New Stage 4 diagnosis - do you have any advice for me?

Hi there, I have just been diagnosed with Stage 4 (advanced) sino nasal cancer, which is in my nasal cavity, around one eye and in the lining at the bottom of my brain. I'm still in shock really - there is talk of surgery for me in October followed by radiotherapy, but it is a rare cancer with a poor prognosis, so it is all a bit uncertain. I have just turned 50 and am married with a husband and 13 year old son. I would be grateful to hear any advice from people about how you have coped with an advanced diagnosis - did things change for you rapidly? Did you keep working if you felt okay? Did you make changes to how you live/ what you do/ eat - anything really. If you stop working what do you do with your time? It just feels like everything I had planned for this year and next is out the window and I don't even know if I will still be here after that anyway. I know there will be lots of different experiences so just hope to hear some back.  

  • Hi mare,

    I think you have hit the nail right on the head. I need to know they are on my side. I'm not stupid I realise there is no cure. I know they probably are on my side it's their job right!

     

    I just remember 10 years ago I had no issues with my oncologist. 

     

    if you want to private message me I don't have a problem with that since your not keen to do it publicly. 

  • Yes Cath,

    I'm happy to chat to you any time. I have sent a "friend" request. 

    Also, it's just occurred to me that there might be reasons for leaving things to go a bit sometimes. Your medical team would tell you more (I am not medical and can only guess). I understood when I had to wait between scans as the treatment I had depended on how fast my cancer was growing, and we couldn't know that until we'd waited to see.

    Good communication of their thinking is essential here isn't it? -so you can understand the reasoning behind everything,

    xxxx

     

  • Hi, where is the drains request. Your right in a person that requires a lot of communication. I'm not one gir sitting nodding my head never have been. The oncologist asked me what I did for a job! I think he was either shocked or frustrated with all my questions. 

  • Hi,

    Is the friend request under Moira Love on Facebook!

  • I tried to send you a message on here, but we have to be friends before we can talk. If you go to your messages on here you'll probably find a friend request from me. I didn't try facebook.

    It will be good to chat I think?

    I have to go out today as I've got the kids visiting, but I will check back on here tomorrow :happy:

     

    x

  • Hi,

    Sorry I've not replied have been yraveoover 60 miles a day for five days to get some radiotherapy. 
    mom going to check on here fir your friend request although I'm not very technical. 

  • Hope things going ok. 

    If you go to mare's message and touch it or her name you should go to another room and press +friend and you should be done to message. Or you should have a small red square on the blue line at top of first page that should take you to friend request. 

    Be thinking of you. Keep positive and sure. 

    Billy 

  • Hello again, it's good to hear from you Cath, 

    The drive and treatment combo must be exhausting for you!

    Once we are in contact on here I can give you my details, but I never share stuff publicly. I am sure the help people can help you to navigate the site if you're having trouble they are very helpful on here.

    And...fame at last! I was in a national magazine last week for Breast Cancer Awareness month.  It's gone to my head! Hahahaha 

    Sending you all warm thoughts from here, and wishing you all the best for your treatments

    Mary

    Xxx

    Ps.

    Thank you Billy

     

     

  • Lol that's fab. I now know someone who is famous. I handled it all pretty well I think but quite bad pain in my hip don't know if that's the radiotherapy ‍♀️I've sent you a private message in reply to your request a friend if I've done it right lol. Please check and let me know. 

  • Hello,

    Yes I have replied to your message. I'm glad you're doing ok. Its tough.

    xxxxx