am fuming on your behalf about that ridiculous advice. 
Personally, I would like to ask the GP and hospital to strike that from your medical record as it is completely untrue and also it is focusing clinicians away from actually finding out why you are having these abnormal test results! Grrr! Donât blame you for ranting. Sometimes it is inexplicable and inexcusable to record false information!
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Oh @Lyndam a very happy 70th birthday for yesterday, I have to say my 70th birthday was my best ever, me and several Colin the Caterpillars, large and small.
As for the outcomes from your liver scan.
Keep celebrating your birthday as long as you can is my motto, look after yourself and you can really say how it is for you on our forum.
Hi @ChrissyD I just wanted to say thank you for sending your cold in my direction.
I have never sneezed so many times in all my life, (I was 75yrs old earlier in the year) It is very much a âheadâ cold which I appreciate as I do not want it to find itâs way south to my lungs.
Yes, really look after yourself
Hi @Erica Sorry to have passed that on over the ether!! I could not believe the amount of tissues I got through with this cold. Must have destroyed a rainforest! Hope it stays up north in your head!
Last night I had an uninterrupted nightâs sleep for first time in nearly 3 weeks so a cause for celebration. Still no appetite which is really worrying me. 
It feels so unnatural not to want to eat. Everything feels like cardboard in my mouth!
Hope you soon dispatch it! 
xx
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Hi @Lyndam
Have I read that correctly? You are only 37.9 kg? Just under 6 stone ? You really donât need to be going on a diet?! Iâm speechless!
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@ChrissyD sorry that was my error having a rant. Should be 67.9 kilos.
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Hi @Lyndam
Haha! Great typo! Thatâs a bit of a difference! Youâre not the tiny lickle person I was imagining! 
So has nobody discussed with you why you have been sent a diet? It seems that the communication is very poor?
I do hope you can get this resolved soon. X
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@Erica thank you for your kind wishes. Now I am aiming for 80.
Hope your cold goes quickly.
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Hi @ChrissyD. The text I got was just on my phone with the link to alcohol consumption asking me to confirm how many units I drink each week, then another link to stress management and socialising, and the link to a diet of between 1400 & 1800 calories. I went into my gp notes on line and read the letter from the hepatologist who asked the gp to advise me not to drink more than 14 units of alcohol per week. There was no explanation from the gp why she had sent the links. I did send a very polite response again telling them I donât drink alcohol and that I may be slightly overweight but not enough to need a diet sheet. I want a little bit of weight in case the Chronic myelomonocytic leukaemia (CMML) kicks off and I need to fight it. She did respond with a reply of it was just standard procedure to send the links and I need to expect to be asked by the question again by any health professional. Looking on another scan result on my patient hospital chart I can see I have a fatty liver, but had this nearly 4 years ago and they say there is no change, so why the liver test is high, I still donât know. Anyway thank you for your birthday wishes, as I said to Erica, I am aiming for 80 now. Take care. Lynda
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Morning Lyndham and very happy birthday!
Alcohol one of my favourite liquids! I am a real ale fanatic. I did cut my consumption by about 80 per cent and now my units per week is about 8. The reason I did this was I have seen research which highlights alcohol can suppress platelets.
Best wishes unclejack
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I have been diagnosed with Chronic myelomonocytic leukaemia ('CMML') a few weeks ago.
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Hi @Violetta and welcome to the forum - youâve found a really good thread to land in. Thereâs lot of lived experience of Chronic myelomonocytic leukaemia here, and a number of wonderful Forum âveteransâ who I am sure will see your post and reach out.
In the meantime, we have information about Chronic myelomonocytic leukaemia on our website if that would be helpful. It covers diagnosis, treatment, and living well with Chronic myelomonocytic leukaemia ('CMML').
And if youâd like to talk anything through, our Support Line is there for you: 0808 2080 888 or support@bloodcancer.org.uk. Itâs staffed by our brill blood cancer nurses (who youâll see around the forum too) and so itâs really expert advice.
Take care,
Ceri - Blood Cancer UK Support Services
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Hi @Violetta
So sorry to hear about your diagnosis. Always a bit of a shock -especially when itâs such a rare disease. @Ceri_BloodCancerUK has given you a lot of resources to tap into.
I have had Chronic myelomonocytic leukaemia ('CMML') - the myelodysplastic type- for coming up 18 years and probably for a few years before diagnosis without any obvious symptoms.
I think the best way to start coming to terms is to get a good overview of the disease from a real expert. Dr Dan Wiseman from the Christie in Manchester is, in my opinion, the UKâs most knowledgeable clinician about Chronic myelomonocytic leukaemia ('CMML'). He spoke to a meeting -organised by myself for Myelodysplastic syndrome ('MDS') UK - a few years ago and here is a link to the recording. There are plenty of people on this thread and others about Chronic myelomonocytic leukaemia ('CMML') so I hope you can derive some comfort from knowing you are not alone.
Iâm copying in @Lyndam @sisi @Logsie @CathyP @Unclejack @Hellodolly as they either have or their partner has Chronic myelomonocytic leukaemia ('CMML'). Iâve probably forgotten some as well!
Leukaemia Care also hosts 4 online support meetings a year for people with Chronic myelomonocytic leukaemia ('CMML'). Here is a link to register your interest and LC will then send out invitations and reminders.
Hope this helps a bit.
Chrissy D
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Hello Violetta, ChrissyD is absolutely right you are knocked for 6 getting this diagnosis. Itâs not really a club anyone wants to join. My OH was diagnosed two years ago after a short illness that put him in hospital, and we had a rough 9 months to begin with.
Heâs been on Azacitidine injections since May 2024, not everyone is on this. Have you been told yet whether you will be on âWatch and Waitâ have you had platelet issues/transfusions?
Tell us your story, it might be that youâll get something from this.
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Hi @Violetta Welcome to the forum & our Chronic myelomonocytic leukaemia ('CMML') family. Sorry to hear of your diagnosis but please know youâre not alone. Iâm supporting my husband who was diagnosed out of the blue in October 2024. Heâs currently on watch & wait. @ChrissyD has shared some great information. This forum has been & continues to be such a huge support for me & in turn my husband. I know how scary & overwhelming the diagnosis can be, so please know you can chat here if you want to. Very best wishes to you