@ChrissyD Thank you so much! 
I hope you can enjoy being in London with your daughter That sounds a lovely thing to do for Fathers Day. Much love 
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@Erica You are so rightā¦3 cheers for our wonderful NHS! 
Lovely for you to see your son. And yes, itās been a crazy ride the last few weeks. The speed with which you have to adjust to different āphasesā is quite incredible! One minute heās being operated on, the next minute heās home! Enjoy the rest of your weekend. Take care. 
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Hi @sisi. Great news your husband is home. Take care of yourselves as I am sure you both must be shattered after the last few days events. Big hugs.
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Hi @Sisi @Lyndam @Logsie @Unclejack and @Erica and all with Chronic myelomonocytic leukaemia (CMML) on Active Monitoring
Just to let you know of the new resource from Leukaemia care - a booklet, Fact sheet and webpage about Active Monitoring
Message from the Publication writer
"Iām pleased to let you know the information has now been published and is available to view, download or order:
- Updated Active monitoring booklet, which is available to order in print for free
- NEW active monitoring webpage
- NEW Factsheet on active monitoring"
Hope the links work!
Chrissy
x
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@ChrissyD Thank you so much for sharing all this fantastic information!! So comprehensive & reassuring! Hope youāre not melting too much in this heat? 
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Hi @Sisi
Itās a great resource and I wish Iād had something like that to read and be comforted by when I was first diagnosed and put onto Watch and Wait -as it was called then!
This heat! As Iāve got older I cannot bear to sit in the sun as I did in my youth!! Iāve got a sweet spot of about 22 degrees C and anything higher than that completely flakes me out! Not helped by doing 3 school pick ups at 4-ish this week!! I now take a shady route through the park!! And the allotment watering every other day 
xx
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@Sisi Howās your husband doing? Hope heās keeping cool ok? London is always a few degrees hotter than us and because weāre on the Thames Estuary, we usually get a bit of sea breeze. Are you near the river?
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Hi @chrissyD. Thank you for this it is very interesting. Will give me reading material for a while.
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Hi @Lyndam
Well that should keep you out of mischief!! Hope all well with you and not struggling with heat?
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@ChrissyD Yes, soo impressed with the new information. I know you were also involved, so well done you 
Weāre near the river yes, altho to be honest it was too hot to go out today! By the time I summoned up the energy it was this afternoon & too hot! 
My husband is doing well thanks. Slowly recovering & getting back on his feet. Although we had a bit of a hiccup on Sunday when he started having some strange visual disturbances & hallucinations So I phoned the vascular ward & they said go to A&E! Oh blimey 
To cut a long story short, we were then advised to see our optician, who then referred us to Kingston eye unit. All in the space of a few days! Apparently the change in blood flow after his procedure can cause some visual issues. And also we discovered that his peripheral vision has been affected / damaged by the past silent strokes. Which makes sense, as Iād noticed some while ago his balance was a bit off. And Specsavers had flagged this up also. The specialist we saw on Tuesday said that his peripheral vision may well improve. Although he hadnāt really noticed any difference! Sorry for long messageā¦but you did ask 
Onwards & upwards! 
P.S. I love in the new active monitoring info the lady that said she calls it āWatch & Liveā
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Hi @Sisi
Your husband is certainly doing the rounds of clinical departments lately!
Letās hope the vision issues do improve with time and/or his brain gets used to the ānew normalā and he can compensate. Donāt want him falling over! 
Yeah I thought the booklet had a very positive tone and some nice quotes-whilst acknowledging that it sort of messes with your head to be told you have a cancer but do not need any treatment!!
Itās certainly lovely being by the water but, despite having lived here all my life, I would not now risk swimming in it! There are lots of hardy women who do swim all year round here in freezing conditions -aptly named The Blue T-ts - which cracks me up every time I see them!!!
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@ChrissyD Yes, a fantastic resource & so well put together!
My husband certainly is doing the rounds Iāve told him to stop now! 
Itās incredible to think that up until about 10 months ago heād barely stepped into a GP surgery, let alone a hospital! Visual issues are fading away each day 
His balance issues were only very subtle & I thought it was just down to his arthritic knee! I noticed when we walked through crowded Waterloo station the other month, he seemed a bit off then. All makes sense now with his peripheral vision being compromised a bit. Weāre definitely working on some exercises to help with balanceā¦so Iām on it! 
