@ChrissyD Thank you, yes it was a great relief to get the all clear. And thanks so much for the info, that’s much appreciated. Believe it or not I haven’t done much research on diverticular disease. The hospital gave us some good info after the colonoscopy from patient.info which was quite good. I will definitely read up
So sorry to hear about your IBS Must be very frustrating for you But good to hear a sample is being sent off for analysis. And yes Immodium isn’t the answer long term is it..the nurse said that to us today.
Sending you lots of love & hope you can get some answers soon. Please send some apples through the Internet, had to buy mine today to make an apple crumble
Yes @Sisi that is good news, we often use the word rollercoaster journey on here but you two certainly have been on one. I hope your husband gets the face to face appointment soon.
@ChrissyD I love the name ‘Guts UK’ as a source of information. Your IBS flare ups must really effect your life
Just to make your mouths water I had an apple and blueberry crumble and custard today at a friends birthday lunch.
I am having a lot of trouble writing this email without using unfortunate puns.
@ChrissyD@Erica@Sisi@unclejack hi all just an update on my recent visit to the haematologist. It was good news, my bone marrow biopsy showed no change in Chronic myelomonocytic leukaemia (CMML) from 4 years ago when first diagnosed. My bloods have returned to the previous levels so haematology are happy with them and think it was just a blip when they changed. The only 5hing they are concerned with is my liver readings, and again asked about alcohol. Now just waiting to see a liver specialist. I hope you are all as well as can be expected. Has a wonderful weekend in London at the beginning of the month and hubby and I are off to Torquay next week. Just hope the weather holds. Take care. Lynda
@Lyndam Hello! Oh SO good to hear your bone marrow biopsy results were positive & things are stable for you re Chronic myelomonocytic leukaemia (CMML). Let’s hope you’ll get some answers soon as to what going on with your liver. Enjoy your time away in Torquay, rain or shine! Best wishes
So great to hear your Chronic myelomonocytic leukaemia (CMML) counts are now stable. When will that haematologist stop banging on about the alcohol being the cause of your liver results being abnormal?! You’ve told them so many times that you don’t drink! At least when you get the liver specialist appointment you can start off from the outset by telling him/her that you do not drink so could he/she please start looking at other possible causes! You are more patient than I would be, having had the alcohol suggestion made so many times!!
Glad you had a good time in London and enjoy the sunny South coast.
I have used the good weather to spread some horse manure on the allotment for the winter! Very satisfying to me for some bizarre reason! x
Excellent news about your bone marrow result. My Chronic myelomonocytic leukaemia (Chronic myelomonocytic leukaemia (CMML)) diagnosis was a very short time behind yours, Last march I had some heavy night sweats so my consultant had a bone marrow test carried out. The consultant said the result was remarkable! No progression, everything stable which was great to hear. Admittedly I have had some heavy bruising on my left foot and arms during the summer but tests suggested my platelets were low as usual, although at last test they had recovered a little to 59. Let all of us carry on these conversations for many years to come. On a final note I have my next routine blood test tomorrow AM. Including a Vit D test. Luckily my haemotologist checks it regularly. According to research Vit D levels are absolutely crucial in all illness. Optimal levels are difficult to sustain due to our northern climate. All my best wishes to yourself and all of the gang enduring Chronic myelomonocytic leukaemia (CMML)
@Unclejack hi unclejack, thank you for your good wishes. Yes I agree that vit D is very important, maybe that is what is keeping us from progressing the disease. I have taken it for at least 5 years as a supplement. Hope your blood test goes okay. Lynda
Evening Lyndham. I agree. In my case it was research highlighted by Professor Angus Dalglish that alerted me to the tremendous value of Vit D. He highlighted one of his American colleagues who trialing a treatment for pancreatic cancer was having little response until he recommended Vit D levels to be checked and increased. Apparently the result was amazing. The treatment was very successful. I also supplement D3 and eat foods rich in Vit K2 which apparently helps Vit D3 to get to the right place. At the minute still on watch and wait so no chance of interacting with medications. I think being cautious and asking medical team questions about diet is always a good idea.
@ChrissyD@Sisi@Unclejack@Lyndam@Erica hi all! It’s been a while for me so I thought I’d just check in. Never a dull moment in anyone’s life it seems! Sisi I hope your husband is ok? Uncle Jack I hope things have calmed down for you since your nasty fall? Chrissy, Lynda and Erica, hoping all is well? My husband is well although seems more tired these days but that might just be his age and a stressful job (finance)? He did complain of a sore throat and a slight wheeze. The doc sent him for an X-ray which showed enlarged lymph nodes and requested a CT with contrast. Of course you think the worse but we got the results and nothing sinister going on. Just probably a result of an infection. He remains on 3 monthly blood work which remains stable. Just low platelets which has always been the case. He still takes papaya leaf extract, vit D, vit C, fish oil, green tea and eats healthy. I do worry about his stress levels. He works for himself so even more stressful! Oh well, still need to pay the bills and get our kids through uni! Onwards and upwards! Sending lots of love and best wishes to you all
Hello @Logsie Lovely to hear from you & glad your husband is doing ok & nothing sinister was flagged up with his CT scan. Sometimes it feels like just when you’ve got used to managing one health condition, another one pops up! My husband is doing well at the moment thanks slowly recovering from his surgery in June & his tummy seems to have settled now. He’s lost a fair bit of weight & muscle mass, although we’ve realised he’s actually a healthy weight now, after being overweight for sometime So he’s busy trying to eat well & get a bit of strength back.
