@Unclejack Lovely to hear from you & for your best wishes, thankyou. Yes seems to be lots going on for everyone here 
. Like you say, itâs a great support we have. I value it a lot! 
Sorry to hear about your bruising & ankles. But it sounds like your bloods are behaving themselves so thatâs positive. And great you are getting on your exercise bike 
Hope your wifeâs sneezing eases, it is odd how some people do suddenly start suffering from hayfever. Best wishes to you also 
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Hi @Unclejack @Sisi @Logsie @Lyndam @Erica
It seems that Bank Holidays are a hitherto undocumented medical risk! 
@Unclejack you are becoming a âmedical man of mysteryâ with all your unusual symptoms!. Hoping for a gradual recovery for you. 
@Sisi Oh my. Forcing children to use those awful French toilets must surely be classed as child cruelty?!Your poor sister -but your 10year old self didnât sound phased by it?! 
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@ChrissyD French toilets = child cruelty 
Yes, I wasnât phased at all by them. And wondered why my sister was blubbing!
And yes, please wrap yourself up in cotton wool today!
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Hi @Lyndam I have been thinking and you really show so clearly how we all have to take responsibility for our own conditions.
Look after yourself
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Oh @Lyndam as @Sisi says I have also heard great things about Tina the musical and what a 70th birthday treat and with your family. Have a very Happy Birthday and enjoy
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Hi @Sisi @Logsie @ChrissyD @Lyndam @Willow @Unclejack
Hi All I dare not start talking about public loos, it is a continual problem for me
However actually a neighbouring borough to us has an agreement with most of their pubs to let members of the public in need to use them.
Also I have a Radar key. âThe RADAR Key Scheme or National Key Scheme (NKS) offers disabled people independent access to approx 10,000 locked public toilets around the country.â
We are covered under the Disability Discrimination Act or equiv as disabled.The keys can be purchased on the internet for a fee of under ÂŁ10.00 from reputable sites.
I hope this helps
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@Erica thank you Erica, and yes we do have to take some responsibility for our own health. Having said that I do have a wonderful hospital, Addenbrooks, and there my chart is extremely good. Take care Erica and stay as well as you can.
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@Erica Oh Thankyou for this info. I will check it out!
Morning Chrissy
Woke up this morning with a swollen little finger (please donât laugh). Since I had that dreadful ankle sprain in May strange things have happened one after the other. Perhaps the shock caused a reaction. The mystery is my bloods are stable and I feel quite well except for my arthritic knees and my left heel which makes walking painful. I report these problems hoping that someone has had a similar experience and can explain it. Never mind my Chronic myelomonocytic leukaemia (CMML) symptoms started three and a half years ago and my bloods are actually slightly better than then. 75 next boxing day so Iâm not doing to bad. And certainly better than many. Hoping that all our friends see improvement very soon.
Bestwishes unclejack.
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@Sisi @Unclejack @Logsie @Lyndam @Erica
Morning All. Hope all of you survived the Bank Holiday of Doom!!
@lyndam Have a great time celebrating your Big Birthday.
@unclejack Oh dear. Another mystery. Have you scratched or damaged your little finger in any way? Keep a close eye on it and yourself for signs of infection?
@lyndam I also have a great nurse administrator on My Chart who is so prompt and efficient with his responses. Maybe the same one? A real star 
.
Back to the tomatoes 
after my social weekend!
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Afternoon everyone! @ChrissyD @Erica @Lyndam @Unclejack @Logsie 
Survived the bank holiday! 
Without having to visit A&E!
Saw GP this morning with my husband. He confirmed he hasnât got a bacterial infection causing his diarrhoea ( sorry if too much info 
) And have referred him for colonoscopy to see whatâs going on. Should hear in the next few days. In the meantime he doesnât have to restrict his diet. He was going a bit mad with eating bland foods poor thing. He loves cooking also, so itâs been quite tricky for him. The GP said just donât have a vindaloo! 
@unclejack hope your finger gets better!
@Lyndam @ChrissyD I have MyChart envy! Sadly our hospitals donât use that system 
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Hi @Sisi @Lyndam @Erica @Logsie @Unclejack
Glad you made it through the Bank Holiday without an A and E visit @Sisi . My sisterâs 18month old grandchild decided to jump off the top bunk bed () on the morning of her birthday picnic and was sick afterwards so that was an A and E visit to check for concussion! Kids!
Hopefully not too long a wait for your husband and at least not having to eat the bland foods. 
Yes wouldnât it be wonderful if the NHS had some really joined-up online support for patients?! Hospital and GP systems often donât âspeakâ to each other. It is thankfully much improved since the bad old days when everything was filtered by what the doctor decided to impart to a patient -as though we shouldnât know what was happening to our own bodies! 
When they wouldnât tell patients that they had cancer! But would tell the family! Hopeful of improvements but new initiatives move very slowly in the NHS. 
@ChrissyD Oh no! We jinxed it about the bank holiday A&E visits! Sorry to hear about your sisters grandchild, hope theyâre doing ok. Couldnât have been nice for your sister
Jumping off a bunk bed reminds me of my friends daughter who decided to jump off her bunk bed, broke her leg & the hospital plastered up the wrong leg!!! 
They didnât realise until the daughter kept complaining her leg still hurt!
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Oh no. Thank goodness it was only a plastering done on the wrong leg! Could have been so much worse! Honestly, you have to be on the case all the time!
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Hi @Sisi
Just wondering how your husband is doing and whether heâs had all the investigations completed re his bowel problems? And the appointment with Dan Wiseman?
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@ChrissyD Hi! Thanks so much for your message. I was only just about to update on here! 
