My dad was recently diagnosed with Myelodysplastic Syndrome (MDS), not surprisingly he is dealing with the news in a bad way and not reading any details on the condition or treatment options. This has been hard for the family to deal with, as trying to speak to him either ends up in an argument or a change of subject. It feels like he has given up on life already, he is 69 years old and before his diagnosis was in very good health.
I am wondering if anyone has any advice on how best to deal with the conversation of treatment options, and for him to talk about how he is feeling. I have a large family but at the moment none of us have been able to get through to him.
What a dreadful dilemma. He sounds just like my father, and I think most men find it difficult to open up about their fears and face their mortality. I haven’t personally had to deal with this situation, and others might have some better ideas. The Bloodwise website do have information booklets which you could request and perhaps leave on a table and he might pick the information up when nobody is around, and he doesn’t feel as if everyone is ganging up on him. Have you had any help from GP or the hospital?
You may also like to get in touch with the Bloodwise Support Line which is a Freephone number 0808 2080 888 (open Monday-Friday 10am-4pm) or email support@bloodwise.org.uk
Thank you for sharing your experience regarding your father’s recent diagnosis of MDS with us. I am so sorry to hear and I cannot imagine what your family must be going through during this difficult time.
It sounds like your family are trying to have some conversation around the topic, but still find it rather hard no matter which direction you try and take. Maybe your dad needs some time, until hes ready to talk and face his diagnosis. He must be really scared and hopefully when he is ready, he can come to you. If you would like to have our booklet on MDS sent to you, please let me know and we can arrange for it to be sent out.
The online community is hear if you ever need to speak to us about any issues that may arise in your family.
Hi @NessaD, I really feel for you all. If you are all anything like me then you will all be in shock and so fearful and have such a mixture of thoughts and feelings whirring around in your minds. Perhaps it is too early for your dad to talk to any of you and all you can be is there for him when he is ready. When the time comes for him to go for medical appointments he might (or might not) appreciate some company to go with him and perhaps to make notes. You must feel so helpless and as Pisces56 says the Bloodwise Support Line is there for you as well. I also find this forum very supportive and I hope you will too. Take lots of care of yourself and keep posting.
Hi @NessaD I just wondered how you and your family were doing in the months since you posted, have you been able to talk to your Dad more about his MDS?