Thank you all! Although I would not wish anyone being in the same situation, it is comforting to know there are, and that we are all doing similar things and it means I have some people to bounce ideas off/keep me on track and share my fears.
I bought a notebook last last week and I have suggested we all write things in it about some of the fun/daft stuff we have done, I'm telling my daughter it's just so we don't forget this stuff, I'm not selling it to her as any sort of memory thing for when I'm gone as that would be too depressing,
It it all still feels a bit unreal though,
I was diagnosed in May but still have had no treatment apart from taking Alendronic Acid for the bone met. And I've had chemo delayed 3 times. First time was because I was talking to Christies about trials, (it's not happening for a few reasons) second time because my Onc said he wanted to try to get more scans before chemo and I looked stable enough at the time, then it got delayed again when the scan results came back as he then said he wanted to try to get biopsies before chemo.
The scans showed, as well as the lung met and bone met I knew about, I also have one just above my collarbone, several small ones dotted in my lung, and something suspicious in my bladder and poss stomach.
Tomorrow and Tuesday I will have biopsies in the areas they can reach, in the small hope that they may have changed from TN to ones with receptors and that I am being giving the most appropriate treatment. It's s very small hope, but you never know!
The fly in the ointment at the mo though is I ended up in A&E on Wed with pneumonia. I am on antibiotics but I can still feel the fluid around my ribs when I lie down, so I'm worried biopsies might get postponed while I still have the pneumonia.
Anyhoooo, that's another story and not the point of my original post in here.
Thanks again all, I'll probably be asking lots more as I go along.
xxxx
