Hi @Unclejack and @Silke all I shall say is I am certainly not cleverer than you. but as for catching colds I just think we are very complex unique beings.
As for your thoughts in the second half of your post one of the joys, in my mind, of the forum is we do not discuss politics and advise everyone to check out proposed changes to diets with our medical teams first who know our whole medical histories.
Yes, best wishes to all
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@ChrissyD
@Erica
Hi. Erica and Chrissy
I have developed a swollen finger, at first I thought it was chilblain, rather red and shiny. Then I thought it was arthritis as the joint effected was quite stiff. I wonder if it could be related to Chronic myelomonocytic leukaemia (CMML)? Although arthritis runs in the family so I am hoping itâs just normal arthritis.
Have you experienced anything like this or have heard of anything similar.? Difficult to get appointment with G.P. as the one who looks after me only works Monday and Tuesday.
Havenât had a face to face for eighteen months at haematology
perhaps I should ask for one. Blood test next Thursday a then telephone appointment on the 28th of February. I wonder if the forum nurses may know if this is a symptom?
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Hi @Unclejack,
Sorry to hear about your swollen finger. It sounds like you might have an infection especially as your finger is red and swollen. Having Chronic myelomonocytic leukaemia (CMML) increases your risk of infection so I would encourage you to get in contact with your haematology team and letting them know.
Take care
Fiona (support services nurse)
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Sorry to hear about you swollen, red and shiny digit @Unclejack and I am so glad @Fiona_BloodCancerUK responded to you.
If itâs not one thing it is another and I was really concerned when you did not sign off your post in your usual fashion.
I reckon better safe than sorry is a good saying.
Really look after yourself and please do let us know how you get on.
@Erica @ Fiona blood cancer
Hi Erica
Thanks so much for your sound advice and Fiona. I had a chat with NHS 111 last night and a really nice Doctor rang me back and we had a good chat. So I will be contacting my haematology team . Strangely this morning when I arose my fingers were much improved,
Hopefully things are settling without intervention. Probably like everyone else I dread hospital visits and blood tests. And the thought of antibiotics fills me with fear. I know that in serious circumstances they are absolute life savers but I think we tend to fall back on them at the earliest opportunity. Since my diagnosis I have tried to avoid medication. I have only taken paracetamol very occasionally. As soon as I lose my watch and wait status my opinions will change. I am very lucky that I havenât had any severe infections since diagnosis. You may remember me bragging that I havenât caught a cold for ages, well I eventually caught my wifeâs horrendous cold! It mainly affected my voice!
I could do an exact replica of the late Lee Marvin singing wondering star. Luckily the cold disappeared after a week or so. The wifeâs lasted nearly a month! Anyway thanks so much for your support.
Best wishes unclejack.
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Hey @Unclejack was it one digit or up to a handful?
I picked up on you saying about your cold as my son (51yrs old) has had similar throat symptoms to a cold and he is supposed to be having 2 impacted wisdom teeth under general anaesthetic at the hospital on Friday.
He has waited a year for this op.
Oh Wandering Star I am singing it as I type and can see Lee Marvin in my mind.
Joking apart I agree with you in one way as I try to avoid the over use of antibiotics or painkillers, but I am very grateful for them when really needed.
As you know I always believe in letting my medical team know of every thing that happens to me.
Please do let us know what your haematology team say and really look after yourself
@ChrissyD @Erica .
Hi Erica Chrissy D.
Having a stressful time. Had my routine consultation Friday with a new doctor. Platelets had fell to 35. I also mentioned the night sweats I had experienced recently. Other blood levels some normal some abnormal but stable. He seemed a bit concerned, scratching the back of his head. Had another blood test. He also mentioned he was considering another bone marrow test. Anyway had a phonecall about 4pm from the c.t.scanner department requesting I attend for a CT scan of kidneys at 5.20 pm tomorrow. I nearly fell out of my chair.
Itâs one of those scans were they use a contrast.
I have been trying to contact haematology since but no one has answered the phone. I am worried and a bit disappointed that haematology hadnât contacted me to explain what was happening! I logged into Dr Google and discovered that leukemia can infiltrate the kidneys perhaps somebody else on the forum has had a similar experience and I would really appreciate a response. I havenât had hardly any symptoms that I am aware of, no bleeding, weight loss, he checked my spleen , lymph nodes etc, and absolutely no infections except for a mild cold a few weeks ago.and couldnât find any problems in fact he said my spleen was ok in fact difficult to find!
I check myself regularly so I would have been surprised if anything was abnormal. It would have been nice though if someone had explained why a kidney scan was necessary.
I drink very little these days but will have a drink tonight to calm down. It would have been nice to have a explanation about the scan though.
Sorry I am always going on about my own problems and not asking how you are. I hope you are feeling ok.
Thanks again for all the support best wishes unclejack.
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Hi @Unclejack @Erica
Sorry to hear about your platelets dropping and I quite understand why you were so bemused to receive an appointment for a CT scan of your kidneys without being told in advance why it was needed? Seems to be very poor communication if that request was made by your haematology team on Friday? At least when you go tomorrow you can ask who requested it and why-if the CT team are able to divulge that?! 
I have always been asked to say whether I am having night sweats as I think that is a flag symptom for leukaemias. When was your last bone marrow biopsy done?
Hope you get some answers tomorrow.
Chrissy
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Oh @Unclejack and @ChrissyD and all.
I am so glad that you are posting honestly and yes, you must be going through a very stressful time. I hate poor communication.
