So my husband has started cycle two of azacitidine and venetoclax. He had a platelet transfusion just before he started as his eyes were all blood shot and platelets very low. Even though i had to hassel the hospital to check his blood. The nurse was shocked when she saw the haemoglobin was only 65. Platelets were about 12. He’s on day 6 of the second cycle and again the platelets are very low 16 I think. So I guess he will need another transfusion. They also said he had lost 4kg in a week. He looks so tired all the time. He insists on working full time with an hour commute each way. I’m so worried, I wish he would just rest more. I’m sure we can figure out the finances if he stopped work. They did a bmb and the first cycle didn’t do anything. I keep trying to be positive, but feel the odds are staked up against him as his Acute myeloid leukaemia (AML)/Myelodysplastic syndrome (MDS) is most likely caused by previous chemo.
He just seems to want to carry on as normal, and I can’t say anything about it, he gets annoyed if I say he looks tired and should rest. I’m finding it all overwhelming. Maybe someone could give me some advice, as I realise it’s not me receiving all those horrible medications. When he had MM I was positive and hopeful, but now this so soon afterwards.
Oh @LorM it sounds as if it is a tough time for you and I think we all have different ways of coping.
My husband is a head in the sand type of guy and I am the last person that he would listen to, he has a thing about feeling that anyone is trying to control him.
I am not surprised that you are finding it overwhelming, I think it is.
You say it is not you receiving treatment but I reckon you are also on this emotional and practical journey and I bet nobody asks how you are, apart from us.
I find that here is a safe space for me to say how it really is for me and it helps me in some way.
Please do look after yourself as well as you are trying to look after your husband and keep posting
Hi @LorM .
It sounds like it’s a really tough time at the moment and I can hear in your post how worried you are.
Your husband must be exhausted and I wonder if he is working to keep his mind occupied. As @Erica discussed, we all deal with things in different ways.
Have your husbands medical team discussed his work with him. I wonder if they had made any suggestions or just said to do what he is able to do?
I suppose until your husband decides he is to tired to work then there isn’t much you can do which is frustrating. All you can do is be there for him and when the time comes support him in looking at different options.
I hope this forum will be a support to you. Keep posting as you can say how it really is for you.
Take care X
Im a bit confused about how the forum works. I wrote an update, but i must have added it somewhere else. Im not sure how i join into the conversations. I dont really do much posting, do i just click the reply like ive done here?
Hi @LorM
Thanks for your comment - please do always feel free to ask if you have any questions about using the forum.
You are right in that you just click reply, which should open up a text box that you can fill in. Once you’ve finished, you click the red reply button and it should post it. You can also edit posts after by clicking the pencil icon on the top right side of the post.
I can see that you have posted your update about your husband on a different thread that is also yours. Would you like me to copy it over to this thread too?
Another handy thing to know is that if you want to tag anyone into your post, you can do so by using the @ symbol. So, for example, if you had a question about the forum, you can tag me @Ali_BloodCancerUK - then I get a message saying you have done so.
All the best,
Ali