Hi. Can someone help us please. We’re trying to understand, as a family, what to expect
My father in law is 87 years old and was diagnosed with Myelodysplastic syndrome (Myelodysplastic syndrome (Myelodysplastic syndrome (MDS))) about six months ago.
He started with Transfusions every two weeks, then they went weekly, then he stared having platelets weekly, he had an infection and spent a month in hospital. Currently he is having two units of Blood and Platelets every Wednesday, and another batch of platelets every Friday. His nose is bleeding constantly and he also has blood in his urine. There is a DNR in place.
This week, the district nurse started visiting and we had a first meeting with the Palliative care nurse. In fairness to Palliative care the nurse said she was going to go away, read his notes further, research the subject further, and get back to us.
We know this isn’t going to end well, but can someone let us know what to expect?
I would imagine it will get to a point where they say they can’t give him transfusions or platelets anymore (they’ve already hinted about that) and he will just become weaker and weaker until he becomes bed-bound and the inevitable happens.
Can someone please let us know if this is about right (I know two cases are never the same). The reason we want to know is that we want to do everything we can to keep him out of hospital or a hospice so he can pass at home, but the lack of information and guidance is making a difficult situation even worse.
Thanks in advance
Billy x
Apologies for the line through. I accidentally deleted this, then I found the text and Copy/Pasted it
Oh @BillyO what a very difficult time you are all going through.
I honestly think perhaps the best thing you can do is to ask these really difficult questions, plus all your fears, questions and practicalities of your father in laws medical team and palliative care nurse.
They know your father and his medical history and as you say his palliative care nurse has gone away to research further.
As you say they might not be able to give you definitive answers as everyone is different.
We are here for you as a safe space to say how it really is for you.
The Blood Cancer UK support line is also there for you on 0808 2080 888
Be very kind to yourselves and look after yourselves
Dear @BillyO,
We managed to edit your post from our end to change the text, I do hope that was okay.
I am so sorry to ready what you and your family are going through! This must be such a difficult time and so unknown.
As you mention no two situations are ever the same so it is difficult to say how things will progress. I would encourage you to have some honest conversations with the palliative care nurses and the hospital nurses around plans and what you should do/who you should call if you need support. Knowing your father-in-laws wishes will also help guide these conversations but it sounds like you already know these.
They may well discuss stopping transfusions if it becomes to much for him to manage in terms of getting in and out of hospital, but these decisions will be made with you all.
It sounds like you are all doing an amazing job of advocating for him and ensuring he is comfortable.
We are very much here for you and if you wanted to talk things through with one of the nursing team here you can reach us on 0808 2080 888.
Take good care of each other,
Heidi J (Support Services Nurse)