Iām glad to hear youāre not one of these crazy swimmers! 
Also, each to their own but I really donāt understand the cold water swimming thing either ! 
Having said that, itās been sooo hot here, I would welcome anything at the moment! Sending lots of love to you x
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Hi @chrissyD. Yes it should keep me out of mischief. I am finding the heat to much at the moment. Donāt know what I have done to my legs but both are painful when walking, Iāve put it down to the weather. Have to have a ct scan next Tuesday as my liver function blood test was to high. My haematologist is trying to work out why as they scanned my liver back in March and that was okay. Now seems they want to look at the pancreas. Just another curveball Chronic myelomonocytic leukaemia (CMML) throws at us I suppose. Hope you are well and not to hot yourself. Take care.
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Hi @Lyndam
Hope your CT scan goes ok and nothing worrying is found. Iām not sure how old you are but, of course, as you get older, other medical āissuesā may start occurring and may have nothing to do with the Chronic myelomonocytic leukaemia (CMML)?! It does cause such a lot of anxiety. 
Iām also currently going through investigations because of the massive IBS flare up I had after a long lasting chest infection and antibiotics (that didnāt even stop the coughing!). Had a CT scan (because I declined an endoscopy because of risk of rupture of my enlarged spleen!) Now, because of some indeterminate lesions in the oesophageal area seen on the scan, Iām being chased for a gastroscopy which I donāt want either - long story but my wonderful daughterās life has been totally ruined by a gastroscopy- so Iām feeling very, very stressed.
Sorry, this has nothing to do with Chronic myelomonocytic leukaemia (CMML) topic but I just needed to unload !
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@Lyndam @ChrissyD Sorry to hear that youāre both under investigations 
Hope youāre walking gets easier @Lyndam. Iām sure the heat isnāt helping. I always find I need to put my feet up in the afternoon in this heat, otherwise they feel like theyāre going to explode!
@ChrissyD Itās not surprising youāre feeling worried, especially with your daughters experience Sending much love & maybe a chocolate magnum if you fancy one! Take care xx
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Ooowww a chocolate Magnum, now you are talking @Sisi @Lyndam @ChrissyD.
I went for some rheumatology treatment at the hospital today and they put me in a single bedded, cool room, it was bliss, I didnāt want to leave.
Look after yourselves one and all.
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Hi@chrissyD. Thatās okay to rant, thatās what the site is for to get things of your chest as well as all other manor of things. I am a few weeks away from being 70. I know you can get lots of things going wrong when you get older, but the haematologist keeps asking me how much I drink. I keep telling them I am t total but they just look at my husband who responds the same. I have never like alcohol and never smoked, so clean living doesnāt work. I have had both gastroscope and colonoscopy since being diagnosed with Chronic myelomonocytic leukaemia (CMML), thereās not much more they can check. I did draw the line at another bone marrow biopsy unless it was absolutely necessary, and asked the haematologist if he had ever had one. His reply was no, and I suggested all staff at the department should try it. Donāt think they will take me up on that one.
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Hi @Lyndam
Oh thatās so annoying when youāre telling a clinician the truth and they donāt seem to believe you! They even write things in your medical records āpatient denied smoking/drinkingā -as though they are accusing you and you are lying about it!! Surely they must have heard of a disease called Non-alcoholic fatty liver disease which is NOT caused by drinking?! As well as a host of other possible reasons?! Grrrr!
As you say, weāve both led blameless healthy lives and still succumbed to various illnesses! Life is unfair sometimes!
Iāve managed to avoid a BMB for many many years after the first 5 and agree that clinicians ought to try it!
Hope you all have a lovely weekend. I made some homemade blackberry and vanilla ice cream with our own blackberries so Iāll slurp away at that to cool-down @Sisi as your magnum seems to have melted in cyberspace! 
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@Erica Oh that room sounds lovely! Hope you ok after the treatment? Sending a chocolate magnum over to you now! 
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@ChrissyD I now have ice cream envy! Forget the magnumā¦please can you send some of your icecream overā¦sounds delicious!
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