Recently diagnosed

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Hi - i've recently been diagnosed with a Chordoma at the base of my skull. Will have surgery in next 6 weeks or so and terrified as some of risks of surgery are pretty extreme. I know its a very rare condition and not sure why im posting here but here i am. Not told my family yet, that is filling me with dread. Am also really scared about COVID as the impact if i get it during treatment is very dangerous, and apparently post operative support might be really impacted due to the current strain on the health service Feeling scared and alone.

Marc

  • Hi  Marc, sorry to hear about your recent diagnosis.  I hope you can gather enough information to give you a better understanding.  With reference to telling your family I know that is a very difficult decision to make. I agonized about telling my family when I got breast cancer 4 years ago. I didn't want a fuss but I also reasoned on the fact that they would need to know as they would find out anyway. I imagined how hurt they would feel if I didn't share with them. It is a no win situation for you. If you don't tell them you will have that guilt hanging over you.  However,  you won't feel any better once you have told them. I felt I had off loaded my burden onto them. When you think the time is right make sure you can direct them to websites which provide practical information so they can understand what you have and treatments available.  I wish you all the best and hope all goes well

    Regards

    Yvonne

  • Hi Yvonne, thank you for your message, i really appreciate it. I have come to the conclusion that I am going to tell them this weekend, i know it won't be easy but like you say I will feel guilty if i dont tell them and i do think they will be hurt if they find out at a later point and that I hadn't told them. Thanks again for taking the time to reply and share your experience with me.

    Many thanks

    Marc

  • Hi Marc 

    Glad to hear you have made a decision.  Once they are over the initial shock you will find they will be able to support you. 

    When I told my family about my diagnosis I had some lovely supportive messages back. After that they kind of let me just get on with it! I was fine with that as I didn't want a fuss and mine was a pretty simple procedure.  (This was not my immediate family,  it was extended family) 

    So, this weekend, like you I have to again tell my close family (mum,brother, sister) that I have just been diagnosed with bone secondaries.  I think of it this way...... we have had the diagnosis and moved up the ladder of acceptance ( well, sort of). When you tell your family they will be on the bottom rung of that ladder and it is going to be hard for them. You may be the one that needs to offer them support initially! But once they move up the level of acceptance they will be there for you.

    I wish you all the best and good luck at the weekend and hope you get your operation soon. On the covid thing, have you managed to get at least one vaccine? If not, if you speak to your gp you may get onto the priority list for having a vaccine before your op. You may feel a little bit more secure following a vaccine.

    Regards

    Yvonne 

  • Hi Marc

    Having read your post earlier in the week, and the following discussion. I hope telling your family has gone well.

    take care

    Liam