Oh @Willow what a calming beautiful poem, thanks so much, I have a soggy keyboard 'cose the tears are streaming down my face.
Wow. you really be kind to and look after yourself too.
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Thanks so much @Sisi I really appreciate it
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@Erica @ChrissyD
Taken aback some what at the hospital yesterday evening. I was initially led to believe it was a kidney scan. It actually turned out to be a neck, abdomen, and pelvis scan. The haemotology nurse was going to give me a callback, never happened, tried to get someone who could explain the situation, unfortunately nobody answered the phone. I suppose the scans were carried out to cover all bases, which makes sense. Very quick procedure, the chemical used for contrast gives you a hot flush and then the scan starts. It would have been nice to have had all this explained though. The phrase informed consent comes to mind.
Best wishes to all unclejack.
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Hi @Unclejack and all
It really does not sound like best practice to book somebody for a diagnostic test without telling them exactly what it is for! Or even if the request originated from haematology or one of the other departments you have had dealings with lately? Hopefully you will find out âin the fullness of timeâ and also my best hopes that nothing else suspicious is found!
We really are expected to be patient in both meanings of the word, arenât we?! 
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@Sisi @ChrissyD @Erica .
Hi Chrissy it seems all these well educated people with various degrees etc are lacking in simple common sense! As an aside I have heard nice have asked clinicians not to carry out Vit D3 blood tests unless connected to bone problems.
Seems the NHS is still in the era of childhood rickets! VitD these days is proven to be such a fantastic support to the immune system.
Anyway I wish all of us blood cancer sufferers well. Best wishes unclejack.
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Hi @Unclejack @Sisi @ChrissyD @Willow etc.I had my needle biopsy today on my kidney tumour today and home in one piece, well minus the biopsy bits.
Staff lovely and caring and we have had some laughs.
They also made a mean hot chocolate,
Anaesthetic wearing off now.
A month to wait for results now.
Sorry to hear others care has not been as good be kind to yourselves
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@Unclejack Glad to hear that your scan went ok but not so good about not being informed! I hope you get some clarification soon. Best wishes to you x
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Dear @Erica Thank you for the update. So pleased that youâre back home now. Hopefully with your feet up, with lashings of hot chocolate! 
Wish I could make you one myselfâŚsending you one now through the ether! 
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Hello @Erica. Thank you for updating us. Glad you were treated kindly and that bit is over for you. However I know the waiting and uncertainty is not at all easy. Please go gently and take care of yourself. 
Willow X
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Hello @Erica. So pleased to hear this first step is over for you and that you were well-cared for. Why so long to wait for results? So difficult to put it aside in your head for such a long time? 
When you watch these medical programmes on telly, the surgeons get results of tumour biopsies pretty immediately whilst still in operating theatre! Guess itâs staffing shortages and long waiting lists?
Still. Spring is in the air. I got all my washing dry today and the daffodils are coming up so enjoy some of that! 
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@Erica
Hi Erica another hurdle cleared. Fingers crossed for you. I had a letter from haemotology today. Bone marrow biopsy booked for next Wednesday. Seems Iâm following in your footsteps!
Best wishes unclejack.
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Dear @Aun,
I am sorry to read how worried you are. We would be unable to answer questions like this but I have sent you a direct message so we can talk in more detail.
Best Wishes,
Heidi J (Support Services Nurse)
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Hi Erica, my husband had a slow growing glass tumour on his kidney and had cryoblation treatment on it. It involves being under a scanner for more than an hour and they put a tiny tube to the tumour and froze it and then sent another fluid to it. After quite a while they were happy that it had been disappeared and do it has proved to be. I do not know if this option will be open to you but it just shows that we always imagine the worst things, the tumour growing, having a big operation, etc. this treatment is amazing and so less invasive thsn he imagined.
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Oh thanks so much @GrandmaJo, you know me and my overactive imagination.
Really glad to hear your husbands positive experience.
Really look after yourselves
Just diagnosed, midsummer 2025. I was so shocked I did a short vid, and put it on every social media iâm on. Now there are at least 2000 views on one channel alone. Everyone knows and it gets the info out there about Chronic myelomonocytic leukaemia (CMML).
@MattMatt73
Morning Matt Matt.
Great you are posting on the Forum. I was diagnosed officially with Chronic myelomonocytic leukaemia (CMML) in April 2023 after 18 months of symptoms and tests. At one stage I was told the pin prick size specks of blood on my lower legs was skin cancer and offered chemotherapy cream! I refused and asked for a biopsy. This proved it wasnât skin cancer but capillaries bleeding under the skin.
Then began many months of tests until a bone marrow biopsy revealed all. Looking back amazing that dermatologist thought it was skin cancer. I am 75 to old for stem cell transplant, still on watch and wait, my platelets hover around 45 and monocytes between 130 and 260. Neutrophils havenât been badly affected.
My full blood count has been reasonably stable. Iâm fact the worst blood count was on the day of diagnosis. I totally changed my diet after loads of research and asking questions. Still feel well and except for dodgy blood test results wouldnât know I was ill. I was devastated on day of diagnosis, then I found this forum and
started the thread Chronic myelomonocytic leukaemia (CMML) a rare diagnosis.
The brilliant Erica and Chrissy D(who is a absolute mine of information on everything Chronic myelomonocytic leukaemia (CMML) a long time patient) returned me to
a more sensible state of mind. The fact they have had blood cancer for many years gave me great optimism that all is not lost. Four years next January since the first symptoms and Iâm still stable. A Doctor Daniel Wiseman of the Christy hospital is probably the leading expert on Chronic myelomonocytic leukaemia (CMML) and has posted info on U. tube. Wishing you best wishes for the future and please post your experiences.
Unclejack.
Hi @MattMatt73
Thanks for posting your experiences. Hope youâre doing ok? There is a meeting online this afternoon for people with Chronic myelomonocytic leukaemia (CMML). You can register with leukaemia Care if youâd like to join Support Groups - Leukaemia Care
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Hi Thank you for this.
I work fill time, so I canât do that
Matthew
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Hi @MattMatt73
Sorry you cannot make it. Have you managed to find the link to Dr Dan Wiseman video about Chronic myelomonocytic leukaemia (CMML). Here it is if not. Hope youâre keeping well?
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@Lyndam @Erica @ChrissyD @Lyndam
Hi all , had a bad time the last fortnight.All started with a dreadful pain in my heel, no injury just a stabbing pain. Then a few days later bruising started to appear all over my left foot. Anyway contacted the urgent response line and referred immediately to specialist outpatients triage team. 2 blood tests taken. Platelets at 52 clotting normal, but unfortunately no explanation for the heavy bruising of left foot. Perhaps the fit of my shoes the cause, although since the sprained ankle on my right foot 3 months ago I have worn wide fitting shoes. Canât seem to get to the bottom of it. Perhaps just the low platelets the cause. Still got the heel pain, still icing it for some pain relief.
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