Hi- i was wondering if anyone had any advice as I’m completely lost and frustrated and very, very angry and I’m not sure how to process! The short story is the hospital have been reporting my scans as stable when they haven’t been. I knew something was wrong- I was suddenly in more pain in December and I was now having blood transfusion every month and no one could tell me why as my scans were stable. I asked for a review of the scans and I asked for a radiologist to take me through them. Hospital admitted their mistake and apologised! Instead of having a few places in my bones with cancer, I now have widespread throughout spine and pelvis, I now have two parts of tissue infected around upper and lower spine and have extensive bone marrow infiltration. I am unsure what all this means. I am now off treatment as apparently it looks like it hasn’t been working for months and I’ve just had a CT guided tissue biopsy of the spinal tissue to see if the cancer has changed status. I’m so so angry- I’ve been working so hard, I spent months organising going back to work based on stable scans. I’m now in pain and very anxious over the damage and spread that the hospital has allowed to happen. I’ve been flagging things and shouting from the rooftop that something wasn’t right but no one would listen. I’m putting in a complaint which is ridiculous as I shouldn’t have to!
Hi Jo6
Having read your post I can completely understand why you feel lost, frustrated and angry.
Have you had the opportunity to discuss everything with your consultant and to find out what the planned treatment is now?
It might be an idea to talk things through with one of the nurses on the Macmillan Support Line as they might be able to offer advice on what you should do now. It's free to call them on 0808 808 0000 and they're available every day between 8am and 8pm.
Sending a virtual ((hug))
"Never regret a day in your life, good days give you happiness, bad days give you experience"