It is, for me, suddenly the rug being pulled from under me and feeling out of control and not knowing whatâs going on and what will be going on.
Weirdly, I am going through a similar rollercoaster.
When I had all the heart problems and tests last summer a scan showed up a cyst on my kidney, which was a shock.
I had 6mthly tests recently and then saw the urologist last Tuesday.
Yes, I had all my questions written down ready.
I thought it was weird that the appointment was in the cancer unit of our hospital.
I get in to his office and he had a nurse there and then his wording was evasive so I said are you talking about a tumour that has increased in size between tests.
âEr, well yesâ, he said,
So my written questions about the cyst went out the window.
He then talked about testing options, treatment options and if he said once he said a dozen times âoh, of course at your age and with your heart problemsâ tut, tutting.
Anyway I then went and had more bloods taken and by the time I got home had a text with my next appointment with him and then a phone call with a date for a needle biopsy on this Wednesday and scans with coloured dyes etc.
Anyway, as usual, I have gone numb.
I shall stick to the hot chocolate tonight, although I always eat on my emotions.
We are always here to support each other and everyone on our forum
Be kind to yourself and we await the next installment, @Unclejack
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Hi @Erica
Replying to you as you give so much comfort to others on this forum so Iâm now offering you some for yourself. 
Iâm so sorry to hear (yet again!) about such poor communication and that you had to take control in order to find out what the doctor was clearly struggling to be straightforward about. 
You now find yourself on another type of medical diagnostic process which is always a bit stressful, especially the waiting for results.
As you yourself would say to people on this Forum, try not to worry, one step at a time and of course wishing you all the best. Hope the hot choc helps. 
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Oh @Unclejack I quite understand the stress of all this for you. If only communication from these medics was better it would save so much unnecessary worry. Thinking of you very much. You have no need to apologise for writing about your own problems. That is what this forum is all about. Sorry I donât have any answers for you but I just wanted to say I understand what these things are like and how itâs hard to get it out of your mind. I wish you well for the scan and I hope you get some answers soon. Willow x
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Oh @Erica. I am so sorry to hear what you are going through. You already have more than enough on your plate! Thank you for sharing so that we can hopefully give you back some of the support you always give to us. I hope the needle biopsy isnât too painful or unpleasant and that you can get some reassurance from kind people caring for you. As a good friend often says to me âGo Gently âŚâ Thinking of you very much. Willow x
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Hi @Willow and @ChrissyD, thanks so much for your lovely words both of you, I will keep you updated although my appointment with the consultant isnât till the beginning of April and cheers to you @Unclejack
@ChrissyD @Erica
hi Chrissy and Erica
Thanks ever so much for your replies. As you say Erica we seem to be on a parallel path. I have had problems with kidney stones for over 40 years luckily few and far between, the pain is unbelievable. Cysts were spotted on my left kidney about 12 years ago after a kidney stone c.t.scan at the same time a cyst on my liver was spotted. As far as I am aware they were harmless and needed no further action. Thatâs what I was told. I hope that both of us can soon have all our concerns addressed. Chrissy my bone marrow biopsy was carried out in April 2023 but was incomplete as not enough material was removed. My doctor immediately arranged another biopsy but when I arrived for the procedure was told the consultant said it was not necessary. The next time I saw my doctor she asked me why I hadnât had the second biopsy. I explained her boss had cancelled it when I arrived at the hospital. At this she was extremely enraged and disappeared to confront the consultant! Anyway never did have that second biopsy. I didnât realise many things about Chronic myelomonocytic leukaemia (CMML) my current cholesterol stands at 1.7 and I still have to take 40mg statin every day.
My GP said she had not seen any patient with cholesterol that low and contacted haemotology for advice and they replied to carry on taking statins. I really do not like taking statins at all but I follow orders. My recent t.i.a.my second one, according to my stroke doctor had some features that threw a little doubt on the diagnosis. My blood tests forms always says PROBABLY Chronic myelomonocytic leukaemia (CMML)1. So that suggests a small doubt over the diagnosis. Perhaps I take probably to literally. Perhaps with Chronic myelomonocytic leukaemia (CMML) being rare there isnât a absolute in the diagnosis. I feel well and my night sweats have subsided the last three nights, see what the CT scan reveals. My swollen shiny red fingers have settled I think it was chilblains. Doctors couldnât identify what it was. Wouldnât it be nice if we woke up tomorrow healthy. Anyway thanks for the support.
Best wishes unclejack.
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@ Willow
Hi Willow , you are correct. If only some doctors realised that communication can make our quality of life could be so much better. I am lucky having a excellent G.P. who genuinely cares.
Thanks for your support best wishes unclejack.
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Here is another poem of mine, hopefully of encouragement at this time âŚ
GO GENTLY
Go gently
With yourself.
Go carefully
With your health.
Go peacefully
Each step you take.
Go wisely
Each choice you make.
Go kindly
With compassion.
Go bravely
Taking action.
Go thoughtfully
Being true.
Go graciously
In all you do.
Go calmly
Through your day.
Go faithfully
As you pray.
Go securely
In your God.
Go humbly
In his love.
Willow x
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@Willow
Well said! The mind certainly gets very focused confronting such dreadful problems.
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Sorry to read your recent update @Unclejack
Just wanted to wish you well with the CT scan tomorrow. Will be thinking of you. Best wishes x
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Dear @Erica Like others have said, you support SO many of us here, just want to send you my love & support. We are all here for each other. Thinking of you xx Take care xx
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