My husband had his colonoscopy on Sunday (crikey the laxatives ! ) They gave us an initial report that day which has flagged up âDiverticular disease associated colitisâ. So lots of inflammation. They took biopsies so they can confirm the type of inflammation and we have a follow up telephone call end of next week. So hopefully weâll get some definite answers then, as to how itâs managed. No mention of anything sinister or tumors etc 
Fortunately since Sunday his symptoms have really improved. Perhaps thatâs because he had a day of fasting & then the laxatives! So his body hasnât had to do much!
We had a great chat with Dan Wiseman yesterday morning. So good to talk with him. He didnât think there was any direct link with Chronic myelomonocytic leukaemia (CMML) & his gastric / bowel issues ( I did ask, ask, as was thinking of you too! ) And he said that unfortunately diverticular disease & the furring up of arteries re his TIAâs, are sadly very common with age
Re Chronic myelomonocytic leukaemia (CMML), he was happy & suggested that we continue with âwatch & waitâ. Bloods are looking stable. The recent bone marrow biopsy results I shared with him also. These showed a a slight or small progression but he said the results were âencouragingâ, which was great to hear. We are still waiting the gene panel to come back, which ofcourse may suggest a change or ( hopefully not! ) additional mutations. He didnât seemed too worried about them but was keen for us to share those results when we they come in.
We also spoke a little bit about drugs / trials. Nothing specifically pertinent to my husband but said that the results / news of the AMMO trial would be out soon. He was happy & suggested we chat again in 6 months time.
So so grateful we have his input, which was all down to you Chrissy!
Next appt with Kingston is mid / end of October.
Thatâs about it for now. Sorry for long message! Hope all is ok with you?
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Hi @Sisi
So glad to hear that colonoscopy is over and done with! Iâm on an IBS Chat Forum and the tales of the pre-prep sound pretty ghastly. 
Somebody Iâm in touch with said that her bowel problems seemed to improve for quite a while after the colonoscopy so maybe a good âclear outâ has some benefits?! At least heâs having a little bit of respite and hope you hear soon about a diagnosis and possible treatment. Why these things kick off is such a mystery but I hope that there can be something to treat it which helps him return to a less anxious life.
Pleased too to hear of your very positive consultation with Dan. 
To be honest, whatever might be found on the gene sequencing, there really arenât any other options for treatment for Chronic myelomonocytic leukaemia (CMML) -other than Azacitidine or Hydroxycarbamide. Stem cell transplant is only for higher risk types and generally not very successful for Chronic myelomonocytic leukaemia (CMML). Iâve had about 4 NGS blood tests and the mutations that were found (KRAS and KIT) seem to be stable- plus nobody knows if theyâve been there right from the start as the NGS wasnât available 17 years ago so their presence might be insignificant? Neither are on the âdanger listâ for Chronic myelomonocytic leukaemia (CMML) so they donât alter my risk score.
Weâve been on holiday this week up in Suffolk and had some lovely weather and nice walks -sadly spoiled by 5 days of IBS symptoms which I thought Iâd solved by starting taking something called Silicolgel which seemed to work miracles for 3 weeks and then stopped working!
Hopefully when I get home it might settle down again. Who knows?! The IBS has a far worse effect on my quality of life than the flipping Leukaemia! Moan moan!
Looking forward to getting home and catching up with our kids and grandchildren. Plus all the autumn tidying up jobs on the allotment - hoping the weather holds.
Take care all x
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@ChrissyD Thank you And yes, itâs interesting you mention about the colonoscopy & clear out. Perhaps one benefit from all that âprep workâ!
Dan Wiseman as ever, was such a tonic & reassuring to talk to.
So sorry to hear youâve been suffering so much with your IBS Especially whilst youâve been away. Letâs hope once youâre home like you say, you get a bit of respite.
Thanks so much for thinking of us
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@ChrissyD Hello! Hope all ok with you? Just a little update. Had confirmation today via telephone appt, that my husbands had the all clear re bowel cancer investigations 
Biopsy results confirmed the diverticular disease, mild inflammation & haemorrhoids. No colitis or IBD. Heâs had a great week since the colonoscopy & been symptom free but has had a few occasions the last couple of days where heâs had to rush off to the toilet again, so hospital are booking him in for a face to face appt, for some time soon. Hopefully we can discuss management etc. Interestingly they said he should up his fibre & fluid intake. I always thought more fibre would make it worse but apparently the reason heâs got the diverticular, is prob not enough fibre!
Hope your IBS has settled a bit? And all is ok with you?
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Hi @Sisi
Oh thatâs such great news getting the all clear re bowel cancer! You must both be very relieved 
. These bowel changes are both very embarrassing and inconvenient (no pun intended!) and very worrying.
Yes diverticular disease is said to be caused by lack of fibre and it seems counter-intuitive to increase fibre for bowel problems when you have diarrhoea but it seems to work for a lot of people.Knowing you, youâre probably already in âresearch modeâ but this charity has useful information about the disease, treatment and myths!
Iâm still struggling with the IBS flare up! 7 bouts a day since Friday is just taking the mickey! GP agreed to sending off a sample yesterday but I doubt that the results will come back before next Monday. I somehow doubt that any infection will be found but thereâs nothing much else that the GP can do -other than say take Imodium which isnât really the solution in my view! I think the Silicolgel I started on Monday is calming it down a little.
Meanwhile, my husband got some more apples down from our tree before those gale force winds blew them down so Iâve been stewing apples for the freezer.
Hope that you soon get an appointment to discuss diet and treatment but mainly that everything calms down for him. I think they say that the fibre increase needs to be done gradually so the body gets used to it?
Thanks for letting me know.
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