If you, or someone you know, have recently been diagnosed with blood cancer, then this is somewhere you can share any thoughts, feelings and concerns with people who have been where you are now.
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Does anyone know how to handle telling my son, (who is 32, and suffers from paranoid schizophrenia) that his dad has been diagnosed with Myelodysplastic syndrome (MDS)/Chronic myelomonocytic leukaemia (CMML).
My son’s condition is one whereby he manifests everything…e.g. AIDS/COVID/whatever and therefore, he’ll think his dad’s illness is all his fault.
Any suggestions on how to broach this subject?
Regards, Jay
Hi Jay @The_Jaybird
So sorry to hear about your diagnosis ( I presume it’s yours as you speak about your son and his Dad but I may be getting confused!).
It is difficult enough telling adult children about this diagnosis but with your son’s mental health issues and his concerns about things being his fault, it makes that even harder to do.
My suggestion is that you get some printed information about Chronic myelomonocytic leukaemia (CMML) available online from BCUK or Leukaemia Care. You should point out the info about causes of Chronic myelomonocytic leukaemia (CMML) from which your son should understand that Chronic myelomonocytic leukaemia (CMML), like many cancers and blood cancers, is simply caused by bad luck -something going wrong in our bodies which allows cancer cells to multiply. So it’s nobody’s fault. It might also help to watch this video in which an eminent specialist confirms that it is just down to chance.
I hope this helps you in some way. All the best.
Hi @The_Jaybird
I’ve just thought that Jay might be a woman and you’re his Mum so I’m sorry if I’ve got this wrong! 
Hi ChrissyD.
Thanks for the reply.
Yes, I’m female. It’s not myself with the condition, but my son’s dad.
Dad is getting his biopsy results/prognosis this coming Friday, so there’s no point in telling our son anything until then. Who knows what his consultant will come out with? Hopefully something positive we can focus on…if that’s possible.
Jay x
Hi @The_Jaybird
Glad we’ve cleared that up! You’re right. Until you get proper diagnosis, no point in raising your son’s anxiety until you have more information you can give him. The Chronic myelomonocytic leukaemia (CMML) booklet from Leukaemia Care is very clear if your son is likely to trust printed information.
As ever, do come back into this Forum when you have results this week as there is bound to be somebody with similar issues and experience. Plus can you ask your son’s mental health nurses/clinicians for support in how best to broach this with him?
Really hope he is not too distressed by this. 
Hi ChrissyD.
The biopsy was to determine Myelodysplastic syndrome (MDS)/Chronic myelomonocytic leukaemia (CMML).
Dad’s having another transfusion Thursday and haematology consultant appointment is Friday.
And we’ll take it from there.
Jay.
Hello again.
Friday’s results? Way more positive than I’d imagined.
Definitely Myelodysplastic syndrome (MDS). Not certain which subsection yet as they’re obviously growing things in various labs to determine which genes are looking dodgy.
Started dad on weekly injection of Retacrit. Now booked in for a week of Azacitidine injections starting next Monday.
If anyone has any experience of the above, please message me/add to this post… because the side effects conversation keeps popping up. I’m away to find those wrist bands for nausea. Although, I’m fairly certain I could knock one up with a sweat band and a marble?
I have very recently been diagnosed with Essential thrombocythemia (ET). I’ve just started Besremi injections, feeling very overwhelmed
Has anyone decided not to tell their loved one.I made that chouce with my Dad but he made a comment about not being around much longer tonight and later asked me flat out whats this about me dying? They 1st comment broke my heart but i said dont be silly i will be back in an hour.He asked about dying when I came back and was taken totally off guard but he has dementia and I wasnt sure where it was coming from and just told him his cancer has progressed but he didnt need to worry.I hated lying to him its not quite the same as an ommision.I still stand behind my choice( it was made as a group by family,but my suggestion not to tell him).My concern is he is putting it together and Im going to have to keep lying. Am I doing the right thing.Should i tell him? I honestly dont think its going to help but it can make it worse. I am just trying to do the right thing