@Sisi@ChrissyD@Willow@Lyndam@Logsie@Erica and all the Chronic myelomonocytic leukaemia (CMML) folks on the forum. I was quite taken aback at the fantastic support and comments I received from all of you. I have calmed down. The comment that was taken down reflected accurately that my concerns about low cholesterol and statin use were finally answered. In fact it was a double barrelled answer. On the one hand low cholesterol can be signal of increased disease activity and on the other hand the fuel for cell proliferation can be lowered. Once again thanks for the support it really is appreciated.
Had my routine blood test. Results good and bad. Monocytes now over 700 or over 7 depending on how you interpret results. Having a special blood test tomorrow. Itâs called (molecular diagnostics and flowcytometry) registrar said the chillblains may be responsible! Anyway now on a weekâs course of antibiotics due to a infected boil. I think I have overdone the exercise bike routine! Hate antibiotics! Hope I can rebuild my gut microbiome quickly. Fingers crossed hopefully registrar is right and the chillblains caused the rise in monocytes. Platelets 49 all other levels in range except White cells slightly above normal level. My red blood cells in normal range for the first time in years. Anyway hope all of you are doing ok. I feel quite well just a little stressed at the minute. Actually started gardening yesterday until the rain returned. I find gardening always boosts morale.
Hi @Unclejack Good to hear from you And good to hear your bloods are stable, except for your monocytes. Letâs hope like you say, itâs the chilblains that are the culprit! Gardening sounds a good distraction Iâm not a particular keen gardener myself but my husband is.
He had his routine bloods last week, thankfully all stable & his monocytes had actually gone down a bit! Just goes to show how up & down they can be!
We are waiting to get another appt to see his liver specialist, so hopefully that will come through soon. Heâs fortunately feeling well at the moment.
I think the weather is due to get a bit better, so hopefully you can get some more gardening in! Take care of yourself & best wishes
Hope the antibiotics sort out the infected boil and donât cause any gut havoc! (Sensitive topic for me!) Any infection will push up your total white cells and monocytes but hopefully will revert to your normal levels once the infection is sorted!
That blood test sounds like a Next Generation Sequencing test to check your mutational status? I think these take a while to get results but I could be wrong ?
@Sisi Pleased that all well with your husband and hope liver clinic appointment is useful.
@Unclejack Im not sure if weâve seen you at the Leukaemia Care online meetings for Chronic myelomonocytic leukaemia ('CMML')? If not, please register and come along next Thursday. It would be great to put the face to the name.Hope this is a link to details.
Hi @ChrissyD Thanks for the reminder for Thursdays online meeting. Unfortunately we wonât be able to make it this time I hope it goes well. Hopefully we can join in with the one in May Not sure if we heard back from Nick at Leukaemia Care after the last meeting? Best wishes xx
I contacted Nick re the meeting notes and he said he was still waiting for some slides from Dan Wiseman so hopefully they will come out at some point. I think itâs quite a big task to summarise the meetings to be honest though nice to receive if youâve missed a meeting.
@ChrissyD Thanks Chrissy. Weâll miss you too! Do send our apologies if you feel itâs appropriate. And thanks for the update re Nick, Iâm sure heâs a very busy man. Lovely & sunny here today. Sending you some sunshine if you havenât got any & if you have, have some more! Take care
Hi @Unclejack sorry to hear your bloods were not so good this time. Hope the antibiotics work and youâre soon feeling a lot better. I will have to google your new blood test as I have not heard of that before, I find researching anything connected to Chronic myelomonocytic leukaemia ('CMML') interesting. Iâm like Sisi I donât share your enthusiasm for gardening, leave that to my husband. I like to bake, and had a go at making the fat rascals @ChrissyD mentioned in a previous post, but they did not turn out like the picture in the post. Quite nice though. Take care
Hi everyone and thanks for the support. The results for this monocytes blood test take about 2 to 3 weeks to come back. My test will be investigated at the Nottingham hospitals not sure which one probably the city hospital. My question as always is how can you feel so well whilst being ill with Leukaemia? As yet no weight loss, no abdominal pain, first real infection in 4 years is this boil. And that is not a big deal to be honest. In fact I came very close to not taking the antibiotics! My wife said whatâs the point contacting the help line going to the walkin centre being prescribed antibiotics then not taking them and possibly ending up with a abscess or worse.! The antibiotics are 500mg flucloxacillin 7 day course. Of course sheâs right. But wouldnât it be nice to be able to see a GP? Remember the old days when you could stand at the surgery door and when that door opened the FAMILY DOCTOR saw everyone and then closed the door. Those days are long gone. Humanity takes a back seat these days. I absolutely love music. Came across a song by THE WHO which I had almost forgot about. Considering it was recorded in 1971 it really hits home. The lyrics are prophetic and fit perfectly in todayâs environment. Anyway hopefully things will normalise. Very best wishes to all Unclejack.
