Hello @MarieCL
Welcome to the forum and thank you for taking time to send in your post
I’m sorry to learn about tour diagnosis, it must be a very difficult time for you and your family.
I afraid I cannot relate directly to your circumstance as I do not have CTCL (I have Chronic lymphocytic leukaemia ('CLL')) but I feel I can relate to the shock of receiving the diagnosis as I received mine less than a year ago so it is still some what raw.
There are many who will have not dissimilar situations like yours so do feel free to reach out to others in the forum, if it helps the link Cutaneous T-Cell Lymphoma may be a good place to start.
If you prefer don’t forget, you can always speak confidentially with our support services team for information and support 0808 2080 888
Please do feel free to let us know how you get on
Take good care of yourself
Kind regards
Mike