Thanks for updates Logsie and Sisi. It must be so tough on your husband Logsie - doing a stressful job on top of worrying about health issues. I feel very lucky that I could afford to retire early when I was diagnosed. Carried on for a couple of years and then I thought what the heck, you never know what’s around the corner and jacked it in!
Glad to hear your husband’s digestive issues seem to have calmed down Sisi. Has he altered anything to make that happen diet-wise?
I’m still struggling with stratospheric IBS symptoms and rather annoyed that my GP practice triaged me for an appointment 10 days after my e-consult request! It’s now scheduled for Saturday and the GP won’t know what on earth is going on when I produce my graphs of symptom occurrences! Bet he doesn’t get many patients who keep spreadsheets! Hopefully I will get referred back to the hospital
Have you heard about your hepatology appointment yet, Lynda?
Hi @ChrissyD Sorry to hear your IBS symptoms are still ongoing. I really hope you can get some respite soon & appt goes well on Saturday. I’m sure you will impress your GP with your spreadsheet prowess!
My husband has been upping his fibre a bit but not changed anything much & ofcourse trying to keep up with good water intake. Perhaps it was just a bad flare up before?
Covid & flu vaccines for him today ( I can only get flu via NHS, which is annoying ) & then he’s got Neurology follow up appt on Monday, from his TIA’s that he had….its all go!
Glad to hear your husband’s symptoms have settled down without too much of a drastic change to diet.
You’re both kept busy with all these check ups but it’s great that he is being monitored so well.
I heard some great news yesterday that Dr Dan Wiseman is going to speak at the next Leukaemia care Chronic myelomonocytic leukaemia (CMML) SUPPORT meeting in November. I’ll put out a full message with more details soon but hopefully you will all see this. I’m hoping that they will record the meeting so it can be a website resource for anybody who missed the meeting or for newly-diagnosed people. LC’s revised CMMLbooklet is soon to be launched too so that will be really helpful.
I cut back about 3 metres of lavender hedge on the allotment today so I’m nicely relaxed and sleepy! I could go into business selling lavender sleep pouches!
Morning all Chronic myelomonocytic leukaemia (CMML) patients on our forum. Yesterday I read my latest blood test results on the patient knows best section of NHS app. Most results were stable in fact quite good. The two flies in the ointment were the usual suspects platelets had dropped to 50 which is basically on trend, but monocytes had doubled to 431the highest reading I have had. I feel well, bruises have disappeared all swelling of ankle and lower leg has settled. Actually achieved first walk since my ankle injury last may (4 miles) weight stable, night sweats disappeared. Today found out my arthritic knees won’t be recieving steroids shots due to the Chronic myelomonocytic leukaemia (CMML). To risky! Never mind I will walk, and exercise untill I can’t. Still remain positive. I hope all of we Chronic myelomonocytic leukaemia (CMML) patients can look forward to Christmas with optimism. My 75th birthday boxing day always enjoy Christmas, will have a little alcohol even though platelets don’t like alcohol! Best wishes to all and stay positive unclejack.
Hi @ChrissyD Thankyou, yes we’re certainly not getting bored And Thankyou for sharing that news about Dan Wiseman at the next support meeting. Brilliant news Is it the 13th Nov one? And yes please to some lavender!
Hi @Unclejack Great to hear from you & glad to hear you’ve been out walking & your leg & ankle have now settled. My husbands monocytes were about 4 on his last reading, the highest they’ve been. And yes, here’s to keeping positive. This forum & everyone on here, certainly keep me going Take care x
yes it was a great relief to get the all clear. And thanks so much for the info, that’s much appreciated. Believe it or not I haven’t done much research on diverticular disease. The hospital gave us some good info after the colonoscopy from patient.info which was quite good. I will definitely read up 
Must be very frustrating for you 
But good to hear a sample is being sent off for analysis. And yes Immodium isn’t the answer long term is it..the nurse said that to us today.
Yes, it’s certainly been quite a year so far! I hope all is ok with you? I now have crumble & custard envy! 
slowly recovering from his surgery in June & his tummy seems to have settled now. He’s lost a fair bit of weight & muscle mass, although we’ve realised he’s actually a healthy weight now, after being overweight for sometime 
So he’s busy trying to eat well & get a bit of strength back.
Sorry to hear your IBS symptoms are still ongoing. I really hope you can get some respite soon & appt goes well on Saturday. I’m sure you will impress your GP with your spreadsheet prowess! 
pouches! 
Is it the 13th Nov one? And yes please to some lavender! 