Hi everyone . I speak from my dirty cell at the local hospital. Took ill end of last week, my severely arthritic right knee became infected. Couldnât see G.P. no appointments. NHS 111 provided appointment at local emergency care centre. The service was excellent. He suspected infection and I was transferred to hospital 14 pound taxi trip. Anyway tests carried out and infection diagnosed but cause unknown. More tests, Numerous blood tests, chest and knee X. rays. Still no definitive diagnosis. Intravenous antibiotics and paracetamol for the muscle pains in my shoulder blade, chest and left arm, and headache. Yesterday they decided to aspirate my right knee. I think this treatment was first marketed as torture technique! . Anyway I can now walk without pain. Two large syringes of fluid removed some sent to the lab for analysis. So medical treatment good no complaints very painful that giant needle in the knee but successfully quelled the pain. Anyway I was put in a room on my own. FILTHY. Waste bin overflowing with rubbish, toilet not cleaned, this was all on the day I was admitted. Have complained but still no cleaning done.. Now the food. If you like cold porridge, and a cold cup of tea for breakfast you will be well satisfied here. Unfortunately I must be near to the drugs unit the âInmatesâarr very loud the nursing staff are dreadfully abused and threatened. Personally I have never agreed with kid gloves treatment to these types. My wife is organising a food drop so hopefully things will improve.. A report I read a few days ago suggested that the health service in the Sudan had better outcomes than the UK! I suppose they spend their budget on health care rather than the latest woke demand. Anyway I will keep posting if I can survive the situation. Hope you folks are well and stay well. All the best Unclejack.
Oh @Unclejack So sorry to hear youâre in hospital & have had horrible pain I hope youâll be discharged home very soon & get back to home comforts & your own bed. The good news is that it sounds like your pain has been relieved & you can get up & walk around. Which is very good progress. Thinking of you & sending love
Hello there @Unclejack, I know youâve previously asked me not to comment but I was shocked to read of the state of your hospital.
Thought Iâd offer some suggestions for ways you might be able to help yourself and others not deal with unacceptable âfilthyâ healthcare in future. I lost my mum to a hospital superbug and would hate others to be affected similarly.
Aside from speaking directly to the overworked-sounding staff at the hospital about the cleanliness, there are a few places you could take your complaints.
Healthwatch in your local area gives you the opportunity to offer feedback about the hospital: https://www.healthwatch.co.uk/
You could also contact your local council as their budgeting is likely affecting how well funded your local NHS is. Iâd say contact your local councillors and share your complaints as you have here.
Just to add, Iâm really pleased to read the procedures and treatments youâre undergoing have helped reduce pain enough so you can walk. Get well soon @Unclejack, Iâm glad your wife is bringing you food supplies!
Not sure where you are got your report from and I do absolutely appreciate that your current hospital experience is pretty poor but the healthcare situation in Sudan is far, far worse than UK and has been for the past few years due to the Civil War with genocide and famine continuing. So I was really surprised to read your post saying that the health outcomes are better than UK?
This is what is cited currently
âSudanâs healthcare system is in a state of collapse due to ongoing conflict, with over 70% of facilities non-functional, severe shortages of supplies, and persistent attacks on health workers. Millions lack access to essential care, causing surges in cholera, measles, and malnutrition. Despite this, international partners are working to deliver aid and implement digital health solutions.â
Hi all, thanks for the support especially Duncan I have often wandered how you are keeping and I hope you are well and stay that way. As for myself I very often put my mouth into gear before my brain!. Yes Chrissy you are correct a country in constant war is highly unlikely to have a functioning system. I canât remember were I read this article but it must have been a miss print. I know by Western standards we are not league leaders but we have to be way above war torn areas of the globe. The doctor this morning said donât be offended by this question but do you know were we are? I answered accurately. Anyway she was very thorough doctor and answered the questions I posed. To be honest several late family members went down the dementia path and it has worried me as I age. I must say I have found the 111 system very good. The doctor said he was sure it was infection related and referred me straight away.. I have had more antibiotics intravenous today and haematology are getting involved. At least the pain at the moment no longer keeps me awake. I am hoping the test results due in tomorrow may allow me home. Wishing all of you the best and great thanks for the support best wishes Unclejack.
@Sisi,@chrissyd,@logsie@erica@lyndham and all hi everyone, having the worst time imaginable very close to walking out this madhouse. The wonderful antibiotics that were prescribed to me,after destroying my gut microbiome have facilitated a dreadful case of diarrhoea I have never experienced in all my 75 years . My wife yesterday had to bring clean clothes as I made the error of falling asleep. I have had little food today cancelled my breakfast and lunch to try and reduce the problem. Still paid 7 visits so far today. Then to add to the misery I thought I had a sore throat and tongue and of course I was wrong a antibiotic fungal infection in the mouth. So now it is unpleasant trying to eat even if I wanted to. All this for a swollen knee! So far the promised oral gel hasnât arrived no surprise there. The fluid extracted from my knee showed no sign of infection when analysed. So another seven days antibiotics and 4 days in this dump. I will ask tomorrow what the dangers are of finishing this treatment and going home are. A chap in the same ward with lymphoma told me he had been waiting for his lung to be drained after being told he had about 8 weeks left, two appointments cancelled and he was outraged valuable time wasted. No wonder we consistently have very poor outcomes. Best wishes Unclejack.
And good to hear your bloods are stable, except for your monocytes. Letâs hope like you say, itâs the chilblains that are the culprit! Gardening sounds a good distraction 
Iâm not a particular keen gardener myself but my husband is.
I hope it goes well. Hopefully we can join in with the one in May 
Do send our apologies if you feel itâs appropriate. And thanks for the update re Nick, Iâm sure heâs a very busy man. Lovely & sunny here today. Sending you some sunshine if you havenât got any & if you have, have some more! 
I hope youâll be discharged home very soon & get back to home comforts & your own bed. The good news is that it sounds like your pain has been relieved & you can get up & walk around. Which is very good progress. Thinking of you & sending love 
