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Hello
I am a parent and my 20 year old son who was diagnosed with AML in May, but only told us in August, even tho he still lives with me.
Im hoping a parent on here has been where we are, my son is being very stubborn and not letting us go to any appointments with him, he’s doing all himself only gives us snippets of what is actually happening. He’s having chemotherapy at the moment and want him to have a bone marrow biopsy on Friday, but he’s cancelled it.
Very lost parent don’t know what to do!
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Hi there Cottie, welcome to the forum.
I'm a patient champion here and had a transplant in 2013. Whilst I can't relate directly to your experience, I've been around the forum a few years no and do remember a thread with someone in virtually the same situation. I seem to remember they had a child or relative that was shutting them out and was unhappy about going to appointments. I'm digging through the threads to see if I can find it and will post a link if I manage to turn it up.
As a father of 20 year old twin boys I can imagine how stubborn your son is being. They are at an age where they are becoming independent perhaps, and they want to make their own decisions, which in our eyes might not be for the best.
As time goes on he will hopefully come to realise that he needs your support and if necessary guidance as there will be decisions to be taken at some point. I would guess that you are having to be careful with him not to be seen to be interfering, but he must be able to see how concerned and worried you are.
It will no doubt be very worrying for you and causing you a lolt of stress and anxiety. It may be worth contacting the Anthony Nolan team directly and they may be able to give you advice and support. You can call them on 0303 303 0303
(Mon to Fri 9am to 5pm) or email them at [email protected].
I'll keep hunting for the thread with a similar situation, but in the meantime please ask any other questions you need to and between us all we'll help however we can.
All the best,
Steve
Hello Cottie, that's a really difficult one. As a sufferer myself (AML and sct june 21) and mum of two adult children I can hardly start to imagine where you are. Perhaps helpful to know, during my very long, still ongoing treatment I moved back in with my family after blocking them for quite a while. It was a therapist in the clinic that helped me see the bigger picture and face some relieving facts which I wasn't able to alone. And my family were just too close.
Maybe get some therapy for yourself in this very challenging time.
Maybe very discreetly set up options for your son which he can turn down and maybe at some time in the future can turn to. Trying to be there for him, but not, if you see what I mean. Giving him space and freedom when he feels he doesn't have any.