@Sisi It’s been a while for me too. Just getting on with life like we’re told to do! I’m so pleased they’ve finally found out what it is your husband has. That’s another 3 monthly check up but at least they are on it! Your well deserved holiday sounds absolutely bliss and it would have done the both of you a world of good! We still have 6 monthly chats with Dr Dan Wiseman and feel fortunate to be doing so. My hubbys last bloods were all normal levels so we’re v happy about that. @Unclejack good that your throat has healed but not so good about your knees. I can totally understand how you never want to have a medical procedure again after your awful experiences. My mum has an arthritic knee so I know the pain it causes. Sending best wishes to all the forum users
Good to hear from you both with such good news about your OHs’ health and a lovely relaxing holiday for you, Sisi, finally achieved after a year or so of tests and turmoil whilst supporting your husband.
Also glad you’re both keeping on with Dr Wiseman’s consultations. It helps to have that additional clinical support.
Lovely to hear from you! Thankyou. So glad to hear you husbands doing well 
And yes, like you feel very fortunate to be able to have Dan Wiseman’s input, really very grateful. Best wishes to you 
Thankyou @ChrissyD 
Holiday was wonderful & we didn’t have to endure scary French toilets at the motorway service stations! 
Travelling via train was fab. Hope all good with you. Lots of love
Dear @Hellodolly,
Of course, if you wish to talk anything through with us at any time you can call us on 0808 2080 888.
Has he got another appointment coming up to talk about the stem cell transplant option, or are they going to see how he gets on with the new medication?
I do hope he is doing ok,
Best wishes,
Heidi J (Support Services Nurse)
Hi @Sisi @Logsie @Lyndam @Gaynor @Pierre @CathyP @Hellodolly and all with Chronic myelomonocytic leukaemia ('CMML')
Just posting a link to a summary of the Chronic myelomonocytic leukaemia ('CMML') meeting last week -especially for those who didn’t make it.
@Lyndam -have I missed anything?! Heat is frying my brain! 
Thanks for this Chris! X
Thanks @ChrissyD for sharing & updating us all. Much appreciated Really hoping we can make the next one 
Best wishes
Thanks @ChrissyD. Much appreciated.
Hi @ChrissyD Yes I think you have covered everything from last weeks zoom meeting. I’m afraid I was not at my best last week having just lost my youngest nephew to cancer, so not very sympathetic. I’m not surprised your Brian is getting fried with this hot weather, it’s getting to much now. I can’t get anything done as it is to hot.
@Lyndam I’m so very sorry to hear the loss of your nephew. My thoughts are with you & your family. My very best wishes to you
Hi @Lyndam
Don’t worry about that. I do understand that the meeting must have been really difficult for you at the moment. I was so sorry to hear your nephew had died … and at such a young age. It does bring other health issues of us older people into perspective, doesn’t it?
My son and family are currently on a cruise through the Norwegian fjords and he just told us the weather was cold and fresh! I yearn to be cold and fresh again -instead of hot and muggy!! At least when you’re cold you can put another jumper on and run about. There seems to be nothing I can do to cool down other than sit in darkened rooms with the curtains drawn and a fan on, drink gallons of cold water and loll about! And my husband and I are really fed up with watering the allotment every other day in this heat! Mind you , we had 500 figs to deal with/give away and courgettes have gone bonkers. Wish I could share! 
Oh @Lyndam I am surprised you made the meeting at all. So sad to lose your youngest nephew to cancer My mind would have been whirring around with so many thoughts and feelings that any meeting would have been a blur. Cancer knows no boundaries.
Really look after and be very kind to yourself and give yourself time.
Hello all, weird news…. Haematology have told me and more importantly my OH that they can’t see any Chronic myelomonocytic leukaemia ('CMML') cells in the recent bone marrow biopsy….. However he has a new disease. Systemic Mastocytosis with a haematological neoplasm. Whether it converted from the Chronic myelomonocytic leukaemia ('CMML') or suppressed it or destroyed it? Who knows?
So I guess I will have to start a new forum discussion just for this. I’m not sure if anyone will join in as it’s as rare as hens teeth. Even the haematologist hasn’t treated it.
So guess it now means I’m going to make fewer posts here on the subject of Chronic myelomonocytic leukaemia ('CMML')
I wish you well.
Hi @ChrissyD
Yes it does bring other health issues into perspective. It makes it harder for us as he did not want a funeral, so no chance to get any closure.
Went shopping today and got caught in a downpour of rain, it was wonderful after all this heat we are having.
I can relate to having to much produce on the garden, we have had so many cucumbers. Managed to give them away, tomatoes as well, and at last the runner beans have decided to pick up. Take care
Hi @Erica Thank you for your kind words. It all happened so quickly, from diagnosis to him passing away was just over 2 weeks. It has been very hard for my sister to accept it. As they say time will heal.
Hope you are okay.
Thank you for your kind wishes.
Hi @Hellodolly
Oh my. Just as you are coming to terms with one diagnosis, another one gets diagnosed, setting you off on another direction.
You’ve probably already found this but this is a comprehensive NHS explanation of mastocytosis and treatment options.
And charity for people with mastocytosis is here https://ukmasto.org/anaesthesia/#gsc.tab=0
As it happens I know of somebody who had both Chronic myelomonocytic leukaemia ('CMML') and mastocytosis so having both is not unheard of. There is a clinical trial at UCLH in London and maybe other centres and perhaps the charity can help you find out more?
I do hope the new treatment will make your husband start to feel better. Wishing you both some respite soon.
Hey Jude, I’ve started a new conversation about the new diagnosis of systemic mastocytosis with an associated haematological neoplasm. As my other half is at the beginning of this as you and some others might be interested.
@Hellodolly So sorry to hear of this new diagnosis. Must have come as a shock for you both. Sending very best wishes to you & your husband