Hi,
My name is Sara. Last January 2024 my husband was diagnosed with Acute Myeloid Dysplasia. In July of the same year it had progressed to Acute myeloid leukaemia (AML).
My husband has had,two rounds of chemotherapy and it has now gone into remission. However his blood counts have fallen very low and after three months have not risen on their own. The hospital have suspended further chemo and have also told us.That I’d if there is a long break between chemo the NHS will not fund this.
My husband is a young 75. Has anyone else had this problem with their blood counts? Has anyone else heard about the NHS not funding? Thanks
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Hello @dormouse welcome I am so glad that you have found us, I will copy your funding question to the Blood Cancer UK nurses for you first. @BloodCancerUK_Nurses
Someone might be able to share their experiences
Did you ask his team why, and what did they say?
What is the up to date situation?
Gosh a lot must have happened to you both in the last year, how are you both keeping emotionally and psychologically, I found my diagnosis took it’s toll and my husband is a head in the sand type of man.
I find it useful to write down all fears, questions and practicalities before appointments and be pleasantly assertive.
Please do look after yourself as well as you are trying to look after your husband.
I look forward to hearing more about you
Hello Erica,
Thank you so much for your kind response.
Yes it has been a bit of an emotional rollercoaster this last year. My husband contracted two nasty chest infections and sepsis but he has the constitution of an ox!
We did find seeing a new consultant on Monday a bit frustrating. My husband has spoken to her this morning and she explained that she is a myloid consultant,whereas the other one we saw,was just haematology and cardiology.
My husband felt reassured but I am still concerned about his low bloods and this cut of funding, if there is a long gap between treatments.
I do understand ,your husband a bit,sticking his head in the sand. I don’t know if I do that but I try to stay positive all the time and push the negativism to the back of my mind. I’m not sure if I have taken in his diagnosis completely, but I have to admit it just doesn’t seem real. I hope you are responding okay? To treatment keep well…
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Hi @dormouse it took me a very long time to take in my diagnosis, be very kind to yourself.
You say that your husband felt reassured, but you are still concerned which is obviously difficult for you.
Perhaps take it a day at a time (which I know is so, so difficult) and see how it goes with this Myeloid Consultant, her job title sounds right to me.
Give yourself time, those negative thoughts are so natural and they make the questions to ask your husbands nurse or his consultant.
Be very kind to yourselves and please do keep posting, we are here for you
Erica, Thank you for you reply. We are getting over the shock of Monday and my husband is feeling more positive. Which is good. He has bone marrow biopsies on Wednesday, so fingers crossed. I hope you to are keeping well and positive.
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Please do let us know how Wednesday goes, if your husband is anxious perhaps ask him to consider telling his medical team at the time @dormouse
Yes, all is well here, thanks and the sun has just come out