This is new to me so I am just trying to find out as much information as possible. My mum is 64 and has just been diagnosed with ET. I think it has come as a bit of a shock to her, especially since she is currently nursing a fractured ankle and wrist as part of a non related incident.
I am aware that there is treatment available and she may well be able to live comfortably with this diagnosis under treatment, but I want to do everything I can to support her.
Any advice from anyone who has been in my position would be wonderful.
Hi @wannabewizard a great big welcome and I am glad that you have found our forum so quickly. You say your mum’s diagnosis has come as a bit of a shock to he, I wonder if it is a bit of a shock to you too.
What you will probably find is that as a family member it does not matter what diagnosis your loved one has your thoughts, feelings and practicalities might well be similar.
Perhaps be led by your mum and ask her what she would like from you.
A hot meal, do the washing, shopping etc.
As she is nursing a fractured ankle and wrist you might well already be doing many practical jobs for her anyway.
The Blood Cancer UK website has a lot of information and booklets on it and if you would like to talk to someone the Blood Cancer UK support line is there for you on 0808 2080 888.
Give yourselves time to get used to the diagnosis and be very kind to yourselves.
Please keep posting
Welcome to the forum and it is great to hear how your are supporting your Mum. It is no wonder there is an element of shock around her diagnosis, may I ask whether you have plenty of information around her diagnosis and treatment? I will add some resources to the bottom of this message just in case.
In terms of supporting you Mum, it may be useful to offer to listen in to her consultations over the phone or in the clinic room? Sometimes another person to listen is useful. Otherwise, general encouragement to ask questions and report any concerns to the team is helpful, she should be allocated a clinical nurse specialist to call (and an out of hours number too), so useful to make sure she has these numbers.
Please do get in touch with the support team if you or your Mum need to talk: Blood cancer information and support by phone and email | Blood Cancer UK
Essential thrombocythaemia (ET) - what is it, symptoms and treatment | Blood Cancer UK
I’ve just been told I have blood cancer | Blood Cancer UK
Hello @wannabewizard welcome to the forum.
Looks like you have had some great information so far. There will be lots more to come I’m sure from fellow members with experiences with ET. I’m afraid I have a different type of blood cancer so have nothing to add other than a massive welcome to the group that non of us really want to be a part of and keep posting , we are all here for you and each other.